The Zen of Caregiving

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

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(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)

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(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)

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(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)

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(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)

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(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)

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(continued)

Chapter 2  

I Learn the Ups and Downs of Being a Primary Caregiver

One day early in November my project for the day was to get Dad to change the slacks he’d been wearing for three weeks.  When I got to his room he was glad to see me as usual, but resisted my mission.

“I changed my clothes when I took a shower today,” he said.  “I’m not going to change them again.”

Why would he want to change his clothes in that cold room?  Residents had a combination heater/air-conditioner in their room with a thermostat to control it.  But Dad had forgotten how to use a thermostat or how to find the thermostat.  It was hard to pin down where his knowledge was deficient, but he certainly didn’t use the thermostat.  I plugged in the heater for him knowing he would unplug it later.  Maybe the noise bothered him?

“Dad, you’ve been wearing those slacks for three weeks,” I said.  I took clean slacks and a shirt out of his closet and laid them on the bed.

“You can put those back because I’m not changing.”

His stubbornness made me royally pissed.  “If you want to come to my house for dinner,” I said, “you’ll change your clothes.”

To show him that I meant what I said, I was about to walk out the door.  But then I remembered that I didn’t have a car.  Adrian had dropped me off and was going to pick us up later.

Might as well play gin rummy, I thought.  I cleared off Dad’s card table so we would have some room.

“If I lived at your house,” Dad said, “you could tell me what to do.  But this is my place.”

“You’re right.”

He quickly won two bucks off me and I gradually calmed down.  What difference did it make if he changed his slacks?  Bill told me that men don’t change their clothes every day like women do.  That was his excuse for doing nothing about it when he visited Dad.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 32

(continued)

Blixy took care of Elsie’s finances, her legal affairs, health insurance, and medications.  Getting it all organized in the beginning was a major hassle.  Then periodically Prudential would cancel Elsie’s health insurance for no apparent reason and Blixy would have to badger them to get it straightened out.

I took Elsie to all her doctor’s appointments, bought whatever she needed for her apartment, and sometimes took her shopping for clothes and gifts.  Between the two of us, we had her covered.

We also visited as much as we could and took her out to parks or to my house for dinner.  She always complained that we didn’t do enough of this, though.  There seemed to be no way to satisfy her.

Yet Elsie and Dad were basically doing fine at Alterra.  It was working for both of them, even if they didn’t enjoy each other’s company.  Elsie found the residents who “had all their marbles” to talk to and play Uno with.  Dad hung out with a few guys who liked to play pool and watch sports on TV. 

We could feel good about bringing Dad and Elsie to Ithaca.  We did the right thing.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

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(continued)

One of  Elsie’s big complaints was about the meals at Alterra.  “The food is awful here,” she told us often.  “They never give you a green salad.  All you get is dried-out chicken breast.  Tasteless.” 

Dad always said, “The food is good here,” but I think Elsie’s opinion was probably closer to the truth.  She had been an excellent cook, and when I was first married I learned a lot from her and still use her recipes.

My hope at the beginning was that Dad and Elsie would become friends. I hoped that she would learn how to play gin rummy and pinochle, and that she would keep an eye on him for me and let me know how he was doing.  It would make it nice for Blixy and me if we could visit them both together, have them both over to dinner, and take them both on outings.

This plan did not work—the opposite happened, in fact.  Each was jealous of the time we spent with the other.  Elsie refused to learn any new card games.  She wanted to hang out with people who “had all their marbles,” and Dad wanted no part of her.  When they visited my house, he wanted to go home early and she wanted to stay late.  Instead of making things easier, they became more difficult.

 (to be continued)

(from The Bipolar Dementia Art Chronicles)

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(continued)

Unlike Dad, Elsie did not settle in happily at Alterra.  She missed her house.  She missed her freedom.  “I used to be able to get up and drive wherever I wanted to,” she said.

Over the years it had gotten so difficult for Elsie to maneuver through the Livingston traffic that there were very few places she drove to, and she often went roundabout ways in order to avoid making left turns into traffic. She had agreed with us that she should stop driving, but still, she missed that independence.  Who wouldn’t? 

Recently Adrian and I decided that I would do all the driving when we’re in the car together.  He drives himself locally, but I don’t feel safe in the car with him behind the wheel.  He is OK with this plan because he knows he is not always alert, especially on long trips. 

I don’t have any trouble taking other people’s driving privileges away from them.  Just don’t mess with mine.

(to be continued)

(from The Bipolar Dementia Art Chronicles)