Tag / caregiving

by karentwinem

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)

people in a revolving door
by karentwinem

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.

ear poking through yellow wall paper
by karentwinem

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.

cartoon of person with upset brain relating to a caregiver
by karentwinem

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.

Christmas tree and lights
by karentwinem

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
by karentwinem

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!

a cross drawn in dust
by karentwinem

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
by karentwinem

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.

ipad with medical record
by karentwinem

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.