Bipolar Dementia Art Chronicles

Taking Charge--A Balancing Act

I like to think I'm in charge of my life, no matter what problems I may face.  I don't think of myself as a victim or a patient, even when I'm sitting in the doctor's office.  This attitude, I think, has helped me to be more successful in managing my bipolar disorder, in being a better caregiver, and in general dealing with whatever life throws at me.

When I was a young college student, a friend of mine complained that her parents were trying to run her life.  "I'm not living at home anymore," she said, "so why do they keep trying to tell me what to do?"

"As long as they're paying the bills," I answered, "they're going to think they have that right."  Becoming independent, I knew then, meant becoming financially independent first.  Perhaps there are parents out there who dole out money freely without asking for accountability, but I'd bet they are in the minority.

Being financially independent is just one step in taking charge of your life.  Another is to take active responsibility for your problems.  If your car breaks down, for example, and you take it to a mechanic who does a lousy job, you don't keep going back to the same place.  You find a new mechanic.  You realize that sitting around wailing about how the original mechanic should be better at fixing your car is a waste of time. 

Yet I see people sitting around wailing about how their medications don't work or their doctors aren't helping them.  They have a passive patient mentality, plopping themselves in their doctor's office and begging, "fix me," then waiting for the results.  This attitude has even been encouraged by the medical model in our society which presents doctors as the dispensers of cures and patients as the passive recipients. 

Fortunately this attitude is changing.  People are doing their own research on what ails them, and using their doctors as expert resources rather than gods.  We are taking charge of our own cures.

Feeling independent and in control of my life is something I prize, yet when I became a caregiver for my father, I forgot that he needs to feel that way, too.  My knowing what was "best" for him, or being able to more efficiently run his life, didn't negate his need to feel in charge.

When Dad would refuse to change his dirty clothes or wear a warmer jacket on a cold day, I'd feel frustrated.  Why won't he do what I tell him to, I'd think, when I'm just looking out for his best interests?  Because, dummy, we all need to feel independent and in control of our lives!

So it's something of a balancing act--keeping the person in your charge safe from harm--yet allowing them all the freedom and independence possible under the circumstances. 

"To Sleep, to Dream . . . "

Are you getting enough sleep?  Or too much?  Sleep is a big issue for those of us with bipolar disorder, because the amount of sleep we get is directly affected by how manic or depressed we are, and vice versa.  At one of our support group meetings recently, everyone was complaining about sleep:  either they couldn't get enough of it or they overslept and couldn't get up in the morning.

Last night I went to bed around 11 pm and fell asleep fairly quickly.  But when I got up at 3 a.m. to go to the bathroom, I couldn't fall back asleep.  After ruminating on the previous day's events, I told myself to stop and try some relaxation techniques.  I focused on my breathing in and out, counting the breaths.  I pictured myself lying on a beach basking in the warm rays of the sun.  I relaxed my facial muscles. 

Still wide awake, I decided to get up and play solitaire until I got tired.  After drinking a glass of milk and playing for about an hour, I went back to bed. 

Next, my mind began to fill with details of the projects I was working on.   Items on my "to do" list were marching across my brain, urging me to stop wasting time and get started.  No, I thought, I will stay in bed and at least rest my eyes, even if I can't sleep.  Good plan, but at 4:30 a.m. I figured there was no use fighting it and I got up for the day.

Everyone in our support group has a variation on this sleep scheme, and there is just as much variety in their solutions.  Sleep medication is one choice: Halcion, Restoril, Sonata, Ambien, Klonapin--no one drug works for everyone, and often it takes a lot of trial and error to find a decent solution.  Even then, there are nights when you simply won't be able to sleep, no matter what.  And often, there will be residual effects from the medication which hamper your performance during the day.

I tried Ambien in the past, but after using it for a while, it would no longer reliably put me to sleep.  And the night after I stopped taking it, I would have to put up with sleepless hours. I no longer take it at all.

Recently I decided to be more relaxed, and not to panic just because I'm missing sleep.  I know that when I'm hypomanic with lots of energy and ideas, I'll sleep less.  If I'm feeling lethargic and a little down, I'll sleep more.  The treatment that works best for me is getting outdoors, taking long walks, cross-country skiing--anything that gets me moving and breathing fresh air. 

I'm lucky in that this plan is working so far.  Some of my friends simply have to rely on medication in order to sleep.  They have no choice. Each of us has to find our own solution, and ways to deal with the fact that nothing works all the time. 

(Thank you, Shakespeare, for the title of this blog:  "to sleep, to dream . . .")

"Did you take your meds?"

Last night at our bipolar support group meeting, we talked about what it felt like to be asked, "Did you take your meds?" by a family member.  This kind of question is not helpful at all, especially since "the meds" are anything but a simple cure-all for our problems.  There is no guarantee that if you take your Lithium or Depakote or "X" on a regular basis, you will never have another manic or depressive episode.  Add to this general problem, the variety of side effects such as weight gain, ringing in the ears, itchy rashes, liver damage, energy depletion, mind numbing, ad infinitum, you'll see that there is no simple plan that will "fix" us. 

"Fixing us" is, of course, what our loving family would like to do.  In their mind there is a logical correlation between "taking your meds" and leading a peaceful, productive, non-combative life.  It is understandable that they fear the phone call telling them you've been arrested or are in the mental ward of the hospital or have had a car accident because in your manic state, you thought you were indestructible.  Of course they want you to take your meds!  It's their only hope.

One parent I know, who has lived through years of trying to "fix" his daughter with policing so that she would "take her meds," has come to a more peaceful place.  "It's her life," he says.  "She has to want to get better for herself, not for me. I no longer ask her if she's taking her medication or doing the things she needs to in order to stay healthy.  I stay out of it."  He added that he is there for his daughter if she needs him and asks for the help, but that's it. 

It's hard as a parent to stand back and watch the destructive behavior of our children.  I am a parent, and I was a fanatic when I thought anything was threatening my daughter.  Fortunately, she didn't inherit my bipolar genes.  I didn't have to watch any wild, destructive behavior in her that my parents had to with me. 

For those of us who are bipolar, we need to give our family members some slack.  Most of them do mean well when they ask, "Did you take your meds?"  But if you're a family member reading this, realize that such a question only frustrates and antagonizes a person suffering from bipolar disorder. 

If our meds really worked, if they really "fixed us" so that we could lead lives filled with peace, energy, purpose, creativity, level but upbeat moods, and a guaranteed good night's sleep, don't you think we'd be taking them?

Introduction

I am an artist who has been bipolar since I was a teenager, but I wasn't diagnosed until my forties.  Most of my life, I have dealth with the depression by changing jobs, places and relationships.  I've been fortunate in that I don't experience the intense mania that necessitates being hospitalized, but my lesser mania or "hypomania" has led me to do many dangerous and destructive things. 

In the year 2000 I had just moved to yet another new place, Ithaca, New York, when two people in my life seemed to need my assistance.  Saving people is another way I stimulate my hypomania, so I quickly volunteered to bring my 93 year old father and 92 year old ex-mother-in-law to an assisted living facility near me and become their primary caregiver.  Wow, did that job ever turn out to be more than I had signed up for! 

Before long, I was wallowing in self-pity and falling into deeper and longer-lasting depressions.  At this point, I had no choice but to seek help, and began a drug and therapy program to deal with my bipolar disorder.  Throughout the whole process of caregiving and dealing with my manic-depression, I kept a journal.  Writing always helped me to keep things in perspective, and it was a way to vent my anger, frustration, and despair.

Now that I have found some balance and relative peace in my life, I have turned that journal into a book, The Bipolar Dementia Art Chronicles.  I am still bipolar, but I deal with it more effectively than I used to, and attend support group meetings regularly.  My father and ex-mother-in-law have both died, so those duties have ended.  But my husband Adrian is fifteen years older than I am, so now I see myself gradually taking on more responsibility for him. 

Primarily, I am an artist and a writer, but I still care deeply about the issues of bipolar disorder and caregiving.  This space will provide an opportunity for me to share my thoughts and experience with you, and I hope you'll join the discussion through your comments.