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.

no trespassing signs indicating boundaries

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.

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.

When They Don’t Think They Are Mentally Ill

One symptom of having a mental illness is … not knowing that you have a mental illness. Really.

This symptom is anosognosia … pronounced uh-no-sog-NOH-zee-uh.  It means being unaware of one’s disease, disability or defect. This is common, as many who have tried to help a loved one can tell you.

Some people who have brain-based or “mental” illness have insight.  They know they have a mental disturbance that could be an illness. They recognize they have  experiences, including beliefs and perceptions, that don’t match reality.  Because they can see this, they are much more likely to accept treatment.

People with anosognosia often don’t accept treatment simply because they don’t think they are sick.

Anosognosia affects 50 percent of people with schizophrenia and 40 percent of people with bipolar disorder.  It also can be a symptom of major depression with psychotic features.

What Causes This?

The symptom can vary over time. Sometimes people understand they are ill, and sometimes they don’t. They are not being stubborn or difficult. The same brain dysfunction that causes hallucinations and voices also causes anosognosia.

People constantly update their own mental images of themselves.  You remember that you have a sunburn or a bruise or a runny nose, so you are not surprised when you see it again. The updating process takes place in the frontal lobe.

Unfortunately schizophrenia, bipolar disorder and dementia damage the frontal lobe.  So our loved ones can lose the ability to update their self-images.

Without an update, they have an old self-image from before the illness. Since our perceptions feel accurate, they believe they are well.  They decide that our families are lying or making a mistake.  When families insist that they are right, the person with the illness may get frustrated or angry.  They may begin to avoid family and friends.

Why Is Insight Important?

Lack of insight not only causes conflict. It usually causes a person to avoid treatment. It is also the most common reason that people with mental illness stop taking their medications.  When combined with psychosis or mania, lack of insight can cause dangerous behavior.

How Can You Tell If It’s Anosognosia or Denial?

It’s likely to be anosognosia if:

  • The lack of insight is severe and persistent (lasting for months or years).
  • The beliefs (I am not sick, etc.) are fixed. They don’t change when you confront the person with overwhelming evidence.
  • You hear illogical explanations or elaborate statements that attempt to explain away the evidence of the illness.

How Can You Help Your Loved One?

Anosognosia is a delusion. We can’t talk people out of delusions.  (That’s what a delusion is: a belief in the face of contrary evidence.) So stop arguing about it.

The alternative that experts stress is listening to the person.  The LEAP method, developed by Dr. Xavier Amador, has proven quite effective in research in helping people to accept that need for treatment.

In summary, the LEAP method is:

  • Listen to your loved one. If they don’t think they are sick, find out what problems they think they do have.  Lack of sleep, for example.
  • Empathize. Let them know you understand how difficult things are.
  • Agree with the loved one on some point. Example:  Lack of sleep makes things hard.
  • Partner with the loved one, starting with solving the problem that they recognize.

The method is detailed in Dr. Amador’s book, “I’m Not Sick. I Don’t Need Help.”  Details on also available in the videos here.  They are worth watching.

 

holding hands

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.

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.

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.

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.

 

 

 

 

 

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.

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.