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Dealing With Your Own Anxiety

Sources for this article include NAMI.org , va.gov (U.S. Department of Veterans Affairs), adaa.org (the Anxiety and Depression Association of America) and caregiver.org. Other sources included the U.S. Department of Health and Human Services, “Identifying and Addressing Family Caregiver Anxiety” by Karen O Moss, PhD, RN, CNL; Colleen Kurzawa, MSN, RN, MFA; Barbara Daly, PhD, RN, FAAN; and Maryjo Prince-Paul, PhD, RN, FPCN. The article “Hidden from view” in Breathe magazine, issue 57, also provided insight.

Are caregivers vulnerable to anxiety?

More than one in five Americans today are caregivers, providing care and support to an adult or child with special needs. That is 21.3 percent of the population.

A study of family caregivers cited above found roughly 38 percent find their situation extremely stressful. Caregivers are a vulnerable population for psychological distress, including anxiety. In fact, the caregiver’s anxiety can even exceed the levels that their loved one’s experience. This study covered caregivers of people with cancer and dementia, but I’m sure the statistics for families dealing with mental illness are similar or even worse.

How anxious are you feeling? Are you managing too many responsibilities? Strain because you can’t control your own life? Fear for a loved one’s well-being? Deal with financial and healthcare coverage stressors? As a caregiver, you may spend many more hours a week providing care than in a regular job. Caregivers report employment problems, health issues, lack of sleep and little time to do the things they enjoy. 

What is anxiety?

Anxiety is the most common form of mental illness in the U.S., affecting 14% of the population. That includes 18% of adults and 8% of children and teenagers. (These figures are from the National Institutes of Health.)

It is a common emotional response to a perceived threat, often accompanied by tension, worried thoughts and physical changes like high blood pressure and insomnia.

Severe and persistent anxiety typically has these aspects:

  1. Extreme fear and dread, even when there is nothing to provoke it
  2. Emotional distress that affects daily life
  3. A tendency to avoid situations that bring on anxiety

How is anxiety different for mental health caregivers?

As we see above, anxiety can be extreme fear without reason. Caregivers for people with mental illness have plenty of reasons to experience fear and ongoing grief, including:

  • Fear of living life without the personality we loved.
  • Grief over our loved one’s lost potential and possible future.
  • Fear of being overwhelmed by the issues surrounding mental illness.
  • Fear of future pain.
  • Fear of losing your own identity and life.
  • Grief over lost plans for retirement.

Once my primary care doctor said to me: “If you weren’t anxious, I’d be worried that you didn’t understand the situation you are in.”

While some caregivers probably do have generalized anxiety disorder, many caregivers are just plain anxious. The study I read was focused on caregivers for people with cancer and dementia, but many of the aspects are the same.

I once attended a retreat for mothers of children with severe mental illness led by Kay Warren. She said: “We receive wounds of many sorts. Some forms of pain and loss we just don’t get over. A soul wound damages the architecture of the soul. What is grief, if not love persevering? The “natural order of things” and the depth of the love impact the grief.”

What are the symptoms of anxiety?

sleepless man

Signs and symptoms of anxiety are similar to the symptoms of depression. They can co-exist.  Among caregivers, the symptoms are:

Neurological: Trembling/shaking, restlessness, headaches, dizziness, apprehension, numbness, tingling, fatigue, poor concentration, nervousness.

Cardiac: Increased pulse rate, chest pain or discomfort, palpitations.

Respiratory: Dyspnea

Digestive: Diarrhea, loss of appetite, nausea, dry mouth, indigestion.

Mood: Nervousness, irritability.

Musculoskeletal: Muscle tension.

Sleep: Insomnia

Skin: Sweating

Urinary: Frequency, urgency.

Do you have high functioning anxiety?

Daily anxiety can affect your health long before it affects your productivity. High functioning anxiety means that you suffer internally from anxiety without it affecting your productivity. People with high functioning anxiety may become more irritable, withdraw socially or self-medicate through alcohol use.

See if these questions reflect things happening to you:

  • Do you worry every day?
  • Are you a perfectionist?
  • Do you suffer from sleep disturbances and muscle tension most of the time?
  • Do you find that your mind is always “on the go,” preventing you from living in the present moment?
  • Are you tired or mentally exhausted most of the time, even after a good night’s sleep?
  • Do you sometimes forget what you were saying or doing?

How to manage your anxiety

Be sure that your doctor knows that you are a caregiver for a person with mental illness so they can test for and monitor anxiety. Many caregivers do not seek out help for anxiety because they are concentrating on their loved ones, giving themselves little or no care.

Remind yourself it’s normal to have fears and anxious thoughts in our situations.

Talk to others who understand. Sharing your fears to a support group helps us realize we are not alone. Therapy can help with marital problems, changed relationships or family issues as a result of the change.

Take care of your body. Caregivers should exercise, get enough sleep, eat healthy meals, take their own medications and get regular check-ups. Walking, biking, yoga, swimming and running can reduce anxiety.

Rest in God. God wants you to experience his compassion during this time. Jesus himself was overwhelmed and deeply shaken as he faced his coming suffering and death at Gethsemane. He said, in Mark 14, “My soul is overwhelmed with sorrow to the point of death.” He knows.

Increase your times of prayer, maintain regular church and small group attendance, and read uplifting materials. “Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.” (1 Peter 5:6-7)

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (Isaiah 41:10)

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)

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What Is Assisted Outpatient Treatment?

Assisted Outpatient Treatment is an attempt to stop the revolving door of hospitalization-release-hospitalization-release for some people with mental illness. This court-ordered treatment is usually for individuals with mental illness who have a pattern of noncompliance with medication.

The first Assisted Outpatient Treatment law, called Kendra’s Law, was in New York. It became law after a person with untreated several mental illness killed Kendra Webdale by pushing her in front of a subway train in 1999.

Some form of this law is on the books in 47 states and the District of Columbia, but it’s not really available everywhere that it’s legal. Connecticut, Maryland and Massachusetts do not have Assisted Outpatient Treatment at all. If you live in any other state, the Treatment Advocacy Center can provide information about your state’s resources.

Since I live in Ohio, I am going to quote from my state’s Civil Commitment criteria (State law 5122.01 (8) (1) to (5). Mentally ill individuals can be subject to court-ordered treatment if they:

  • Represent substantial risk of physical harm to themselves or others OR
  • Are unable to provide for their own basic physical needs OR
  • Have behaviors that create grave and imminent risk to the rights of themselves or others.
  • Are unlikely to survive safely in the community without supervision.
  • Have a history of treatment non-adherence that has led to either:
    • Two hospitalizations in the last 36 months spent in the community OR
    • An act/threat/attempt of serious violence in the last eight months spent in the community
  • Are unlikely to voluntarily participate in treatment
  • Need treatment to prevent relapse or deterioration likely to result in substantial risk of serious harm.

A judge orders Assisted Outpatient Treatment in civil court. The judge also becomes the primary motivator due to the Black Robe Effect. Because they command respect as a symbol of authority, the judge motivates both the treatment system and the individual. Treatment usually takes 12 to 18 months.

If either the treatment professionals or the individual do not adhere to the treatment plan, the judge can:

  • Extend the length of time in the program.
  • Increase the frequency of appearance in court.
  • Order reviews of the treatment program.
  • Pick up the individual for evaluation.
  • Rehospitalize the individual.

Pathways to Getting Assisted Outpatient Treatment

The best way to get someone into the Assisted Outpatient Treatment program is to start talking to doctors when a loved one is in the hospital, especially if the loved one has had an involuntary hospitalization. Ask the doctor to file an affidavit with the court requesting Assistant Outpatient Treatment. Family members also can file an affidavit for mental illness treatment at the probate court.

Another good time is during a transition from jail or prison to the community. Ask the doctor at the jail to initiate this.

Assisted Outpatient Treatment works. The program began in New York, where it is used most extensively. Study results show that those in the program has a 87% decrease in incarceration, a 74% decrease in homelessness, an 83% decrease in arrests and a 77% decrease in rehospitalizations. More information is available from the Treatment Advocacy Center.

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Ways to Improve Compliance

Getting a loved one with mental illness to actually comply with a treatment program … that’s hard. Here are some suggestions from NAMI, Mental Health America and others on ways to improve your chances of success.

Use the LEAP method.  Listen. Empathize. Agree. Parter. This method developed by Dr. Xavier Amador has a research-tested, proven success rate. You can learn more about it on Dr. Amador’s site here. Following the LEAP method, openly discuss the loved one’s complaints about treatment and medication. Try to “normalize” medication issue with our loved ones.

Encourage injectables as treatment.  When your loved one takes an injectable as treatment, they only have to make the decision to take their medicine once a month. With pills, your loved one will have to make that decision every day or, sometimes, several times a day. With injectable, the doctor knows when they don’t come in for the medicine.  Cost can be a big issue, however. 

Avoid calling the medication a treatment for “your mental illness.”  They may take the medicine more easily if you say the medicine “helps you sleep” or “helps you deal with stress.”

Have a workable plan for monitoring medications if your loved one is not dependable about taking them. If your loved one is living with you, you can monitor the medication. Ill people may be too disorganized to do this themselves. Managing their own medication is a higher level skill for independence. Be the one to call in and/or pick up the prescription, have the pharmacy use your phone number, count pills, etc.

Educate the patient.  If your loved one will agree, help them understand how medications work and why it’s important to take them.

Keep a written record of the medications your loved one has taken, the dosages, the results and the side effects. As caregivers, we are the best “historians” of the illness.  This is important when our loved ones change doctors, nurse practitioners, case managers or social workers.

Get a HIPPA release OR call the psychiatrist to tell them what’s happening.

If your loved one is refusing to take medication,  prepare a crisis plan.  Remember that sometimes a relapse is the way for them to understand that they need help.

Medication Adherence Tips and Tricks (from NAMI)

Here are some tips for making medication adherence easier from NAMI.

  • Take medications at the same time every day.
  • Set an alarm on your cell phone.
  • Pair medications with something you do every day. (drinking your first cup of coffee, brushing your teeth, putting in contacts, etc.)
  • Put medication in a weekly pill box.
  • Enroll in your pharmacy’s automatic refill program. Use your phone number.
  • Have the prescriptions mailed to your house.
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How to Talk to Someone Who Has a Mental Illness

When you love someone who has a mental illness, you talk to them. Or, in many cases, you talk at them. Using elements of therapeutic communications, such as reflective listening and I statements, can make the conversations more successful.

Using I Statements

Many of us have heard about using “I statements.” This approach is less threatening to a person with mental illness, who can easily interpret comments as attacks. Rather than saying “You make me mad” or “You did a stupid thing,” you would first identify your own feelings as you express your viewpoint.

I statements usually follow this format: “I feel … when you do …”

  • I feel sad when you ignore me.
  • I feel glad when you take your medicine consistently.
  • I feel angry because you broke our agreement.

It’s doesn’t hurt to practice these statements with others in the family. You may find that your overall communication improves.

Applying Reflective Listening

Reflective listening is a pattern of communications that social workers and counselors often use. It can help you understand what your loved one is saying. It also allows you to comment on their statements without agreeing with them.

The reflective listening formula has four steps:

  1. Start with a tentative opening. (It sounds like … or What I hear you saying is …) This gives your loved one an opportunity to tell you if there’s a misunderstanding.
  2. Identify the feeling involved. The main categories are mad, sad, glad and afraid.
  3. Use a connection word such as about, because or when.
  4. Identify the thought you see.

So the sentence is:

Tentative opening + feeling + (about/because/when) + thought. Such as:

It sounds like you are feeling sad about what she said to you.

I hear you saying that you are feeling mad because of what he did.

If I am hearing you correctly, you are feeling afraid because your friend has cancer.

You seem to be saying that you are feeling happy because your sister is coming over.

I’m not sure I’m following you. Are you feeling ashamed about wanting to move back with your parents?

Using Body Language

Nonverbal communications is powerful. Most of the impression that someone gets from talking to you comes from your body language. When you are talking to your loved one, you want your body language to convey your caring and concern. Some ways to do that are:

  • Hold the person’s hand.
  • Make direct eye contact.
  • Place your hand on their shoulder.
  • Pat the person’s back.
  • Sit close to the person.
  • Lean forward when the person is speaking.

Ask Good Questions

Some things that you can say to keep the conversation going are:

  • Tell me about what happened to you.
  • Go on. Tell me more.
  • What do you see as the problem?
  • What do you mean when you say that?
  • Give me an example of what you mean when you say …
  • How did it feel when that happened?

I’m not sure what the sources are for this overview, as I’ve used it for years. But this is

PEOPLE WITH MENTAL ILLNESSYOU NEED TO DO THIS
Have trouble with reality.Be simple & truthful.
Are fearful.Stay calm.
Are insecure.Be accepting.
Have trouble concentrating.Be brief. Repeat as needed.
Are overstimulated.Don’t force discussion.
Easily become agitated.Recognize agitation. Allow escape.
Have poor judgment.Don’t expect a rational discussion.
Have changing emotions.Disregard the changing emotions.
Have changing plans.Keep to one plan.
Have little empathy for you.Recognize that as a symptom.
Believe delusions.Ignore it and don’t argue about it.
Have low self-esteem.Stay positive.
Are preoccupied.Get their attention first.
Are withdrawn.Initiate relevant discussion.
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Listening to People Who Have Mental Illness

Good communications with people who have mental illness starts with listening well. Really hearing someone’s feelings and thoughts is a great gift of love and respect.

People with mental illness could be experiencing auditory hallucinations, overwhelming feelings of depression, intense anxiety, and cognitive disorganization. So we need to avoid arguments and heated communication.

They may feel lonely, inferior to others and disrespected. You may be able to have an influence on these feelings when you demonstrate your positive regard for them. When you show that you accept them and have compassion for them, you offer hope and understanding.  As a positive benefit, they may respond better to your requests.

What Not to Do: Types of Bad Listeners

This list is from Listening for Heaven’s Sake – Class Notes by Equipping Ministries International. Do any of the listeners below remind you of you? Particularly when you are under stress?

Type of ListenerCharacteristics
The InterrogatorAsks lots of questions
Focuses on the details
Satisfies their own need to know
Focuses on facts rather than feelings
The GeneralGives orders
Takes command or control
Assumes responsibility
Focuses on the outcome
The PhariseeBlames and shames
Condemning outlook
Focuses on the person being “bad”
Says “You should” or “You ought to” often
The LabelerOversimplifies problems
Pigeon-holes people
Believes that putting a name to it equals a solution
Has a quick-fix mentality
The Casserole PersonTries to cover over pain with food
Avoids the unpleasant
Expects kind actions to remove pain
The HistorianFocuses on the past
Can’t remain in the present
Speaks triggered memories
Loses focus on the speaker
The Bumper StickerGives trite answers
Oversimplifies problems
Is quick with clichés

Steps Toward Being a Good Listener

  • Relax and be calm.
  • Minimize distractions.  (Can I turn off the TV?)
  • Make eye contact unless it is threatening.
  • Discuss one topic at a time.
  • Ask for opinions and suggestions.
  • Don’t take it personally when it’s the illness talking.
  • Avoid bringing up the diagnosis.
  • Don’t use sarcasm.
  • Speak simply and directly.

Next time we’ll discuss the basics of therapeutic communications: using reflective listening and I statements.

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Helping Them Cope

Note: This post is adapted from information I learned in the NAMI Family-to-Family program. We highly recommend attending this program to learn more about mental illness.

Having a mental illness and dealing with the world takes enormous courage and determination. As we have previously written, many people develop defensive coping strategies.

These negative behaviors are actually typical for any person with a life-changing or life-threatening illness. (They include irritability, denial, abusive language and resistance to treatment.) For people with mental illnesses, the behaviors are even more counter-productive. This can be very upsetting to you.

So what’s the best way to react? Here are some suggestions from NAMI:

  • Respect and protect your loved one’s devastated self-esteem. Don’t criticize them. Keep nagging and negative remarks to a minimum.
  • Punishment, argument and pressure make things worse.
  • Ignore as much negative behavior as you can. Praise positive behavior as much as you can. People with mental illness are more likely to improve when they can see behaviors earn them approval and recognition.
  • Accept the symptoms of the illness. You don’t punish a child with a stomach virus for vomiting. Know what the symptoms of the illness are, and try to separate that from the person’s behavior. You cannot argue someone out of a depression or delusions.
  • Accept that your loved one may not be able to fulfill a normal role in the family. Reduce your demand for emotional support and “carrying your weight.”
  • Make these allowances, yet treat the person as a regular member of the family.
  • Encourage independent behavior. Allow them to do what they can, which can vary from time to time. But, again, don’t push.
  • Live in the present. You have a right to grieve, and you may need professional help to do so. But don’t live in the past or focus on “what could have been.” One of the best things you can do for your loved one is to accept that they have an illness that makes life harder, but not impossible. This is how it is.
  • Be patient. When our loved ones take steps toward more independence, it’s very scary for them.
  • Be kind to yourself and the rest of the family. This is hard. Don’t criticize yourself or others when you make a mistake. Give everyone in the family some grace.

how the mentally ill cope
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What It’s Like to Have a Mental Illness

Note: Information in the following article came from namigc.org)

It’s difficult to understand what someone with a mental illness experiences, but you can get a better idea by trying this empathy exercise.

Have you ever:

  • Gone for 24 hours without sleep? 48 hours?  Longer?  How did you feel about being awake this long?  How did you look?
  • Dozed off for a second, awakened with a start and didn’t know where you were?  How did you feel? What would it be like to feel that way for a day, a week, several weeks?
  • Lost your sunglasses or car keys and no matter what you did, you couldn’t find them?   Did you feel like screaming?
  • Been driving down the road when suddenly your directions got mixed up?  Say, you confused or reversed north and south. How did you feel?
  • Had a funny little tune going through your mind for a couple of hours or a whole day and, no matter what you did, you couldn’t get rid of it.  How would you feel if that same tune went through your mind for three days, a week or a month?

Now let’s put three or more of these items together.  Say you’d hadn’t slept for three days, you heard the same music going on and on in your head, and you couldn‘t find your keys.  How would you feel?  How would you look?

All these things are experiences from the inner world of people struggling with serious brain disorders.  By thinking deeply about these symptoms, we can feel more empathy and understanding toward those who experience them.

The fact is, even in remission and even when properly medicated, chronic mental illness leaves its sufferers in a devastating limbo.  Many people with mental illness are effectively cut off from the predictable, rewarding, self-fulfilling live involvements that make existence meaningful.  They suffer deeply from their inability to be competent and successful in their daily lives.

This life-constriction threatens our loved ones’ psychological integrity.  It sets up a process where the people with mental illnesses feel they must protect their “core self” at all cost.

Many behaviors that result – refusing medication, rejecting family support and community programs, and disrupting family life, for example – don’t make sense to us. These behaviors are directly related to their struggle to maintain some dignity and self-respect in the face of stigma, failure and shame. It would be kind of us to appreciate that many of our relatives’ behaviors are driven by the need to protect their own fragile senses of self-esteem. 

Psychological Traumas Associated with Any Serious Chronic Illness

Whenever a person has a serious chronic illness …. COPD, emphysema, chronic heart disease, or a mental illness … two things happen to their sense of self.

First, they lose their protective belief that they are exempt from harm. Much of our sense of safety and our willingness to take risks in life rests on a belief that serious harm or real trouble will never happen to us. This has been called “evolutionary delusion” because it’s responsible for a large chunk of human progress. Young people especially have this sense.

Second, they lose their sense of a predictable, dependable future. This results in the use of defensive coping strategies.  These are self-management techniques that are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image are taking a nose-dive. Let’s look at some defensive coping strategies.

Defensive Coping Strategies

  • Self-absorption
  • Irritability
  • Haughtiness
  • Controlling behavior /Manipulation
  • Anger
  • Rejections of friends and family
  • Blaming others
  • Defensiveness
  • Drug and alcohol abuse
  • Doing nothing
  • Resisting change
  • Refusing help
  • Denial
  • Apathy
  • Bargaining
  • Withdrawal
  • Suspicion
  • Dependency
  • Envy
  • Running away
  • Refusing medication
  • Quitting a job
  • Abusive criticism of others
  • Sleeping excessively

From time to time in daily life, all of us will use one or more of these behaviors.  If we are criticized at work … snubbed by someone we thought was a friend … having a fight at home … we may use one of these behaviors if we feel momentarily crushed.  We complain or attack.  We “need a drink.” We get fed up and call in sick.

For us, these are temporary responses when we feel temporarily defeated.  We normally pull out of them quickly.  We turn to our social and personal life structure, finding comfort and reassurance.

Defensive Coping Strategies in Mental Illness

The situation for people with serious mental illness is drastically different.  Their social and personal life structure is vastly diminished. They are facing poverty, stigma, disability, joblessness, and social rejection. They are trapped on a runaway train going the wrong way.

The negative coping strategies become a familiar and reliable way to protect themselves from becoming even more diminished.

It’s impossible to conceive what mental illness is really like without recognizing the fundamental problem of psychological demoralization.

It takes enormous courage and determination to pull up out of these defensive postures of reacting to mental illness.  But it can happen.  Next time we’ll talk about how we can help.

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The Mental Illness Holiday Survival Guide

The holidays can be some of the worst days of the year when your family is dealing with mental illness.  Not only is it TOO DARN DARK AND COLD, but it’s also a time when expectations of being Merry and Bright can seem especially hard for your family.

Why the holidays can be hard

Having a mental illness makes you extra vulnerable to the demands, pressures and expectations of the holidays. We deal with:

  • The demands of the culture, like parties, shopping, baking, cleaning and entertaining.
  • The changes of schedule, which can be really challenging for a person who has a mental illness.  Getting out of normal routine can lead to forgetting meds and getting self-care out of balance.
  • Family functions and crowds that trigger anxiety.
  • Financial stresses because your loved one is not being able to participate.
  • A pronounced sense of the passing of time. Gathering with cousins, friends and family reminds your loved one of all the “normal” parts of life that seem out of reach to him.
  • The noise, which can make the noise in their heads worse.

The stress can make your loved one have more symptoms. In fact, a NAMI study found that 64% of people with mental illness report that their symptoms are worse during the holidays. And that can make you even more anxious.

Make your loved one a priority in planning

Yes, you can make the holidays a little less stressful for your loved one with mental illness. Their health comes first. And you may be surprised to see that this helps your mental health as well.

Any family member who is inconsiderate or otherwise difficult to your loved one should be kept away. I banned a brother-in-law for horrible comments during a holiday dinner. We didn’t make a big deal of it; we just never invited him again. He’s now dead, and I’m still glad I did it.

Set expectations

Let your loved on know the plans ahead of time. Make the holiday as consistent as you can.

For you, accept that your holidays are different now.  If you can get rid of your unrealistic expectations and be honest with your loved one and all the other family members, it will go better. Just remember: You can’t force anyone to be happy.

Know your loved one’s limits … and your own

Is being around family a trigger? Are crowds? You need to be aware of this.

Acknowledge your feelings.  If someone close to you is suffering from a mental illness, it’s normal to feel sadness and grief. If it’s a child, a sibling or a parent, Christmas can hold a lot of memories.

Avoid feeling guilty.  Around the holidays, many people want to be many things to loved ones. We don’t want to hurt anyone’s feelings. So we put pressure on ourselves.  Pleasing everyone is unrealistic. 

At the same time, let participation be your loved one’s decision.

Keep your routine

Try as much as possible to maintain routines like:

  • Sleeping
  • Regular meals and good nutrition
  • Exercising
  • Taking medication
  • Keeping appointments with mental health professionals
  • Attending support groups

Think about the warning signs of relapse.  If you start to see them, encourage them to retreat to a normal routine.

Provide dignity

Help your loved one to keep her dignity. Provide a gift fund or another way to allow her to give gifts, so she won’t feel left out if she has no money.

If crowds or frenzy are a problem, encourage them to shop online. Or offer to help pick up the things they need.

Consider volunteering. The satisfaction of giving to others can help you put your own problems in perspective.

Scan every situation that’s coming up to make sure that your loved one won’t get unwelcomed attention.

Keep the celebration small and safe

Hey, it’s a good excuse to keep the unofficially crazy family members away.  You want a small gathering of your own family.  Period. Otherwise it’s too stressful for your loved one.

Identify what they really want to do.

Don’t overschedule. Pick and choose.  If your loved one will be uncomfortable in a situation, it’s ok not to go.

Encourage your loved one to keep connected and not be isolated.  Spending time with a friend or family member … even just one … can help.

Keep it short. Keep it informal.

If you have to do the Big Family Thing, let your loved one stay home. Big groups can be too much for your loved one, especially when you have to Put On a Happy Face. If you have a large family and lots of traditions, you can encourage your loved one to pick her favorites and let go of the rest.

Setting specific times for family traditions, like baking special food, decorating the house, wrapping gifts or attending community celebrations, gives the person something to look forward to.

If any of your extended family members really want to see your loved one, they know your phone number and where you live. Something private is better.  And try not to be bitter if no one asks. (There’s a reason God chose you to be this person’s lifeline. Not everyone can deal with this.)

When people ask

The best answer I’ve found to the question … How is he? … is “About the same.” That’s tough enough for you to answer.  So please don’t put your loved one in a situation where he or she has to answer the question.

During this time, we may find ourselves at extended family gatherings or at parties with people who do not understand the illness. Some people may be uncomfortable and not know what to say to you. Others may say hurtful things or offer cliché advice out of ignorance. It is helpful to prepare by knowing who may be at a gathering.

When the event is at your house

If you are having an event at your house, discuss it in advance with your loved one so he or she knows what to expect. Accept his limits.  Accept her choices. Acknowledge his feelings. 

If the person wants to be more visible during the holiday, brainstorm some things in advance.  What will he say when asked how he is? What will she do during the gathering? Is there a quiet place to retreat if needed?

Work out a plan. The loved one can walk a dog, or go outside.

If someone offers to help you with any holiday preparation, ACCEPT. 

Finally, don’t drink alcohol, especially if you are around family.

When you go to other people’s houses

Don’t overschedule.  Ensure that the person will be able to do their regular nightly routine.

Tell the person whose home you are visiting what you may need in advance. 

Go in multiple vehicles or take other modes of transportation so you can leave when you need to go.

Please don’t put yourself in a position … helping cook at someone else’s home, for example … where you can’t leave with little notice. If you are stuck, have someone … a sibling or spouse … available to get the person home if needed. 

All your great preparation may result in your loved one refusing to participate at the last minute. And that’s OK. 

Have yourself a merry little Christmas

When you make out your own Christmas wish list, ask for things that will reduce stress, whether it’s a massage, a day trip, a cleaning service or a gym membership. 

Eat right. Avoid the alcohol. Sleep. And write out a list of things that you are grateful for this year.

Live in the now.

I also create my own holiday rituals that are 100% under my control. I celebrate Advent, with a creche, a reading plan and activities that mean a lot for me.

Advent is a time of waiting. We are all waiting for the days when our loved ones will be well, whether here on Earth or in Heaven. You can lift this thought up as you celebrate.

older person's hand and young adults hand
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New Resources to Help Families

For Addiction, Eating Disorders and Mental Health Issues

SouthJerseyRecovery.com is a free web resource providing information about addiction, eating disorders, and mental health issues.

Studies have found that when someone with a depressive disorder abuses alcohol, both disorders are impacted and often become more severe. In the same vein, major depressive disorder is the most common co-occurring mental health condition among those with alcohol use disorder.

To spread awareness to the public, the organization recently published a guide covering depression and addiction where we expand on the connection between depression and drug addiction, treatment options, FAQs and more.  You can find it here: https://www.southjerseyrecovery.com/treatment-programs/dual-diagnosis/depression/

Suicide and drinking are linked, and it is important to be able to tell when someone who drinks may be at risk of killing themselves. You can find that information here:

Alcohol and Suicidal Thoughts

For Children’s Mental Health

We’re previously recommended Nationwide Children’s Health’s programs for families dealing with childhood mental illness, including the On Our Sleeves campaign. The pandemic has worsened the situation, with one in 5 children experiencing mental health issues in a year.

If you would like to learn more addressing the policies and problems that are making it difficult to help children with mental illness, visit the Collaboratory for Kids & Community Health website.

The collaboratory focuses on four main areas:

  • Improving neighborhoods.
  • Addressing inequities.
  • Creating population health strategies to address the national shortage of providers to care for children’s mental and behavioral health.
  • Developing value-based care programs for those with limited financial resources.

For Seniors and Their Caregivers

Caring for seniors, no matter how much we love them, comes with a lot of challenges, including higher levels of psychological stress. This becomes worse when the senior has mental health issues. We will be covering this issue soon on Loving Someone With Mental Illness.

Meantime, caring.com has a caregiver’s guide that covers burnout and stress, including how to identify and manage each. We also discuss respite care options and share a list of helpful resources for caregivers. 

You can see them here:

If you know of other helpful resources, feel welcome to let me know. Thanks!

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Finding Peace in Dark Days

Note: This post also appears on my other blog mindfulchristianyear.com. Because loving someone with mental illness causes so many dark days, I also wanted to share it here.

Suffering is a given in any life. But, for some Christians, suffering is a shock. A sign that God isn’t paying attention. Or a symptom that they are praying incorrectly. The idea that a Christian life is all prosperity and popcorn is widespread … and wrong.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Jesus, John 16:33

How can we “take heart” when pain and sorrow, fear and loss take up center stage in our lives. God is omnipotent. God can do anything. God could fix this in a second. Why does He allow our suffering?

Jesus warned us that we would have trouble on Earth, but He encourages us to remember that He has overcome the world. In fact, He says “so that in me you may have peace” in almost the same breath. So what does that mean exactly when pain, sorrow and loss are center stage in our lives? And how do we get there? I believe some answers come from Paul’s words about his pain and trouble in 2nd Corinthians 12:6-10.

Even if I should choose to boast, I would not be a fool, because I would be speaking the truth. But I refrain, so no one will think more of me than is warranted by what I do or say, or because of these surpassingly great revelations. Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Paul, 2nd Corinthians 12:6-10

This statement makes perfect sense when combined with the idea of a God who consents to Satan’s request for test a person, as He did to Job (Job 1:6-22) and to Peter (Luke 22:31).

God knows that suffering develops humility, a true understanding of who we each are and who God is. Without this depth of awareness, we can’t be in a strong relationship with God. Our trials not only build faith and character; they also open our eyes to the reality of our existence

Jesus prays for us in times of temptation and suffering. For example, He told Peter that He had prayed that Peter’s faith would not fail. It’s notable that Jesus did not pray that Peter would not deny Him. He knew the terrible experience was necessary for Peter and for all who later learned about it.

The phrase “What doesn’t kill us makes us stronger” is not from the Bible. It’s from “Conan the Barbarian,” with the script slightly misquoting Nietzsche. Actually, suffering makes us weaker, which is a good thing.

Why? Because God wants people to see His presence in His Christians (and not just in Paul and Peter, either.) Suffering breaks up the vessel of our self-centeredness, our self-regard. A broken vessel displays the light of God’s presence within to others. Maintaining faith, joy and hope during a serious calamity is the best Christian witness we can ever give.

How do we do that? The good news is: It’s not up to us.

God tells us, as He told Paul: “My graces are sufficient for you.” I believe that this means that God will give us the abundant graces we need to deal with suffering without fear and anxiety, but with His peace and joy. All we need to do is be open to accept these graces.

I have found this to be true in my life. I open myself up to God in continual prayer and thanksgiving, using Christian mindfulness. God fills me up with peace and joy even in the hospital waiting room, in a locked psych ward with a loved one, at the funeral home, on the scene of the accident, in the board conference room and during the dark of the night. It’s not up to me. God is doing it for me and through me.

When we suffer and rest in God’s grace, God responds.

I will give you the secrets of darkness, riches stores in secret places, so that you may know I am the Lord, the God of Israel who summons you by name.

Isaiah 45:3

Kay Warren, co-founder of Saddleback Church, has called this experience “gritty grace.” Maybe the abrasion we feel is good for everyone.

1 in 5 kids has mental illness
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How Children’s Mental Illness Hurts Workplaces

Earlier this year, Nationwide Children’s Hospital released a first-of-its-kind study on how pediatric and adolescent mental health crises impact the workforce. The answer is: Hard. Very hard.

The study is titled “The Great Collide: The Impact of Children’s Mental Health on the Workforce.” Funded by the Nationwide Foundation, it is part of Nationwide Children’s Hospital’s On Our Sleeves movement.

It found that among working parents:

  • 53 percent have missed work at least once a month to deal with a child’s mental health issues.
  • 54 percent have interrupted their work to answer communication about their child’s mental health situation during work hours.
  • 85 percent think it’s a good idea to talk about their children’s mental health issues, but few have done it.
  • Up to 50 percent are thinking about their children’s mental health while at work.

The study also found that working parents under age 40 are more concerned about their children’s mental health and more likely to select jobs offering benefits that give them access to mental health services.

If these numbers seem high to you, it’s because of the secrecy involved in dealing with a child’s mental illness. You don’t call in because your child is sick; instead you claim to be sick yourself. I know this from experience.

During the 1990s, I had a young child with mental health issues. My boss once denied me a raise specifically because of the number of phone calls that I received from my child’s school. I frequently had to go get my child at school due to behavioral problems. (My co-workers joked that I should put a courier slip in her hair on a barrette, so the courier could bring her to the office when needed. That way I wouldn’t have to leave.) I held my breath until 2:30 p.m. when school was out every work day. And that was before we had to start homeschooling for the child’s safety from bullying.

Nationwide is adding resources for parents on OnOurSleeves.org as well as rolling out a program for employers soon. Parents need this help. Therapists rarely have time to help parents with all the caregiving issues around having a child with a mental illness. Yet it’s so, so common.

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Keep Your Own Record

Even today, it’s hard for medical institutions and doctors to piece together a medical record. So it can be helpful to create your own medical treatment record for your loved one with mental illness. That way you have something ready when you need to provide information.

The excellent book “When Someone You Love Has a Mental Illness” by Rebecca Woolis suggests that your record contain information about:

  • Your loved one’s level of functioning before becoming ill.
    • Highest level of school attained
    • Work history
    • Level of basic life skills (cooking, cleaning, money management, experience with independent living)
    • Social skills and relationships with peers
    • Significant achievements
  • Their symptoms.
    • What they are
    • When they began
    • Worst episodes with dates
    • Most effective treatment so far
  • Treatment history.
    • Dates of psychiatric hospitalizations
    • Diagnosis
    • Types of medication used and their effectiveness (with dates if possible)
    • Types of therapy used and their effectiveness (with dates if possible)
  • Your loved one’s level of functioning between hospitalizations and treatments.
  • The names, addresses, phone numbers and emails of all members of the treatment team (psychiatrist, therapist, social worker or case manager).
  • Medical insurance information.

When you are dealing with mental health professionals, you want to appear credible. You make the best impression when you are courteous and respectful of their time. Try to understand that these professionals are under constraints such as:

  • Not being able to be effective with those who refuse treatment.
  • A heavy caseload.
  • Lack of adequate funding.
  • HIPPA and other confidentiality regulations.

Even if the illness is decades long, try to go back through your documentation to create a medical record. It will probably be more helpful than the record that the treatment team has.

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Ask Anything

Loving Someone With Mental Illness is a support group for friends and families of those with severe and persistent mental illness. Meeting twice a month on Zoom, we share our stories, learn more about dealing with mental illness and pray together.

During October and November 2022, we are holding a series of conversations about things we question in our lives. This is a judgment-free space to connect and process questions about things, such as “Why did God allow my loved one to get sick?” and “Does God heal?” These discussions are part of our Alpha series.

Here’s a video about the Alpha series.

If you’d like to join us at Loving Someone With Mental Illness, contact karentwinem@gmail.com.

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Treatments for Mental Illness

Navigating the mental health system can be quite difficult. But once you have your loved one there, what happens?

For severe and persistent mental illness, the best practice is to use traditional psychotherapy or “talk therapy” with medication. If the brain is not functioning correctly, all the therapy in the world can do little good. So stabilizing the brain is the first priority.

What types of medication are used?

  • Antipsychotics reduce or eliminate delusions and hallucinations by impacting the brain chemical dopamine.
  • Antidepressants improve depression by impacting the brain chemicals associated with emotion: serotonin, norepinephrine and dopamine.
  • Antianxiety medication reduces the emotional and physical symptoms of anxiety. This includes meds like Xanax and beta-blockers.
  • Mood stabilizers are medicines that treat and prevent mania and depression. They are most commonly used for bipolar disorder. Examples include carbamazepine (Tegretol), divalproex sodium (Depakote), lamotrigine (Lamictal) and lithium.

What types of treatment are used?

Once the medications are working, doctors and social workers have a variety of options for psychotherapy. In each case, the person works with a therapist in a safe, confidential environment to understand their feelings and behavior, while learning new ways to cope. These types of treatment may include:

  • Cognitive Behavioral Therapy (CBT) is based on the relationship between thoughts, emotions and behaviors. The therapist works to uncover unhealthy patterns of thought that cause self-destructive behavior and beliefs. Once those patterns are identified, the patient can identify them and learn to find more constructive ways of thinking and responding. Used for depression, anxiety, bipolar disorder, eating disorders and schizophrenia.
  • Dialectical Behavior Therapy (DBT) combines CBT with teaching skills in mindfulness, interpersonal effectiveness, emotion regulation and distress tolerance. It emphasizes validation, or accepting uncomfortable thoughts, feelings and behaviors. The therapist helps the person find a balance between accepting themselves and changing by learning new skills and coping methods. Originally developed for people with borderline personality disorder, it is now used for other illnesses as well.
  • Eye Movement Desensitization and Reprocessing Therapy has the patient focusing on two things at once: emotionally disturbing thoughts and an external stimulation, like eye movements. For PTSD.
  • Exposure Therapy involves gradually exposing the patients to their phobia or the cause of their anxiety without causing them any danger. For obsessive-compulsive disorder, PTSD and phobias.
  • Interpersonal Therapy focuses on relationships by improving the patient’s interpersonal functioning. For depression.
  • Psychodynamic Therapy includes free association and open-ended questions. For depression, anxiety, borderline personality disorder and other illness.
  • Mentalization-Based Therapy combines psychodynamic, CBT, systemic and ecological therapies. It’s used for borderline personality disorder because the illness often causes feelings of emptiness or unstable self-image. Mentalizing allows the patient to consciously perceive and understand their own feelings and thoughts. It also allows them to understand more about the feelings and thoughts of others.
  • Therapy Pets help reduce symptoms of anxiety, depression, fatigue and pain.

Next time we’ll cover the best ways to work with mental health professionals and how to keep a treatment record.

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How to Check on a Child’s Mental Health

An urgent public health crisis. Yes, we’ve had quite a few of those lately. But that is exactly what the U.S. Surgeon General’s office called the state of children’s mental health, starting in 2021.

It’s easy to understand why. The national statistics about mental health in children were getting worse before the pandemic. The Center for Disease Control and Prevention announced this year that more than one-third (37%) of high school students reported poor mental health in the pandemic and 44% reported that they felt persistently sad or hopeless during 2021.

And it’s not just the teenagers. ADHD, anxiety, behavioral issues and depression are the most commonly diagnosed mental disorders in children.

1 in 6 children aged 2-8 years has a mental, behavioral, or developmental disorder

Bar Chart: Mental disorders by age in years - Depression: 3-5 years: 0.1%26#37;, 6-11 years: 1.7%26#37;, 12-17 years: 6.1%26#37; Anxiety: 3-5 years: 1.3%26#37;, 6-11 years: 6.6%26#37;, 12-17 years: 10.5%26#37; Depression: 3-5 years: 3.4%26#37;, 6-11 years: 9.1%26#37;, 12-17 years: 7.5%26#37;

Nationwide Children’s Hospital in Columbus started the On Our Sleeves campaign to encourage families to talk with children about mental health issues. One aspect of this campaign is Operation: Conversation, an excellent way to start the school year.

Asking the right questions

By asking important questions and listening carefully, parents, grandparents and others can detect the signs of positive mental health as early signs of emotional problems. Some of the conversation starters include:

  • Did you talk to anyone new today?
  • Did anything happen at school today that you weren’t expecting?
  • What’s your favorite song right now. How does it make you feel?
  • What animal do you think is most like you?
  • What made you proud today?
  • How did you cope with hard emotions today?
  • What is a problem you solved today? How did you do it?
  • What do you do when you want to cheer up?
  • When you feel worried, sad or any, what is going through your mind.

The free, expert-developed resources for starting these conversations, talking with kids about mental health and giving advice are found here.

Although the number of problems are going up, most parents do find indicators of positive mental health, such as:

  • Affection
  • Resilience
  • Positivity
  • Curiosity
  • Persistence
  • Self-control

If you hear something that worries you, you are not alone. (Information about early signs of mental illness in children is found here.) Don’t ignore it. Seek help. If you work with reputable people, you can help your child learn techniques for dealing with difficult thoughts. You also may find a brain chemistry issue so early that it can be treated, allowing your child to experience a happier life.

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The Collected Schizophrenias

Esme Weijun Wang has published a remarkable collection of essays in “The Collected Schizophrenias” that present the experience of severe, persistent mental illness through the eyes of a high-functioning person/patient.

It’s harrowing to read if you have a loved one on the schizophrenia spectrum, no matter what their level of functioning. It gave me nightmares, but also insight. I’m glad I read it. I would caution against reading it at bedtime.

Ms. Wang has been diagnosed with schizoaffective disorder, post-traumatic stress disorder and Lyme disease. She writes about her experiences with those illnesses as well as the societal issues that affect people with mental illness. And her writing is excellent, expressive and vivid.

Her ability to function is beyond extraordinary. It’s a gift from God for the rest of us. She is happily married to a man who understands her condition and is supportive. She has worked at Stanford University in the Department of Psychology as a lab manager. And the chapter “Yale Will Not Save You” covers her experiences as a student there.

She gives a view of what is actually happening to our loved ones that we would not ordinarily have. So I am grateful. But, again, I advise that this is a hard book to read when you have a loved one who is suffering from delusions and hallucinations. She makes the experience so vivid.

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Columbus-Area Respite for Caregivers

Columbus-area caregivers now have a free program that helps both the caregiver and a loved one with mental illness. ADAMH, Concord Counseling Services and NAMI have teamed to provide this respite program for caregivers to all Franklin County, Ohio, residents.

Please Google “mental health respite programs” to find similar programs in your area.

A respite program allows a trained professional to spend time with your loved one so you can do other things. You’ll get a three-hour block per week to yourself so you can enjoy self-care and tend to other responsibilities. Even better your loved ones with mental illness get to enjoy activities they pick and interact with other people safely, with a trained mental health professional nearby.

This video explains the Concord respite program that’s free to all residents of Franklin County, Ohio.

The mental health specialist spends up to three hours a week or 12 hours per month between 7 a.m. and 9 p.m. with your loved one. They can do activities at home or out in the community. Flex funds are available to help pay for the activities. There’s no waiting list at this time.

For more information about the Concord respite program, call 614-501-6264 or click here.

988 is new suicide prevention hotline number
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Now Open: 988 Suicide Hotline

A new national suicide hotline number is now open. Call 988 when you want to prevent suicide.

In Ohio, the 988 number connects to one of 15 designated lifeline call answering points. Trained mental health specialists answer the calls, providing both counseling and direction to resources for mental health care.

The new number is based on the success of 911, which has been used as an emergency number for all types of crises since 1968. Officials hope that sending suicide calls to 988 will take pressure off the 911 system, which sends police and/or paramedics to a scene.

The 988 calls connect people immediately to mental health crisis services. It also improves the information provided. Until the hotline opened this month, more than 40 percent of Ohio’s suicide prevention calls were answered by people from other states who didn’t know the Ohio system and could not give advice about accessing its resources.

The Department of Mental Health and Addiction Services is implementing the new line with federal startup funds of $400 million.

In addition to the designated call line, NAMI Ohio is also asking for the development of a better, more thorough crisis response system, allowing the specialist to help direct people to housing, rehabilitation services and employment services. I agree with this, although I know it will be difficult to get the funding. After all, it doesn’t help much to answer the phone if you can’t direct people to the help they need.

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Who’s Who on a Mental Illness Team

The United States does not have a well-organized system to treat substance abuse and mental illness. Sometimes it’s hard to know who to turn to for your needs. This overview answers the question: Who does what?

Primary care physicians can prescribe and monitor medication, but often prefer that you work first with a psychiatrist.

Psychiatrists are licensed medical doctors with medical and psychiatric training. They can diagnose and prescribe medication.  Some provide therapy.

Psychiatric nurse practitioners have a master’s or PhD and specialized training. They can assess, diagnose, prescribe medication and do therapy. You can usually get an appointment with a psychiatric nurse practitioner more quickly than with a psychiatrist.

Clinical psychologists with doctoral degree make diagnoses and provide individual and group therapy.

Psychiatric or mental health nurses, depending on education and licensing, can assess and treat illness, do case management and provide therapy.

School psychologists can make a diagnosis, provide therapy, and work to provide healthy school environment. My personal experience is that school psychologists do not have enough bandwidth to do an effective job with children who are struggling.

Counselors can help find better ways of thinking and living, as well as help people develop life skills. Some can diagnose and treat.

Clinical social workers has a master’s degree in social work. They make diagnoses and provide counseling, case management and advocacy.

Peer specialists are individuals who have experience with a mental illness and can help others with recovery.

Social workers with a B.A. or B.S. can provide case management, inpatient discharge planning and placement services.

Psychiatric pharmacists have doctoral training and residence training to provide comprehensive medication management. They usually work in a health care system like Veterans Affairs, hospitals, clinics., etc.

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Our Mental Health “System”: A Shameful History

When you are navigating the mental health system, have you felt:

  • Confused?
  • Frustrated?
  • Angry?
  • Insulted?

To say that the United States does not have a well-thought-out mental health system is a great understatement. Here’s a brief review of how we got here:

In the 1700s, mental health treatment began to move from the horrific asylums to hospitalization. By the first half of the 20th century, mentally ill people were usually either at home or in institutions.

The year 1954 introduced the first antipsychotic drugs, which improved functioning for many people.  So many thought that people with mental illness could live outside of hospitals.

In the early 1960s, the Kennedy administration introduced a plan for more humane mental illness treatment.  In 1963, President John F. Kennedy signed the Community Mental Health Centers Act. The program proposed closing the hospitals and replacing them with community mental health centers, where the mentally ill could be treated in homelike settings.  This included strict standards so only individuals “who posed an imminent danger to themselves or someone else” could be committed to a state psychiatric hospital.

Mental hospitals began to close in the mid-1960s. But Congress never approved the funds needed to open the equivalent number of community mental health centers.

President Jimmy Carter’s Mental Health Systems Act of 1980 was passed to continue federal funding for mental health programs.  In 1981, President Ronald Reagan, in The Omnibus Budget Reconciliation Act , repealed that act, eliminating the money needed for these centers.

In 1955, 558,239 severely mentally ill patients were institutionalized at public hospitals (Torrey, 1997). By 1994, by percentage of the population, we have 92% fewer hospitalized individuals (Torrey, 1997).

Today, community mental health centers do provide mental health services. But many people released under deinstitutionalization became their families’ responsibilities.

They also became homeless (26% of homeless have mental illness, according to HUD). Many of them are in prison. People with mental illnesses are overrepresented in prison. It’s estimated that 55 percent of male inmates and 75 percent of female inmates have mental illnesses.  Meantime, the CDC says there are 5.7 million emergency department visits with mental illness as the diagnosis annually.

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Take Action Today

Today is Mental Health Action Day, and we’ve had a bad couple of years.

If you are worried about anyone, getting answers to these questions may show the person needs some extra support:

  • Have things that used to feel easy started feeling difficult?
  • Does the idea of doing daily tasks like making your bed now feel really, really hard?
  • Have you lost interest in activities and hobbies you used to enjoy?
  • Do you feel irritated, possibly to the point of lashing out at people you care about?

If the answers are yes, visiting a counselor for an assessment is needed.

Life doesn’t have to be so hard. You can find more answers in this blog.

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Caregiver’s Guide to Brain Basics

Mental illnesses are brain disorders. Trying to understand the “why” behind an illness or the “how” behind medication requires caregivers to know some detail about how the brain works. For example: What’s a neurotransmitter? What are synapses? And what’s the difference between serotonin and dopamine?

This basic overview, which answers those questions, comes from material on the National Institute of Mental Health’s website. The site contains lots of information to answer your questions about the complexities of mental illness.

NIMH research shows that mental illnesses can be related to changes in the anatomy, physiology and chemistry of the nervous system. When the brain malfunctions, symptoms of mental illness start to appear.

Neurons are the basic working unit of the brain and nervous system, each enclosed by a cell membrane. These highly specialized cells conduct messages. Each neuron has three main parts:

  • A cell body with a nucleus (containing DNA and information the cells needs for growth and repair) and cytoplasm, the substance filling the cell where all the chemicals and small structures named cell organelles reside.
  • Dendrites that branch off from the cell body and are the neuron’s point of contact for receiving chemical and electrical signals (called impulses) from other nearby neurons.
  • Axon that send impulses and extend from the cell body to meet and deliver impulses to another neuron.

Synapses are tiny gaps between neurons where the impulses or messages move from one neuron to the other as chemical or electrical signals.

The brain continues to mature at least until a person is in his 20s. As scientists learn more about brain development, they can see what goes wrong when a person develops a mental illness. One of the mysteries of schizophrenia, for example, is why it often occurs for the first time when a person is in his late teens or early 20s. Many believe scientists will find the secret as they learn more the processes in the brain at that time.

What can go wrong in the brain?

Every cell contains a complete set of DNA, with all the information inherited from our ancestors. As we grow, we create new cells, each with a copy of the DNA. Sometimes the copying process goes wrong, resulting in a gene mutation.

Scientists also study epigenetics, which looks at how environmental factors, such as sleep, diet and stress, can influence our genes. Unlike gene mutations, epigenetic changes don’t change the DNA code. They affect how a gene turns on or off to produce a specific protein.

The role of neurotransmitters

All that we do depends on neurons communicating with each other through electrical impulses and chemical signals. Neurons activate with small differences in electrical charges, called action potentials. The ions (atoms with unbalanced charges) concentrate across the cell membrane and travel very quickly along the axon. (It’s a bit like dominoes falling.)

When the action potential gets to the end of the axon, most neurons release a neurotransmitter, or a chemical message, that crosses the synapse and binds to receptors in the next neuron’s dendrites. So neurotransmitters are key to sending chemical messages between neurons. In mental illness and other conditions like Parkinson’s disease, this process doesn’t work correctly.

Important neurotransmitters include:

  • Serotonin controls functions including mood, appetite and sleep. People with depression usually have lower levels of serotonin. Some medications that treat depression block the recycling, or reuptake, of serotonin by the sending neuron. So more serotonin stays in the synapse for the receiving neuron to obtain. This medication, called selective serotonin reuptake inhibitor (or SSRI) causes more normal mood functioning.
  • Dopamine controls movement and aids the flow of information to the front of the brain, where thought and emotion take place. Low levels of dopamine can result in Parkinson’s disease, which affects the person’s ability to move and causes tremors, shaking and stiffness. Some research suggested that having too little dopamine in the thinking and feelings sections of the brain could play a role in schizophrenia and attention deficit hyperactivity disorder.
  • Glutamate is the most common neurotransmitter. When it is releases, the chances that the neuron will fire increase. So it enhances the electrical flow among brain cells. It also may be involved in learning and memory. Problems in making or using glutamate have been linked in autism, obsessive compulsive disorder, schizophrenia and depression.

Regions of the brain

Many neurons working together form a circuit. And many circuits working together form specialized brain systems. Research into the causes of mental illness tend to focus on these regions:

  • Amygdala activates the “fight-or-flight” response to confront or flee from a situation. Scientists are studying the amygdala’s involvement in anxiety disorders, including post-traumatic stress disorder and phobias.
  • Prefrontal cortex is where the brain’s executive functions are. These include judgment, decision making and problem solving. The prefrontal cortex also works in short-term memory and retrieves long-term memory. It helps to control the amygdala during stressful events. Research shows the people with post-traumatic stress disorder and attention deficit hyperactivity disorder have reduced activity in the prefrontal cortex.
  • Anterior cingulate cortex has many roles, including controlling blood pressure and heart rate. It also helps us respond when we sense a mistake, feel motivated, stay focused on a task and manage emotional reactions. Reduced activity or damage in this area is linked to attention deficit hyperactivity disorder, schizophrenia and depression.
  • Hippocampus helps create and file memories. When it is damaged, the person can’t create new memories. However, the person can still remember past events and learned skills, as well as carry on a conversation, because those activities are in different parts of the brain. The hippocampus may be involved in mood disorders through its control of a major mood circuit called the hypothalamic-pituitary-adrenal axis.

No one expects caregivers to become brain scientists, but having a general understanding of the brain will help when learning about medicines and research. The more knowledge we have, the better.

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Stigma at Its Worst: Schizophrenia and COVID

I am furious about this.

Do you know what the second highest risk factor for dying from COVID is? The highest is old age. The second highest is having a diagnosis of schizophrenia.

This was first reported much earlier in the pandemic. I heard about it. I even mentioned it to an Ohio State University friend who used to head up my city’s health department. But scientists seem to be repeatedly surprised by it. And the government has done basically nothing about it.

Now it’s Year 3, and it’s news on NPR????

If the second highest risk factor for COVID deaths were health disease or lung disease or diabetes, do you think something would have been done to reach out to those folks? Of course. So why was there no effort to help people with schizophrenia?

People with schizophrenia were left off the priority list for help in my state, Ohio, and many others. My loved one with a schizophrenia diagnosis had to wait until people his age were allowed to get vaccines.

NPR interviewed Katlyn Nemani, a neuropsychiatrist and researcher at New York University. She described the initial reaction to the data showing that people with schizophrenia were three times more likely to die from COVID than the general population. It was disbelief.

“They said it must be because people with schizophrenia are already worse off health-wise, or because they have trouble accessing health care,” she said. That turned out to be wrong.

Studies from countries with free universal health care … the United Kingdom, Denmark, Israel, South Korea and so on … came in, also showing that people with schizophrenia were two to five times more likely to die from COVID.

Yet, the CDC didn’t add schizophrenia to the list of high-risk conditions until people began getting booster shots in October 2022. Other countries, like England, Germany and Denmark, put people with schizophrenia on the priority lists for vaccines at the beginning.

Nemani told NPR that this discovery could be good for people with schizophrenia. She said it may mean that the badly understood illness has a component in the immune system or elsewhere in the body. It could lead to new understanding and new treatments … for those with schizophrenia who are still alive, that is.

My own guess? It’s stigma. Far too many people think that the lives of people with schizophrenia do not matter. If they die from COVID, so what?

Schizophrenia is tough enough without the stigma. It affects 24 million people in the world, including 2.8 million in the United States.

This is barbaric. It’s time to fight for people to see the disease as a disease, not a disqualifying condition for living a good life. I am furious. I am sickened. I am sad.

This image of sunlight coming through clouds illustrates God talking to us.
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Talking and Listening to God

“Developing a conversational relationship with God” is the subtitle of Dallas Willard’s book “Hearing God.” Willard was a philosopher and respected Christian “teacher to the teachers” who went to be with Jesus in 2013.

Many of us who love someone with mental illness would like to speak with God. We want answers. And often we want direction.

Willard believed that God still speaks today. In fact, hearing God’s voice fits into the larger context of walking in a close friendship with him.

There is one caution: God speaks mostly to people who obey His teachings and want to do His will. Again: You need to be willing to do what God says before you are likely to hear his voice speaking to you.

As Jesus said, “If you abide in me, and my words abide in you, ask whatever you wish and it will be done for you.” Abiding in Jesus minute by minute through Christian mindfulness puts us in a position to hear God specifying His will. We become as Willard wrote “someone who leads the kind of life demonstrated in the Bible: a life of personal, intelligent interaction with God.”

Feasting on God’s word

The Bible fixes the boundaries of everything that God will say to humankind, Willard wrote. Indeed, God speaks most often during Bible reading and study. Have you ever had a verse jump off the page to you, even though you’ve read it many times? That is God speaking.

But this can also happen while listening to another person, whether it be a sermon or a conversation. I also believe that synchronicity can point the way to a message. If you hear the same verse repeatedly … in Bible study, in a sermon and in a book you’re reading … it may be God emphasizing something to you.

God also speaks through dreams, visions and events. But most of the time he speaks through a small, still voice that can only be heard in quiet. God’s voice comes in a spirit of peace, joy and good will. So God’s voice sounds like Jesus. And we can only know what Jesus sounds like through Bible study.

Seven steps toward hearing God

This summary may help you as you seek to hear God’s voice.

  1. Begin with a prayer in Jesus’ name for protection from evil influences.
  2. Ask the Holy Spirit to help you to listen well.
  3. Remain alert.
  4. Reject anything that is contrary to Biblical truth.
  5. Feel welcome to write down the thoughts that come for further study.
  6. Understand that real communications from God are:
    • Biblically sound
    • Glorify God
    • Advance the kingdom
    • Help people
    • Help you to grow spiritually
  7. Thank God for the time together.

Walking with God in Christian mindfulness is a sweet time of communion. We should expect that God will help us learn what we should know and what we should do.

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Discover Treasure in the Darkness

Several years ago, I went to a retreat for mothers with children who have mental illness at Saddleback Church’s retreat center. Rick and Kay Warren, Saddleback’s founders and senior pastors, know the struggle of parents who have a child with mental illness in an intimate and devastating way. Their son struggled for many years before the illness took his life.

Kay Warren, who led the retreat, told a story about having a dark, no-sleep night. She went downstairs to the office and looked up all the references to dark or darkness in the Bible. She found 25 pages of them in Psalms alone.  When she read this passage, she felt the Lord speaking to her.

“I will give you the treasures of darkness and riches hidden in secret places, so that you may know that it is I, the Lord, the God of Israel, who call you by your name.”

Isaiah 45:3 (NRSV)

This verse has haunted me since. Is it possible that those of us who love someone with mental illness can find treasures of darkness? I studied the verse more, and it gave me even more comfort.

The verse is part of a prophecy, 210 years before the fact, about Cyrus, who defeated Babylon and was instrumental in allowing the Jews to return to Jerusalem. God is talking about treasures of gold and silver that had been buried underground in Babylon.

So more than 200 years later, someone showed the book of Isaiah to Cyrus. He saw his own name and his actions predicted in it. Cyrus understood that his victory and these buried treasures came to him because of the Hebrew God. He decided to release the Hebrews because of it.

Why did God do this for Cyrus? He was a pagan. Some historians of the time wrote that he was haughty and cruel.  This much is implied: Cyrus may have undertaken his campaign of wars for his own motives, but God gave him great success so that the God of Israel could be glorified and the will of God regarding the captive Jews carried out.  When Cyrus read the prophecy, he knew that the Lord, the God of Israel called him by name.

God has called us by name as well. As our walk is deepened with Jesus, our character is deepened. In our situation, the sorrow is too deep for us to fake a relationship with God anymore.

From the Bible we know that not everything that happens in this broken world is God’s will. Just listen to Jesus in Matthew 23:37:

“Jerusalem, Jerusalem, you who kill the prophets and stone those sent to you, how often I have longed to gather your children together as a hen gathers her chicks under her wings, and you were not willing.”

But, as with Cyrus, God can work in difficult situations. God has hidden treasures in the darkness of suffering. Each of us has to ask ourselves: Will I surrender myself to God in the darkness? Will I listen?

“These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold … and your faith is more precious to God than mere gold. So if your faith remains strong after being tired by fiery trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.” (1 Peter 1:7 NLT)

As we know from the Bible, every Christian experiences trouble. The question is how we respond. Sometimes we envy Christians who don’t seem to suffer much. But Scripture and observation can tell us that those Christians may not learn to depend on God in a deep way (2 Corinthians 1:9). Their faith may be shallow, and their ministry skills less developed. Pain produces love in a Christian who is filled with God’s grace.

God brings extensive blessings on those of us who suffer much. Bitter blessings, to be sure. But we learn so much about how God feels about his children. We know that God gives us joy and treasure, even in deep darkness.

During the retreat, Kay Warren pointed out that enemy of our souls wants to separate us from intimacy with God. Satan wants us to focus on our pain, disappointments, cynicism and troubles, in the night especially. He wants us to dwell on the hurt and to believe that God is not there for us.

When this happens, people run from Jesus. And some never find him. I have seen first-hand the people in our situation who rely on themselves and do not have a relationship with the Lord. It isn’t pretty.

So what is the reality of our situation? It is that our child is sick and God is present. We don’t know why or how it will all work out. We don’t know the eternal plan. If God tried to tell us about it, it would be like a person talking to an ant. It’s just not possible for the ant to understand.

We truly do not know the reality of our situation and how God is working in it. As Paul wrote in 1 Corinthians 13:12 (NIV), “Now we see but a poor reflection; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.”  1 Cor. 13:12 (NIV)

We do need to reject the voice of the enemy and establish even deeper intimacy with God. We can gather the buried treasures in the darkness.  I think these treasures may be the thing that Jesus called “living water.” God has put it there for us so that we have what we need to survive and thrive.

Bring your grief and loss, your hopes and dreams, to Jesus in prayer. Spend as much time with Him as you can. As James writes, “Come close to God, and he will come close to you.” God is hurting with you over your loved one’s mental illness. He is inviting you to come, rest in His presence and drink the living water and other treasures of the darkness.

To be in God’s presence, we need to be accessible (or present), responsive and engaged. You can use the acronym ARE to check in on yourself. This intimacy with God will carry you, and even give you joy and peace.

God invites us to pray for healing of our loved one, but we must understand that some other plan may be operating that we don’t get to know about. Kay Warren pointed out that the focus of our intimacy with God cannot be on the health of our children. What has to carry us is our intimacy with God. Your desire for God has to be great, whether or not you are suffering. Frankly, the only way to do that is to ask for the graces and the treasure necessary.

“Let the one who walks in the dark, who has no light, trust in the name of the Lord and rely on their God.”

Isaiah 50:10 (NIV)
file cabinet folders showing types of mental illness
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Mental Illness in the USA: Pandemic Edition

Note: The National Institute of Mental Health, Mental Health America and NAMI have all released statistics about the state of mental health in America. Much reports on the year 2020, the first of the pandemic. Below are highlights from the reports. You can see the full information by clicking on each organization’s link above.

Twenty-one percent of U.S. adults experienced mental illness in 2020. That’s 52.9 million people. The annual prevalence of condition for 2020 is:

  • Anxiety Disorders: 48 million people (19.1% of U.S. population)
  • Major Depression: 21 million (8.4%)
  • Posttraumatic Stress Disorder: 9 million (3.6%)
  • Bipolar Disorder: 7 million (2.8%)
  • Borderline Personality Disorder: 3.5 million (1.4%)
  • Obsessive Compulsive Disorder: 3 million (1.2%)
  • Schizophrenia: 1.5 million (less than 1%)

Fifty percent of all lifetime mental illness begins by age 14 and 75 percent by age 24. About 7.7 million U.S. children ages 6-17 experienced a mental health disorder.

The percentage of people getting treatment continues to be low (46% of adults, 65% of adults with severe mental illness and 50% of youth). The average delay between the onset of mental illness symptoms and treatment is 11 years. And the number of U.S. counties that do not have even one practicing psychiatrist: 55%.

Impact of Mental Illness in 2020

Mental illness and substance use disorders are in involved in one out of 8 emergency room visits (12 million visits). Mood disorders like Bipolar and Major Depression were the most common cause of hospitalization for people under 45, excluding childbirth. People with serious mental illness are:

  • 21% of the homeless
  • 37% of adults in state and federal prisons
  • 44% of adults in local jails
  • 70% of youth in juvenile justice system
  • 15.3% of U.S. veterans

Twenty-five percent of the people shot and killed by police between 2015 and 2020 had a mental illness.

At least 8.4 million Americans provide care to an adult with mental illness. They spend an average of 32 hours per week providing this care, although that seems high to me.

Ranking of States

Mental Health America does an annual ranking of states that show which are doing the best job dealing with mental illness, based on 15 measures. The Top 10 are:

  1. Massachusetts
  2. New Jersey
  3. Pennsylvania
  4. Connecticut
  5. Vermont
  6. New York
  7. Wisconsin
  8. Maine
  9. Maryland
  10. Minnesota

My state, Ohio, fell from No. 11 in the ranking last year to No. 25 because of the large increase in the number of youth who have a mental health diagnosis and are not getting treatment.

988
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988 National Suicide Hotline

A new national suicide hotline number will be available in July: 988.

In Ohio, the 988 number will connect to one of 15 designated lifeline call answering points. Trained mental health specialists will answer the calls, providing both counseling and direction to resources for mental health care.

The new number is based on the success of 911, which has been used as an emergency number for all types of crises since 1968. Officials hope that sending suicide calls to 988 will take pressure off the 911 system, which sends police and/or paramedics to a scene.

The 988 calls will connect people immediately to mental health crisis services. It also will improve the information provided. At present, more than 40 percent of Ohio’s suicide prevention calls are answered by people from other states who don’t know the Ohio system and cannot give advice about accessing its resources.

All this will change with 988. In Ohio, the Department of Mental Health and Addiction Services is implementing the new line with federal startup funds of $400 million.

In addition to the designated call line, NAMI Ohio is also asking for the development of a better, more thorough crisis response system, allowing the specialist to help direct people to housing, rehabilitation services and employment services. I agree with this, although I know it will be difficult to get the funding. After all, it doesn’t help much to answer the phone if you can’t direct people to the help they need.

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Loving Someone With Mental Illness Support Group

Loving Someone With Mental Illness is a Vineyard Columbus support group that’s open to all. We meet at 7 p.m. Eastern Time on the first and third Thursdays on Zoom. Meetings last about one hour.

We share, have a brief teaching and pray for each other. The conversation is confidential. The teachings include practical information about helping loved ones with mental illness. We also include faith-based teachings on how to walk with Jesus through this difficult situation.

As leaders of the group, my husband and I have loved ones who have diagnosed mental illnesses. The group has been in existence for more than 10 years. You are welcome to attend regularly or whenever you feel the need.

To obtain the Zoom information, feel welcome to email karentwinem@gmail.com

sad caregiver at Christmas
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Holiday Tips When Someone You Love Has a Mental Illness

The holidays can be some of the worst days of the year when your family is dealing with mental illness.  Not only is it TOO DARN DARK AND COLD, but it’s also a time when expectations of being Merry and Bright can seem especially hard for your family. The stress can make your loved one have more symptoms, and that can make you even more anxious.

Here are 14 tips to handling the holidays. Some ideas were suggested by an excellent book:  “When Someone You Love Has a Mental Illness: A Handbook for Family, Friends, and Caregivers” by Rebecca Woolis.  Others are things I’ve learned, often the hard way, over time.

  1. Accept this ain’t gonna be pretty.  If you can get rid of your unrealistic expectations and be honest with your loved one and all the other family members, it will go better.
  2. Help your loved one to keep her dignity. Provide a gift fund or another way to allow her to give gifts, so she won’t feel left out if she has no money. Scan every situation that’s coming up to make sure that your loved one won’t get unwelcomed attention.
  3. Hey, it’s a good excuse to keep the unofficially crazy family members away.  You want a small gathering of your own family. Period. Otherwise it’s too stressful for your loved one.
  4. Keep it short. Keep it informal.  If you have to do the Big Family Thing, let your loved one stay home. Big groups are too much for your loved one, especially when you have to Put On a Happy Face. And do your own celebration. 
  5. If any extended family members really want to see your loved one, they know your phone number and where you live. Something private is better.  And try not to be bitter if no one asks. (There’s a reason God chose you to be this person’s lifeline. Not everyone can deal with this.)
  6. The best answer I’ve found to the question … How is he? … is “About the same.” That’s tough enough for you to answer.  So please don’t put your loved one in a situation where he or she has to answer the question.
  7. If you are having an event at your house, discuss it in advance with your loved one so he or she knows what to expect. Accept his limits.  Accept her choices. Acknowledge his feelings. 
  8. If the person wants to be more visible during the holiday, brainstorm some things in advance.  What will he say when asked how he is? What will she do during the gathering? Is there a quiet place to retreat if needed?
  9. Tell the person whose home you are visiting what you may need in advance.  Please don’t put yourself in a position … helping cook at someone else’s home, for example … where you can’t leave with little notice. If you are stuck, have someone … a sibling or spouse … available to get the person home if needed. 
  10. All your great preparation may result in your loved one refusing to participate at the last minute. And that’s OK. 
  11. If someone offers to help you with any holiday preparation, ACCEPT. 
  12. When you make out your own Christmas wish list, see if you can ask for things that will reduce stress, whether it’s a massage, a day trip, a cleaning service or a gym membership. 
  13. Eat right. Avoid the alcohol. Sleep. And write out a list of things that you are grateful for this year.
  14. A nice thank you card to people who have been helpful to your loved one personally or professionally is always good.
job interview sticky note
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Jobs for People With Mental Illness

Note: The sources for this post are NAMI.org, southeast.org, ood.ohio.gov, “When Someone You Love Has a Mental Illness” by Rebecca Woolis and my own experience working for a program that linked jobs to people with mental illness.

Families of people with mental illness frequently pin much hope on their loved ones getting jobs. It can even become almost a fixation. “If he would just get a job …” There’s often hope that a job will lead to more stability, but it usually has to be the other way.

Unfortunately, many people with mental illness are too ill to function in the workplace. They lose job after job, not because they are difficult, but because they are too ill.

However, once a person is on a treatment plan, symptoms can reduce. Increased stability makes it more possible for the person to have a positive work experience. Others can never deal with the stress of a full-time job, which can make symptoms worse. But they may be able to work part-time or on a volunteer basis, instead.

What the Law Says

As we said previously, the lack of sufficient funding for people with mental illness has a big impact on their families. There’s not enough money to hire enough case managers, social workers and vocational counselors. So families often have to get involved to ensure the system works for their loved one.

The first step to getting involved is understanding what the Americans with Disabilities Act (ADA) says. And what it does not say.

Most government regulations define an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more life activities: walking, talking, hearing, seeing, learning, performing manual tasks, caring for oneself, thinking, concentrating and interacting with others. This applies to most people with severe and persistent mental illness.

Title 1 of the ADA covers private employers with 15+ employees, state and local governments, services funded by the government, labor unions and employment agencies. It prohibits them from discriminating against qualified individuals who have disabilities in hiring, firing, advancement, etc. The law does not cover employers with less than 15 employees.

The law says employers may not ask prospective employees about the existence, nature or severity of a disability. What they can do is ask about the prospective employee’s abilities to do the job. (Remember: The law protects qualified people with disabilities.) And none of this applies if the person has an active substance abuse problem.

The ADA requires that employers provide reasonable accommodation to the known mental limitations of an individual with a mental disability unless it would impose an undue hardship on the employer’s business. Undue hardships are due to significant difficulty or expense to the employer based on size, financial resources, etc. 

Reasonable accommodations include job restructuring, part time or modified work schedules, reassignment to a vacant job position, and modification of training materials.

The ADA also impacts colleges and universities. It can require them to restructure exams and materials. Many universities and colleges have offices for disabled students that help them get reasonable accommodations.

Returning to Work Gradually

One pathway to returning to working is to move through a system that gradually requires more responsibility and work skills. This can mean starting as a volunteer in an organization with tasks and required hours.

Then, if this works, vocational rehabilitation counselors can help the person find supportive employment, maybe even part-time. In supportive employment, the employer knows that the worker has a mental illness under treatment. This helps the employer to understand if problems arise and to contact the vocational counselor.

Finally, once a person has the workplace skills and dependability needed, they can get a job.

Getting a Job in Ohio

Since I have lived and worked in Ohio, it is the system I know. Other states’ systems may vary.

The Ohio Bureau of Vocational Rehabilitation provides people with disabilities the services and support to get and keep jobs. The bureau’s staff does these things:

  • Evaluation and treatment of an individual’s disability
  • Information and referral services
  • Vocational counseling and training
  • Job search and job placement assistance
  • Educational guidance (tuition resources and other support)
  • Transportation services
  • Occupational tools and equipment
  • Personal attendant services (reader, interpreter, etc.).

The bureau customizes its services for each person using assessments and one-on-one meetings with professional vocational rehabilitation counselors.

After an application is completed and submitted, an interview is scheduled between your loved one and a counselor. You or another friend or family member may accompany your loved one to the interview. A counselor will talk about career goals, work history, educational background, disability and the services necessary to reach an employment goal.

Eligibility for vocational rehabilitation services is based on four factors:

  • The individual has a physical, cognitive, or mental impairment documented by the appropriate qualified professional (doctor, psychologist or other).
  • The documented impairment causes a substantial impediment (barrier) to employment.
  • The person can benefit from vocational rehabilitation services that lead to an employment outcome.
  • The person requires vocational rehabilitation to prepare for, secure, retain or regain employment

The vocational counselor will be honest if they feel that your loved one is not ready for employment. How much you have to help your loved one with the meeting is a part of that, whether it is said or not. If your loved one can’t get up to go to the meeting or can’t answer the questions without your help, he or she is probably not yet ready for a job.

When your loved one is determined eligible for services, an Individualized Plan for Employment (IPE) is created with the counselor. The IPE is an agreement between your loved one and OOD describing services that will be provided according to your loved one’s choices. Your loved one may be responsible for some costs of the vocational rehabilitation plan, especially college tuition.

When your loved one is ready for employment, the counselor and other OOD staff will help them prepare for the job search. The counselor can offer information on accessing public transportation (if available in the community) or arranging for private transportation. The counselor also can help your loved one with job site modifications for accessibility and efficiency.

They also may be able to set up supportive employment, which can transition to a regular job where people are not told about the illness.

OOD also can help your loved one keep the job if they are having trouble working because of their disability. The counselor can work with your loved one and their employer to determine the services necessary.

In Columbus, Southeast Vocational Services, formerly COVA, is another vocational services program.  I served on the board of this organization, which works with everyone from people with PhDs to those with entry level skills.

Its Transitional Employment program or “Project Work” provides temporary employment to people with a history of severe and persistent mental illness and substance abuse disorders. People get up to 1,000 hours of paid employment services within a 12-month period with the goal of moving from transitional employment to permanent employment full or part-time.

Southeast also offers benefits counseling and re-entry support for people leaving prison. Call Southeast at (614) 294-7117 to ask about it.

Filling out applications

It’s best to work with a vocational counselor, social worker or case manager to fill out applications for jobs. Legally, your loved one only needs to elaborate on the diagnosis if it impacts the ability to do the job. Otherwise, they should not volunteer information about their medical history.

They should tell the truth about their employment history. (Again, this is where recent volunteer jobs can come in handy.) The counselor can help with good answers to explain the gaps in the history.

You can practice with your loved one as a coach for the interviews. They may be anxious and fearful, so a practice … even a dress rehearsal … helps. Help your loved one with the appropriate dress. You can fill out the applications together and make copies in case they get lost or damaged. You also can use relatives who have knowledge of the loved one’s level of responsibility for references. If your loved one has had volunteer experience, those individuals also may make great references.

Getting back into the work world can be a great challenge. If benefits are involved, be sure to learn what the impact will be. May God bless you and your loved one in this effort.

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Housing for People with Mental Illnesses

Note: Sources of information for this post are NAMI.org, southeast.org, ood.ohio.gov, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, and my six years working in an organization that provided housing for the mentally ill.

The lack of safe and affordable housing is one of the most powerful barriers to recovery from mental illness. When this basic need isn’t met, people cycle in and out of homelessness, jails, shelters and hospitals.

I agree with a philosophy called Housing First: Having a safe, appropriate place to live can provide stability to allow people with mental illness and/or substance abuse to stabilize and recover. Unfortunately, this housing is relatively rare. It takes organization and effort to get someone into the system.

As we all know, there’s not enough funding to cover the needs of people with mental illness. If the funding existed, case managers, social workers and vocational counselors would be handling housing and money issues for our loved ones. Since there isn’t enough money to go around, families often have to get involved.

Because of this, my No. 1 tip in dealing with the system is to make friends with a social worker. I met social workers at NAMI family support groups and events. This was invaluable in helping me understand how the system REALLY works. I also got excellent advice about where my son should be placed on a waiting list for housing.

What the Law Says

Several pieces of federal legislation prevent discrimination against people with mental illness in employment and housing. The most important in obtaining housing is Title VIII of the Civil Rights Act of 1968 (the Fair Housing Act). For most residential buildings (except some small owner-occupied buildings), this law forbids discrimination, such as refusing to rent or sell, denying that housing is available, and renting or selling on different terms.

That said, a history of arson and/or sexual assault usually keeps individuals out of housing for people with mental illness. Housing for people with mental illness is usually called housing for the disabled, in part to keep the neighbors from fighting it. People who are currently homeless usually get more help from organizations than those who are not.

Obtaining Housing

Many people with a serious mental illness live on Supplemental Security Income (SSI), which averages just 18% of the median income and can make finding an affordable home near impossible.

Housing options range from completely independent living to 24/7 care. The type of housing that is right for your loved one can depend on whether they need assistance paying bills, cleaning and making appointments or require no assistance at all. Here’s a look at some of the housing available.

Supervised Group Housing: Trained staff members are present 24/7 to provide care and assistance with things like medication, daily living skills, meals, paying bills, transportation and treatment management. These group homes provide their residents with their own beds, dressers and closet space, and shared bathrooms and common areas. This is the best type of housing for people experiencing a serious mental illness which may affect their ability to perform their daily tasks.  There’s virtually none of this in my part of the country, central Ohio.

Partially Supervised Group Housing: Some support is provided for the residents, but staff isn’t there 24 hours a day. The residents can be left alone for several hours and are able to call for help if needed. People who choose to stay in these group homes can perform their daily living tasks independently or semi-independently, help with cooking and cleaning and may even hold a part-time job or participate in a day program.

Permanent Supportive Housing: Supportive housing provides very limited assistance. The residents of these homes live almost independently and are visited by staff members infrequently. Community mental health center and social workers on site to help. Health care comes in.

Rental Housing:  Rent can be paid for in full by the individual or subsidized by a third party, such as the government or a non-profit agency. Someone who chooses this type of housing can take care of all their basic needs like cooking, cleaning, paying bills and managing their medication. They also may have a job and have or be seeking custody of children. If this is the right type of housing for your loved one, then they will still most likely work with a caseworker to manage their recovery.

Affordable Senior Housing: When your loved one becomes 55 or older, they usually qualify for affordable senior housing, such as offered by National Church Residences in 25 states. This housing for low-income seniors has no supportive services.

Ways to pay

Section 8: The United States Department of Housing and Urban Development (HUD) provides a number of housing assistance and counseling programs. The Housing Choice Voucher Program (Section 8) is the federal government’s program for assisting low-income families, the elderly and the disabled. HUD also helps apartment renters by offering reduced rents to low-income residents. Under this program, a renter pays 30 percent of their gross adjusted income for housing and utilities. The landlord then receives a voucher from the federal government which covers the remainder of the rent.

Section 811: The Supportive Housing for People with Disabilities Program (Section 811) is a federal program dedicated to developing and subsidizing rental housing for very or extremely low income adults with disabilities, like a chronic mental illness. The biggest difference between this program and similar ones is that it provides housing specifically for the disabled and ensures that all housing has access to appropriate supportive services like case management and employment assistance.

Applying for housing

If you can get a social worker or case manager to help fill out applications for jobs and housing, do so. You can practice any interview with your loved one. Interview tips include:

  • Don’t volunteer information about medical history.
  • Do not lie about job history, including positions held or lengths of time worked.
  • If asked about gaps in employment history, you can say “I was recovering from an illness,” “I was participating in a vocational rehab program” or “I was taking some classes.”
  • If there’s concern about ability to pay rent, you can say, “I have a guaranteed disabilities payment.”

Co-signing a lease makes you legally responsible for making sure the rent is paid during the period of the lease. Before you decide to do this, assume that you will pay all the rent and look at how that will impact you. Make your decision based on that. You also may become responsible for damages to the apartment, so be aware of that as well.

Housing in Columbus Metro Area

To apply for Community Housing Network housing, please call the Community Housing Network Intake Department at 614-487-6700. CHN has developed and manages more than 1,200 apartments. CHN provides rent subsidies to an additional 400 residents renting from private landlords. CHN also provides all customary property management.

National Church Residences takes its residents through Community Shelter Board, so call there.

To apply for Unified Supportive Housing System, apply for Alcohol, Drug and Mental Health Board of Franklin County housing, go to the Community Housing Network website, complete the CHN USHS Housing Request and submit to the CHN Intake Department.

Housing providers include:Alvis, Equitas, Community Housing Network, Maryhaven, National Church Residences, Volunteers of America of Greater Ohio, YMCA, and YWCA. These organizations usually take the homeless first. Ways to be homeless can vary, including couch surfing, or staying for one friend after another.

Next time we will talk about processes for getting a job when your loved one is recovering.

the road to recovery
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Recovery: How Do We Get There?

Note: This information comes from my own lived experience, notes from various seminars I’ve attended and “Grace for the Afflicted: A Clinical and Biblical Perspective on Mental Illness” by Matthew A. Stanford.

No matter how difficult the circumstances are, people who have mental illness may recover. In fact, between 60 percent and 80 percent of people with mental illness who get and stay in treatment show recovery.

Mental illness is a chronic condition, meaning we can manage symptoms but not cure the disease. So what does “recovery” mean?

The Substance Abuse and Mental Health Services Administration defines recovery as “a process of change through which individuals improve their health and wellness, live a self-directed life and strive to reach their full potential.

What does recovery look like?

For people with mental illness, it means going from Distress to Stability to Function to Purpose. For you, it means moving from Caregiver to Manager to Partner to Family.

The process is hardest on Americans because of our culture

Mainstream American culture values individuality and independence more than any other culture. This can cause U.S. caretakers to think caring for an adult is unusual, while it’s accepted as part of life in other cultures.

Recovery requires a holistic recovery effort that takes months or years, not days or weeks. Here are some of the issues that need to be addressed:

Physical needs

Sleeping well: Up to 80 percent of people with mental illness have chronic sleep problems as opposed to 10 to 18 percent of people without. The most common issues are insomnia and late insomnia. This is important because sleep deprivation can result in suicidal ideation, paranoia and agitation. To sleep well, encourage your loved one to try these tips:

  • Have the same bedtime with same routine every night.
  • Reduce caffeine.
  • Talk to their doctor.
  • Take effective medication.
  • Learn relaxation techniques.

Eating healthier

Doing exercise such as walking or gardening

Emotional and mental needs

Developing healthy thinking patterns: Your loved one’s therapist can work with them until they maintain healthy thinking patterns. Some things they need to learn are:

  • How to suppress negative thinking
  • How to accept a negative situation
  • How to recognize cycles and triggers
  • How to take a preventative approach when a relapse seems likely

Doing activities that heal the brain: Research suggests that active mental activities have a healing effect on the brain. Watching TV or movies are passive activities, which do not help. Active mental activities include:

  • Painting and drawing
  • Reading
  • Photography
  • Music
  • Gardening
  • Word games or puzzles

Living a structured life: Daily and weekly routines also reduce stress and bring a sense of safety.

Spiritual needs

Discovering hope in Jesus: We can help our loved ones understand what they mean to God. People with mental illness often feel that God doesn’t love them or that their faith isn’t strong enough. You may be able to help them to understand their identity in Christ. Even heroes of faith like David (Psalm 13), Job (Job 3), and Jeremiah (Lamentations 3) struggled with times of intense hopelessness. Encourage your loved one to share their feelings, requests and gratitude for what is good in prayer.

Finding purpose: Your loved one has a purpose in God’s plan that is just as important to God as everyone else’s. In fact, their heaviest cross … a mental health situation … can be an opportunity for God to manifest in their lives.

Growing spiritually: Focus on God’s love and your loved one’s identity in Christ rather than working on scriptures that focus on sin. Brief daily encouragements from the Bible are better than in-depth Bible study. Encourage them to check with you or others when they think they are hearing directions from God’s voice. Worship is good, but it should not be too stimulating or overwhelming.

Living in community: My church, Vineyard Columbus, has a One-Minded in Christ support group for people with mental health diagnoses. Check to see if you can find something like this in your community.

Relational needs

Stay connected to a few trusted and supportive people: Supportive friends and family are essential to recovery, but the friends and family also need the support of others. Some of the best ways you can help are:

  • Learn to resolve conflict, to defuse your own tension.
  • Learn to validate emotions.
  • Learn to affirm their faith in Christ.
  • Help them find opportunities to serve.

Recovery is possible. As we hope and pray, let’s take these steps to help our loved ones.

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Taking Care of You

As a caregiver, you’ve heard this analogy endless times: Put on your own oxygen mask before you help others. It’s true. Caregivers need times of rest … and reflection.

God urges us to rest in both the Old and New Testaments.

“Six days you shall labor, but on the seventh day you shall rest; even during plowing season and harvest you must rest.”

Moses, Exodus 34:21

“Come to me all you who are weary and burdened, and I will give you rest.”

Jesus, Matthew 11:28

God taught us that rest is a very important Christian concept. We are taught to be obedient in having a regular Sabbath, inclusive of all people and animals in our household, even when it’s the busiest time for making money. God gives rest as a gift to his people in this life and in eternity.

What’s stopping you?

The Family Caregiver Alliance reports that a caregiver between the ages of 66 and 96 who is experiencing mental or emotional strain has a risk of dying that is 63 percent higher than that of people that age who are not caregivers. Despite this scary statistic, caregivers are less likely than others to take care of themselves. The Alliance says that we don’t get enough sleep, have poor eating habits, don’t exercise, don’t stay in bed when we are sick, and don’t go to the doctor when we should.

If that isn’t enough, the Alliance says an estimated 46 percent to 59 percent of us are clinically depressed.

If you collapse, your loved one collapses. So ask yourself why you don’t take care of yourself. The Family Caregiver Alliance offers these questions to consider:

  • Do you think it’s selfish to put your needs first?
  • Do you become scared when you think about what you need? Do you know why?
  • Do you have trouble asking for help?
  • Do you think you need a treat (food, cigarettes, alcohol, a Netflix binge, etc.) because of your caregiving?

Pray through these questions with God and see what you find out. I believe it is God’s will that we take care of ourselves, but I know how hard that is to do. I fail often at it.

Rest and reflection go together

Many psalms, including Psalm 23, talk about rest in a reflective manner. As we are resting, we have the opportunity to look on our lives. Sometimes we are afraid to do that, afraid that the trauma of our loved one’s mental illness is too devastating. Afraid that, if we start crying, we will never stop.

That’s easy to understand. Yet resting and reflecting may give you more energy and more peace of mind for whatever you are facing when you do both regularly.

Taking care of yourself … getting enough sleep, taking a Sabbath, eating nutritious food and moving your body regularly … makes you stronger physically. Spending time with God makes you stronger mentally, emotionally and spiritually.

Look for God’s presence in your life

A great way to pray is to look for God’s presence in your life. More than 400 years ago St. Ignatius Loyola encouraged prayer-filled mindfulness by proposing what has been called the Daily Examen. The Examen is a technique of prayerful reflection on the events of the day in order to detect God’s presence and to discern his direction for us. Try this version of St. Ignatius’s prayer.

Become aware of God’s presence. Look back on the events of the day in the company of the Holy Spirit. The day may seem confusing to you—a blur, a jumble, a muddle. Ask God to bring clarity and understanding.

Review the day with gratitude. Gratitude is the foundation of our relationship with God. Walk through your day in the presence of God and note its joys and delights. Focus on the day’s gifts. Look at the work you did, the people you interacted with. What did you receive from these people? What did you give them? Pay attention to small things—the food you ate, the sights you saw, and other seemingly small pleasures. God is in the details.

Pay attention to your emotions. One of St. Ignatius’s great insights was that we detect the presence of the Spirit of God in the movements of our emotions. Reflect on the feelings you experienced during the day. Boredom? Elation? Resentment? Compassion? Anger? Confidence? What is God saying through these feelings?

God will most likely show you some ways that you fell short. Make note of these sins and faults. But look deeply for other implications. Does a feeling of frustration perhaps mean that God wants you consider a new direction in some area of your work? Are you concerned about a friend? Perhaps you should reach out to her in some way.

Choose one feature of the day and pray from it. Ask the Holy Spirit to direct you to something during the day that God thinks is particularly important. It may involve a feeling—positive or negative. It may be a significant encounter with another person or a vivid moment of pleasure or peace. Or it may be something that seems rather insignificant. Look at it. Pray about it. Allow the prayer to arise spontaneously from your heart—whether intercession, praise, repentance, or gratitude.

Look toward tomorrow. Ask God to give you light for tomorrow’s challenges. Pay attention to the feelings that surface as you survey what’s coming up. Are you doubtful? Cheerful? Apprehensive? Full of delighted anticipation? Allow these feelings to turn into prayer. Seek God’s guidance. Ask him for help and understanding. Pray for hope.

St. Ignatius encouraged people to talk to Jesus like a friend. End the Daily Examen with a conversation with Jesus. Ask forgiveness for your sins. Ask for his protection and help. Ask for his wisdom about the questions you have and the problems you face. Do all this in the spirit of gratitude. Your life is a gift, and it is adorned with gifts from God. End the Daily Examen with the Lord’s Prayer.

Yes, the Lord’s Prayer does help us to put on our oxygen mask first. For Jesus loves our family members even more than we do.

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Eight Steps to Balance Family Needs

Information for this post comes from NAMI.com, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, MFCC, and my own experience.

When you have a family member, particularly a child, with a mental illness, it is easy to let your concern for them consume your life. This backfires, damaging you and the rest of your family. These eight steps can help you balance your family’s needs.

1. Take care of yourself.

If you don’t care for yourself, the whole family may suffer even more. You may have to adjust your priorities or your lifestyle, but you should avoid letting the challenges posed by your loved one’s mental health condition make you neglect other important parts of your life.

In some cases, the stress of dealing with a family member can create your own mental health challenges. If you begin to feel that you are struggling with sadness or anxiety, do not hesitate to seek treatment for yourself. Caring for your own mental well-being will serve as a model for your loved one to follow, and ensure that you are healthy and able to care for your family member.

2. Be intentional about time with other family members.

Remember that if you have other children, they may resent being pushed to the side if all the attention is placed on their sibling’s mental health challenges. Make sure that they understand what their sibling is going through, and that you spend time with each of them. Keeping a happy and balanced family can be very helpful in reducing stress levels for everyone, which can help alleviate symptoms of mental illness.

3. Get your family involved.

Don’t try to “spare” family members from stress by taking on all the caretaking yourself. Work together to give everyone in the household roles to play according to their abilities. Include your family member with the illness as well, making his or her responsibilities to the family clear.

Other family members may deal with the challenges and obstacles differently that you would like. So be ready to compromise, listen and be open to new ideas.

It is possible you may discover that some members of your family have little interest in supporting you and your child in dealing with challenges posed by your child’s mental health condition. It is also possible that a spouse or significant other may be a negative influence on your child. They may demand discipline for behaviors your child cannot control, deny that there is anything wrong or insist upon an irrational course of action.

Helping to raise a child who has a mental health condition can be stressful, and it is unrealistic to assume that anyone, yourself included, will always react in an ideal way. However, you must also realize that it is your responsibility to protect your child, even from others that you care about.

4. Resume “normal” activities and routines.

Don’t let life revolve around your family member’s mental health condition. Return to a regular routine within the family. Spend time together on activities unconnected to illness, such as watching a movie, eating dinner out or visiting a favorite park. Practice living life with a mental health condition, rather than struggling against mental illness.

5. Answer these questions to decide how to spend your time.

Consider these questions to find the balance that’s best for you and your family.

  1. How much time can you spend with your ill family member without resenting him or her? (for example:  two hours a day, one visit a week, one phone call a week, etc.)
  2. How much time do you need to spend with your ill family member to keep the relationship as good as possible in the long run?
  3. How much time do other family members want and need?
  4. How much time do you need with the Lord to feel His presence?
  5. How much nurturing do you need, either as time alone or time with well friends and family?
  6. How enjoyable and valuable is the time that you and your ill family member spend together? How do each of you feel after spending time together?
  7. Are other family members showing signs of stress, such as physical symptoms, disturbed sleep and eating habits, or depression and anxiety?

Base your time spent with your loved one, either at home or in a visit, on the answers to these questions.

6. Decide about living at home.

Mentally ill people tend to function as their highest levels and their families do the best when the mentally ill person lives somewhere other than the family home.  However, it is very hard to find permanent supportive housing and other housing for the mentally ill.  It can take years. 

Living at home tends to work best if the loved one:

  • Functions at a relatively high level, without many obvious symptoms.
  • Is female.
  • Has friends and does activities outside the home.
  • Does not have any siblings living at home.
  • Participates in treatment and some type of structured activity outside the home.
  • Has a family that has developed skills to be calm, positive, respectful and nonjudgmental of the ill person.

Having the loved one live at home is not advised when:

  • The symptoms are so disruptive that the family cannot live a normal life.
  • Siblings living at home feel adversely impacted by the ill person.
  • Family members are angry at, frightened off or critical of the ill person.
  • The parents’ marriage is negatively impacted in a strong way.
  • The ill person begins to control family members who are then unable to have their normal routines and activities.
  • The ill relative has no outside friends or activities.
  • The family is a single parent alone.

I believe permanent supportive housing is the best choice for people with mental illnesses. You can check with your local Housing Authority or community shelter system to find out if permanent supportive housing is available in your areas.

Permanent Supportive Housing is based on a Housing First philosophy, an approach that assumes that people are much more likely to become stable, contributing members of society when they have a safe, affordable place to live.

The Housing First approach works by providing safe, affordable housing coupled with supportive services (internal programs and external community resources) tailored to meet each individual’s needs. Residents are strongly encouraged to participate. Activities include:

  • Collaborative team meetings
  • Assessment and referral
  • Case management
  • Life skills training (nutrition, stress management)
  • Education enrichment (GED)
  • Health care education
  • Crisis intervention
  • Recovery support
  • Benefits and financial management assistance
  • Workforce readiness training: volunteer, workforce readiness, supported employment, employment services
  • Joint property management and services apartment inspections
  • Housing retention/eviction prevention planning

If your loved one lives at home, remember: Everyone at home has rights.  Try to keep that balanced with any special considerations for the loved one.

At the same time, be realistic in your expectations about the loved one’s behavior. Have a short list of clear house rules:  No smoking in bed.  No loud television or music after 11 p.m. No violence. Use appropriate consequences when rules are broken.

Keep things as predictable as possible. You and your loved one need to get out of the house at different times and have separate activities.

7. Have successful visits.

If your loved one lives elsewhere, you can have regular visits. A shorter visit can be better than one that’s too long. Be sure to communicate love and compassion.

Stay no longer than an hour if your loved one is in a hospital or locked facility. Do not “overprogram” your visit, so you can have some quiet time with your loved one.

Tie visits to your house to behavior. If your loved one is at your house for a day or longer, continue your normal routine.

8. Make activities together enjoyable.

Please keep in mind that sometimes you can’t make the activities enjoyable, particularly if your loved one is severely depressed or psychotic.  If this is the case, the best thing to do is to make sure your loved one knows that you love them and encourage them to continue treatment.

Many times you can have activities with loved ones.  People with mental illness are uncomfortable with unstructured time when there are no activities and people are making small talk. It’s better to find a common interest to base an activity on:  sports, movies, a game, walking together in a park, or visiting a place that interests you both.

Begin slowly and build, if you haven’t been doing this. I try to schedule an outing once every three weeks.  This is in addition to two visits to the house per week.

The six rules for these activities are:

  1. Be realistic about what your loved one can and cannot do.
  2. Have a specific, prearranged plan for the activity.
  3. Avoid surprises.
  4. Have a contingency plan for what you will do if things go badly.
  5. Give your loved one a specific task to focus on.
  6. Accept the fact that your loved one may not be well enough that day to do the activity.

What does “be realistic” mean?

  • Know what your loved one can tolerate in terms of travel time, number of people involved, amount of loud noise and stimulation, etc.
  • Know what you can tolerate in terms of what embarrasses you, how much time you can spend together, etc.
  • Be willing to cancel if your loved one is not doing well.
  • Go where people would be more accepting of your loved one’s behavior (a family-style restaurant vs. a more formal restaurant, the zoo rather than an art museum if your loved one is loud)
  • Don’t expect perfect behavior.

When you are having a get-together in your house with family and/or close friends:

  • Again, be realistic.
  • Assign your loved one a specific task to do, if possible.
  • Tell others in advance what your loved one’s needs are, if you feel comfortable.
  • Allow your loved one to leave or take breaks as needed.

Do you have any other advice for balancing family needs? I’d love to hear it!

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Balancing Family Needs

The information below comes from the World Federation for Mental Health and the University of Illinois Counseling Center.

Having a family member with a mental illness impacts the entire family. Feeling helpless? You can make things better when you take positive steps to balance your family’s needs. This makes life better for everyone involved.

You’ll find that you are not in an unusual situation. In fact, any kind of chronic or serious illness, particularly when it strikes a child, impacts an entire family. How? For example, many parents feel more protective of the child who is ill. They may spend more time with that child than they do with their other children. This can make the other children feel left out and less important.

Not only that, the limitations of the ill person and the demands of their care changes the home’s daily routines. Family members find themselves sharing caregiving … or resenting those who don’t help. Fights over what to do next are common.

Family members often experience very strong emotions, including guilt, anger, fear, sadness, anxiety and depression. This, unfortunately, is a normal reaction to stress. So families have to work together to build a sense of “normal” life. This is good for everyone, including the ill person.

Challenges Increase With Mental Illness

It’s no surprise that the challenges increase when a family member has a mental illness. The additional stresses of instability and unpredictability add to the strain.

Family roles can become confused, especially if children find themselves taking on the responsibility of caring for their parents or siblings. Children in this situation often do not get the nurturing that they need.

The stigma of mental illness always makes things worse. Family members may feel too ashamed to talk about their situation. They may withdraw from relatives and friends, feeling ever more isolated and alone.

What Can Go Wrong

Without positive intervention, “well” family members can develop all kinds of difficulties:

Relationship problems

  • Trouble initiating relationships
  • Difficulty in romantic relationships
  • Issues with maintaining friendships
  • Difficulty with trusting self and others
  • Difficulty with balancing the level of intimacy, such as being either excessively dependent or excessively avoidant
  • Inability to balance taking care of self and taking care of others

Emotional issues

  • Guilt and resentment
  • Shame or embarrassment
  • Depression
  • Fear of inheriting a family member’s mental illness
  • Fear of discovery by one’s partner and friends
  • Angry outbursts or repressed anger
  • Inability to deal with life unless it is chaotic or in crisis
  • Becoming overly responsible or irresponsible in many areas of life such as commitments, money, alcohol, relationships, etc.
  • Self defeating thoughts, attitudes, and behaviors such as “My needs don’t matter. I’m not worth much. It’s no use trying.”
  • A tendency to equate achievement with worth as a person, such as: ”Maybe I can matter if I can excel at something, be perfect in school, my job, my relationships. But if I fail, I’m worthless and terrible.”

You can see why taking proactive steps to balance the needs in your family is so important. Next time, we will talk about some practical ways to do that.

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Impact of Mental Illness on Children

The following information is from NAMI Baltimore, NAMI Vermont, “Stop Walking on Eggshells” by Paul T. Mason MS and Randi Kreger, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, MFT, “The Complete Family Guide to Schizophrenia” by Kim T. Mueser and Susan Gingerich, and my own experience.

Let’s start with the bad news. When your family is dealing with a mental illness, the situation impacts young family members the most. This is true whether the children are the offspring or the siblings of the ill person. They are the most vulnerable because they have more limited coping skills and are more dependent on others.

NAMI’s research with adult siblings and adult children found that the younger the family member, the greater the potential impact. If the mental illness delays or disrupts early developmental milestones, the complications can go on for a lifetime.

“When Someone You Love Has a Mental Illness” says the worst times for children are at the onset of the illness, during the child’s adolescence and during bad episodes.

The Worst Case Scenario

Young children may become enveloped in their relative’s psychotic system with lifelong consequences. They may feel that their own needs are not important.  They may grow up too quickly. They may assume a parental role in the family.

Siblings and offspring may have “survivor’s syndrome,” feeling guilty that they were spared the illness. They also may have negative impacts on their academic and social relationships, being reluctant to bring people to the home.

As adults, these children may develop:

  • Problems with self-esteem that leaves them more dependent on the approval of others.
  • Perfectionism and the strong need for control to compensate for their chaotic upbringing.
  • Worry about their own mental health and the mental health of their children.
  • A feeling of social alienation and isolation.
  • Inappropriate caregiving in close relationships (co-dependency).
  • Reluctance to make long-term commitments.
  • May enter an early marriage to get away from the home environment.
  • Posttraumatic symptoms including heightened fear and anxiety, intrusive flashbacks, emotional numbing, etc.

When they become adults, the children may have these feelings:

  • Concern about caregiving for the relative (94%)
  • Difficulty balancing family and personal needs (81%)
  • Feeling their own needs were not met (79%)
  • Feelings of helplessness and hopelessness (75%)
  • Guilt feelings (74%)
  • Psychic numbing (70%)
  • Problems trusting (69%)
  • Problems with intimacy (69%)
  • A sense of growing up too fast (67%)
  • Depression (66%)

The Good News

Ultimately, most children in this situation grow into resilient adults. They usually do have intense feelings of anguish and loss. But they are survivors.

These children need three things to become survivors:

  1. Information about mental illness and its meaning to the family. (Naming and taming)
  2. Skills to cope with mental illness and its impact on their lives.
  3. Support, including recognition that their needs and desires matter.

You can help them when you:

  • Strengthen and support the family system as a unit.
  • Reach out to the children to listen to them. Encourage them to ask questions and share their feelings. Tell them they are not to blame.
  • Encourage their parents to get the child into therapy. Play therapy may help very young children. Older children may benefit from individual or group therapy.
  • Reassure them that their needs matter and that you will support them in achieving their goals.

Helping Offspring of People With Mental Illness

Most children of people with mental illness will not develop the illness themselves. But they do not come through the situation unscathed. Studies indicate that having a well parent in the mix or a sustaining sibling relationship reduces the stress.

Many offspring are late bloomers because their development was placed on hold. Many talk about how weird it feels to “outgrow” a parent … to have their own maturity advance beyond the parent’s maturity.

As a parent, grandparent or other relative, you should increase your time and build a strong relationship with the child. What you say doesn’t matter as much as what you do. The child will learn about detachment, self-care, limit setting etc. from you. You can learn coping skills together as a family.

To get there, try to make an alliance with the ill parent. Tell them often that you know that they love their child and want to be a good parent.

At the same time, take steps to ensure the safety of the child at all times. When the illness is severe, it’s often best to not allow the ill parent to take care of the child.

Tell the child what illness the parent has, its symptoms and prognosis in an age-appropriate way. It is frightening to not know what is happening.

Listen to the child without judgment. Assure the child that all his feelings are valid and okay. Give the child frequent opportunities to discuss fears, questions and concerns.

Make reading material available, but don’t push. Just leave the material out for an older child to read when ready.

Create opportunities for the family to be “normal,” such as outings, holidays or vacations. Let the child know that it’s OK to have fun. Of course, make sure the family is represented at the child’s important occasions (recitals, graduations, etc.) Offer physical affection regularly, and foster a sense of humor.

Try to make sure that the child has an appropriate level of responsibility. Don’t allow them to become the parent in the home.

Help the child understand that they are in no way responsible for the illness, its symptoms, its severity. They can’t fix it by being extra good.

When the parent is hospitalized, give the child the option to visit them in the hospital. If they want to, prepare them about what to expect and talk about it afterwards. You also can give an older child the opportunity to privately talk to their parent’s doctor to ask questions.

Helping Siblings of People With Mental Illness

Sibling loss is normally intense. It resurfaces at every developmental milestone. Many say they feel invisible in the family once a sibling gets mental illness. They see the stress on their parents, and they don’t want to add to it.

Siblings also commonly have anxiety about developing the illness. Surveys conducted with siblings in young adulthood also find they have two questions on their minds: “What is going to happen to my sibling?” and “What will be expected of me when my parents are not able to care for my sibling anymore?”

Some ways to support siblings include:

  • Encourage them to go to therapy, which they are be open about their feelings.
  • Support them when they feel they must step out of the family problem.
  • Empathize when they are torn between helping their parents and their ill sibling and moving their own lives along.
  • Listen to them when they talk about survivor’s guilt. (It’s at its worst in the 20s.)
  • Be open about the future when parents are not able to care for the sibling. Involve the sibling in creating options for future care.

Mental illness impacts the whole family, but you can mitigate the problems if you are intentional about dealing with them.

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When Your Spouse Has a Mental Illness

Mental illness is very hard on marriage. I know. I’ve been there. My first husband had a diagnosis of atypical psychosis, and our final years of marriage were filled with escalating abuse.

The stress can and does reach crisis levels. This includes the practical burdens of day-to-day problems as well as the emotional consequences of the illness. Some couples fall into pattern where managing the illness is the central part of the relationship. You become primarily patient and caregiver, not husband and wife.

The core of the emotional burden is an ongoing grieving process: mourning for the individual who has the illness and for the family life … present and future … that has changed.

Despite this, some do maintain healthy relationships.

Impact on a Marriage

Note: The following information came from verywellmind.com and “Stop Walking on Eggshells” by Paul T. Mason, MS, and Randi Kreger. The research study referenced is “Love and Mental Illness: A Survey of Psychological Well-Being and Intimate Partnerships,” published in PsychGuides.com (from American Addiction Centers) in January 2019. I also include my own thoughts from my experience.

It starts with finding out what is happening. The 2019 study by PsychGuides.com found that men tend to wait longer to disclose their mental illness diagnosis than women do. It found that 73.5% of woman tell their partners about the diagnosis, while only 52% of men do.

A new diagnosis of mental illness can be devastating, embarrassing and even frightening. Due to the problems of stigma, sufferers worry that you may not love or desire them anymore. They fear divorce. And, in situations of violence, separation and divorce may be the best answer. (This happened to me in my first marriage, and the church agreed it was best under the circumstances.) This is a decision that takes much prayer, and we’ll go over some questions to ponder below.

In meantime, understand that a negative reaction from you can potentially exacerbate symptoms of the mental illness and bring on additional feelings of hopelessness. So, if you can, let your spouse know that you are there for and love them “in sickness and in health.”

Steps to Take When Your Spouse Is Diagnosed

Educate yourself.

  • Seek out high-quality psychological and medical professionals. Find literature and online information about the particular diagnosis from legitimate sources only. Websites that you rely on should have good reputations or come recommended by your psychotherapist or physician.
  • Understand that issues that you think of as “character flaws” might be symptoms.
  • Effective treatment combining therapy and medication is crucial. Mental health professionals can also educate you about what role you can and should play in your spouse’s treatment plan.

Do not become their therapist or enabler.

  • Let the professionals outside your marriage do their jobs with your spouse. Your role is to provide love, support, and sympathy for your partner during their recovery efforts.
  • You don’t want to do things for your spouse that they can do for themselves. How involved you should be depends on how ill your spouse is.

Seek individual and couples counseling.

  • Spouses of people with a mental health condition can feel hate, frustration and anger. Emotional exhaustion is not unusual. Individual counseling can help you.
    • It’s normal to be angry if your spouse is not trying to manage their illness. You may feel yourself acting as a parent/caregiver in the situation. This can damage you and your relationship.
    • Your own therapist can help you talk through decisions about boundaries issues. Your spouse’s ability to take care of themselves will change along the continuum of care. Your therapist can help you to be strong, yet flexible.
    • If your spouse continues to refuse treatment, you can work with your own therapist to decide key issues, such as:
      • Should I use our marriage and the children as leverage to get my spouse to get help?  (As in:  You get treatment or we’re leaving you.)
      • Is this situation dangerous? Should I leave with the children?
    • Mental illness also changes the relationship with your in-laws. A counselor can help you with this.
  • Couples counseling can prevent the two of you from falling further into an unhealthy relationship. (For example, it’s easy to blame everything that’s wrong in the relationship on the mental illness.)
    • Couples counseling can help with sexual intimacy issues as well, which are common when a spouse has a mental illness.
    • Financial stresses are common when one spouse has a mental illness. Couples counseling is a good place to discuss the situation.
    • This setting is also a good place to discuss specifics about child care.  Should you leave your children with your spouse while you work?
  • Stay active in a support group.
    • You get to hear lived experience from others who have been in your situation.
    • You can talk through issues.
    • You can also help others as they help you.

Practice self-care regularly.

  • Self-care is necessary if you have a spouse with mental health problems. If you don’t focus on your own health, you may be sucked into the vortex of the mental illness, putting your marriage at risk.
  • Go back to the basics: Get enough sleep. Do some regular physical activity. Eat well. Spend time with friends or loved ones. Engage in activities or hobbies that you enjoy.
  • Watch out for compassion fatigue and burn-out. This is a common scenario when dealing with an ill or disabled partner.
  • Ask yourself if you are responding well to this new scenario, and to other challenges in your life. Are you stepping up in a way you that you are proud of or are you avoiding doing your part to help your spouse, your family, your marriage, and yourself?

Deciding to Stay or Go

This is a tough decision. Sometimes your family, especially your parents, may see things more clearly than you do. I remember when my husband’s therapist told me “I think you need help to become strong enough to leave this marriage.” It was a shock to me, but not to my father.

Here are some questions to consider:

  • Am I in physical danger?  Are the children in danger?
  • Have I accepted the fact that my spouse is the one who decides about treatment?
  • How would a separation impact the children?
  • How does this marriage affect me?
  • If a friend were in my place, what would I say to them?

Having a spouse with a mental illness can be a heavy cross to carry. But, remember, with treatment 60% to 80% of people with mental illness improve their behaviors. You can have hope, but may have to be practical in the moment.

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How to Feel Content … No Matter What

I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well feed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

Philippines 4: 11-13

Is it possible to have contentment … a peace separate from our circumstances … when we are loving someone who is mentally ill?  Especially when it is a spouse and your whole life is upside down?  When it is a child and their prospects are damaged and our daily lives are so changed? Or it is a parent and you have to parent them?

Look again at what Paul says:  “I have learned the secret of being content.”  Contentment can be learned with God’s grace. 

In fact, Paul had to learn it.  Paul did not have an easy life.  Here’s what Paul says about his line in 2 Corinthians 11: 23-29. 

23 Are they servants of Christ? (I am out of my mind to talk like this.) I am more. I have worked much harder, been in prison more frequently, been flogged more severely, and been exposed to death again and again. 24 Five times I received from the Jews the forty lashes minus one.25 Three times I was beaten with rods, once I was pelted with stones, three times I was shipwrecked, I spent a night and a day in the open sea, 26 I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my fellow Jews, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false believers. 27 I have labored and toiled and have often gone without sleep; I have known hunger and thirst and have often gone without food; I have been cold and naked. 28 Besides everything else, I face daily the pressure of my concern for all the churches. 29 Who is weak, and I do not feel weak? Who is led into sin, and I do not inwardly burn?

We don’t have Paul’s problems, but we don’t have easy lives either. To top it off, we live in a culture that wants us to be discontented. For many years, the marketers wanted us to be discontent. Now the marketers, the politicians and our neighbors with anti-everything yard signs want us to be discontent.

We already can feel like we got robbed. We see other people with normal kids, normal spouses, normal parents and a normal life. We feel envy. And we may think that God must have been looking the other way when our loved ones got sick. Or that God doesn’t love us as much as He loves everyone else.

Yes, most of us have head knowledge … Bible knowledge … that the source and strength of all contentment is God himself. Contentment is both a God-given grace and something we can learn. It’s not a denial of suffering or injustice. It’s an inner condition of our hearts that is cultivated over time. Let’s look at what contentment is and what it is not.

What Contentment Is

True contentment is inner peace and calmness. If you look calm on the outside, but you’re a frantic basket case on the inside, you’re not content.

To be content, you have to feel the pain of your suffering. God uses this to help us find contentment in Jesus. So, in an odd way, you have feel enormous discontent to get to the point where you learn to be feel content.

Contentment comes from within. You can’t distract your situation away. Or commit sin (such as sinking into substance abuse of one kind or another) to avoid it.

My church’s founding pastor Rich Nathan gave a sermon in 2004 that offered a three-part plan to develop contentment that I can’t improve on at all. 

Three Steps to Contentment

No. 1:  Acknowledge God’s sovereignty over your life. Practice surrender.

The Bible teaches that everything, even our loved one’s illnesses, have to pass through God’s hands before they happen. As Elisabeth Elliott put it: “Whatever happens is assigned.”

God’s power is unlimited, and he rules all our lives.

Matthew 10:29-30:  Jesus says, “Are not two sparrows sold for a penny?  And yet not one of them will fall to the ground apart from your Father.  The very hairs on your head are all numbered.”

Romans 8:28: “And we know that in all things God works for the good of those who live him, who have been called according to his purpose.”  We will never suffer trials unless God allows them and watches over them.

The most important example of a person who trusted God under terrible circumstances was Jesus himself.  Have we ever been in so much agony that we sweat blood over it?  Yes, Jesus understands how we feel.

And we learn things from suffering that we probably couldn’t learn anywhere else: reliance on grace, humility, perseverance, quality prayer, faith, trust, a real relationship with God.

Rich suggested that we engage in a spiritual exercise when we are upset about our life situation. That we say:  Just for today, I choose to believe that you are in control of my life. Just for today, I will choose to trust that you know what is best for me and for the kingdom. Like Joseph, I’m going to say that others may have intended what happened to me for evil, but you intended it for good.  You are good. Your will is good.

No. 2:  Practice thanksgiving.

Start being grateful for the littlest things:  grass, sky, trees.  Spend a day looking for things to be grateful for.

No. 3: Practice abiding.

This means that you connect with God’s person.  You can do all things through God who strengthens you, but you have to abide in God to do so.

Pastor Rich encouraged us to:

Breathe in the presence of God. Welcome the Holy Spirit into areas that you’ve been grumbling about in the past, areas where you are discontented, areas where you are frustrated. Invite the person of the Holy Spirit to come into that part of your life.

Accept God’s sovereignty.  Offer thanksgiving. Invite God into your situations and abide with him. Contentment will come.

handling bizarre behavior and anger in people with mental illness
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Handling Anger, Bizarre Behavior and Negative Symptoms

Information is from “When Someone You Love has a Mental Illness” by Rebecca Woolis, “The Complete Family Guide to Schizophrenia” by Dr. Kim T. Mueser and Susan Gingerich, and the Palo Alto Medical Foundation.

The best answers for how to respond to the symptoms of your loved one’s mental illness come from their treatment team. As I’ve said previously in this series, I’ve found it can be hard to get answers from the team quickly. This information below is from respected sources and my own experience to help when you need to respond immediately.

Responding to Anger

First, if you are angry or upset at your loved one, separate until you can calm down. To deal with their anger, you need to remain as calm as you can, and stay in control of yourself. When your loved one is angry:

  • Do not approach or touch your loved one without permission.
  • Give your loved one an escape route out of the situation.
  • Don’t give into angry demands that violate your boundaries.
  • Do not argue with irrational thinking.
  • Acknowledge the person’s feelings.
  • Protect yourself from injury.

If necessary, call the police and ask for an officer trained in dealing with the mentally ill. More cities are creating special units that include social workers and EMTs to respond to mental health crisis calls. This is excellent news, and I hope the trend continues.

If angry outbursts become routine, you need to discuss this when everyone is calm and can agree to some steps.  This could include:

  • A medication review
  • Venting energy via exercises, such as hitting a punching bag or yelling in a place where it won’t bother anyone.

Dealing with Bizarre Behavior

Bizarre behavior is a symptom and is often related to delusions. This can include strange rituals and OCD-like activity and unusual beliefs acted out.

If the behavior is harmless, you can ignore it if you wish.  (For example, if your loved one can’t go get ice cream because everyone can read his mind at Graeter’s). Focus on positive behavior, and ignore bizarre behavior.

If it constitutes a problem (running around the neighborhood naked, doing dangerous things, damaging property, etc.), you can ask the person to stop.  They may or may not be able to do this.

Focus on the consequences.  Tell the loved one that the behavior may end up with them being in jail or the hospital.  You can remind them of previous experience, if applicable.

If necessary, you may need to call 911 and ask for an officer trained in dealing with the mentally ill.

Dealing with Negative Symptoms

Blunted Affect is a facial expression that’s almost blank and conveys no emotion.  The person still feels emotions, but they don’t show them. Ask how they are feeling.

Poverty of Speech means that the person barely speaks. The person cannot help this.  Do things together where the focus is not on talking: shopping, nature walks, movies.

Apathy and Anhedonia are when your loved one no longer enjoys activities or things. Apathy is a symptom, and not under the person’s control.  At the core of this is a belief that activities will not be fun.

  • Acceptance is the first step. “I know he’s doing the best he can.”  “He’s not lazy; this is a symptom of his illness.” “Difficulty doing things and following through are part of this illness.”
  • Invite the loved one to join you in day-to-day activities (grocery shopping, going to the dry cleaner, etc.).
  • Regularly schedule enjoyable activities (going to a museum, going to get pizza, going to a park).  Lower your expectations.
  • Take baby steps and praise progress.
  • Increase daily structure. 
  • Focus on the future, not the past.

I hope this series on dealing with symptoms has been helpful. Please let me know what topics you’d like me to cover in the future.

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Handling Symptoms: Hypomania and Agitation

Information is from “When Someone You Love has a Mental Illness” by Rebecca Woolis,  “The Complete Family Guide to Schizophrenia” by Dr. Kim T. Mueser and Susan Gingerich and the Palo Alto Medical Foundation.

I’ve found that it’s difficult to get immediate response from my loved one’s treatment team or anyone else when my loved one is dealing with symptoms of mental illness. My first response is to call them. While I’m waiting for a response, I’ve found this advice from the sources above useful.

Responding to Hypomania

Mania and mixed states are a medical emergency, so medical help is needed. If you can’t get a response from the treatment team, consider going to the emergency room or a psychiatric emergency room.

Hypomania can be a common symptom, which your loved one may have to live with repeatedly.

The best advice for those who love them: Don’t take the symptoms personally.  When in the midst of a bipolar episode, people often say or do things that are hurtful or embarrassing. When manic, your loved one may be reckless, cruel, critical and aggressive. Try to remember that the behaviors are symptoms of your loved one’s mental illness, not the result of selfishness or immaturity.

Be prepared for destructive behaviors.  When your loved one is well, negotiate a treatment contract that gives you advance approval for protecting them when symptoms flare up. Agree on specific steps you’ll take, such as removing credit cards or car keys, going together to the doctor, or taking charge of household finances.

Spend time with the person. People who are hypomanic often feel isolated from other people. Spending even short periods of time with them helps. If your loved one has a lot of energy, walk together. This allows your loved one to keep on the move but still share your company.

Avoid intense conversation and arguments.

Prepare easy-to-eat foods and drinks. It’s difficult for your loved one to sit down to a meal during periods of high energy, so try offering them peanut butter and jelly sandwiches, apples, cheese crackers, and juices, for example.

Keep surroundings as quiet as possible. Avoid subjecting your loved one to a lot of activity and stimulation. 

Allow your loved one to sleep whenever possible. During periods of high energy, sleeping is difficult, but short naps throughout the day can help.

Responding to Agitation

Decreasing stimulation can reduce agitation.  You can encourage your loved one to try relaxation exercises, deep breathing or blocking sound using ear plugs.

Responding to Disorganized Speech

Speaking in gibberish is a frightening thing to observe. If you can’t get ahold of the treatment team quickly, you may want to go to the emergency room or the psychiatric emergency room.

Your job is to communicate that you care.  Respond to emotional tone if you can see it.  If you sense fear, talk about how hard fear is to deal with. If you can pick out a sentence that makes sense, you can respond to that.

When one of my loved ones spoke in gibberish, I was able to pick up the tone. I did say that I couldn’t understand what they wanted, which they seemed to understand. We were in an institutional setting so I felt comfortable with this, as I could get help if the frustration spilled over into throwing things.

As I hope I’ve made clear, your treatment team is the best source of information for how to deal with the symptoms of mental illness.

Next time, we’ll discuss responding to anger, bizarre behavior and negative symptoms.

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Dealing With Delusions and Hallucinations

Handling the Symptoms of Mental Illness

Note: The information is from NAMI, Mental Health America, “When Someone You Love has a Mental Illness” by Rebecca Woolis,  “The Complete Family Guide to Schizophrenia” by Dr. Kim T. Mueser and Susan Gingerich, and the Palo Alto Medical Foundation. It also reflects what I have learned through personal experience.

Some questions that I have heard in our support group include:

  • “What do I say when she says someone on television is sending her secret messages?”
  • “What do I do when he gets the locks changed because he thinks the FBI is trying to get into our house?”
  • “What do I do when he disassembles the pipes to find out where the voices are coming from?”

All these questions are related to delusions and hallucinations, which are symptoms of schizophrenia, bipolar disorder (in some cases) and other forms of mental illness.

Three factors that can influence symptoms are inadequate medication, substance abuse, and high levels of stress. About half the people with schizophrenia have symptoms most or all the time, even with medication. Symptoms also can be signs of relapse coming.

Even if your loved one doesn’t have these symptoms, you may be called on to give advice at some point.  Of course, we always point people to the experts.  But it can be hard to get solid advice from a visit to a psychiatrist or to talk to a social worker. So I’m providing the information that I have collected and used in real-world situations as support.

Responding to Delusions and Hallucinations

People vary in their sensitivity about their delusions or hallucinations.  Previous medical history is a fairly good predictor of this. Some signs that a hallucination is taking place include when your loved one is:

  • Talking to themselves as if responding to questions or comments, but not in a conversational way, such as: “Where did I put my purse?”
  • Staring into space, or being distracted or preoccupied.
  • Laughing for no apparent reason.
  • Appearing to see something that you can’t see.

Hallucinations and delusions often start out as benign, but can become more troubling over time.

People can learn to deal with hallucinations through therapy (including cognitive behavioral therapy), medication, ignoring the hallucination, telling the voices to leave them alone or playing music loudly. Shifting attention to music or television can help.  Working toward acceptance through prayer also helps.

Principles to Keep in Mind

When you are dealing with a loved one who seems delusional or may be having auditory or visual hallucinations, there are some basic principles to keep in mind.

While the things they say that they see, hear or believe are not apparent to you and may not make sense, they are very real to that person. They actually hear voices and see images.  They believe the things they are telling you. Do not dismiss or minimize the impact of this. Do not get into an argument about whether the voices are real.

Research shows that confronting people about their delusions may result in an initial decrease of belief in them, followed by a rebound that makes the belief in the delusion stronger.  This discredits you. If you are forced to take a stand on this situation, just say that you know the experience is true for them.

People, particularly those who have been in treatment for some time, may not be entirely convinced that the delusion or hallucination is true.  They know that this can be a symptom of their illness.  If they check with you to see if what they are seeing or hearing is true, you can tell them that it is likely that this is a trick that their mind is playing or whatever term is comfortable for them.

Respond to the Emotional State

A variety of emotional states accompany delusions and hallucinations, ranging from pleasure to terror. It’s more important to respond to the emotional state you detect than to the content of the delusion or hallucination.  Use listening skills like paraphrasing and asking clarifying questions to reflect what you hear. Ask: “What can I do to help you feel safe?”

You can ask if the person is seeing or hearing something. Try to get enough information to determine how they are feeling and focus on that.

Do not make fun of the person or try to have a lengthy conversation about the content of the hallucination.

Keep in mind that your statements may be confusing to the person as well.  If a voice is saying that you are going to kill him, and you are saying everything is fine.  You see the problem.

This is the first of a series on handling the symptoms of mental illness with your loved one. Next time: responding to agitation and hypomania. As always, if you can get advice from the medical team treating your loved one, use that advice instead.

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When God Feels Gone

 “The Lord has hidden himself from his people, but I trust him and place my hope in him.”

Isaiah 8:17

God is as real as the Sun, even when we only sense His presence half the time. As caregivers for people suffering from mental illnesses, we all know it’s easier to worship when things are great.

I have had times, usually during or after a mental illness episode in my family, when I feel that God has abandoned me … or doesn’t exist at all.

In “The Purpose-Driven Life,” Rick Warren, whose son died from mental illness, tells us that the deepest level of worship is praising God while you are in pain. When you thank Him during a trial. Trust Him when tempted. Love Him when He seems distant.

God can … and does … mature our relationship with Him during periods of seeming separation, often called dark nights of the soul. When this happens, we have to decide to continue to love, obey and worship God.

David had one of the closest relationships with God recorded in the Bible. God called the shepherd/king “a man after my own heart.”  But the Psalms that he wrote often contain his complaints about a dark night of the soul.

Psalm 10: 1 “Lord, why are you standing aloof and far away?  Why do you hide when I need you the most?”

Psalm 22:1  “Why have you forsaken me? Why do you remain so distant?  Why do you ignore my cries for help, Lord?”

Psalm 43:2 “Why have you abandoned me, God?”

No, God hasn’t abandoned us.  But if a dark night of the soul was this hard for David … and for Mother Teresa … and for Therese of Liseux, it will be hard for us.

God has promised repeatedly, “I will never leave you nor forsake you.”  (Hebrews 13:5) But does God promise that we will always feel Him with us? No.

It comes on in many ways. One day you pray, and it feels off. You can’t sense God in your quiet time. You have your small group pray for you, but nothing changes. How long will it last? For Mother Teresa, it went on for roughly 50 years, with some breaks. And learning of this after her death in the writings she left behind … well, it shocked everyone who knew her.

Why would God want to distance Himself from Mother Teresa? Or David? Or you, especially as you struggle to deal with a loved one who has a mental illness?

Because He loves us and He wants us to deepen our faith. This dark night of the soul happens to most Christians, thankfully not usually for 50 years. But it may happen more than once.

When God seems gone, we have to make a choice. Either we say “I still believe. Help my unbelief” or we say “God is no good.”

Clearly Mother Teresa chose to stay faithful. That’s why no one knew about her suffering. (She even wanted the letters that contained this information burned at her death. But someone read them and kept them to share.)

You may think God is singling you out, punishing you. The dark night of the soul is no more your fault than the mental illness is. Sin does distance us from God, but this experience usually isn’t connected to any sin. Sometime’s it’s a test of faith.

In his book, “Emotionally Healthy Spirituality,” author Pete Scazzero calls these periods of distance from God “the wall.” He defines this as affiliated with “a crisis that turns our world upside down.” John of the Cross said these times can come to free us from our deepest sins, like pride, greed and envy.

But often experiencing this has nothing to do with sin. It is a test of faith to see if we will continue to love, trust, obey and worship God without a sense of his presence. 

So what do you do?

Scazzero mostly suggests that you keep up your spiritual practices. Warren has four recommendations:

  1. Tell God exactly how you feel.  Pour out your emotions. 
  2. Focus on who God is – his unchanging nature. : good and loving, all-powerful, in control, notices every detail of my life.
  3. Trust God to keep his promises.  Don’t be troubled by trouble.  When you feel abandoned by God yet continue to trust him despite your feelings, you worship him in the deepest way.
  4. Remember what God has already done for you.

In the end, I’ve always ended up like Simon Peter. “To whom shall I go, Lord? You alone have words of eternal life.” But I find my prayer life and connection to God grows stronger after each one of these experiences.

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Ten Things to Do When You Fear a Relapse

Because mental illness is often episodic, our loved ones can slide into relapses. You also may hear professionals say your loved one is “decompensating.” Many relapses in major mental illness happen when our loved one stops medication, experiences stress, or abuses alcohol or drugs.

When you see your loved one’s particular set of warning signs, you can take these 10 steps. NAMI, Mental Health America and my own family’s experiences provided resources to create this list.

Ten Steps to Take

  1. Meet as a family to discuss the concerns as soon as possible.  When it’s possible, include the ill person. Explain to him why you are concerned. Describe the specific changes you see in behavior and for how long. Reach a consensus about whether you have a problem or not.
  2. Find out whether the person has been taking medication.Start checking as soon as you see the warning signs if you don’t check every day. If the person lives with you, you can count the pills in their medication bottles daily. If the person has stopped taking medication, talk to them about how to improve compliance. They may agree to increased monitoring or receiving reminders. Notify the treatment team if they have stopped taking medication altogether and won’t resume it.
  3. Determine whether your relative has been abusing drugs and/or alcohol. Check for evidence. Remove alcohol and drugs from the house. This is another topic to discuss with the treatment team.
  4. Evaluate your relative’s stress level. What happened just before these changes happened? Do you see any trigger events?
    • Has he experienced a recent life event that’s stressful?
    • Has there been a significant change in routine over the last two weeks or so?
    • Has there been a change in the treatment plan or team?
    • Have there been conflicts with family, friends, coworkers or others?
    • Has there been a change in an important relationship?
    • Has there been an increase in responsibilities?
    • Did he stop participating in activities he enjoyed?
  5. Check current behavior and circumstances against your loved one’s relapse signature. (The information about that is here.
  6. Some classic trigger events are:
    • Staying up too late or all night.
    • Loss or grief.
    • Conflict among loved ones.
    • A change in the season.
    • PMS.
  7. Ask the relative about the answers in your stress evaluation. If stress has been building, find a way to reduce it:
    • Reduce responsibilities.
    • Reduce work or school hours.
    • Add more leisure time.
    • Get or give a temporary loan to reduce money problems.
  8. Call the psychiatrist and case manager to express your concerns. Consider a medication change.
  9. Keep monitoring but try to keep life normal. Regular routines and family fun help to reduce stress for everyone involved. About all, use your toolbox of support ideas for YOU. Taking time to do things you enjoy will help you stay strong enough to be supportive when needed. When you are not feeling well, it’s easy to stop doing things that are good for you. Here are some ideas:
    • Set aside time for extra sleep.
    • Attend a peer support group.
    • Spend time in nature, like going to a park.
    • Write in a journal.
    • Spend extra time in prayer and meditation.
    • Volunteer.
    • Watch a funny movie or TV show.
  10. Help your loved one think about things to stop doing. This could include staying up late, spending time with people who are not supportive, or drinking.
  11. Check back in a few days. Evaluate the situation. Is it better? Or worse?
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Relapse Prevention: Know the Warning Signs

This month is Mental Health Awareness Month. Some of us are aware of mental illness every waking hour because we have a loved one dealing with it. We dread relapses. To help, I’ve collected information from NAMI, Mental Health America and my own reading/experience.

Recognizing the Early Warning Signs

Mental illness, especially bipolar disorder, schizophrenia and clinical depression, is usually episodic. The symptoms vary over time. When your loved one experiences another episode, it is commonly called a relapse.

Please note: Persistent symptoms that continue despite the stabilization of the illness are not signs of a relapse, but are treatment-resistant symptoms.  If the symptoms get worse, it’s a relapse.

Before the relapse, people often experience changes in their feelings, thoughts and behaviors. These are early warning signs. Studies indicate between 50% and 70% of people experience early warning signs over a period of one to four weeks before a relapse.

Looking for early warning signs allows you to start working with your loved one and his treatment providers to minimize the setback. Because you are the most frequent contact with your loved one, you are the one who sees the warning signs. The ill person will not be able to see them.  This blog post explains why.

Common Warning Signs

Each person has their own specific signs or “relapse signature.” But some warning signs are common, including:

  • Feelings of tension, anxiousness or worries.
  • More irritability.
  • Increased sleep disturbance (hearing them up in the night).
  • Depression.
  • Social withdrawal (more extreme, not even leaving his room to eat).
  • Concentration problems (taking longer to do tasks, having trouble finishing tasks, having trouble following a conversation or TV show).
  • Decreasing or stopping medication or treatment (refusing to go to the case manager or doctor, skipping the vocational program).
  • Eating less or eating more.
  • Excessively high or low energy.
  • Loss of interest in doing things.
  • Loss of interest in the way he or she looks / poor hygiene.
  • Being afraid of “going crazy.”
  • Becoming excessive in religious practices.
  • Feeling bothered by thoughts that will not go away.
  • Feeling overwhelmed by demands.
  • Expressing worries about physical problems.

Most common relapse indicators for schizophrenia:

  • Restless or unsettled sleep.
  • Nervousness or tension.
  • Having a hard time concentrating.
  • Isolation.
  • Feeling irritable.
  • Having trouble taking care of routine things.
  • A lack of energy.
  • Feeling sad or depressed.
  • Feeling confused.
  • A change in appetite.

Most common relapse indicators for bipolar disorder:

  • Disturbed or lack of sleep.
  • Talking quickly and more often than usual.
  • Acting reckless.
  • Feeling very tired.
  • Feeling very depressed.

An Off Day or the Start of a Relapse?

Everyone can have an off day. You can feel down in the dumps, with no energy. Or you can seem a little manic.  If a person has had mental health problems, it’s important to consider whether they are having an off day or starting a relapse.

Early warning signs are:

  • A cluster of changes.
  • Happening together.
  • Lasting over a period of time.
  • Gradually getting worse.
  • Following the same pattern as before.

Your Loved One’s Relapse Signature

Think about the last time your loved one got worse. If you keep a journal, look at what you wrote. It helps to think about:

  • What was the time of year?
  • Did your loved one say how they were feeling physically?
  • How was the mood?  The level of concentration?
  • Did any unusual changes in behavior take place in the weeks before the last relapse?
  • Did your relative do things that seemed “out of character” before the last relapse?
  • Have the same behaviors preceded other relapses?

Thinking about what was happening in the person’s life when you start to notice these changes can help too. 

Next time we’ll talk about what to do when your loved one shows signs of relapse.

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Managing Depression and Anxiety

Families who have one or more members with severe, persistent mental illness face unique challenges. Complex family dynamics, social isolation and often unpredictable behavior can take their toll. Other ways that mental health issues impact families include:

  • The family may change its rules or patterns.  The ill person may no longer do chores, and the family may withdraw from social situations.
  • Friends may withdraw from the family.
  • Everyone is walking on eggshells around the person.
  • Family members vent their frustration on non-ill family members.
  • Parents may be stricter with non-struggling children.
  • Family members may blame themselves.
  • Family members may become resentful of the ill person for the disruption the illness has caused.
  • Family members may be ashamed of the ill person’s struggle.

Under these circumstances, the primary caregiver or other family members may develop depression and anxiety. This also impacts the entire family. In fact, the additional stress can be overwhelming. But there is hope. The ideas below come from people who have lived experience, as well as NAMI, Mental Health America and the Veterans Administration.

When You Are Struggling

Learn all you can. If you develop depression or anxiety, learn all you can about the illnesses. Taking good care of yourself is critical to caring for your loved ones. Connect with other people experiencing these issues in support groups or meetings. Attend local mental health conferences and conventions. Build a personal library of useful websites and helpful books. Learning is an active thing you can do that gives you a feeling of control where control is possible. Ideally, you should learn about your loved one’s illness as well as depression and anxiety.

Recognize early symptoms. Identify possible warning signs and triggers that may aggravate your depression or anxiety symptoms. With this knowledge, you can recognize an emerging episode and get the help you need as soon as possible. Don’t be afraid to ask your friends and family for help—they can help you monitor your symptoms and behavior.

Partner with your health care providers. Give your health care provider all the information he or she needs to help you recover—including any reactions to medications, your symptoms or any triggers you notice. Develop trust and communicate openly.

Know what to do in a crisis. Be familiar with your community’s crisis hotline or emergency walk-in center. Know how to contact them and keep the information handy.

Avoid drugs and alcohol. These substances can disturb emotional balance and interact with medications. You may think using alcohol or drugs will help you “perk up,” but using them can hinder your recovery or make symptoms worse.

Eat well and exercise. To relieve stress, try activities like centering prayer, meditation, yoga or Tai Chi.

Deal with unresolved grief.  Do you have a mixture of persistent feelings of sadness, anger and frustration about your loved one’s mental illness?  Seek more help if you know that you are still grieving over the illness.

Helping Another Family Member  

In these circumstances, some family members may develop depression or anxiety. This is a heavy load for a caregiver dealing with another loved one with mental illness. Getting support is essential for you to continue be helpful. Some suggestions include:

Be proactive in keeping the family as strong as possible.

  • Eat, sleep, connect with other people and turn to God.
  • Take a break when needed.
  • Go places as a family even if the ill person does not go.
  • Encourage all family members to continue with regular activities.
  • Know some days are better than others, and all things pass.
  • Consider family therapy.

Learn more about your loved one’s condition. Learning about depression and anxiety will help you better understand and support your loved one.  They do not need to “hit bottom” to get better. In many cases, hitting bottom means suicide.

Communicate.  Speak kindly and honestly. Don’t scold or blame people with depression or urge them to “try harder” to “just be happy.” Instead, make specific offers of help and follow through with those offers. Tell the person you care about them. Ask them how they feel and truly listen.

React calmly and rationally. You can’t fix the person, but you can walk with them through this time. Even if your family member or friend is in a crisis, it’s important to remain calm. Listen to their concerns and make them feel understood—then take the next step toward getting help.

Find emotional support from others. Share your thoughts, fears and questions with other people who have loved ones with similar conditions. If they won’t get help, you should.

Schedule pleasant events and encourage an increased activity level.  Assist your loved one in making plans at specific times and dates to do something pleasant … a walk in the park, a movie, etc.

Correct unhelpful thinking. Help your loved one challenge thoughts about how things “should” be.  You need to learn about cognitive distortions and how to gently help a loved one to understand them.   I recommend reading  “Feeling Good: The New Mood Therapy” or “The Feeling Good Handbook,” both by David D. Burns.

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Dealing With Anxiety

Note: The information in this post comes from NAMI, Mental Health America and the Veterans Administration.

Anxiety is the most common form of mental illness in the U.S., affecting 14% of the population before the pandemic. The KFF Health Tracking Poll from June 2020 reported that the number had risen to 40% of adults during 2020. Typically, the National Institutes of Health reports that 18% of adults and 8% of children and teenagers have anxiety.

Anxiety disorders are a group of related conditions, each with unique symptoms. All the types of anxiety disorders do have three major things in common:

  1. Extreme fear and dread, even when there is nothing to provoke it
  2. Emotional distress that affects daily life
  3. A tendency to avoid situations that bring on anxiety

Anxiety also can be an early warning sign of a relapse in other forms of mental illness, including schizophrenia.

Symptoms

People suffering from anxiety disorders typically experience one or more of the following symptoms:

  • Mood and thinking:  Worry or concern, fear, irritability, or difficulty concentrating.
  • Behavior:  Avoidance of feared situations, escape from unpleasant situations, trembling, and agitation (such as pacing)
  • Increased arousal: Perspiration, heart palpitations, muscular tension, butterflies in stomach, mild nausea, dizziness, shortness of breath, headaches, sweating, tremors or twitches, frequent urination, diarrhea, insomnia and fatigue

The most common types of anxiety disorders include:

Generalized Anxiety Disorder (GAD)

GAD produces chronic, exaggerated worrying about everyday life. This worrying can consume hours each day, making it hard to concentrate or finish daily tasks. A person with GAD may become exhausted by worry and experience headaches, tension or nausea.

Social Anxiety Disorder

More than shyness, this disorder causes intense fear about social interaction, often driven by irrational worries about humiliation (e.g. saying something stupid or not knowing what to say). Someone with social anxiety disorder may not take part in conversations, contribute to class discussions or offer their ideas, and may become isolated. Panic attacks are a common reaction to anticipated or forced social interaction.

Panic Disorder

This disorder is characterized by panic attacks and sudden feelings of terror sometimes striking repeatedly and without warning. Often mistaken for a heart attack, a panic attack causes powerful physical symptoms including chest pain, heart palpitations, dizziness, shortness of breath and stomach upset.

Phobias

We all tend to avoid certain things or situations that make us uncomfortable or even fearful. But for someone with a phobia, certain places, events or objects create powerful reactions of strong, irrational fear. Most people with specific phobias have several things that can trigger those reactions. To avoid panic, they will work hard to avoid their triggers. Depending on the type and number of triggers, attempts to control fear can take over a person’s life.

Causes of Anxiety Disorders

Scientists believe that many factors combine to cause anxiety disorders:

  • Genetics.  Studies support the evidence that anxiety disorders “run in families,” as some families have a higher-than-average amount of anxiety disorders among relatives.
  • Environment. A stressful or traumatic event such as abuse, death of a loved one, violence or prolonged illness is often linked to the development of an anxiety disorder.

Diagnosis

Physical symptoms of an anxiety disorder can be easily confused with other medical conditions, like heart disease or hyperthyroidism. Therefore, a doctor will likely perform an evaluation involving a physical examination, an interview and lab tests. After ruling out an underlying physical illness, a doctor may refer a person to a mental health professional for evaluation.

Treatment

Because different anxiety disorders have their own distinct symptoms, each type has its own treatment plan. Common types of treatment include:

Helping Ourselves

Leading a balanced lifestyle helps us manage symptoms. The suggestions from people who have lived experience with anxiety are similar to those who live with depression:

Learn all you can. Learn about your loved one’s mental illness, our own anxiety, and the many treatment options available. Connect with other people experiencing anxiety in support groups or meetings. Attend local conferences and conventions. Build a personal library of useful websites and helpful books. Learning is an active thing we can do that gives us a feeling of control.

Recognize early symptoms. Identify possible warning signs and triggers that may aggravate your symptoms.

Partner with your health care providers. Give your health care provider all the information he or she needs to help you recover—including any reactions to medications, your symptoms or any triggers you notice. Develop trust and communicate openly.

Avoid drugs and alcohol.

Get physically healthy.

Anxiety is common. Especially in difficult times. As a caregiver of a person with a mental illness, you are likely to experience it occasionally. Be sure to take it seriously. You have to help yourself first before you can help the people you love.

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Dealing With Depression

Depression and anxiety are now wide-spread problems stemming from the coronavirus pandemic. But caregivers of people with mental illness have often suffered from these issues.

On February 21, 2021, the New York Times published an American Psychological Association poll that said 74 percent of psychologists are seeing more patients with anxiety disorders than before pandemic. Sixty percent were seeing more people with depression. Time Magazine also published this on the increase in depression.

First the good news.

Almost all depression and anxiety conditions are treatable.  But there is no magic fix. These are very complex conditions.  Depression and increased anxiety also can be signs that a person with a more severe diagnosis, such as bipolar disorder or schizophrenia, is heading into an episode. Let’s take a look at depression first.

Depression … what it is and who gets it

Depression can result from a combination of genetic, biological, environmental, and psychological factors, the Veterans Administration website reports. Trauma, loss of a loved one, a difficult relationship, or any stressful situation may trigger depression, but depression can also occur without an obvious trigger.

According to the National Alliance on Mental Illness, an estimated 16 million American adults—almost 7% of the population—had at least one major depressive episode in a non-pandemic year. Women are 70% more likely than men to experience depression. And young adults aged 18–25 are 60% more likely to have depression than people aged 50 or older.

Depression is frequently under-diagnosed, however. Psychologists estimate that only about one-third (35%) of people with depression ever see a mental health professional.

The Veterans Administration reports that military personnel are prone to depression, at least partially as a result of exposure to traumatic experiences, including witnessing combat and separation from family during deployment or military trainings. Data shows it is five time higher among active duty soldiers and even higher among the previously deployed solders.

Some will only experience one depressive episode in a lifetime, but for most, depressive disorder recurs.

Without treatment, episodes may last a few months to several years.

Symptoms of Depression

Depression can present different symptoms, depending on the person. But for most people, depressive disorder changes how they function day-to-day, and typically for more than two weeks. Common symptoms include:

  • Changes in sleep
  • Changes in appetite
  • Lack of concentration
  • Loss of energy
  • Lack of interest in activities
  • Hopelessness or guilty thoughts
  • Changes in movement (less activity or agitation)
  • Physical aches and pains
  • Suicidal thoughts

We are not capable of diagnosing depression, but we can use the SIGECAPS diagnostic tool to determine whether someone should see a doctor. If a person has five or more of these 8 symptoms every day for two weeks, they are likely struggling with a major depression.

SIGECAPS Diagnostic Tool

  • SADNESS / SLEEP INTERRUPTION
  • INTERESTS … lost interest in things that used to enjoy
  • GUILT … ruminating over past perceived failures, character flaws, mistakes
  • ENERGY … noticeable lack of it
  • CONCENTRATION … inability to
  • APPETITE … could be eating more or eating less
  • PSYCHOMOTOR ABNORMALITIES … retardation (slowed speech, slowed movement, shuffling gait, collapsed posture, low voice volume, monotone speech, lack of facial expressions) or agitation (pacing, wringing hands, removing and putting on clothing over and over,
  • SUICIDAL … actively (with a plan), passively (stopped caring whether they live or die) and para (cutting or overdoses that the person knows won’t kill them … a cry for help)

Causes of Depression

Depression does not have a single cause. It can be triggered by a life crisis, physical illness or something else. But it can also occur spontaneously. Scientists believe several factors can contribute to depression:

  • Trauma. When people experience trauma at an early age, it can cause long-term changes in how their brains respond to fear and stress. These changes may lead to depression.
  • Genetics. Mood disorders, such as depression, tend to run in families.
  • Life circumstances. Marital status, relationship changes, financial standing and where a person lives influence whether a person develops depression.
  • Brain changes. Imaging studies have shown that the frontal lobe of the brain becomes less active when a person is depressed. Depression is also associated with changes in how the pituitary gland and hypothalamus respond to hormone stimulation.
  • Other medical conditions. People who have a history of sleep disturbances, medical illness, chronic pain, anxiety and attention-deficit hyperactivity disorder (ADHD) are more likely to develop depression. Some medical syndromes (like hypothyroidism) can mimic depressive disorder. Some medications can also cause symptoms of depression.
  • Drug and alcohol abuse.  About one-third of people with substance abuse problems also have depression. This requires coordinated treatment for both conditions, as alcohol can worsen symptoms.

Treatments for Depression

After an assessment rules out medical and other possible causes, a patient-centered treatment plans can include any or a combination of the following:

  • Psychotherapy including cognitive behavioral therapy, family-focused therapy and interpersonal therapy.
    • Cognitive behavioral therapy (CBT) has a strong research base to show it helps with symptoms of depression. This therapy helps assess and change negative thinking patterns associated with depression. The goal of this structured therapy is to recognize negative thoughts and to teach coping strategies. CBT is often time-limited and may be limited to 8–16 sessions in some instances. 
    • Interpersonal therapy (IPT) focuses on improving problems in personal relationships and other changes in life that may be contributing to depressive disorder. Therapists teach individuals to evaluate their interactions and to improve how they relate to others. IPT is often time-limited like CBT.
    • Psychodynamic therapy is a therapeutic approach rooted in recognizing and understanding negative patterns of behavior and feelings that are rooted in past experiences and working to resolve them. Looking at a person’s unconscious processes is another component of this psychotherapy. It can be done in short-term or longer-term modes. 
  • Medications including antidepressants, mood stabilizers and antipsychotic medications.
  • Exercise can help with prevention and mild-to-moderate symptoms.
  • Psychoeducation and support groups
  • Brain stimulation therapies can be tried if psychotherapy and/or medication are not effective. These include electroconvulsive therapy (ECT) for depressive disorder with psychosis or repetitive transcranial magnetic stimulation (rTMS) for severe depression.
    • Electroconvulsive Therapy (ECT) involves transmitting short electrical impulses into the brain. ECT does cause some side effects, including memory loss. Individuals should understand the risks and benefits of this intervention before beginning a treatment trial.
    • Repetitive Transcranial Magnetic Stimulation (rTMS) is a relatively new type of brain stimulation that uses a magnet instead of an electrical current to activate the brain. It is not effective as a maintenance treatment.
  • Light therapy, which uses a light box to expose a person to full spectrum light in an effort to regulate the hormone melatonin.
  • Alternative approaches including acupuncture, meditation and nutrition can be part of a comprehensive treatment plan, but do not yet have strong scientific backing.

Major Depressive Disorder with a Seasonal Pattern

Major Depressive Disorder with a Seasonal Pattern (formerly known as seasonal affective disorder, or SAD) is characterized by recurrent episodes of depression in late fall and winter, alternating with periods of normal mood the rest of the year.

Researchers at the National Institute of Mental Health were the first to suggest this condition was a response to decreased light and experimented with the use of bright light to address the symptoms. Scientists have identified that the neurotransmitter serotonin may not be working optimally in many people who experience this disorder.

The prevalence of this condition appears to vary with latitude, age and sex:

  • Prevalence increases among people living in higher/northern latitudes.
  • Younger persons are at higher risk.
  • Women are more likely than men to experience this condition.

Symptoms

This disorder’s most common presentation is of an atypical depression. With classic depression, people tend to lose weight and sleep less. This condition is the kind of atypical depression often seen in bipolar disorder—people tend to gain weight and sleep more.

Although not everyone experiences all the following symptoms, the classic characteristics of Major Depressive Disorder with a Seasonal Pattern include:

  • Hypersomnia (or oversleeping)
  • Daytime fatigue
  • Overeating
  • Weight gain
  • Craving carbohydrates

Many people may experience other symptoms as well, including:

  • Decreased sexual interest
  • Lethargy
  • Hopelessness
  • Suicidal thoughts
  • Lack of interest in usual activities and decreased socialization

Diagnosis

The key to an accurate diagnose of this condition is recognizing its pattern. Symptoms usually begin in October/November and subside in March/April. Some people begin to experience a “slump” as early as August, while others remain well until January. Regardless of the time of onset, most people don’t feel fully “back to normal” until early May.

For a diagnosis to be made, this pattern of onset and remission must have occurred during at least a two-year period, without the occurrence of any non-seasonal episodes during that same period.

This means you will not receive this diagnosis the first time you experience symptoms. If you believe you may have a seasonal depressive pattern, it’s important to pay attention to the pattern. Track your symptoms, noting when they begin and when they subside. This self-awareness can help. Mental health professionals will ask you about your observations and also your family history since mood disorders tend to run in families.

Treatment

As with most depressive disorders, the best treatment includes a combination of antidepressant medications, cognitive behavioral therapy and exercise. Unlike other depressive disorders, this condition can also be treated with light therapy. Light therapy consists of regular, daily exposure to a “light box,” which artificially simulates high-intensity sunlight.

If you know you have a seasonal pattern, ask yourself “How can I plan for this?” Because this disorder has a specific pattern, those who experience it can prepare for its arrival in the following ways, for example:

  • Exercise more toward the end of summer
  • Get into therapy around September
  • Start your lightbox in October
  • Plan a vacation to a sunny spot in January

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Where Should We Set Boundaries?

Caring for a loved one with mental illness creates life burdens. Here are just a few:

  • Helping the loved one in a crisis while trying to meet the needs of other family members
  • Dealing with family disagreements about what to do
  • Dealing with family members in various states of acceptance of the illness
  • Finding the best ways to deal with “negative symptoms” or residual symptoms, such withdrawal, silence, inability to have a conversation, irritability, resistance to treatment
  • Trying to get information you need from providers
  • Serving as the “real” case manager for the loved one
  • Staying alert to signs of decompensation and relapse
  • Dealing with your own anxiety about relapse and other horrible things that could happen
  • Balancing earning a living with caring for your loved one
  • Managing the impact of your loved one on your marriage and other family relationships
  • Dealing with financial issues and plans for future care

Setting boundaries, as we’ve said before, is for your own good and your loved one’s good in this challenging life circumstance. Here are some possible areas where you may need to set them:

  • Financial support
  • Whether or not you are willing to co-sign documents
  • Your loved one’s ability to live in your home
  • How much practical help you can provide (meals, budgeting or handling money, grocery shopping, transportation, etc.)
  • Household chores you expect your loved one to do
  • Personal hygiene requirements
  • Disruptive behaviors (refusing to follow house rules, playing music or videos too loudly, etc.)
  • Use of tobacco, alcohol and/or street drugs in your home
  • Gambling
  • Attending medical appointments
  • Taking prescribed medications

Establishing boundaries is one of the most thoughtful things you do. It is also one of the most difficult.

The best way I’ve found is to pick out one or two of the most troublesome behaviors. Assign consequences for violations of these boundaries. Clearly communicate this to your loved one. Be consistent in enforcing them.

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Yes, You Are Allowed to Set Boundaries

Note: The material below is based on information in Chapter 8 of “When You’re the Caregiver: 12 Things To Do If Someone You Care For Is Ill Or Incapacitated” by James. E. Miller. (Courtesy VA/AMI)

When you are helping to care for a loved one who has a life-limiting disability, including mental illness, you still need boundaries. The three principles for those boundaries are:

  1. You have a right to be safe and comfortable in your own home.

Violence and aggressive behavior, whether it is a symptom of mental illness or not, is never acceptable.

2. You need to establish boundaries for your own good.

Yes, it’s true – the other needs you. Yes, you can help, and yes, you may find meaning in doing that. But, no, you don’t have to do it all. And, no, you don’t have to do it to your own detriment. If you’re not careful, you’ll soon be on your way to exhaustion and burnout.

Some boundaries for you to set are physical. Some things are simply too strenuous for you. Some hours are too long for you to keep. Some chores you cannot continue to perform without relief.

Other boundaries are emotional. If you identify too completely with the other’s pain, fear or other strong emotions, you are in danger of making them your own. Your responsibility is to handle only one person’s feelings: your own.

Setting limits to your caregiving will make room for other caregivers. Family members and friends may wish to share in these duties. It’s one way they can cope with what has happened, and one way they can show their love.

Setting boundaries eliminates the need for arguments and criticism. It also makes dealing with issues easier and settles your mind. You have made the decision already. You don’t have to think it through every time.

3. You need to establish boundaries for the other person’s good. One way you can respect the other is to give them their own space. They need their privacy just as before – perhaps to read or meditate or write or just look out the window. If you do not provide for this solitary time, the one in your care may not have the strength or the heart to seek it.

The other person needs the freedom to do things on their own as a matter of self- esteem, and perhaps for continued recovery. If you insist on doing too much, the other has too little opportunity to flex their muscles. And there are several kinds of muscles they may need to flex.

Good boundaries give the other this added benefit: you can be a more objective presence in their life. Your insight can be more accurate and your feedback can be more useful.

All in all, establishing boundaries is one of the most thoughtful things you can do. It can even draw you closer together. And it is one of the most difficult things to do.

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Use LEAP to Help Your Loved One Get Treatment

How to get a loved one with mental illness to accept treatment? One path has the research to prove itself reliable: the LEAP method developed by Dr. Xavier Amador.

So many people with mental illness have a brain-based inability to understand that they are sick. Dr. Amador, whose brother had schizophrenia, developed the LEAP method to overcome this.

LEAP stands for:

  • Listen
  • Empathize
  • Agree
  • Partner

Listening begins with dealing with your own fears.

If you know what you are afraid of hearing, it can help you to stay on the LEAP path and not become reactive.

Instead concentrate on what your loved one says. Do not try to follow your own agenda for the conversation. Instead, repeat to the person what you think they are saying. Ask questions instead of making statements in response. Be open to having your loved one correct you.

If your loved one asks for your opinion, delay answering three times. One way to delay is to say: “I’m more interested in what you think about this” or “What I think doesn’t matter as much as what you think.”

Once you have delayed three times, you can answer the question. Start by apologizing, as in “I hope this doesn’t upset you.” Tell them that you could be wrong and that you want to agree to disagree, if necessary.

Good examples of this are found on the LEAP Foundations video page here.

Empathize with your loved one’s feelings.

You don’t have to agree with a delusion. But arguing against it is pointless. It’s all real to your loved one.

So response by normalizing. When they tell you that they are terrified by the voices or the delusions, say: “I think I would feel that way, too.”

It’s not hard to feel empathy for a person who is in torment. So allow yourself to do so.

Let your loved one set the pace of the discussion. Don’t push them.

Agree, and agree to disagree.

What you have heard gives you information that you can use to move into discussing treatment. Your loved one may not think that they have a mental illness. But they may want to sleep better. Or to feel less anxious. Or to be less afraid.

Approach treatment from this perspective: Offer to partner with them to deal with the problems that your loved one thinks they DO have. They don’t want to see a psychiatrist because you think they have schizophrenia. They may be willing to see a doctor to get help sleeping better.

You can agree to disagree. “I don’t you don’t want to go to a doctor. But that’s the only way we can get the medicine to help you sleep.” You can also suggest peer groups, therapy and community services as next steps.

You also can try to correct misinformation gently and with love.

Partner by helping your loved one feel safe and in control.

Move from agreement on a goal to partnering to get the help needed. You may need to cycle through the LEAP steps more than once.

Phases that help your loved one feel safe and in control include:

  • Would you mind if I …
  • I can see why you feel that way.
  • Would this be all right?
  • Can we make this call together?
  • I’d be happy to go with you.

Dr. Amador’s book – “I’m Not Sick. I Don’t Need Help!” — has been a lifesaver, literally, for many families. A link to a PDF is here. I highly recommend reading it and watching the videos linked above.

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How to Avoid Becoming Codependent

“It does not do to leave a live dragon out of your calculations, if you live near him.”

J.R.R. Tolkien

This is true.  Caregiving for a beloved person who has a mental illness is so tough.  It’s easy for the situation to consume your life. You do need to take the issues of your loved one into your calculations about how you live your life.

This can make you codependent and a little crazy, or it can make you stronger and closer to God than you imagined.  Life will be better for your loved one if you avoid codependency.

Need to take your life back?

One of the best books of practical advice I’ve read is “Stop Walking on Eggshells” by Paul T. Mason and Randi Kreger.  It’s written for people who have a loved one with Borderline Personality Disorder, but the advice is good for anyone who is feeling overwhelmed by another person’s behavior. I’ve also used “Codependent No More” by Melodie Beattie.

These books and my own experiences are reflected in this post.

Caretaking is different from caregiving.  Caregiving includes the recognition that we have to take care of ourselves first.

Caretaking develops when the caregiver’s life has become unmanageable as a result of a close relationship with another person. The caretaker makes sacrifices that are unhealthy and unbalanced. When someone asks how you are, you tell them how your loved one is. You are trying (and failing) to control your loved one’s behavior. You think about your loved one obsessively. 

The truth comes down to two basic facts:

  • You are not able to control your loved one.
  • You do control yourself.

True Christian sacrificial love means that the sacrifice comes out of life, not fear or need. Take care not to spiral into another person’s distorted world. Yet you can still listen carefully to find out what the person is really upset about.

What they say may not make sense to you, but it makes sense to them. Using your listening skills, you can find places where you both agree. Not sleeping at night is hard. Hearing voices is scary. Being worried about being followed by the FBI and space aliens is also scary.

More information about the LEAP method of communications that, research shows, works best with people with mental illness is here.

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Create a Healing Environment

Creating a low-stress, healing environment can help our loved ones with mental illness.  This post contains information from “Helpful Family Attitudes and Skills” by Dr. Christopher Anderson and “Guidelines for Creating a Low-Stress Home Environment for a Mentally Ill Person” by Dr. Brian D. Eck.

Three Key Principles 

Accept the person as ill. This is simple to say but difficult to do. The grief over a dramatic reduction in functioning is never totally resolved. Both the patient and the family cling to old images and false hopes of what the ill person could have been if he had not been afflicted with the illness. To be helpful, families should greet patients where they are, love them as they are, and promote growth that is in line with their current condition. Specifically:

  1. Mourn the loss, but not in the presence of your relative.
  2. Never discuss what he was or what he could have been in front of him.
  3. Avoid comparisons to peers.

Attribute symptoms to the illness. It’s an impossible task, but families must attempt to be objective and calm when the loved one’s brain is causing bad behavior.  This includes times when the loved one is screaming that he hates you because you are poisoning him. Our culture is more likely to attribute behavior to an illness when the person has Alzheimer’s or brain cancer.  Even when the behavior is completely unacceptable and must be restrained, such as violence, it is likely due to the illness.

Include the person in the family. Families often subtly exclude loved ones with mental illness from the family.  Examples include:

  • Not discussing the loved one with friends when they discuss their other children.
  • Not inviting other people to their home when the loved one is present.
  • Not altering family gatherings so the loved one may be included for at least part of the event.
  • Not including the loved one in family portraits.
  • Not asking the loved one to help you do things.

Creating a Healing Environment

Recognize that the illness is no one’s fault.

Understand the limits of the illness and the extent of the person’s control over his behavior.

Go slow! Recovery and growth take time. Rest is important.

Keep it simple and structured. People with mental illness do better with structure and predictable routines. Home life should have a consistent rhythm with change as seldom and gradual as possible.

Keep it calm. For the most part, try to keep the environment quiet with calm voices and limited stimulation.

Give people space. Private time and space are important for everyone.

Set limits. Have clear and appropriate expectations. Everyone needs to know what the rules are. A few good rules that are consistently enforced will help keep things calm.

Ignore what you cannot change. Let some things slide. Do not ignore violence.

Speak simply Say what you have to say clearly, calmly, and positively. When you address them, your loved ones will most likely respond only to the first couple sentences that you say to them at one time.

Offer praise and encouragement. Try to be sure that you have at least a ratio of four positive interactions to one negative or challenging interaction.

Follow doctor’s orders.  Encourage your family members to take their medications as prescribed and only those that are prescribed. If you can, have them sign a release of information so that you and the doctor can discuss your family member’s treatment program.

Carry on your business as usual. Reestablish routines as quickly as possible when they are disrupted.

No street drugs or alcohol. Emphasize that illegal drugs and alcohol make symptoms worse.

Recognize early signs of relapse. Learn what changes you will see in your family member’s symptoms and behaviors, especially those which usually occur just before a relapse. Contact their care team when you see the changes.

Find a way for the person to learn life skills.

Solve problems step by step. Work on one thing at a time and be patient as they learn from the consequences of their behavior. Let them experience the non-dangerous consequences of their choices.

Offer opportunities to meet their needs Offer opportunities to have major personal, social, activity, and competence needs met.

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It’s National Minority Mental Health Awareness Month

The pandemic and systemic racism has caused so much angst this summer.  So it’s important to talk about National Minority Mental Health Awareness Month.

The House of Representatives started this annual observation in 2008 in honor of mental health advocate and writer Bebe Moore Campbell.

The Department of Health and Human Services is highlighting its free and accredited e-learning program: Improving Cultural Competency for Behavioral Health Professionals. This program is part of the Office of Mental Health’s Think Cultural Health E-learning courses.

Despite advances in health equity, disparities in mental health care persist. The Agency for Healthcare Research and Quality reports that racial and ethnic minority groups in the United States are:

  • Less likely to have access to mental health services.
  • Less likely to use community mental health services.
  • More likely to use emergency departments.
  • More likely to receive lower quality care.

All this adds up to poor mental health outcomes, including suicide. According to the Substance Abuse and Mental Health Services Administration (SAMHSA) and the CDC:

  • In 2017, 10.5% (3.5 million) of young adults age 18 to 25 had serious thoughts of suicide including 8.3% of non-Hispanic blacks and 9.2% of Hispanics.
  • In 2017, 7.5% (2.5 million) of young adults age 18 to 25 had a serious mental illness including 7.6% of non-Hispanic Asians, 5.7% of Hispanics and 4.6% of non-Hispanic blacks.
  • Feelings of anxiety and other signs of stress may become more pronounced during a global pandemic.
  • People in some racial and ethnic minority groups may respond more strongly to the stress of a pandemic or crisis.

 

Featured by karentwinem

A Dozen Ways to Love Someone With Mental Illness

It takes enormous courage and determination to live positively with a serious mental illness. But it can happen.  And we can help.  We can respect and protect our loved one’s deep vulnerability.

Here are a dozen ways to offer that support, based on material from NAMI’s Family-to-Family program.

  1. Don’t nag or criticize.  People who have a mental illness are unable to defend themselves against a direct personal attack.  Despite irritation, try to be supportive. Keep negative and nagging remarks to a minimum.
  2. Don’t push or punish.  It doesn’t work.  It will be hard on both of you.  And it is highly correlated to decompensation and relapse.
  3. Praise positive behavior and ignore negative behavior. This is the best way to influence your loved one’s behavior is to praise the positive.  Studies show your loved one will want to perform the behaviors that earn them recognition and approval.
  4. Learn to recognize and accept symptoms.  We wouldn’t get furious if a person with epilepsy had a seizure.  So we need to accept that some behaviors are the direct result of the illness.  Don’t argue with delusions.  Don’t try to talk someone out of a clinic depression.  Also, help your loved one understand that symptoms are not their fault, but part of the illness.  Some symptoms can be controlled with treatment, including medications.
  5. Stand up to the stigma.  People with mental illness are not bad people.  They are people with a bad disease.  They are not trying to embarrass or anger us.
  6. Lower your expectations for your relationship.  Then lower them again. People with mental illness do not have the capacity to provide emotional support to us. Get help from other places.
  7. Treat them like other people.  At the same time, set basic rules and limits for the whole family.  Structure is almost always helpful.
  8. Encourage steps toward independence.  When your loved one is ready, encourage them to take small steps toward being more independent.  But keep your expectations reasonable.
  9. Don’t dwell on “what might have been.”  Accept the illness.  Still, don’t give up hope.  We need to tell our loved ones that the illness can make things difficult.  But a happy life is still possible.  People do adapt.  Some people actually get much better.
  10. Be patient in health, as well as in sickness. When our loved ones improve, stay patient and loving. It takes time to develop a lifestyle that protects them from becoming ill again.
  11. Be gentle with yourself and others in the family.  This is a marathon, not a sprint. Mental illness is often cyclical, so things will get better, then worse and then better again.
  12. Pray for grace.  Ask for tolerance, compassion, endurance and self-control.  Sometimes only God can give you the attitude you need.
Featured by karentwinem

Understand the Inner Life of a Loved One With Mental Illness

Have you ever gone 24 hours without sleep? 48 hours? How did you feel?  How did you look?

Dozed off for a second, awakened with a start and didn’t know where you were?  Lost your sunglasses or car keys and no matter what you did, you couldn’t find them?   Gone driving down a road when your sense of direction got mixed up? Had a song stuck in your head that would not go away? How would you feel if that song stayed for a month or more?

Now let’s put three or more of these items together.  Say you’d hadn’t slept for three days, you heard the same music going on and on in your head, and you couldn‘t find your keys.  How would you feel?

That thought experiment gives you just a hint of the inner life of a person with mental illness. Even in remission and even when properly medicated, chronic mental illness leaves its sufferers in a devastating limbo.

Many people with mental illness are effectively cut off from the predictable, rewarding, self-fulfilling live involvements that make existence meaningful.  They suffer deeply from their inability to be competent and successful in their daily lives.

This threatens our loved ones’ psychological integrity.  It sets up a process where they feel they must protect their “core self” at all cost.

Many behaviors that result – refusing medication, rejecting family support and community programs and disrupting family life, for example – don’t make sense to us. Yet they are directly related to their struggle to maintain some dignity and self-respect in the face of stigma, failure and shame.

Psychological traumas are associated with any serious chronic illness.

 Whenever a person has a serious chronic illness …. COPD, emphysema, chronic heart disease, or a mental illness … two things happen to the sense of self.

First, they lose their protective belief that they are exempt from harm. Much of our sense of safety and willingness to take risks rests on a belief that serious harm or real trouble will never happen to us.  Young people especially still have this sense. Second, they lose their sense of a predictable, dependable future.

This results in some common defensive coping strategies.

These are self-management techniques that are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image are taking a nose-dive.

  • Abusive criticism of others
  • Anger and attack
  • Apathy
  • Bargaining
  • Blaming others
  • Controlling or manipulative behavior
  • Defensiveness
  • Denial
  • Dependency
  • Doing nothing
  • Drug and alcohol abuse
  • Envy
  • Excessive sleeping
  • Haughtiness
  • Irritability
  • Quitting a job
  • Refusing help or services
  • Refusing medication
  • Rejection of family and friends
  • Resistance to change
  • Running away
  • Self-absorption
  • Suspicion
  • Withdrawal

From time to time in daily life, all of us will use one or more of these behaviors.  If we are criticized at work … snubbed by someone we thought was a friend … having a fight at home … we may use one of these behaviors if we feel momentarily crushed.  We complain or attack.  We “need a drink.” We get fed up and call in sick.

For us, these responses happen when we feel temporarily defeated.  We normally pull out of them quickly.  We turn to our social and personal life structure, finding comfort and reassurance.

The situation for people with mental illness is drastically different. Their social and personal life is vastly diminished. They often face poverty, stigma, disability, joblessness and social rejection. They are trapped in a runaway train going the wrong way.

The negative coping strategies become a familiar and reliable way to protect themselves from becoming even more diminished.

 

people holding hands
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Mental Illness: Chronic Illness Has Predictable Reactions

Mental illness is a chronic illness with life changing impact. Even when a person is properly medicated, in treatment and in remission, mental illness puts its sufferers in a devastating limbo.  Let’s consider what it could be like:

  • Have you ever gone without sleep for one night? 48 hours? Longer?
  • Have you ever woken up, startled and not sure where you were?
  • Have you lost your keys or your glasses and couldn’t find them?
  • Has a song been running through your head for a couple of hours?  A day? A week?

Remember how you felt in these circumstances.  Irritable, frantic or close to screaming? What if it all happened at once?

Thinking about this can give us some empathy for people with mental illness.  Furthermore, many people who have brain-based mental illness are effectively cut off from predictable and rewarding life experiences.  They suffer from their inability to competently do things that they could do before.

This life-constriction threatens our loved ones’ psychological integrity.  This sets up a process where people with mental illnesses feel they must protect themselves at all costs.  They struggle to maintain some dignity and self-respect in the face of stigma, failure and shame. Still, the behaviors that result — refusing medication, rejecting family and community support, and disrupting family life — do not make sense to us.

Whenever a person has a serious chronic illness, such as COPD, emphysema, chronic heart disease or mental illness, two things happen to their sense of self:

  1. They lose their protective belief that they are exempt from harm.  Much of our sense of safety and our willingness to take risks rests on this belief, especially among younger people.
  2. They lose their sense of a predictable, dependable future.  This results in the use of defensive coping strategies.  These self-management techniques are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image take a nose-dive.

In the next post, we will look at typical defensive coping strategies and the empathetic guidelines to help families deal with loved ones who exhibit them.

 

 

 

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How to Navigate HIPPA

Note: Ken and I attended a NAMI Franklin County workshop on February 8, 2020, that included a presentation on Navigating HIPAA for Families and Caregivers.  We learned some good information that, in addition to info we had or have found out the hard way,  we’d like to share with you. 

The Health Insurance Portability and Accountability Act (HIPPA), which went into effect in 2003, has been a major barrier for many families dealing with a loved one with mental health issues.  Sometimes this is because the law is being used correctly.  And sometimes because health care providers are over-interpreting or misinterpreting it.

Here’s one example:  My cat, Chester, needed medicine that the vet didn’t have. So she wrote me a prescription to take to the pharmacy.  Once there, the pharmacist looked at the prescription for Chester Twinem (feline) and asked me how old he was.  I said, “16.”  The pharmacist said, “That’s good.  That means you can sign his HIPPA form for him.”

I was thankful that he wasn’t older because he would not like going to the pharmacy to sign the form for himself with his little paw.

That’s how it can be.  Systems are set up based on HIPPA that actually not in the best interest of all patients. There are the true HIPAA regulations, and then there are the interpretations of those regulations by hospitals, doctors, pharmacists, etc. Here’s a look at the truth:

Who has to comply with HIPAA?

  • Most health care providers (physical, mental health, addiction services providers)
  • Health plans (private insurance companies, such as Anthem
  • Public benefit payers, such as ADAMH boards

These people and organizations are called “covered entities.”

What is protected information under HIPAA?

Basically, it’s any information that a covered entity has in its records about a person who has received health care services, including demographic information. The rule is that HIPPA covers:

  • Information that relates to the individual’s physical or mental health or condition,
  • That a HIPAA covered entity created, received or transmitted in the provision of health care or payment for health care services AND
  • Which either identifies the individual or can be used to identify the individual.

Covered entities must obtain written authorization to disclosed protected information unless HIPPA contains an exception that applies to the disclosure. One exception is sharing between treatment providers.

What disclosures are permitted to families and caregivers? 

 Information can be disclosed to a Personal Representative, an individual who has the authority to make health care decisions under Ohio law.  Other states have different laws on this. Under Ohio law, covered entities (providers) must disclose information to the individual, the personal representative or both.

The people who have legal authority to make health care decisions for another person under Ohio law are:

  • Those with a Health Care Power of Attorney
  • Those identified in a Declaration for Mental Health Treatment
  • A court-appointed legal guardian
  • The parent or guardian of a minor child

What is a Health Care Power of Attorney?

This authorizes a second person to make health care decisions when a person can no longer make them. Two health care professionals have to agree that the person can no longer make decisions for themselves. When that happens, the second person becomes a Personal Representative.

The Health Care Power of Attorney document can also authorize the designated second person to obtain health care information for and on behalf of the individual at any time. It must say specifically: “I specifically authorize my agent to obtain my protected health care information immediately and at any future time.”

 What is a Declaration for Mental Health Treatment?

This document authorizes a proxy to make mental health treatment decisions when the individual does not have capacity to consent to treatment decisions. When the declaration goes into effect, the designee becomes the personal representative. (Note: This form is long and can be difficult for a mental illness person to fill out.)

Unless limited in the declaration, the proxy has the right to obtain personal health information regarding the proposed mental health treatment of the person and to receive, review and consent to disclosure of records relating to that treatment.

 What about court-appointed legal guardians?

The court-appointed legal guardian of an incompetent person is a personal representative. An incompetent person is incapable of taking proper care of themselves and their family as a result of a mental or physical illness/disability, intellectually disability and chronic substance abuse. The process of obtaining legal guardianship takes many months.

What are the rights of parents and guardians of minors regarding information?

The parent, legal guardian or other person acting in loco parentis with legal authority to make health care decisions is a personal representative.

Exceptions include when the minor is receiving confidential mental health services and the parent/guardian has agreed to a confidentiality agreement between the provider and the minor.

The covered entity may decide not to treat a parent, etc. as a personal representative if the covered entity has a reasonable belief that the parent has abused or neglected the child. Or if treating the parent of the personal representative could endanger the individual and the covered entity decides it’s not in the child’s best interest to treat the parent as a personal representative.

What information can be given to persons involved in care?

Health-care or payment-related information can be disclosed to a family member, other relative, close personal friend or other person identified by individual. The information must be directly relevant to the person’s involvement with the health care or payment of health care.

An organization’s policies may supersede and be more restrictive than HIPAA.

Covered entities can notify family members, personal representatives and other people responsible for an individual’s care of the person’s location, general condition or death.

If a person is present in the room and has the capacity to make health care decisions, the covered entity must obtain agreement to disclose personal health information, give the ill person the opportunity to agree or object, or reasonably infer using professional judgment that, based on the circumstances, the ill person would not object.

If a person is not present, or if the opportunity to agree or object cannot happen due to incapacity or emergency circumstances, the covered entity must use its professional judgment to determine whether disclosure is in the best interests of the person.

How do you get written authorization?

The form to obtain written authorization, in which the individual authorizes the Covered Entity to disclose personal health information, has many names:

  • Release of Information
  • Written Authorization
  • Consent to Disclose
  • Standard Authorization form

The form must contain some specific elements from the HIPAA law. Generally, the covered entity is not required to disclose the information.

Ohio’s Standard Authorization Form, which is a national example, says the covered entity is REQUIRED to disclose the information.

So what should you do to get access to the information you need to help your loved one? 

First, you need to act before there’s an issue.  Make sure that your loved one’s health care providers know that you are involved in the person’s care.

Get Health Care Power of Attorney, a Declaration for Mental Health Treatment and, if in Ohio, the Ohio Standard Authorization Form signed and given to the providers.  Do this when your loved one is well enough to discuss and sign to provide you with updates or notifications in the event of an emergency.


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Tips to Reduce Anxiety About the Coronavirus

Scary dreams and worries can kick off an overwhelming level of anxiety during this pandemic.  While it’s bad for everyone, it’s worse for people who have mental illness.

Those who have existing issues with panic disorder, depression and generalized anxiety are almost certain to have more intense symptoms unless we take preventive measures. The symptoms can include digestive problems, dizziness, elevated heart rate, fatigue and insomnia, among other things.

I got the idea for this list from an article by Noma Nazish in ForbesLifeand have adapted for my website mindfulchristianyear.com

Control what you can control. And that means you. Wash your hands. Stay six-feet away from people. Still, it helps to smile and be friendly when you pass people from this distance. We also can pray for each person we pass on the street or in the park.

Schedule times for prayer and quiet. If you don’t already have a routine for regular prayer during the day, it’s a great time to start. An alarm on my phone reminds me to stop about every three hours to pray or read Christian materials. Sarah Young’s books, starting with Jesus Calling, are excellent. Her app is very good as well. I also use materials in apps like Pray-As-You-Go, the NIV Bible, Ending Your Day Right, Centering Prayer and the Divine Office.

Make this a good time for your children or grandchildren. Our attitudes will decide how the kids remember this time. Model faith, calm and self-care. Let your kids talk through their fears and concerns. Listen for increases in symptoms.  Determine whether you need to make a call to your child’s psychiatrist to provide information. Make sure you also find some ways to have fun together.

Use block scheduling to set up a routine. Setting up a routine will help to keep you and your family focused on the good. Block scheduling – setting aside an hour or two for each major kind of activity – has been very useful. Activities can include: reading, homeschooling, housework, paperwork, making things, exercise, shopping online, etc.

Reduce your exposure to news and social media. I look at my social media channels once a day. I also read the COVID-19 round-up on my Associated Press app and one local news app in the morning and at night. We do watch the PBS NewsHour as well. Other than that, I try to concentrate on my own life. I think the most reliable sources of information are the Centers for Disease Control and Prevention (CDC), WebMD, the Weather Channel’s COVID-19 section, the World Health Organization (WHO) and the John Hopkins’ Coronavirus Resource Center.

Stay connected to family and friends. This is the era of FaceTime calls and Zoom/Skype meetings. There’s also the good old-fashioned phone call and new-fashioned texting. Check in with your loved one with mental illness on a regular basis without seeming too anxious yourself. Make an effort to cheer your friends and family up. It will cheer you up, too.

Do a daily stress-reduction exercise. My isolation gift to myself was a subscription to the Breethe app, which is offering specific relaxation exercises regarding coronavirus anxieties. I also use Calm, Meditation Oasis and the Cleveland Clinic’s Stress Meditation. The relaxation exercise is on my block schedule for a specific time in the afternoon.

Eat well. Stress eating is one of my problems, but I do know that mindfully choosing to eat a nutritious meal before I can have my salty/sweet treat is cutting down on the overeating.

Get out in the fresh air and sunshine. Take a daily walk. Set up your patio furniture early or sit out on your porch to read.

Be the hands and feet of Christ. Get involved in helping other people during this time. Your church may have ideas. You also can call a humanitarian organization to see if you can help. Many people are helping from home by calling others to see how they are doing.

Like everything in life, this crisis is offering opportunities to grow as Christians.

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Know Your Meds: Long-Acting Injectables

NOTE:  This information came from NAMI and other sources, as well as my own experiences.

Long-acting injectables (LAIs) can be helpful when an individual with mental illness either refuses or is not compliant with medication, often with very unfortunate results.  Most of the people I’ve met who are using LAIs got started in a hospitalization or a situation in which they had regularly become a danger to themselves.

LAIs slowly release medicine into the blood. Injectable medications used for individuals living with mental illness include: Abilify Maintena®, Aristada®, Haldol decanoate®, Invega Sustenna®, Invega Trinza®, fluphenazine decanoate, Risperdal Consta®, and Zyprexa Relprevv®. The LAIs can last anywhere from 2-12 weeks with just one dose, which helps to control symptoms of mental illness.

What do LAIs do?

LAIs treat psychosis (hallucinations or delusions) in individuals with schizophrenia. Some LAIs may be used as mood stabilizers in individuals with bipolar disorder.

How can an LAI help?

Living with active psychosis causes many people to make very bad decisions, which can result in arrests and involuntary commitments.  LAIs can help individuals stick to a medication plan.

When comparing LAIs to pill medications, LAIs may lower the chances of someone going to the hospital. LAIs allow for a steady level of medicine in the blood. These steady levels help lower the chance of side effects. The LAIs may also help improve quality of life and satisfaction with medicine.

How are LAIs given?

LAIs are given as an injection in the muscles of the arm or bottom. When starting a LAI for the first time, individuals may also have to take pill medication for a few weeks. The pill allows the injection to have time to start working. Injections are given every two to 12 weeks depending on the medication.

What if I’m interested in an LAI?

If interested in a LAI, talk to a doctor. A LAI may not be right for every person with a mental illness. The main side effect of a LAI is pain at the injection site.

When talking to a doctor, ask:

  • How will a LAI help?
  • What symptoms will a LAI control?
  • What side effects may occur?
  • What blood work will need to be done?

How can I pay for an LAI?

LAIs are usually expensive.  Many insurance plans should help cover the cost of one of the LAIs. The drug company for each medicine may also be able to help.

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Know Your Meds: Mood Stabilizers

Mood stabilizers are typically used to treat intense, repeated shifts in a person’s mood, which may be common for those experiencing bipolar, schizophrenia, or borderline personality.

Many mood stabilizer drugs are also commonly categorized as anticonvulsant medications.

The oldest of them, lithium, has been in use for over 50 years and has proven very effective, particularly for bipolar disorder, type I. However, regular blood tests are required when taking lithium because of potential serious side effects to the kidneys and thyroid.

Newer mood stabilizers, many of which were originally used to treat seizure disorders, may work better than lithium for some people. Mood stabilizers can prevent manic or hypomanic episodes and depressive episodes. but also have side effects to know about and monitor.

Common mood stabilizers include:

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Know Your Meds: Anti-Anxiety Medications

The next class of medication are anti-anxiety medicines, which reduce the emotional and physical symptoms of anxiety.  Benzodiazepines such as alprazolam (Xanax) can treat social phobia, generalized anxiety disorder and panic disorder. This information comes from NAMI and goodtherapy.org

These medicines work quickly and are very effective in the short-term. However, people prone to substance abuse may become dependent on them.

Because the body can become used to the meds, doctors may need to increase the dosage over time to get the same therapeutic effect. People who stop taking benzodiazepines suddenly may experience unpleasant withdrawal symptoms. Other potential side effects include:

  • Low blood pressure
  • Decreased sex drive
  • Nausea
  • Lack of coordination
  • Depression
  • Unusual emotional dysfunction, including anger and violence
  • Memory loss
  • Difficulty thinking

Antianxiety and antipanic medications on the market include:

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Know Your Meds: Antidepressants 101

Antidepressants improve symptoms of depression by affecting the brain chemicals associated with emotion, such as serotonin, norepinephrine and dopamine. The following information comes from NAMI, goodtherapy.org and other sources.

Selective serotonin reuptake inhibitors (SSRIs) and selective norepinephrine reuptake inhibitors (SNRIs) are newer antidepressants with fewer side effects than older drugs, but no medication is entirely free of side effects. Potential side effects of SSRIs and SNRIs include:

  • Nausea
  • Nervousness, agitation or restlessness
  • Dizziness
  • Reduced sexual desire/difficulty reaching orgasm/inability to maintain an erection
  • Insomnia, drowsiness
  • Weight gain or loss
  • Headache
  • Dry mouth
  • Vomiting
  • Diarrhea

One antidepressant (Bupropion) affects mostly the brain chemical dopamine and is in a category of its own.

Meanwhile, older types of antidepressants, including tricyclics and monoamine oxidase inhibitors (MAOIs), may be prescribed by a mental health professional if newer medications do not seem to be effective. Common side effects of tricyclics include:

  • Dry mouth
  • Blurred vision
  • Constipation
  • Urine retention
  • Drowsiness
  • Increased appetite, leading to weight gain
  • Drop in blood pressure when moving from sitting to standing, which can cause lightheadedness
  • Increased sweating

MAOIs are the least-prescribed of all antidepressants because they can cause dangerously high blood pressure when combined with certain foods or medications. People taking MAOIs must watch their diets carefully to avoid potentially life-threatening complications. Off-limits foods typically include aged cheese, sauerkraut, cured meats, draft beer and fermented soy products such as miso, tofu or soy sauce. Some people may have to avoid wine and all forms of beer.

Some antidepressants may be useful for post-traumatic stress disorder, generalized anxiety disorder and obsessive-compulsive disorder but may require higher doses. Symptoms of depression that are part of a bipolar disorder need more careful assessment because antidepressants may worsen the risk of mania and provide little relief from depressive symptoms. As always, ask your doctor about what treatment options are right for you.

When will the medication work?

In the first few days, the person may have better sleeping and eating habits. In the first 1-3 weeks, the person may have better memory, sex drive, and self-care habits. They may also feel like they have more energy and start to have less anxiety.

After 2-4 weeks, the person may start to have a better mood, less feelings of hopelessness, and less suicidal thoughts. They may also start to feel interested in hobbies again. It may take 6-8 weeks for the medication to fully work.

What are the common side effects?
These are most common in the beginning, and usually get better within 1-2 weeks.

  • Headache
  • Upset stomach, diarrhea
  • Sleepiness or feeling more awake

Some antidepressants can cause sexual problems, such as a decrease in sex drive or problems with ejaculation.

How long do people need to take this medication?
Some people need to take medicine for up to 1 year after they feel better. Others need to take medicine long-term to prevent their symptoms of depression or anxiety from coming back. The length of time depends on how bad the depression or anxiety was, how long they had it, and how many times they have had depression or anxiety in the past.

Here are some of the medication names and their types, with some links to their descriptions in goodtherapy.org

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Know the Meds: Antipsychotics 101

Note: This information came from the websites of NAMI, goodtherapy.org and other sources, as well as my own experience. 

Antipsychotics come in two major categories: typical and atypical. Occasionally they are called first and second generation.

The antipsychotics developed in the mid-20th century are the typical and first generation class.  Atypical or second generation were developed more recently. These medications reduce or eliminate the symptoms of psychosis, such as delusions and hallucinations, by affecting the brain chemical dopamine.

Both types of antipsychotics are used to treat schizophrenia and schizoaffective disorder.  The atypical also are used to treat acute mania, bipolar disorder and treatment-resistant depression.  Both kinds work, but they have different side effects.

What are the names of these medications? 

What are the side effects?

Side effects are most common at the beginning, and most get better over time.  The most common are:

  • Sleepiness
  • Dizziness
  • Upset stomach
  • Increased appetite

First generation antipsychotics are more likely to cause movement issues, such as tardive dyskinesia (a condition in which the brain misfires resulting in random, uncontrollable muscle movements and tics.)

The second generation can cause weight gain.

How long does it take to produce results? 

It often takes four to six weeks for the medication to fully work.  However, in the first three days, the person may feel less upset and angry.

After one or two weeks, the person may have a better mood and improved self care habits.  You may see clearer thinking, with fewer hallucinations and delusions.

How long do people take this medication? 

It depends on the situation: how bad the problems were, how long the illness lasted before treatment, and how many times they have had episodes.  Some people only need it for one or two years, while others need it for a lifetime.

 

 

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Know the Meds, Part 1

The treatments for mental illness conditions vary from person to person, which doesn’t make things any easier.  People with the same diagnosis can have vastly different experiences with treatments and medications.

Of course, your loved one’s mental health provider is the best source for information about treatment.  Getting a HIPPA release so you can discuss the situation with them is very useful.  The articles in this series, based on information from NAMI and my experience, are general information to help you understand the treatment options when they are discussed.

Psychotropic, or psychiatric, medications influence the chemicals in the brain that regulate thinking and emotions.  While they can be more effective when combined with therapy, often a person needs the medication first to reduce symptoms to allow them to participate in the therapy.

Predicting what works is a challenge.  One field of research called pharmacogenetics does genetic testing to help determine how medications will interact with a person’s genes.  Some people I know have taken these tests, so it’s worth discussing it with the doctor. It’s also helpful to tell the doctor if a medication has worked well for someone else in the immediate family.

Another major challenge is that the medications rarely work instantly.  A person may need to take medication for as long as a few months to see a difference, which becomes even more irritating if side effects are causing issues.

To try to stop that, physicians usually start with small doses and build up to get to the point where the symptoms are better.  It’s important that your loved one does not stop medicine at once.  Usually, it’s better to taper off to avoid unpleasant effects.

The main categories of psychotropic medicine are:

  • Antipsychotics
  • Antidepressants
  • Anti-anxiety medicine
  • Mood stabilizers

We will look at each in this series.

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15 Ways to Abide With Jesus

Want to enjoy the presence of Jesus in your life as a caregiver?  Here’s 15 steps to help you get there.

  1. Try a daily prayer of surrender. “Today, this is Your day… Today, I am Yours… May Your Spirit lead, guide and prompt me throughout my day… May I be sensitive to Your prompting and respond accordingly… Today, I surrender my life to You…
  2. Read a short section of Scripture or a devotional book as often as you eat.
  3. Pray Bible verses. Even if it’s just a few verses, pray the Bible back to God.  This is easier if you put up Bible verses around the house. That can be in framed calligraphy, a perpetual calendar of Biblical thoughts or simple Post-it notes.
  4. Be in the day with a plan and the willingness to disregard the plan to respond to what God allows.
  5. Keep focused on what you are doing. When you walk with Jesus, everything you do can be a prayer. This is where the practice of Christian mindfulness comes in.
  6. Listen to yourself and be compassionate. Overcoming restlessness and the need to focus on the trivial to avoid the pain of grief is a problem that I have, and I think many others who are caregivers of people with mental illness have as well. The Three Things exercise can help you to focus your attention, reduce restlessness and add calm: Stretch or drink some water. Note three things you see, three thinks you hear and three feelings you have. 
  7. Refocus during transitions. Try to center yourself as you move from place to place, from event to event. You can say:  I am calm, peaceful and aware of the presence of God as I enter this home/door/time/event.
  8. Carry on a conversation with God and try to make it continual.
  9. When you run out of words, say the Jesus prayer. Using a “Jesus” prayer when you need to calm down or you are in a situation in which you would just look at your phone helps. You can pray “Jesus, Jesus, Jesus” over and over.  I use “Come Holy Spirit.”  It’s also a nice way to go to sleep at night.
  10. Stop to praise God. 
  11. Be a “yes” to all that is in God and to each circumstance and person who comes into our lives. Have faith that God is at work even in horrible circumstances. We should look at all circumstances, environments, and even all persons as coming through God’s hands so we can serve Him. This is the “good” that all things work for as mentioned in Romans 8:28: 28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Acceptance of this kind makes caregiving less depleting and exhausting.It’s so challenging, but you can accept the reality of the circumstance and not argue in your mind that it should be different.  Second, you also need listen to yourself rather than taking a treat (food, a drink or a nap). Acceptance is not the same as being happy in sad circumstances. You cannot pretend everything is fine, because your mind knows it’s not. Accepting that everything is not fine, but it is impossible for you to change allows you to offer more empathy without draining excessive energy. We are not in heaven yet, and bad things happen in a fallen world.  God is still present and wants to abide in you.  The joy of the Lord is your strength.  Follow an energy draining situation with an energy builder such as reading, meditation, pray, eating something healthy and tasty.
  12. In everything give thanks. 
  13. Think on these things. Philippians 4:8:Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things. I made up a phrase to help me remember this: The normal real person likes an excellent pizza. (true, noble, right, pure, lovely, admirable, excellent, praiseworthy).  This helps me to do a thought check when I seem to be on the wrong track.
  14. Give yourself a GIFT list.The GIFT list idea originated with Pam Young and Peggy Jones, and I adapted it to give myself something else to think about. I keep the daily list with my to-dos. GIFT stands for: Grace, Imagination, Focus and Thanksgiving.  I ask for a Grace from the list of the fruits of the Holy Spirit (love, joy, peace, patients, kindness, goodness, righteousness, gentleness and self-control). For Imagination, I pick a virtue and image how I could incorporate that virtue into my day.  Focus is the day’s predominate activities.  (Attending meetings, writing, planning, cleaning, making things, running errands, enjoying the family, taking a Sabbath, etc.)  And Thanksgiving is a gratitude list I fill out as the day goes on.  When my mind goes on a tear, I deliberately turn it back to the Grace, Imagination or Focus of the day.
  15. Summon up your courage and pray the welcoming prayer. This is the scariest prayer I’ve ever prayed: Welcome, welcome, welcome. I welcome everything that comes to me today because I know it’s for my healing. I welcome all thoughts, feelings, emotions, persons, situations and conditions. I let go of my desire for power and control.  I let go of my desire for affection, esteem, approval and pleasure. I let go of my desire for survival and security. I let go of my desire to change any situation, condition, person or myself.  I open t the love and presence of God and God’s action within. 

This practice of the presence of God, somewhat difficult in the beginning, when practiced faithfully, secretly brings about marvelous effects in the soul, draws down the abundance of God’s grace upon it, and leads it imperceptibly to this simple awareness, to this loving view of God present everywhere, which is the holiest, the surest, the easiest, and the most efficacious form of prayer. People who lean on Jesus know things that other people don’t know.

 

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The Aim of Christian Meditation and Mindfulness

The prayer of the presence of Jesus and Christian mindfulness are two parts of a whole:  the experience of abiding in Jesus.

In their book “Practicing the Prayer of Presence,”  Adrian van Kaan and Susan Muto wrote:  “The best way to cope with suffering is not stoic indifference or pessimistic complaints, but constant conversation with God in all matters, great or small, at all times and in all places.

“A deeper way of learning to pray is to try to live in the presence of God. This is the beginning of always praying as the Gospels and St. Paul recommend. We try in a relaxed way to become aware of His Presence all the time we are awake. We need the grace of quiet concentration and perseverance to develop this habit.

“If we practice the prayer of Presence, we will be better able to check our speech.  Is it agitated, restless, disquieted?  Or is it calm, deliberate and quietly rooted in Christ, who is our Way, Truth and Life?”

What they are talking about has similarities to secular meditation and mindfulness.  But it is quite different.  What the world calls meditation is just a preliminary step that Christians call “recollection” exercises.  It is necessary to bring our spirit together again in inner stillness if we want to be fully present to the Lord.

The aim of Christian mindfulness meditation is:

  • To make our minds familiar with the truths of God.
  • To dwell on those truths.
  • To apply the insights we receive to our lives.

One of the reasons that mindfulness is a popular today is that research shows that it helps to reduce stress and even pain.  Mindfulness can release the mind from an overgeneralized state.  It relieves the automatic brooding, avoidant mind.  Loving kindness meditation and kindness to one’s self also help to decrease the fears that come from feeling responsible when anything goes wrong.  Being overly responsible is an issue I have.

Abiding in the Lord has elements of this mindfulness: seeking to concentrate on the present moment.  “The day’s own trouble is sufficient for the day,” as Jesus said. But it goes beyond that to recognize that God is present in the here and now.  God is here.  God is now.

The condition to receive the presence of God is emptiness.  We must empty ourselves inwardly of all that is not God, including distraction, agitation, fear and nervous tension.  All must give way to the flow of quiet presence.

The person who is experienced with this kind of effort is not a person whose mind does not wander.  Everyone’s mind wanders.  The experienced person is someone who gets very used to beginning again and again and again.

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Why Low Expectations Are a Good Thing

How do you feel when you expect a $100 tax refund and the IRS finds a mistake in your favor, so you get $1,000 instead?

How about when you expect to wait for 10 minutes and you end up waiting an hour?

The way that things turn out compared to how we expected them to turn has a lot to do with how we feel.  Understanding the impact of our expectations can help us deal with the pain and frustration of loving someone with a brain-based (mental) illness.

For example, living with a person who has clinical depression is hard.  We want to help, but we don’t know how. Sometimes our efforts make things worse.  The same is true when you live with a person who suffers from anxiety disorders, bipolar disorder or the spectrum that is schizophrenia.

All of them have an intense need for love, but they often have trouble being loving in return.

What would an expert in the psychological community expect from a person with clinical depression?  Low energy, for one thing.  The depressed have so little energy that they rarely can think about other people.  So they seem self-centered.  The depressed person can feel an inner anger that life isn’t fair.  Yet, getting in arguments to try to talk them out of their hopelessness doesn’t work.

A person with bipolar disorder is expected to show signs of the illness.  The mood swings between mania and depression, with long or short periods in between, may seem as if they don’t have a rhyme or reason.  The reason is chemical, and it needs treatment.

Living alongside someone with borderline personality disorder is a true roller coaster ride.  One minute you are the best, and the next you are seen as a monster. “Walking around on eggshells” is a common description of daily life in that household.  People with this illness are in emotional pain almost all the time, and they project issues on others.

In short, people with mental illness are expected to behave in ways you don’t like.  They can no longer meet many simple expectations that we had for them before the illness.  One of the toughest issues family members have is deciding what the new expectations should be:  Can he work?  Can she do chores?  Can he join us for family dinner?  Can she take a shower without prompting?

This change has more impact on us that we want it to have.  We experience deep pain as we try to adjust,  as one thing after another becomes too much for them to do.  Grieving this loss is tough at the beginning, and it’s just as tough as time goes on.

You can measure stress by the difference between what is happening and what you think should be happening.  So your stress will be intense, unless you change your thinking about “what should be.”

At the beginning of a loved one’s mental illness, a psychologist suggested to us, “Why don’t you try not having any expectations at all?”  Easier said than done, and hard to hear.

But we learned to keep our expectations as low as possible.  To fill in the gap,  it’s wise to turn to God’s promises.  God is both sufficient and faithful,  walking with us through this valley of the shadow of death.  Abiding with the Lord can give you expectations of peace and comfort.

 

 

 

 

 

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It Gets Better: The Emotional Stages of Mental Health Caregiving

Just as Elizabeth Kubler-Ross developed a stage-of-grief model, several sociologists have created a model for the emotional stages of loving someone with mental illness.

Dr. Joyce Burland, a psychologist, spent two decades of helping her mother and her daughter deal with schizophrenia.  She found no model for the experience, so she created the family education curriculum Family to Family for NAMI.  (My husband and I have taken this course and recommend it to many families in our support group.)

The Burland model has three stages:

  1. Heads Out of the Sand – The family knows their loved one has a mental illness.  They may still be in denial about how severe the illness is. The family needs education (especially about the prognosis for the illness), crisis intervention and emotional support.
  2. Learning To Cope – The family accepts the illness while still experiencing emotions like grief, anger and guilt. They need education about self-care and coping skills for their loved one, as well as peer support.
  3. Moving Into Advocacy – Some families eventually become advocates to help others struggling with these issues.

Dr. David Karp, a sociologist at Boston College, proposed a second model with four stages:

  1. Emotional Anomie – This stage comes before a firm diagnosis.  It can include fear, confusion, bewilderment and questioning of one’s possible “guilt” in the situation.  (“What did I do wrong to cause this?”) It also contain the fervent hope that the problem will “just go away.”
  2. Hope and Compassion – This occurs when the diagnosis is provided.  Fear and confusion directed at the loved one turn to compassion.  The family starts to learn about the illness and to understand they need to be caregivers.  While still hoping that the illness will be resolved quickly, some caregivers may feel that they are willing to do anything to make things better for their loved one.
  3. Loss of Dreams and Resentment –  Now the family understands that the illness may be a permanent condition.  Some experience anger and resentment because it is a problem that they cannot fix.  The resentments also arise from realizing that the illness will have a long-term impact on their own plans.  Some, such as adult children dealing with an ill parent, find themselves in a role reversal situation.  Many rethink their expectations for the ill loved one, struggling to understand what is realistic.  The struggle to decide what behaviors the loved one can control and what they can’t becomes a daily reality.  Families begin the process of trying to love the person and hate the illness. As the demands of caregiving continue, some families become isolated from friends and other family members.
  4. Acceptance –  The family realizes that it can’t control the loved one’s illness.  They feel somewhat relieved that they are not responsible for fixing the issue.  Karp was the person who created the “4 Cs”:  “I did not cause it. I cannot control it. I cannot cure it.  All I can do it cope with it.”   At the same time, the family more easily sees their loved one’s strength and courage in the struggle.  This may led to more respect and even admiration for that person.

Where you do think you fall in these scales?  Have you experiences the differences between having a loved one with a “physical” illness, such as cancer or heart disease, and having a loved one with a brain-based disease?

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When the Worst Happens

Help Wanted

Needed immediately: a person to work 24 hours a day, 7 days a week, 365 days a year. Work gets tougher on holidays and trips. No salary.  No benefits. You may spend significant amounts of your own money out-of-pocket. No training. Learn by trial and error, although  what works one day might not work the next.  Be prepared for days that break your heart and times when you will be mistreated on the job.

If you are a caregiver for a person with mental illness, this is your job description. The shock and horror of getting this job has a seismic impact on the family.  Having a family member with any kind of serious illness is devastating.  Dealing with a mental illness … so often a brain-based physical illness … has extra components that make it even more grueling.

Factors Influencing the Family’s Response

A training put together by Michelle D. Sherman, Ph.D, for the Department of Veteran Affairs to help families impacted by post-traumatic stress disorder, clinical depression and other illnesses common to veterans noted that some families have an easier time responding to this situation than others.

The factors that impact the situation in any health crisis include:

  • The family’s support system.
  • Previous experience with or knowledge of the illness.
  • The family’s coping pattern in times of great stress.
  • Access to health care and the quality of that care.
  • Financial status.
  • Type of onset of the illness (sudden vs. gradual, public vs. private).
  • Nature of the symptoms.
  • Other demands on the family.
  • The loved one’s compliance or refusal to participate in care.
  • Prognosis of the illness.

Other factors are specific to mental illness:

  • Reactions by others are unpredictable and even hurtful.
  • Family members feel guilt that they somehow caused the illness, could have prevented the illness or did not detect it early enough. It’s typical to feel guilty about your reaction to previous behavior caused by the illness that you felt were intentional actions.
  • The prognosis and course of treatment are less concrete than with other physical illnesses.
  • The loved one can have embarrassing behaviors that could even result in arrest.
  • The loved one (as well as some family members) can refuse to accept the diagnosis.  This can result in failure to comply with treatment, lying about that, anger toward the family and total lack of appreciation for the family’s efforts.

As a result, families feel isolated. When they turn to their social and religious support, some get no help. Many fear telling others about the illness and do not ask for help.  Tension within the family can get very tough, especially when one or more family members refuse to believe that the loved one has a mental illness.

Families do tend to go through stages as they deal with the situation.  Next time, we will look at the patterns involved in this.

 

 

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My Loved One Is Showing Signs of Mental Illness. What Do I Do?

Step One: Trust your instincts. This is especially true if you are very close to this person …. it’s your spouse or your child or your best friend. If their behavior seems unusual and demonstrates one or more of the warning signs of mental illness, you need to pay attention. The worst thing you can do is to ignore it.

If the person is a teenager, you may be tempted to dismiss this as a stage. Yes, many teenagers have episodes of sadness, anxiety, frustration and feelings of being overwhelmed. The episodes should not last more than a few days at most.

If the feelings last for weeks or months, speak to your child about your concerns and consult your family doctor. Teenagers who have stopped participating in activities, no longer connect with friends, and are chronically disconnected, angry and sad are exhibiting abnormal behavior and need help.

Likewise, it is never normal to have a psychotic episode. Even if someone appears to go back to normal, they need a professional assessment.  It won’t hurt anything to check into the situation. Go along with the delusion to get the person to a doctor.

What to Say and How to Say It

So what kind of conversation should you have with them? Here are some tips:

  • Speak in a calm voice.
  • Say what you mean and listen. “I am concerned about you because …” “How are you feeling about this?”
  • Try not to interrupt the person.
  • Avoid sarcasm, whining, threats or yelling.
  • Don’t criticize or call names.
  • Try not to use the words “always” or “never.”
  • Deal with the now.
  • Remember: This has nothing to do with you.  It’s a brain condition.
  • Acknowledge that you are in this together.
  • If things get heated, take a break and come back to the discussion later.

If you are seeing behavior or hearing language that indicate the person is a threat to themselves or others, take them to the emergency room. Tell the staff at the check-in what is going on immediately. If you have a specialized system for dealing with people in psychiatric emergencies in your town, you can call that organization (Netcare in Columbus, Ohio, for example) instead.

Otherwise, make a doctor’s appointment. Some psychiatrists who do not take regular insurance may be able to see you more quickly. Your loved mental health organization may have some names you can call.

While you are waiting for the appointment, help the person take steps to reduce their stress. Encourage them to do something relaxing. Try to help them keep a regular routine of sleep, activity, meals and medication. Again, trust your instincts. Go to the emergency room if you suspect psychosis or suicidal thoughts.

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Early Warning Signs of Mental Illness

The warning signs of mental illness often come early in life. Fifty percent of cases of mental illness begin by age 14, and three-quarters begin by age 24.

Looking for warning signs will help you, your loved one and his or her treatment providers get a head start on managing the illness. Generally speaking, it’s hard for the people with the illness to fully recognize the warning signs. So often his friends and family will start to see problems first.  Here are some typical signs:

  • Increased irritability.
  • More noticeable tension, anxiousness or worries.
  • Increased sleep disturbances (such as hearing your loved one being up all night and sleeping through the day OR  not sleeping for more than 24 hours)
  • Depression.
  • Social withdrawal in more extreme forms, such as refusing to leave his or her room even to eat, spending most of the time alone.
  • Deterioration of school or job performance.
  • Concentration problems (taking longer to do tasks, have trouble finding tasks, having trouble following a conversation or a TV show).
  • Decreasing or stopping medication or treatment (such as, refusing to go to the doctor or the case manager appointment, skipping the vocational program).
  • Eating less or eating more.
  • Excessively high or low energy.
  • Lost interest in doing things.
  • Poor hygiene or lost interest in the way he or she looks.
  • Saying that he or she is afraid that he or she is “going crazy.” 
  • Becoming excessive in religious practices.
  • Feeling bothered by thoughts that he or she can’t get rid of.
  • Mistrustfulness or suspiciousness.
  • Showing emotions that do not fit the situation.
  • Vague speech.
  • Speech that doesn’t make sense.
  • Making up words.
  • Inappropriate responses … laughing or smiling when talking of a sad event, making irrational statements.
  • Unusual idea or beliefs.
  • Feeling completely overwhelmed. 
  • Leaving bizarre voice mail messages, outgoing messages or writings.
  • A blank vacant facial expression.
  • Rapidly changing mood … from happy to sad to angry for no apparent reason.

Warning Signs of Mental Illness in Children

  • Severe and recurring depression … feeling very sad or withdrawn for more than two weeks.
  • Explosive, destructive or lengthy rages, especially after the age of four.
  • Extreme sadness or lack of interest in play.
  • Severe separation anxiety.
  • Talk of wanting to die or kill themselves or others.
  • Dangerous behaviors, such as trying to jump from a fast moving car or a roof.
  • Grandiose belief in own abilities that defy the laws of logic (possessing ability to fly).
  • Sexualized behavior unusual for the child’s age.
  • Impulsive aggression.
  • Delusional beliefs and hallucinations.
  • Extreme hostility.
  • Extreme or persistent irritability.
  • Telling teachers how to teach the class, bossing adults around.
  • Creativity that seems driven or compulsive.
  • Excessive involvement in multiple projects and activities.
  • Compulsive craving for certain objects or food.
  • Hearing voices telling them to take harmful action.
  • Racing thoughts, pressure to keep talking.
  • Sleep disturbances, including gory nightmares or not sleeping very much.
  • Drawings or stories with extremely graphic violence.

Trust Your Instincts

If the person is a family member … a child or husband … and their behavior seems unusual to you, trust your instincts.

If your teenager is not engaging in activities or with friends and is chronically disconnected, angry and sad, the behavior is abnormal and needs intervention.

Many teenagers have episodes of sadness, anxiety, frustration and feelings of being overwhelmed.  The episodes should not last more than a few days at most.  If the feelings are continual and your teen is chronically anxious, speak to your child about your concerns and consult your family doctor.

Don’t ignore. Don’t accept other people saying it’s just a stage. Trust your instincts that something is wrong.

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Mental Illness: Brain-Based, Common and Episodic

Mental illness is a difficult phrase: It implies that this kind of illness is different from all other kinds of illness. It’s not. It’s a brain-based illness, for the most part. I use the phrase because it is widely understood, not because it is appropriate.

Mental illness is common, and it’s generally episodic. Things get better and then things get worse and then things get better again. 

Illness or Individuality?

There are plenty of people who are very shy, or believe in government conspiracies, or are sure that they talked to the dead, or heard directly from God.  Does that mean they are mentally ill?  Not necessarily.

To one degree or another, many people hold views that are unusual or eccentric. To qualify as mental illness, the behavior must do these things:

  1. The symptoms must interfere with the person’s ability to have social relationships, go to school or hold down a job, or take care of himself.
  2. The most severe symptoms must last for at least a month, unless the period is cut short with successful treatment.
  3. The symptoms are not explained by drug abuse, the side effects of another medication or the impact of another illness.

Is Mental Illness Really Common, Though?

Yes. It may not seem common because it is so often hidden. Here are the facts from NAMI and the World Health Organization:

  • About 1 in 5 adults in the U.S. – 43.8 million or 18.5% experience a mental illness in any given year.
  • About 1 in 25 adults in the U.S. – 9.8 million or 4% – experiences a serious mental illness in any given year that substantially interferes with or limited one or more major life activities.
  • About 1 in 5 children aged 13-18 (21.4%) experiences a severe mental disorder at some point.  For children aged 8-15, the estimate is 13%.
  • 1.1% of adults in the U.S. are on the schizophrenia spectrum.
  • 2.6% of adults in the U.S. have bipolar disorder.
  • 6.9% of adults in the U.S. – 16 million – had at least one major depressive episode in the past year.
  • 18.1% of U.S. adults have an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • About the 20.2 million adults with a substance use disorder, 50.5% – 10.2 million adults – have a co-occurring mental illness.
  • About 26% of homeless adults staying in shelters have a serious mental illness.
  • About 20% of state prisoners and 21% of local jail prisoners have a recent history of mental illness.
  • 70% of youth in juvenile justice systems have at least one mental health conditions and at least 20% have a major mental illness.
  • More than 90 percent of children who commit suicide have a mental illness.
  • Only 41% of adults with a mental health condition received medical services for it.
  • Only half of the children with mental health conditions get help.
  • African Americans and Hispanic American use mental health services at about half the rate as Caucasian Americans.  Asian Americans get services at about one-third the rate.
  • Percentage of people with mental illness that Jesus cared enough about to die for:  100%
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Are You a Sponge or a Mirror?

Need to take your life back? One of the best books of practical advice I’ve found is “Stop Walking on Eggshells” by Paul T. Mason and Randi Kreger. The authors focus on Borderline Personality Disorder, but the advice is good for ANYONE who is feeling overwhelmed by another person’s behavior.

You start by asking yourself:  Are you a sponge (soaking up the other person’s pain) or a mirror (reflecting reality back to the person)?  The advice about improving communication is particularly good.

You must not spiral into another person’s distorted world, but you still can listen carefully to detect what the person is really upset about. It’s hard to be verbally attacked for a delusion, but the pain and fear underneath that attack are real.

While the person’s feelings may not make any sense to you, they make sense to them. Don’t judge. Don’t trivialize. Don’t be condescending. Use active listening skills to validate the feelings.

Still you must know your boundaries … what you will and will not tolerate.  Stay consistent, no matter what. Research shows that inconsistent response to a behavior actually makes that behavior more persistent than even rewarding the behavior every time does.

When things need to change, make specific requests in simple language, as in: “I want you to stop hanging up on me and then immediately calling me back when we are talking on the phone” rather than “Stop being so disrespectful.”

If you feel helpless, get some help yourself from a counselor.  Together you can work out responses to difficult situations. When my daughter was very ill with juvenile bipolar disorder, I had my own therapist. She was a great gift in my life because she understood that my daughter’s illness and could see difficult situations with a compassionate outsider’s viewpoint.  That gave me insights and ideas I would not have had otherwise.

In effect, you are learning to love the person while still being loving to yourself.  It will make both of you better.

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My Life as a Lighthouse

Once I asked God for an image of my life’s meaning. What I saw was a lighthouse.

That won’t seem unusual to those who’ve been to my house in summer when lighthouses become a decorative item.  We’ve always been drawn to them, and we generally buy an image of each lighthouse we visit.  Only my husband has been brave enough to climb the scariest of old spiral staircases to the top. But we both love them.

Being a lighthouse is also an image of the difference between being loving to someone who is experiencing a storm of mental illness and being codependent.  The lighthouse shines its light to guide the ships to safety.  It does not drag itself off its rock and wade into the storm in an attempt to grab the ship and drag it to safety.  It sounds the foghorn, it’s true, but it doesn’t engage in a lengthy argument about why the ship should head in its direction.

Fortunately, the lighthouse is attached to its rock, just I am attached to my Rock. So we allow the ship to use us as a guide or to ignore all our sound advice. We look strong, maybe even stronger than we feel, and we shine our light so that all can see it.

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You’d Be Fine If You Just Took Your Medicine


I take my medicine.  Do you?  Probably.  So why is it so hard for our loved ones with mental illness to take their meds? You probably have heard all the reasons:

  1. They hate the side effects.
  2. They feel good now so they hope that the illness is over.
  3. It’s too hard to get the medicine. 
  4. The medicine takes aways the “highs,” leaving them flat and uncreative.
  5. They just don’t like the idea of taking drugs for mental illness, athough they often medicate it themselves with alcohol and street drugs.
  6. The medicine is too expensive. (That’s certainly true.)

The No. 1 responsibility that we have as caregivers is to make sure that our loved ones get and take their medication. That’s difficult, to say the least. I have had a variety of experiences.  I’ve had loved ones actively refuse to take the medicine, spitting it out into the glass of water.  I’ve had loved ones pretend to take the medicine and later throw it into the toilet.  And I’ve had loved ones faithfully take the medicine.

This last came as a result of refusing to provide any money to the loved one and then offering to trade compliance for cigarettes.  Yes, I know the American Lung Association would be proud of me. But it worked.  And, since up to 80 percent of people with schizophrenia smoke, it is an option. Once he had been on the medicine for a while, he became faithful about taking it because, he said, “I remember what it’s like when I don’t take my medicine.”

Frankly that’s what we all wish for.  Of course, the classic strategies to encourage compliance include:

  • Talking up the benefits of taking the medicine, including pointing out that it will help them to stay out of the hospital. A locked psych ward isn’t a pleasant memory for anyone.  Pointing out that the medicine will help them move forward to better days is also important. 
  • Building the medicine into a routine that’s as simple as possible.  We do a weekly pill box.  I fill it each Sunday and check it intermittently. My loved one also takes all the medicine once a day, even though he is supposed to take it in 12-hour periods.  He was never able to remember taking it in the morning, but could remember to take it before bed. Better all at once than not at all.  
  • Using incentives, like money, movie tickets, keys to the car and other things.

If they still won’t take the medicine, you need to maintain as positive and pleasant a relationship as you can so the tension of the medicine doesn’t destroy your rapport.  At the same time, you need to allow the loved one to experience the consequences of not taking the medicine. And that can be the most difficult step of all.

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Bringing God’s Grace to Your (Sad and Scary) Situation

Do not look forward to the changes and chances of this life in fear; rather look to them with hope that, as they arise, God, whose you are, will deliver you out of them … the same everlasting God who cares for you today, will take care of you tomorrow, and every day, either by shielding you from suffering, or by giving you strength to bear it. Be at peace, then, and put aside all anxious thoughts.

I don’t think I’ve ever met anyone who has achieved this advice from Francis de Sales.  But it is a goal for me, like it is for many who love people with mental illness.

First, falling apart under a burden of worrying and anxiety will not help your loved one.  Your stability is a bedrock for them, and you need to try to keep yourself at peace as best you can.

So how? Only with God’s grace is any of this possible.  The best way to open myself up to that grace is to realize that I need to ask for forgiveness for the sin of worry … yes, it actually is a sin … and ask for grace.  I certainly can’t do it by myself.

I was listening to a sermon from Tim Keller of Redeemer Presbyterian Church, a great church in New York. He pointed out that worry actually comes out of pride and even arrogance.  We think we know what SHOULD be happening and are distraught that it’s not. So we worry.

Has God allowed something to get past Him? No. God is sovereign, and He can make even the suffering that comes from the illness … and ultimately from the fallen world … and make good come out of it for those who love Him. If we repent and reach out for grace, step by step the peace will come.