The Zen of Caregiving

Bipolar Dementia Art Chronicles - 4

(continued - see previous post)

 

April 27 was Dad’s birthday and I felt guilty that I wasn’t with him.  Luckily one of my nephews was going to be in the area on business and would take Dad out to dinner. 

 

Adrian complained about the local gym he had just joined.  He compared it to the wellness center in Morehead where everyone smiled or said hello when they saw you.  “Here people act as if they don’t see each other,” he said.  Adrian missed Morehead much more than I did because he had a life there.  He went places and saw people and did things.  I am a hermit so it’s irrelevant where I live.

 

I picked up Rachel and Mike at daycare for the first time.  Mike was glad to see me, but Rachel acted like I was kidnapping her.  She screamed when I picked her up and didn’t stop for the whole twenty-minute ride home.  Then when we got here she screamed some more.  I finally stuck her in her booster seat at the table and gave her some juice and food.  After she calmed down, she played with Mike and me in the living room.

 

At the beginning of May we went to an art opening downtown, a solo show of large colorful abstract paintings by a local artist. I felt a strong connection because my own work is large, colorful, and abstract. It also felt great just to get out of the house and do something.

 

We came home pooped, ate tacos and watched Out of Africa.  The strongest impression I was left with from the movie was that Masai sense of living in the moment—a state I aspire to but have little experience with.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 3

(continued - see previous post)

It was raining the day we moved to Ithaca and it continued to rain day after day after day.  We spent our time unpacking, buying stuff for the house, getting my studio and office set up.  The house had a two-bedroom apartment on the lower level which would be my art studio.  The ceilings were a little low, but there were lots of windows and a separate entry-way.  We were having extra lights put up and a ventilation system installed to suck up the fumes from the acrylic paint.  The apartment’s living room would be my studio, and the largest bedroom, my office.  The kitchen cabinets would hold paint and other supplies.  It wasn’t my idea of the perfect art studio, but it would work. 

 

The unfinished section of the basement was a disaster – dark and damp with a sump pump in one corner, a single bare bulb for light, and cobwebs hanging from the rafters.  We hired a contractor to put up fluorescent lights and install a drop ceiling. That’s the only way I could even consider setting foot in it.  Adrian picked up some indoor-outdoor carpeting for the floor, which would make that space good for building canvasses.

 

My sister Laura called and told me Dad had had a couple of bad days.  She said he was worried about his foot, but that Jackie was taking care of him.  Dad had been sitting in the back yard with bare feet one day and was attacked by red ants.  He didn’t feel the stings soon enough to stop them from biting him, and then when he ignored the wound, it became infected.

 

I spent a whole morning trying to get my computer modem connection working, unsuccessfully.  Then Blixy called and asked me to come to lunch and shopping with her.  I bought children’s car seats, a booster seat, potty chair, and other stuff for the kids.  Back at the house I made supper for them.  While we colored Easter eggs with four-year-old Michael, one-year-old Rachel was constantly into trouble, getting at everything that wasn’t locked down.

 

As they left, Adrian said, “Your life will never be the same again.”

 

That was OK with me.  I had struggled as a working, single mother for most of Blixy’s childhood, and was too distracted to fully enjoy her.  When she gave birth to Michael, I was amazed at how quickly I became attached to him.  Now I can “just sit” with a child in my arms and be content.  And of course, I get to give them back to their Mom at the end of the day.

 

I spent a whole day working on the computer and still couldn’t get it to work.  When I complained to Adrian that I was depressed because of the computer and a spider in the basement that kept me from opening a box of paintings, he said, “You got what you wanted.”

 

“Are you going to memorize that line and bring it up to me each time I complain about something?”

 

“Yes.”

 

A couple days later the sun finally came out.  I went to Staples and bought Windows 98 and installed it, and the computer worked fine.

 

Before Rachel’s next visit, I went through the house collecting all the fancy vases and knick-knacks and putting them away on the highest shelves.  I cleared out the bottom shelves of a bookcase to put the toys Blixy had brought over from her house.  I wanted the kids to feel welcome and comfortable, and the house to be safe from Rachel’s onslaught.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 2

(continued - see previous post)

When things stayed the same I got bored, and then I got down.  A new job, a new town, a new house – these offered promise and a challenge – something to pump my adrenalin, push me into high gear.  I always gave the new project my all, and the manic energy generated allowed me to accomplish amazing things. 

 

It was staying power I lacked, and that’s why I had never stuck with the one thing I wanted to do most of all – to make art.  As far back as I can remember, I loved to play with paper, chalk, paint, glue, ink – whatever I could get my hands on to make marks, build shapes, create color, line and form.    

 

I never abandoned my art completely, but I never gave it center stage for very long, either.  There were always excuses like “I need to make a living” which made me put the art in second place, part-time, when I could get around to it.  That was OK because I always knew that one day I’d be doing it full-time and that day would come soon. 

 

Before I knew it I had spent considerable time as a student at six different universities, had half-a-dozen careers under my belt and was 54 years old with a new PhD in creative writing.   The gig at Morehead State was perfect for the first two or three years and I had time to paint as well.

 

Painting was easy then and fun.  It was my escape from the drudgery of reading student manuscripts, preparing for classes, attending endless academic meetings.   I put the best of me into my art.

 

After the third year at Morehead, I got itchy to get out, as I always did.  You can’t just say you want to quit your job and move on without a good reason, though, so I’ve always come up with one each time.  Usually it was a combination of finding fault with the place we were in plus a benefit on the horizon.   The benefit this time was a calculation that we could afford to retire so I’d be able to paint full time.  Adrian was fifteen years older than I was and had been retired since I’d met him practically, but I had been working on and off to hold up my end. 

 

 It took us two more years to finally get out of Morehead.  We chose to come to Ithaca because it was near my daughter Blixy and her family, and we thought we could afford to live here.  We made a minor miscalculation in that.  Even though both houses were the same price, the one in Kentucky was 4 years old when we bought it.  The one in Ithaca was 17 years old – just about ready for some major repairs.  In addition, Kentucky taxes and utilities were low, New York state just the opposite.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 1

I decided to share my book, The Bipolar Dementia Art Chronicles: How a Manic-Depressive Artist Survives Being the Primary Caregiver for Her Father & Ex-Mother-in-Law: A Memoir.  Each day I'm not writing about other topics, I'll include a section of the book.  It begins here:

Chapter 1

 

  We all move to Ithaca, New York

 

I called my Dad one day in April of 2000 to ask him how he was doing, and he answered, “Fair.”  He didn’t say “good” much any more, unless Jackie or the floozy was with him.  The floozy was a thirty-something drug addict/hooker Dad let live in the spare room of his house in Melbourne, Florida.  Jackie was a dependable woman in her fifties we paid to help out a couple hours a day.  The floozy drove Jackie nuts.  “I’m not buying your father any more beer,” she would say, “so that floozy can drink it.  And I’m not cleaning her room, either.”

 

Dad was 92 with a failing short term memory, but he loved his independence and his daily routine in Melbourne.  He’d have breakfast at his kitchen table looking out through the sliding glass doors at the birds and squirrels eating out of his back-yard bird feeder.  Then he’d take the six-block hike to his low-brow bar to hang out drinking beer, getting into the occasional game of pool or darts.  That’s where he met the floozy.

 

Dad would hike back home from the bar in the hottest part of the day, and he’d be ready for a nap after that.  A little solitaire, watching thunderstorms from the safety of his screened-in front porch, sitting in the back yard on cooler days – these were Dad’s routines.  Then, when he felt a thirst for beer or society, he’d head back to the bar where everyone greeted him as “Mr. Bill” and made a place for him to sit. 

 

Dad had been living alone for three years since Mom died, and we six children were worried about him.  But when we asked, he always said he was happy with his life and that he didn’t want to live anywhere else, so we meddled as little as possible.  Hiring Jackie to take care of the house and feed him at least one good meal a day was about all we’d managed to accomplish. 

 

The night before I called Dad I’d had a nightmare in which he was hit by a car and died.  I was yelling over and over that I should have visited him more.

 

Adrian and I had just moved to Ithaca, a college town in the finger lakes region of up-state New York.  For the five previous years we lived in the little town of Morehead, population 8,000, in eastern Kentucky.  I taught creative writing in a tenure-track job at the State University while Adrian enjoyed taking free classes, playing tennis with his Physics professor and meeting up with a friend at the Fuzzy Duck coffee shop for games of chess.  It was the kind of town where you always ran into people you knew at the supermarket and video store.  Life was cozy and I even got tenure, which most people would take as a signal to stay put.  I took it as the siren call to move on.  Five years was the longest I’d stayed at any one job in my life.

(to be continued)

(From The Bipolar Dementia Art Chronicles)

Is Mindfulness a Cure-All?

In my life with bipolar disorder, and my life as a caregiver, I alternately fall in love with mindfulness and despair of it's curing anything:

    When I can be present and listen mindfully to Adrian without reacting defensively, negatively or impatiently, we both come away from the experience feeling more peaceful. 

    When I take the time for a fifteen-minute morning meditation before I begin work, It helps sustain me throughout the day. 

    The more I can stop whatever I'm doing or thinking, take a deep breath, and come back to the present, the better my day goes.

    Yet it takes a certain baseline of composure and well-being for me to allow myself to be mindful.  When I am in the depths of despair and numbing depression, it's hard to be present.  My desire then is only to escape. 

    When I'm in the depths I can't imagine ever feeling peaceful again.  And now, when I'm feeling the abiding peace and joy of being present, I can't imagine not being able to summon up the friendly breath of mindfulness at any time.

When the Doctor Becomes a Caregiver

Dr. Arthur Kleinman sounds like he was a compassionate man long before his wife was stricken with Alzheimer's disease. Back in 1966 as a visiting medical student, he was appalled at a neurologist's lack of "caregiving" in treating a young couple.  Kleinman brought the issue up with the physician, who then re-met with the couple to offer more comprehensive advice, "including empathic suggestions for rehabilitation, family counseling, and social-work assistance."

Now Dr. Kleinman has to help his once-brilliant wife negotiate a path through the living-room, find the food and utensils placed before her, and other caregiving tasks many have faced when living with a spouse who has Alzheimer's. 

You'll want to read Dr. Kleinman's own account of his experience, written up in an article in the Harvard Magazine.  It is a touching story, with much insight.  Also read the comments, especially those of Pam Mack, for another point of view.

Back from the Depths of Depression

Sorry I haven't written in a month and a half.  For a while there it looked pretty grim.  That's how depression makes everything look. 

How did I get out of it?  I have a fabulous therapist, and together we made a list of things I might do that would be helpful.

One thing on the list was trying once again to find a medication that would work for me.  I am super sensitive to side effects, and had already tried so many.  But I went to a specialist in psychiatric meds, and after seeing her, started on a low dose of Zoloft.

A month later I'm off the Zoloft and feeling great.  The Zoloft turned me into a lazy zombie.  It also gave me severe diarrhea.  It's such a relief to be "back to being me" again!

The other stuff is all good:  therapy, meditation, walks in the woods, accepting support from family and friends.  I just can't do the med thing any more.  

Adrian is now deeply depressed, so maybe we are just trading places?