Soon after Missy had her daughter, she stopped sleeping, going
from eight hours a night down to only two or three. Her thoughts
were racing, and she was going a million miles an hour. After a
few nights, Missy’s husband Bill finally took her to the
hospital. He couldn’t believe that one minute his wonderful wife
seemed just fine and now she had become a patient in a psych
unit.
From the time Ally was nine months old, her parents Bill and Nancy
knew that something was wrong. Ally couldn't sleep, had temper
tantrums up to 20 times a day, and increasingly became more
aggressive. Medical professionals told Bill and Nancy not to worry,
that she’ll grown out of it, but they continued to seek help from
doctor after doctor.
Nell’s sister, Maud, stopped taking her medication for bipolar
disorder and fell into a depressive episode. Nell threw all her
energies into visiting her sister at the hospital, comforting and
supporting her while the doctors tried drug after drug before
finding the right ones; explaining to Maud’s boss why she would be
out of the office for weeks or more; and wondering how to cope with
the new financial and emotional burdens in her life.
Missy, Ally, and Maud all have bipolar disorder
(also known as manic depression), in which moods gyrate between the
highs of mania and the lows of depression. They have been
hospitalized, have struggled to come to terms with their diagnosis,
and have suffered deeply. All three have family caregivers -- a
spouse, parents, a sibling – who are dedicated to helping them
recover, but who feel uninformed, isolated, overwhelmed, sad, and at
times, angry and hopeless.
Caring for someone with any illness is
difficult. Caring for someone with a psychiatric illness is
especially hard for many reasons. Health care coverage is far more
limited than for other illnesses. Just getting someone who is in a
state of mania -- even when psychotic -- hospitalized and accurately
diagnosed is a major accomplishment. Bipolar sufferers, particularly
when they are in an up (manic) rather than down (depressed) phase,
often refuse to see a clinician and stop taking their medication.
The medications are powerful and have unpleasant side effects.
There is no cure for bipolar disorder and so the drugs must be taken
for life, a daunting prospect, especially for younger sufferers.
Finding the right meds may take as long as several years, and over
time they may stop working. For family caregivers, coping with
someone who is manic or depressed takes a heavy emotional toll and
strains the relationship, often to the breaking point. An added
burden is the stigma of mental illness, which leaves families
feeling frightened and isolated, unaware that many other families
share their experience.
Given
all these challenges, caring for someone with bipolar disorder can
be overwhelming and at times an impossible responsibility to
maintain. But there are ways to cope effectively. Families for
Depression Awareness, the nonprofit organization I founded (after
losing my brother and helping my father get diagnosed with
depression), has interviewed many families that are doing
well. True, it took a while to learn how best to help and support
their bipolar family member, and time, too, to learn that caregivers
also have needs that must be met. Sometimes the stresses and
strains were intense, and these families have had their ups and
downs. But by educating themselves about bipolar disorder, improving
treatment by finding the best possible medication and therapy
solutions possible, and communicating as a tightly knit unit, these
families have met the challenges, survived intact, and are
emotionally healthy.
Here are ways that you can help
someone with bipolar disorder:
Become educated. The
first step is to become educated about bipolar disorder, so you have
realistic expectations and coping options. There are books,
brochures, and videos on a variety of topics. We have Family
Profiles, (stories of people who cope with bipolar disorder), a
brochure, and other resources on our web site, www.familyaware.org.
Make this is a family matter.
Acknowledge that one member’s depressive disorder affects the entire
family. Everyone in your immediate family needs to learn about
bipolar disorder, its symptoms and early warning signs, how it is
treated, and what the side effects of medications may be. And to
whatever degree possible, each member should participate in the
caregiving process. Being a caregiver is stressful, and it is
important that family members discuss their feelings and opinions.
Sometimes it helps if a skilled family therapist facilitates these
discussions in group sessions.
Be a partner in treatment.
Find the right treatment for each individual bipolar sufferer
usually means going through a process of trial and error with
multiple different medications. Patients also need talk therapy to
heal. Finding qualified clinicians (e.g., psychopharmacologist,
psychiatrist, psychologist) is essential. As a family caregiver,
you can help by finding the best clinicians in your area, scheduling
appointments, keeping track of medications and making sure they are
taken as prescribed, and being an early warning systems by reporting
changes to the clinicians.
Meet with the patient’s
clinician. Make sure to meet with the clinician treating your
family member from time to time. Try to go with your family member
and if needed, set up some appointments on your own. Although
clinicians have to maintain patient confidentiality, they can listen
to you and you can report issues you are having caring for your
family member.
Be understanding. Let
your family member with bipolar disorder continually know that you
care. People with bipolar disorder have negative thoughts and are
hopeless in a depressive state. They need to be reminded that you
and others are concerned about them and that you are working
together to help them get well.
Take care of yourself.
Set healthy boundaries on how much you do so you don’t burn out.
Take a vacation from caregiving from time to time. Many caregivers
develop depression, so don’t be afraid to seek medical help for
yourself. You also may need help processing and dealing with your
emotions.
Find social support.
Dealing with bipolar disorder can be lonely and isolating. You’ve
watched the healthy person you once knew deteriorate and suffer.
Your friends don’t understand bipolar disorder, and it is difficult
for you to go out. Make sure you find sources of support such as a
bipolar support group in your area.
Develop a crisis plan.
Talk to your family member with bipolar disorder about what you will
do if the person becomes manic or suicidal. For example, some people
with bipolar disorder and their families decide that it is best for
the person with bipolar disorder not to use credit cards. Also,
determine what you will do if you need to hospitalize the person.
Put your plan in writing.
Have hope. Remember that
in most cases, bipolar disorder is treatable and can be stabilized.
The condition is usually cyclical, so be prepared for it to worsen
and/or improve at times. Finding the right treatment can be a drawn
out process, but in time, a solution will be found...Continued