two sets of family hands holding one heart

Eight Steps to Balance Family Needs

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

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

1. Take care of yourself.

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

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

2. Be intentional about time with other family members.

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

3. Get your family involved.

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

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

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

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

4. Resume “normal” activities and routines.

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

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

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

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

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

6. Decide about living at home.

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

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

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

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

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

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

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

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

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

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

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

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

7. Have successful visits.

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

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

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

8. Make activities together enjoyable.

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

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

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

The six rules for these activities are:

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

What does “be realistic” mean?

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

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

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

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

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.

 

 

 

Know Your Meds: Mood Stabilizers

Mood stabilizers are typically used to treat intense, repeated shifts in a person’s mood, which may be common for those experiencing bipolar, schizophrenia, or borderline personality.

Many mood stabilizer drugs are also commonly categorized as anticonvulsant medications.

The oldest of them, lithium, has been in use for over 50 years and has proven very effective, particularly for bipolar disorder, type I. However, regular blood tests are required when taking lithium because of potential serious side effects to the kidneys and thyroid.

Newer mood stabilizers, many of which were originally used to treat seizure disorders, may work better than lithium for some people. Mood stabilizers can prevent manic or hypomanic episodes and depressive episodes. but also have side effects to know about and monitor.

Common mood stabilizers include:

A Good Case Manager Is Hard to Find

The quest to find good professionals to work with your loved one with mental illness may … frankly … drive you crazy.  We’ve paid good money to:

  • A therapist who thought my son had a bad case of “failure to launch” and completely missed the fact that my son was developing schizophrenia. (My hand to God … it’s true.) Even better, when my son had to be taken to the emergency room and the psych ward, we were unable to reach him because his office phone had been cut off for nonpayment.  Thanks, Cigna.
  • A therapist who talked my son with schizophrenia into not taking his medicine.  (Surprise! His ideas about the illness being the remnants of drug use were wrong.)
  • A psychiatrist whose wife/office assistant got me mixed up with another patient’s caregiver, yelled at me, realized her mistake and said, “Please don’t tell my husband.” 

I now realize that we were incredibly blessed with my daughter’s psychiatrist, who spent several hours with her every month for a 11-year period from 1989 to 2000. Today psychiatrists dispense medicine, period. You see them for 15-minute appointments once a quarter, and you work hard to convince your loved one to at least tell them the truth about their symptoms.  It’s relatively easy to lie to someone who hardly ever sees you.

Nonetheless, it’s important to partner with your loved one’s social worker, case manager, therapist and/or psychiatrist. I’ve found there’s a natural period where they assume that you are part of the problem, but it can change over time. And, even if the therapist is unable to tell you things, you have every right to call the therapist with important information.

We worked for 3-1/2 years to get my son moved to a good counseling center where he soon will have a case manager who I personally knew from many months in a support group where he was the facilitator.  He heard me bitch so much about the other social workers and therapists that he was a little worried about working with me.  I got that from this direct quote: “You’re going to be mad at me now.”

Probably not.  The issue with schizophernia is that the illness begins at about age 20, when the young person is trying to get away from Mom.  That makes trying to get the person to do what you know they need to do all the more trying.  Until he left his job, he was a strong thoughtful social worker who did a great job in the role of my son’s advocate.

The biggest issue is keeping a good relationship with a case manager or therapist in place.  Lots of people change jobs, and, when that person is your loved one’s link to sanity, it can have a serious impact.  Things also get better when you are lucky enough to have your loved one entered a permanant supportive housing situation. The case manager for all residents is in an office on-site, and that has been so wonderful.