Bipolar Disorder and Care Giving
By Colleen Sullivan
June 3, 2005
Note: I have used he/him
throughout this essay for ease of expression, but each time it is used can
be changed to she/her with the same meaning and intent.
I am writing this article
because I believe I have an unusual perspective on Bipolar Disorder and
care giving, although I am certainly not alone. Except for four years I
have lived with bipolar disorder all my life (that is 55 years), first as
a care person for my mom, who was diagnosed after a post natal depression
following my birth, and then four years after her death, I faced my own
diagnosis with the same disorder.
I can’t say that I learned much
about bipolar disorder, or manic depression as it was called then, as I
was growing up. In retrospect that was probably the biggest mistake I
ever made. Oh, I know that I didn’t have the ability to understand as a
young child, but as I grew older I could have learned, and become much
more supportive of her than I ever was. It was a subject that wasn’t
discussed freely in our home, and I grew up thinking it was something to
hide, or to be ashamed of, or maybe it was something that wasn’t even
real. In the 1940’s and 1950’s mental illness was still very much taboo.
The stigma we face today was multiplied several times back then. There
were few effective treatments available, and episodes of the illness would
go on for long periods of time, basically not medicated. Long term
psychiatric hospitalization was common.
So while I didn’t learn
anything about the illness she had, I felt the effects from a very early
age. Both my older sister and I gradually took on more and more of the
household chores; cooking, dishes, cleaning, laundry, and caring for our
younger brother who was born 9 years after my mom was diagnosed. She
would retreat to her bedroom for days at a time, and sometimes for weeks,
locking the door and opening it only to receive a dinner tray or to let my
As I got older, into my teens,
I was more aware of the frustration and resentment I felt at having a mom
who “wasn’t normal”. In the most secret part of my heart I wondered if
she was just doing it because she was lazy or wanted attention … if she
was a hypochondriac consumed with her own body and mind. Knowing what I
know now, I am absolutely positive she did the best she could, and I did
her a disservice that I never had the opportunity to change, or to even
tell her. She died before I knew what she had gone through with bipolar
I was a care giver, albeit a
reluctant one and I empathize with those who are unwittingly put in that
position. Bipolar Disorder has no boundaries, and it could be your spouse
or significant other, or any family member or person close to you that is
diagnosed next, thrusting you into the role of care giver. So, what do
you do? How do you handle it?
The very first reaction you
will probably have is one of denial. You didn’t “sign on” to be a care
giver for the rest of your loved ones life, but that is what the doctor is
telling you. Bipolar Disorder is a life long illness. While there will
be periods of wellness, there will also be episodes of illness and nobody
knows how many or the course the illness will take. Even at this early
stage there are some who know they don’t have the ability to handle it,
and they walk away. Most, however, love their bipolar family member
unconditionally and want to do all they can to help, at least initially.
As time goes on and the reality of the illness creates distance and
distress, more care givers give up. They give it their best, but
separation and divorce is quite common for those with bipolar disorder.
The next step after denial has
to be education. As a care giver you need to be thirsty for knowledge.
There are many excellent books available now explaining bipolar disorder
as we know it. The internet is packed with quality web sites full of
information for the bipolar and his family, and there are many web sites
with bulletin boards and chat rooms, where you can talk to people with
bipolar disorder, and question, and learn.
Almost every city and town has
a mental health association. Both information and support are available
there for the care giver, as well as the bipolar person. Absorb all the
knowledge you can about the illness and the treatments available for it.
It will stand you in good stead as you travel this well worn path.
Realize that you are part of a
team who has his well-being at heart. At any time this team can include,
besides you, his family doctor, psychiatrist, psychiatric nurse,
psychologist, social worker, occupational and recreational therapists, and
other family members and friends. Most often you are the one in position
to notice changes first, and to bring them to the attention of the team
member required. Although as a care giver you will sometimes feel alone
with a burden, you are not ever really alone.
Learn especially that it is not
your fault that the illness happened, and that there is nothing you can do
all by yourself to fix it. Bipolar Disorder is a mood disorder, an
imbalance of chemicals in the brain. It is nothing to be ashamed of.
Don’t feel intimidated by the doctors and psychiatrists. They do want to
hear your opinions, and will answer your questions. As you learn more it
will become easier to cope with the illness and the fallout from it.
Because it is so essential the
next thing I want to mention is your mental health. Being a care giver is
not easy, and living with someone who has a mental illness that is not
well controlled, is definitely not easy. You need to take care of
yourself, and look to your own mental health. Arrange to have someone
come in to sit with your bipolar loved one while you continue with your
life outside of the illness. Work, rest and relaxation are imperative….as
is exercise and balance in your life. If the need arises make an
appointment with a therapist. Sometimes there is a very real and urgent
need to talk to someone who is trained to listen objectively, and to offer
1. This is from a
patient with mental illness: “People have funny ideas about how to
deal with anyone who is different. A lot of the time they patronize me.
That’s infuriating. Just because I have an illness doesn’t mean that I am
no longer an adult, with my own ideas about what I need.
Here’s what I want my family
– and anyone else who is listening – to understand. It’s simple. Treat
me with some respect. Okay? Encourage me when I try to take care of
myself. Acknowledge my limitations. Don’t expect too much too soon – and
then lose respect when I don’t come through.”
Often patients don’t make
their needs known … in fact; often they are incapable of doing so. There
are several different important areas where you as care giver can be most
Suicide: Know the warning signals that may
trigger an episode in your family member. Be prepared to act before they
worsen and get out of control. Tragically suicide is an all too common
result of bipolar disorder. Learn about it...and what you should watch
for. Denying the possibility could end in tragedy. Be prepared. Educate
yourself about suicide at
Ask: Don’t be afraid to
ask your ill relative if he is thinking of or has plans to harm himself.
Often if the thoughts are there he may want to talk to someone. Try to
determine if he has developed a suicide plan and want it is. Don’t
believe in the fallacy that if he talks about it he doesn’t really mean
it. Have someone with him at all times, and that means 24 hours a day, or
arrange for him to be hospitalized.
Remove: Make sure there
are no lethal weapons available to him. This includes medication and
other drugs. Remove guns even if they are in a locked cabinet. If he is
confused or otherwise impaired by either the illness or medication remove
the car keys.
Substance Abuse: Be
aware that substance abuse in a person with bipolar disorder increases the
chance of violence and self harm, or danger to others.
Encourage: Do all you
can to keep communication lines open between you and your ill relative.
Assure him you are there for him and that you know he is sick but will get
well again. Try to be a part of his wellness, but not a part of his
illness. Encourage every effort to get better and go with him, rather than
send him for help if he wishes. Try to project positive thoughts about his
If at all possible, even if you have to go to work, try to be
available to him any time he needs you. If you can’t be, try to arrange
alternate phone support.
communicating with the person with bipolar disorder while he is ill keep
the focus on what you find troubling in a non threatening, non critical
manner. Let him know how you feel – that you are worried, concerned,
frightened, or angry, or whatever the case may be – and be as direct as
possible with him. Let him know you are not abandoning him if that is
Truth: Endeavor to be
honest and truthful in your communications with your ill relative or
friend. Though sometimes he may not appear to be a participant in a
conversation, he may very well remember things said at a later date.
Treatment: If possible
try to discuss his treatment with him, as a part of your concern for his
wellness and future well being.
Permission: As your
loved one gets better permit him to gradually assume his
responsibilities. While this may be frightening for you to do, it is the
only fair thing for him.
Expression: Be aware
that bipolar disorder can create emotional ups and downs for both of you.
When he expresses hurtful thoughts, brought about by his own internal
misery, know that it is the illness talking, and that he is not
deliberately trying to hurt you.
Emotion: Let him know
he is loved, if that is a true statement. It may be that you are not
feeling very loving at the time. Know that behind the illness is the
person you fell in love with.
Criticism: It can be
tempting at times to let bad feelings out especially when he is in the
midst of an episode. Try to restrain them and vent them safely to a close
friend or therapist
Personal: When ill your
loved one may neglect personal care. Encourage him to bathe, wear clean
clothes, and groom himself as well as he did pre illness.
Diet and Exercise:
Encourage him to eat a healthy diet, and to get exercise, even if it is
only a little bit each day.
Sexuality: Know that
the loss of sexual desire can be a symptom of bipolar disorder, or a side
effect of medication. It is not a rejection of you. In recovery, sexual
desire is often one of the last things to return, but it does come back.
Affection can be expressed with hugs, kisses and cuddling until it does.
On the other hand, in mania he
may be sexually hyperactive to the point of promiscuity. This is not an
expression of his feelings toward you, but rather a reaction to the
symptoms of the illness. Try your best to keep him home and safe.
Symptoms of physical illness often are expressed. Have him see the family
doctor to rule out an actual physical basis, but the symptoms may be
coming from his illness.
Routine: Do your best
to set a routine that he is able to easily follow – you may have to push a
little for him to become active.
Network: Lessen the
burden on the family by broadening the network of people who can help in a
crisis. Another person who has been through this, a concerned friend or
professional may offer respite when you need it most.
Friends: Encourage him
to see friends if at all possible – to play cards or watch a game.
Suggest having friends over to visit, but don’t be discouraged if he
refuses. Keep trying.
Outings: Plan short
outings in the sunshine and fresh air – both are healing. Don’t plan long
outings. Remember that recovery does not occur quickly, and try not to
add stress to the process.
Visit you bank: to make
arrangements to limit your ill relative's access to bank accounts and
credit cards. Many a bipolar family has faced bankruptcy in the aftermath
of a manic wild spree! Protect yourself and your security. Talk
privately with the bank manager to ensure that he will not have access to
Social Security: Help
him to apply for disability from his job if it is available, or to make
application to the appropriate government office.
Property: Talk to your
attorney about ways to ensure he does not have the freedom to dispose of
major assets like your home, bonds, vehicles etc, when in a manic state.
This action may enrage him at the time but he will be grateful later.
Involuntary Commitment: If the situation is
serious your relative may have hospitalized against his will, either to
protect himself or others. The laws for this differ in each state in the
United States and province in Canada.
for a summary of these laws)
for excellent information about mental health law and terminology.
In Canada contact the Canadian Mental Health Association.
Contact Your Attorney: to obtain temporary guardianship or power of
attorney if the situation warrants it
Advance Directives: In states where they are available psychiatric
advance directives have recently emerged as potentially helpful tools in
resolving these problems. There are essentially two types of advance
directives. Instruction directives", such as living wills, provide
specific information about treatment and related wishes of individuals
drafting them (patients) should they lose capacity to make these decisions
on their own. "Proxy directives" assign "health proxies" or "health care
power of attorney" to individuals entrusted to act as substitute decision
makers should patients lose capacity to make their own decisions.
Frequently, advance directives combine both of these forms, blending
specific instructions about healthcare preferences with identification of
individuals assigned "health proxies."
Traditionally, advance directives have been used primarily for "end of
life decisions," for example, specifying the wishes of individuals to be
withdrawn from life supports when there is no longer any reasonable hope
of survival. In recent years, advance directives have been recognized as
potentially helpful in empowering individuals suffering from mental
illnesses to communicate treatment preferences in advance of periods of
Supporters of psychiatric advance directives view these instruments as
potentially helpful for at least four reasons. First, they can empower
consumers to assume control over treatment decisions. Second, they can be
very useful in enhancing communications about treatment preferences
between consumers, their caring families, and treatment providers. Third,
they may facilitate appropriate and timely treatment interventions before
situations deteriorate to emergency status. Finally, they may lead to
reductions in adversarial court proceedings over involuntary psychiatric
The Outlook of Bipolar Disorder
Bipolar Disorder tends to be chronic and recurring. Without treatment
episodes of mania can last 3 months, while major depression can last much
longer. Even treated with appropriate medications the person with bipolar
disorder is subject to breakthrough episode, sometime, though not always
triggered by stress.
All is not lost however, as there may be years of “remission” from the
illness at times.
A Quote: In closing, a quote from the Canadian Psychiatric
mentally ill doesn’t make a person dangerous. It shouldn’t make them and
their families outcasts. If we open our ears as well as our minds we may
be surprised by what we hear.
Instead of placing the blame on others, maybe we need to fix the
attitudes that create the blame in the first place.”
1. Mental Illness in the Family Canadian Psychiatric
Metal Illness: Teamwork in Service Delivery Canadian Psychiatric
Caring for the Mind Dianne Hales & Robert E. Hales, M.D. Bantam
Bipolar Disorder: A Guide for Patients and Families Francis Mark
Mondimore M.D. John Hopkins University Press 1999
Up from Depression Leonard Cammer M.D. Pocket Books 1972