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.

cup with words "be strong"

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.

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.

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.

 

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.

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.

 

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.