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 dad in.

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 disorder.

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 constructive help.

^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 effective.

Safety

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 http://www.metanoia.org/suicide/ 

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.

Communication

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 recovery. 

Available:  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.

Focus:  When 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 true.

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.

Emotional

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

Physical

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.

Physical Illness:  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.

Social

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.

Financial

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 a loan.

Social Security:  Help him to apply for disability from his job if it is available, or to make application to the appropriate government office.

Legal

 
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.

http://www.psychlaws.org/legalResources/index.htm   
for a summary of these laws) 
http://www.psychlaws.org/legalResources/ModelLaw.htm   
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 incapacity. 

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 treatment. 

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 Association –

“Being 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.”

Bibliography:

1.  Mental Illness in the Family       Canadian Psychiatric Association       Brochure

Metal Illness:  Teamwork in Service Delivery   Canadian Psychiatric Association     Brochure

Caring for the Mind     Dianne Hales & Robert E. Hales, M.D.   Bantam Books   1995

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