The Zen of Caregiving

When the Caregiver Has A Mental Illness

I am bipolar, and have managed fairly well over the years.  But the stress of caring for a husband with Alzheimer's may be the straw that broke the camel's back.  When I am feeling "up" I find myself filled with compassion, patience and kindness.  I don't mind jumping up from my dinner 10 times to help Adrian find his glasses, fix his hearing aids, or bring him some hot sauce. 

When I am down, however, I can resent having to jump up even once.  Small things can cause me to lose patience.  And when he sees that I'm upset, that just gets him upset, and he is unable to handle it.  It's frightening for him because he fears I will abandon him.

The most important thing I've learned as we've gone through many of these cycles, is not to believe what I'm thinking when I'm down.  I have to remember that "this too shall pass," and do the best I can to nurture myself.

I also have to get emotional support elsewhere, because Adrian is just not capable of it at this stage in his illness.  I know he loves me and wants the best for me.  I love him and want the best for him.  We are two people trying hard to make our life together work.

Same Caregiving, Different Attitude Changes All

I have been doing whatever is necessary to give Adrian the help he needs because of his dementia and physical disabilities. A while ago I overheard him tell a friend, "Lynne does everything a good wife would do."

But he also added, "I don't think caregiving is the work she wants to do."

Of course he thought that, because it was what I thought also.  While I did what was necessary, I did it as if I were bearing a huge burden. 

Recently Adrian and I talked about the changes in me since I've been reading Dr. Richard Carlson's book, Stop Thinking and Start Living. With my new attitude, I am a much happier caregiver.  Adrian has noticed it as well.

"I thought it was phony at first," he said, "but then after it persisted, I realized you were sincere." 

Not only am I sincere, I am more relaxed and peaceful about all the stressors in my life! 

Keeping the Body Alive when the Mind is Long Gone

In the early stages of Alzheimer's or dementia, most people say they want to be able to end their lives before they stop recognizing their loved ones.  And many would rather die sooner than have their spouse or child suffer the stress and exhaustion of caregiving for years and years.  But our laws and health-care system ignore these desires.

A recent article in the New York Times Magazine told one family's version of this tragedy.  In "My Father's Broken Heart" by Katy Butler, Butler's father rejects a pacemaker when he is rational enough to do so.  Two years' later, with dementia advancing, his wife had to make a quick decision, and was convinced by the cardiac surgeon to allow it.  

That pacemaker kept Butler's father alive, but the increased caregiving burden took years from her mother's life.  Reading this article, I was struck by the similarities in coping mechanisms used by Butler's mother and myself:  meditating and reading books on how to have more patience. 

I'm glad I've taken up meditation and love the books I'm reading on how to be more patient and live in the moment.  But I do not want to give up my last good years to caregiving the way Butler's mother did.

When the Level of Care Increases

Three weeks ago Adrian had an accident with his bicycle and fell onto it, cutting his head, hurting his body, and knocking his glasses off.  He managed to walk his bike home, but when I saw him, he and the bike were covered in blood.

I'm not very good in emergencies, and panicked when we could not get the bleeding over his eye to stop.  I called a neighbor for help getting to the emergency room, and she told me to call 911, which I did.  The EMTs arrived quickly and said I had done the right thing.  They couldn't get the bleeding to stop either.

The emergency room was very busy, and as soon as they got OK results from a cat scan of Adrian's head, they released him.  He was dizzy and nauseous, and soon fell again in the bathroom.  Two days later he fell again. 

He must have torn a ligament in his elbow and either cracked a rib or done something else which caused pain behind his shoulder blade.  For three weeks now he's been on pain pills to get through the evening and night.  I have to get up periodically to get him a pill or help him get in and out of bed.  He can't wear pullover shirts any more. 

The level of care Adrian required since the accident has increased greatly, and that combined with sleep deprivation has made me cranky at times.  It is both easier and harder to do the extra caregiving.  Easier because I can see he's in pain and the physical things he needs me to do are obvious.  Harder because the extra work and lack of sleep have taken me out of my usual routine. 

Adrian is supposed to visit a son in California soon, and I just hope he makes it.  I can use the rest.

Finding Peace by Changing Our Thoughts

A book I read recently has changed the whole way I am approaching my life as the caregiver for a husband with Alzheimer's.  Richard Carlson's STOP THINKING AND START LIVING has made a profound impact on every aspect of my days and nights.  He encouraged me to make a commitment to be happy no matter what.

Interestingly, I have a friend who has managed to be happy her whole life, even though she's been through some awful things: having her husband join a cult; two divorces; being mugged; losing her job.  She doesn't have a lot of money, but she has a joy for life that is unmatchable.  I had never thought that I could possibly be like that.

Here is a list I made for myself from Carlson's book:

DON'T HURRY - SLOW DOWN

BREATHE

LISTEN TO THE QUIET

FOCUS ON ENJOYMENT

THE PAST IS OVER (INCLUDING THE AWFUL THING THAT JUST HAPPENED 5 MINUTES AGO)

ALL WORRY IS A WASTE OF TIME AND EFFORT

I AM THE THINKER OF MY THOUGHTS

HAPPINESS IS A FEELING, NOT AN OUTCOME OF EVENTS

THE FUTURE AND THE PAST ARE JUST THOUGHTS

LIFE IS RIGHT NOW

LET IT GO

PRACTICE

Bipolar Dementia Art Chronicles - 38

(continued)

When I got to Dad’s room later, he was glad to see me as always.

“You’re the only one who comes to see me,” he said.  “Is that because of where we live?”

“Right, Dad.  I live ten minutes away, but the others are a few hours at least.”

“I see.”

“Bobby was here two weeks ago, and Adrian comes by often.”

“Not that often.”

“He comes a couple times a week to play pool with you.”

“I guess he does, and I appreciate it, too.”

As I walked away from Alterra after dropping Dad off at the dining room, I realized that both Dad and Elsie wanted more from me than I could possibly give them.

Later that night Dad called me at 9:15.  “I was asleep,” he said, “but woke up and realized that gal who was supposed to come today never came.”

“Dad, I saw you this afternoon.”

“I must be confused.  I don’t have any gal.  I’m sorry I woke you up.”

“You didn’t wake me, Dad.  You must have had a dream.  Call me any time.”

“Will you see me or call me tomorrow?”

“Yes, Dad.”

“I feel better.”

“OK, go back to sleep.”

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 37

(continued)

When I had picked up Elsie earlier to take her to the doctor, it was lunchtime at Alterra and everyone was in the dining room.  I snuck out so Dad wouldn’t see me because I didn’t want to confuse him or to have to explain that I wasn’t there to see him this time.  Then I worried that he might have seen me through the dining room windows as Elsie and I walked to the parking lot.  Maybe he even said to the people at his table, “That’s my daughter.”

What wonderful paranoid places my mind took me to.

There should have been enough time to get the echo-cardiogram of Elsie’s heart, have a relaxed lunch, and then do some shopping at J.C. Penney’s.  Elsie brought her shopping list along and I had promised to take her.  But the night before my glasses had broken so we stopped at the opticians to get them repaired.  Naturally they couldn’t be as the frame was no longer manufactured, so I had to order new glasses.

I wanted a second opinion on the frames, and had asked Adrian to go with me, but he was going to a spin class in the middle of the morning.  He went to these classes ten times a week and I didn’t see the big deal in missing one, but it seemed important to him so I didn’t push it.  Maybe that’s why I was feeling sorry for myself.  I went to the doctor with Adrian, with Elsie, and with Dad, but nobody ever went with me.  My days were all split apart, fragmented, ruined with these trips to doctors and drugstores and endless errands.

Elsie helped me pick out a pair of frames at the opticians, but this delay meant it was one o’clock by the time we had lunch.  We went to Collegetown Bagels, which had great food but was always crowded at lunchtime and you had to stand in line to order.  We were lucky to find a small table to sit at.  Elsie ordered a roast beef sandwich, but she didn’t seem particularly happy with her food or the place I had picked for lunch.  I suppose she would have preferred a more upscale restaurant with white tablecloths and an atmosphere that said relax and stay awhile.

While I was waiting for her to finish eating, I bought a loaf of sourdough bread for home.  She still had a full cup of coffee in front of her.

“I’m ready to go whenever you are,” I said.  “Do you want to take the coffee with you?”

“Do you ever stop and just relax?”

“No, I guess I’m always thinking about the next thing I have to do.”

Elsie sat calmly drinking her coffee.  She was not going to let me bully her.  “I’d rather go shopping with Blixy,” she said.  “You rush me too much.”

How else was I going to keep everybody’s lives on track?

At this point I realized we didn’t have enough time to go to J.C. Penny’s since I needed some time to spend with Dad when we got back.  Elsie agreed.

“We’ll shop one day next week when I have more time,” I promised.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 36

(continued)

In early December I dreamt I was about to call my brothers and sisters to tell them that Mom and Dad were dead.  In another part of the dream, Mom was sitting at the kitchen table playing solitaire.  I hugged her and savored the solid feel of her and told her how glad I was that she had come.  I needed her so much.  Why couldn’t she have been the one that survived?

I felt very sorry for myself the next morning, overwhelmed by the huge needs of Dad and Elsie, and the feeling I had every time I was with Elsie that I should be spending that time with Dad.  Yet I was the one who had brought Elsie here, so I was responsible for her.

No good deed goes unpunished.

At the doctor’s office with Elsie, while I watched a technician give her an echo-cardiogram, I saw how enlarged her left ventricle was.  This was a sign of atrial fibrillation—a very fast, uncontrolled heart rhythm caused when the upper chambers of the heart quiver instead of beating.  The technician also pointed out the colorful sparks indicating mitral valve prolapse—tiny leaks in the heart valves.  Elsie’s pumping action was good for her age, though, at forty-five percent.  That’s what we needed to find out.  In order to prescribe a channel-blocker to control the atrial fibrillation, Dr. M needed to know that her heart’s pumping action was strong enough because a channel-blocker slows this down.

The technician told us there was nothing to get excited about, that Elsie’s heart was aging normally.  He said sometimes an extra cup of coffee or chocolate will cause atrial fibrillation because the aging body becomes more sensitive.  Later at lunch Elsie had a big cup of coffee and we each ate a Lindner’s Tort for desert.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 35

(continued)

We expected Dad to have trouble with the Ithaca winters after having lived in southern Florida for so long.  In Melbourne he rarely used the air-conditioning, even when the temperature hit ninety.  But somehow his Florida experience had been wiped clean from his mind.  He compared the rural scenery he saw in Ithaca to Newark, New Jersey, appreciating its cleanliness and the beauty of the lake and hills.  As soon as the temperature would get near seventy in his room, he complained about the heat.  He did the same thing if I didn’t turn my car heater off soon enough.  It was as if his body, as well as his mind, thought he had lived in the northeast all his life.

I had to be an interpreter of signs because Dad couldn’t remember the near past beyond a few minutes.  I couldn’t ask him what he had had for lunch or whether he enjoyed his son’s visit the past weekend because that information wasn’t available to him.

Patterns helped.  I visited three or four times a week, and he often called me on the phone when he was lonely or bored.  “Can you bring me over to your house?” he would ask.  “This place is dead today.  No one’s around.”  I left my phone number plastered in large print on the wall near his phone.

“I can’t come now Dad, but I’ll be there later this afternoon.”

“What time?  I’ll make sure I’m here.”

One time I found him sitting in a chair in the hall outside his door with his coat in hand, waiting for me. 

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 34

(continued)

A couple days later I dropped in on Dad again and found him in bed under the covers wearing only his underwear.  When I saw his slacks and shirt thrown on a chair, I scooped them up into the laundry hamper and quickly set out clean clothes for him.  I would finally get him to change those dirty slacks.

Each time I arrived at Dad’s I would go on a search and destroy mission to find all the dirty socks, handkerchiefs and underwear lying around and put them in the laundry hamper.  I threw away old newspapers, beer cans, and notes that said, “Lynne is coming tomorrow at three.”  I checked his bathroom floor for dampness, always happy when there were signs that he had taken a shower.

I turned into a snoop, hunting for evidence throughout Dad’s place.  I checked the empty cans to see how much beer and soda he’d consumed.  I moved the summer socks to the back of his drawer and the winter ones to the front.  I removed the dirty tissues and cans from the laundry hamper and transferred them to the wastebasket.  I checked his mini-refrigerator to find a sandwich he must have brought back from the dining room.  How old might it be?

Sometimes Dad didn’t shave for days.  His electric shaver ended up in various places in his room, and I’m not sure he knew where to plug it in.  I adamantly kept the nightlight in the top electrical outlet in his bathroom.  There was no way I was going to take a chance that he wouldn’t be able to find his bathroom one night.  His not shaving didn’t bother me.  I liked men with bristly chins.

But not shaving evidently did bother Bill on one of his visits.  “When did you last shave?” he asked Dad.

“Why?  Do you want me to shave?”

“Yes, I do.”

So Dad shaved for his son.  Sometimes Dad would do things to please us, and sometimes he would stand firm and insist that we not boss him around.

(to be continued)

(from The Bipolar Dementia Art Chronicles)