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David Baxter PhD

Late Founder
Someone To Lean On
By Donna Jackel, Bipolar Hope Magazine

When it comes to having a supportive environment to help deal with a diagnosis of bipolar disorder, the latest scientific research confirms what our intuition already tells us: Consistent love and support can speed recovery from depression or mania and can lengthen periods of stability as well.

"Generally, people with bipolar disorder do much better over time with a good support system," says David J. Miklowitz, PhD, professor of psychology and psychiatry at the University of Colorado, who has extensively studied how family relationships can affect the course of bipolar disorder. 



Conversely, he says, a person who lives in a stressful household may be more vulnerable to subsequent episodes. Over the past decade, several studies have found that patients with bipolar who are released from psychiatric hospitals are more apt to have a relapse if they return home to a critical, unsupportive or negativistic family.

"There is no easy solution, but educating family members about the illness, and how it affects the person, will help them to be more compassionate," says Miklowitz, author of The Bipolar Disorder Survival Guide: What You and Your Family Need to Know (Guilford Press, 2002). By gaining knowledge about the illness, relatives and friends will also feel less "personally attacked," should their loved one become irritable or angry, he adds.

Even so, families are complex. A parent may feel guilt that he or she has passed the illness along to a child, anger at the extra demands placed upon them, or disappointment that their loved one is no longer the same.

?One of the biggest misconceptions that the family usually feels is that it was something they did that caused the illness,? says Joseph R. Calabrese, MD, professor of psychiatry at Case Western Reserve University School of Medicine in Cleveland, Ohio, and director of the Mood Disorders Program at University Hospitals of Cleveland. ?The patient often feels it was something [he or she] did. In reality, it?s rare that either party did anything to cause the illness.?

For years, Bernice Dolan blamed herself for her daughter Donna Dolan?s mental illness. Bernice had assumed that Donna?s severe depressions were related to her own bout with postpartum depression. Much later, though, Bernice learned that an uncle on her husband?s side of the family had shown signs consistent with bipolar.

Donna, 56, a part-time technical writer and librarian, has lived independently most of her adult life, despite experiencing rapid mood changes for 31 years. While her mania has largely been controlled through medication, she has been hospitalized for severe depression about half a dozen times. She has been stable for nearly two years with the addition of antidepressant and antipsychotic medications.

?I don?t think I would have gotten through this illness without the help of family and friends,? Donna says from her Albany, New York, home.

For decades, Bernice, now 84, was the primary support in Donna?s life, making the two-hour trip from the Hudson Valley area to Albany each time her daughter became severely ill. Assuming Donna?s daily responsibilities such as shopping and cooking, Bernice would stay as long as a month, going home weekends to see her husband and younger daughter, Suzanne Dolan, now Suzanne Manzi.

?It felt like it was the thing to do because I didn?t want her to be here alone when she was so depressed,? says Bernice.

But Donna felt guilty about her mother pulling double duty. ?It was a lot of stress?taking care of herself, Suzanne, and Dad, and looking after me,? she says.

For Bernice, Donna?s psychotic episodes were the most challenging. ?One time, Donna thought she was dead,? her mother says. When Donna began to feel better, she would sometimes go off her medication. ?That made me feel terrible, but I didn?t tell her because I knew she was sick.?

Bernice also felt stigmatized in having a family member with a mental illness. So great was Bernice?s discomfort that for decades she was unable to confide her daughter?s diagnosis to a group of high school friends during the group?s monthly get-togethers. ?I just said she was having problems with depression,? she says. To Bernice?s surprise, when she finally did tell these friends of Donna?s illness, the women accepted the news matter-of-factly.

Indeed, time has altered the pattern, so that in recent years Donna and her mother have switched caregiving roles. Now a widow, Bernice lives with her daughter permanently. ?I do the grocery shopping and the cooking?although she helps?she?s like my sous-chef,? Donna jokes. ?I take her to the doctor; I do her bills, like she used to do mine.?

While Donna says she has a ?long way to go? to repay her mother, it is nonetheless satisfying to be able to help. ?If she wasn?t with me, she would have to be in a nursing home, so it?s much better quality of life for her,? Donna says.

It was Donna?s illness that inspired her sister Suzanne to become a psychiatric nurse. ?I wanted to understand bipolar disorder, what it was, what caused it,? says Suzanne, 51, who now works at a Detroit hospital.

Suzanne has always looked up to her ?very, very bright, witty, and funny? older sister. For children, having a sibling with a chronic mental illness can be confusing?Suzanne sometimes felt guilty because she was healthy. But at times, she was jealous that her parents expended so much energy on Donna.

?It kind of felt like all the attention had to go to [Donna] because she was sick,? she says. Yet the sisters have always been close. ?Even when Donna is sick, I go to her for advice because she?s so smart,? Suzanne says. ?She?s a very loyal friend.?

During rough periods, Suzanne would visit her sister for a week, Donna recalls. And, during hospitalizations, Donna could expect lots of mail and presents from her sister.

For Suzanne, the most difficult aspect of Donna?s illness has been watching her suffer through serious depressions. ?My biggest worry has been that one day Donna wouldn?t be able to take it anymore and I?d lose my only sibling?my big sister,? she says.

Suzanne offers the following advice for anyone with a loved one who is battling dark moods: ?Let the person say what they really feel,? she says. ?Try to accept it, and be with it, and don?t feel you have to fix it.?

Providing long-distance care for a loved one is difficult yet possible, Suzanne has discovered. ?It is crucial to learn to recognize serious symptoms of the illness, so you can react quickly,? she says. ?If I sense over the phone that my sister needs help, I?m all prepared.?

Demonstrating this readiness, Suzanne keeps on hand phone numbers of the Albany crisis center and Donna?s psychiatrist. She can also call Donna?s neighbor who has the key to her sister?s apartment. Suzanne also has Donna?s medication history, which she can fax to the physician, if needed. Moreover, Donna has signed a medical release so that her sister can be kept informed of her treatment, should that need arise.

In addition to her family, Donna has many long-term friendships, some with people she met through a bipolar support group; others date to her college days. She has made it a rule to avoid her ?healthy? friends when her ?dark side? surfaces.

?That?s just how I decided to cope with it. I can?t give of myself [when I?m ill],? Donna explains. ?I can?t reciprocate. When I?m balanced, I think I?m a good friend.?

Mary Lhowe, 54, and Jean Lawlor, 46, have been close friends for about 15 years. When they were coworkers at a university, Mary learned that her friend had bipolar disorder. But the news did not throw Mary, as she?d had other close relationships with people who suffered from depression.

?I don?t think of mental illness as being different than any other illness,? says Mary, who lives in Warwick, Rhode Island. ?If your friend is sick, you stick with them. You help if you can, and you don?t forget that the fundamental person is still there, with this overlay of illness.?

When Jean is depressed, Mary tries to get her friend out to dinner, to take a walk, or to enjoy a movie. Mary has also visited Jean when she was hospitalized during a manic phase??like you would visit any friend who is in the hospital,? she says. ?I?ve just learned and listened to what she was telling me and tried to be helpful.?

One time, Jean was still a little shaky from a recent hospitalization. ?She started to talk about someone at her workplace who was a real irritant,? Mary recalls. ?As she described what it was like dealing with this person, she became angry and upset. I suggested we change the subject because it wasn?t doing her any good and she agreed.?

Occasionally, Jean will talk about her illness a little more than Mary would like. ?When a person has a chronic illness, it?s pretty consuming,? Mary admits. ?There?s nothing unusual about that?I?ve bored people about my afflictions from time to time; that?s just part of friendship.?

Jean, who lives nearby in West Warwick, continues to work hard at remaining stable. She volunteers for Alateen?a group connected to Alcoholics Anonymous for teenagers who are affected by the alcoholism of a relative or friend. Jean has also become more self-aware through therapy, meditation, and church-related activities.

?A lot of people live their whole lives and don?t recognize how they come across to other people?that what they say and how they say it might affect their relationships,? Jean says.

Currently, Jean works in the media relations department for the National Alliance on Mental Illness (NAMI), a job she loves. But in years past, the workplace presented challenges for her. At one job, Jean became so anxious that she was unable to speak to her coworkers. She decided to take a medical leave until she could get her panic attacks under control. ?I had to separate myself out of the [workplace], which was partly causing the situation,? she says.

Sometimes medication side effects can harm relationships. For four years, Jean took an antipsychotic that made her face look affectless?flat and non-expressive. ?It stifled relationships because I probably looked as though I was uninterested,? she says. ?When I came off the medication, a woman at work said, ?You are an entirely different person. Now you are nice to work with and in the past you were not.? The only thing I could attribute it to was the medication change.?

While Jean now leads a stable life, she knows that she doesn?t have total control over her illness. Sometimes she needs a little help from her friends?or her family. ?When you become symptomatic, you can be the last person to realize it,? she says. ?And the sicker you become, the less likely you are able to recognize the symptoms. There?s been many times when I was insisting I was fine, when I actually wasn?t fine at all.?

In fact, Jean?s keen self-knowledge is one of the traits that Mary most treasures in her longtime friend. ?Jean has educated herself about bipolar disorder and is doing all the right things to take care of herself,? Mary comments. ?She?s been very positive and optimistic about her situation. She has offered me a good lesson: to learn about the condition and deal with it intelligently.?

Caregivers who truly understand the nature?and unpredictability? of bipolar disorder can better support their loved one while reducing their own stress level, according to research conducted by Deborah A. Perlick, PhD.

In 1999, Perlick, associate professor of psychiatry at Mount Sinai School of Medicine in New York City, studied the primary caregivers of 263 patients who had recently experienced an acute episode. She found that caregivers? perceptions of bipolar disorder not only influenced their coping abilities, but also how they interacted with the sick family member.

?If the caregiver understood that the person had a serious illness and was not 100 percent in control of the behavior, the caregiver?s strain was significantly lower,? Perlick says. Moreover, if the relative could identify ways to help ease the loved one?s symptoms, this, too, lowered his or her own stress level.

In a 2003 study of 500 caregivers, Development of an Integrated Model of Family Burden in Bipolar Illness, conducted by Perlick, Miklowitz, and colleagues, caregivers who felt stigmatized by their relative?s illness were more likely to be depressed themselves. Indeed, some people seemed to live in suspense waiting for the next crisis, even when their loved one was, in fact, stable.

?One woman said she would come home and hear her daughter laughing and wonder if she was watching the TV, or in the beginnings of a new manic episode,? Perlick says.

The study also found that those who were overwhelmed by their relative?s illness were more likely to neglect their own health and to develop chronic medical conditions.

Perlick strongly recommends that primary caregivers attend a support group. ?If you can find other people in the same situation, it helps you feel less alone and reduces feelings of being stigmatized,? she says. It?s not unusual for caregivers to be in some kind of brief, supportive therapy, she points out. ?It helps to sort things out.?

Not everyone with a bipolar diagnosis is fortunate enough to have a supportive network of loved ones to rely upon. It took 17 years of mood swings before Mike Hotchkiss was accurately diagnosed with bipolar disorder. Over the years, Hotchkiss, 57, did receive some support from his mother, who died in 2001. But Hotchkiss has largely had to cope with his mood swings on his own, learning to monitor early signs of depression or mania. Despite periodic hospitalizations, Hotchkiss work-ed full time at the Commonwealth of Virginia?s unemployment office for 32 years. He acknowledges that it would have been ?reassuring? to have an enduring close relationship.

?I?ve had problems keeping relationships, partly due to the illness,? he says. ?Some people just ?disappear? and I wonder if I?ve said something, not knowing [what might have] driven the person away.?

Still, Hotchkiss has found caring and friendship at a weekly Depression and Bipolar Support Alliance (DBSA) support group he has attended since 1991. ?We care about each other,? he says. ?It?s a good group. We really look forward to going. People are anxious to talk about themselves and keep track of one another.?

Hotchkiss says these friends help him to clarify his thinking. ?We compare notes?it?s like a therapy session almost.? Outside the formal meetings, Hotchkiss socializes with a couple of friends he has made at the support group?the man who recently accompanied him to a Wendy?s restaurant, for instance.

?We had a good conversation for about two hours,? Hotchkiss says. ?He told me that there are very few people he is able to have a good one-on-one conversation with. Another guy [from the support group] calls me every once in a while and we go to the movies and out to eat afterward,? he adds. ?That?s real nice.?

Hotchkiss also lifts his spirits by caring for others. He has been a volunteer at a long-term care facility for 21 years and also works at a food bank once a week.

It is religion, however, that has gotten him through what he terms some of the most ?difficult times of his life.? ?I was raised a very strict Catholic.? he says. ?It gave me a very strong basis of how to live my life. It gives me great comfort. I expect to go to a greater place one day.?

Author, Donna Jackel is a Rochester, New York, based health writer whose work has also been featured in Gannett Newspapers, Bark Magazine, Rochester Magazine, and Her Magazine.
 
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