The Zen of Caregiving

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When we finally arrived at Alterra, Elsie was pleased with the bright, spacious, brand-new feel of the place.  Until we got to her apartment.

“It’s so small,” she said.  “Where will I put all my things?”

“Whatever doesn’t fit, you can put in my basement.”      

We were waiting for the movers to come and unload.  I was dreading that part.  I hated dealing with movers.  I just wanted them to do their job and go.  I did not want to check to see if there was anything missing, or if anything had been damaged.  I wanted to get it over with as quickly as possible.

I found Dad in the pool room practicing.

“Hi, Honey, it’s so good to see you.  Do you want to go to my room?”

“No, Dad, I’m helping Elsie Stoessel move in here today.”

“Do I know her?”

“You may not remember, but she’s John Stoessel’s mother—you know, John, my first husband?  You’ve met Elsie a number of times.”

“Oh.”

“She’s going to be living here just down the hall from you.  Come with me and you can meet her.”

Dad hung out with us in Elsie’s room a bit, and when he saw Adrian and me carrying Elsie’s stuff in from the station wagon, he asked to help. 

When we finished emptying the car, Adrian went home.  He had had more than enough of this adventure.

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(from The Bipolar Dementia Art Chronicles)

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On Monday we made visits to the utility companies and to the post office to ship items Elsie’s sister wanted, and to fill out change of address forms. The real estate agent met with us and voiced his concerns about the in-ground oil tank.  We needed to find out if Elsie had insurance to cover any spillage, or this might be a jinx on the house sale.

That night Elsie’s oldest grandson came to visit and say good-bye to her.  He brought a present—a gift of fancy bedding—another thing to pack.  Elsie was very pleased that he had come and sat chatting with him happily.  My thought at the time was, how about asking if there’s anything you can do to help?  Surely once over the three days we might hear that question?

Later that night Adrian and I hauled out a humongous pile of garbage and a bag broke.  We cursed and cleaned it up.

Tuesday morning Chuck showed up about an hour before the movers arrived.  While having a cup of coffee he suggested we bring several more items than we were planning to.  He also went up in the attic and got down a couple of winter coats Elsie wanted.  Then he gave us directions for an alternate route that would get us to Ithaca faster.

When the movers came, the driver gave me a copy of their contract, which stated that I should give the men a twenty-percent tip at the end.  This little item would gnaw at me the entire trip.  But they got their truck packed, we put the last items in our car, and we all took off.

The route Chuck had suggested took us on back roads, and when we caught up with the movers at a truck stop, they asked if there wasn’t a bigger highway they could take.  “When we get here,” I pointed at the map, “you’ll be hooking up with 81, which is a good highway until you get half an hour from Ithaca.”

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(from The Bipolar Dementia Art Chronicles)

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By the second day Adrian was feeling better and helped with the packing and errands.  There were a lot of “knick-knacks” to sort through, and before we could choose a pack-or-giveaway pile for anything, Elsie told us the long story of each item’s history in her life.  These were actually delightful stories, but time was running out.

Adrenaline kept me jumping as I prodded Elsie to make quicker decisions, checked off items on my to-do list, and backed away from chatty visitors so I could get back to work.  For a special treat, we had Chinese food delivered on my birthday.  The rest of the time, I cooked.

On Sunday Elsie was going to drive herself to church service.  “Don’t be silly,” I said, “I will drive you.”  She was going to give her car, quite beat up after twenty years, to her youngest grandson.  Chuck would take care of that later.

After the service I went to church for the party.  Members told me that though they would miss Elsie, they were very happy that Blixy and I were moving her near us.  The size of the congregation had dwindled over the years as members got old and died.  They were a small but close-knit group, and very fond of Elsie.  Before we left, the Women’s Guild gave her a lovely gift of jewelry.  There were hugs all around.

It was then that I realized how this move would wrench Elsie from her extended “family” in Livingston.  They provided her social life and her support group, making up somewhat for Chuck and his family’s lack of attention.  I had researched and found another Trinity Lutheran Church for Elsie to join in Ithaca, but it had a large congregation and was unlikely to supply the friendship and support she had enjoyed in Livingston.

Blixy had agreed to check on Dad while we were away so I called her to find out how he was doing.

“He’s fine,” she said.  “But he thought I was you.”

“That’s good, I guess.”

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(from The Bipolar Dementia Art Chronicles)

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Then I found out there was going to be a party for Elsie at church on Sunday and she wanted me to come to that.  Just what I wanted to be doing, I thought—meeting a bunch of strangers and eating cake when I had so little time to prepare for Elsie’s move.

We met Roy, a neighbor who would take care of Elsie’s house until it could be sold.  He would also make sure the church got the stuff for the bazaar.  Roy was a thoughtful guy who had often brought soup to Elsie when she was shut in, helped with odd jobs and errands.  But he liked to talk.  One thing you could not do when you were packing for a move in three days was stand around talking.

We had to decide which furniture Elsie should take.  Blixy thought she should take a practical table, but Elsie didn’t like that one.  Instead she chose a large round coffee table that her husband had made years ago.  It turned out to be very impractical at Alterra, and eventually we discarded it.

As for clothes, I found I had to be right alongside Elsie throughout the process or she would simply linger in indecision.  Or mix up the piles.

“Sort through these socks,” I said.  “Put the pile you want here, and the pile you don’t want there.”

As soon as she sorted things, I’d snap them up, packing what we’d bring and stuffing the rest in the appropriate boxes and bags for the church bazaar and the VA.

In Ithaca we discovered we’d taken some of the bad socks and left some of the good ones.  That was easily solved by shopping for socks.

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I always loved to move.  Of course it was a lot of backbreaking work, but the prospect of cleaning out the old and starting off fresh in a new place always pushed me into a wonderful manic state where I had the energy to accomplish anything.  Unfortunately, that attitude kept me from understanding other people’s reluctance and fear of moving.  For a woman in her nineties who had lived most of her life in one house, the prospect would be frightening, painful and disorienting to Elsie.

I also liked to do things fast.  Once a decision had been made to move, why wait?  Waiting, in fact is what I was least good at.  I tended to get moody, paranoid and depressed when I had to wait too long for anything.

Thus, on a Friday near the end of September Adrian and I made the four-hour drive to Livingston, New Jersey.  The movers I had hired sight-unseen from the yellow pages were scheduled for the coming Tuesday morning.  That gave us Friday evening and three full days to work.

One thing I was worried about was that too many people would try to help us—Chuck and his sons, perhaps neighbors or friends from Elsie’s church.  I knew from experience that too many people packing and talking and getting in the way (my way) could result in poorly packed boxes, extra confusion, and much distraction.  Well, I needn’t have worried. 

On arrival in Livingston, I was appalled at the clutter and piles of half-sorted memorabilia spread throughout the house.  Elsie was picking through items one by one, setting aside an antique teapot for the upcoming church bazaar, a barely-used handbag and scarf for the Veteran’s Association (VA) bag.

“Wait a minute,” I said.  “Why are you picking out stuff for the church bazaar and the VA?  You need to be choosing what you want to bring to Alterra so I can pack it for you.”

“I want the church to get anything decent for the bazaar,” she said.  “And the rest should go to the VA.  Someone might be able to use it.”

“How will they get it?”

“There’s a pick-up the day after we leave.  They’ll come to the front porch and pick it up there.”

After the pleasantries and a cup of tea, Adrian asked me to make up our bed so he could rest.  He was feeling lousy with a cold virus.

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In early September the Alterra director told me they were filling up fast in case Elsie wanted a room.  There were only two one-bedroom units left.  I looked at them both and picked the one with a great view of a farm next door.  This apartment was larger and more expensive than Dad’s, but Elsie could afford it.  “Hold this one,” I told the director.

Then I called Elsie.  “We need to move you by the end of September or there won’t be any rooms left.”

“That’s awfully soon,” she said.  “I don’t think I could get ready in time.”

“Adrian and I will drive down to help you.”

Blixy could not go to New Jersey with us because it was her busy season at work.  That left the project up to me and Adrian.

“Chuck is not happy about me moving so soon,” Elsie said in another phone call.  “He wants me to wait until he retires at the end of October so he can check out the place and help me move.”

“If you wait, there probably won’t be any openings.”

“I know, I told him that.  I don’t know why he can’t take off a few days.”

“We can do it without him.  I’ll arrange for movers to pick up the furniture you want.  Adrian and I can help you pack and deal with all the other details.  Our station wagon will hold all your clothes and personal things.”

“I don’t know where to start.”

“Try to sort through your stuff and pick out what you want to bring.  But I’ll pack it for you.”  Elsie always tried to do more than she should.  “Don’t do any heavy work,” I insisted.

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The Alterra director and head nurse called me to a meeting.  “We’re going to have to put your father under 24-hour observation,” they said.

My first thought was that they might want to put Dad in the house next door for Alzheimer’s patients.  It would have been awful for him and for us, and we would never forgive ourselves then for moving him out of his house in Florida. 

I bought a half-dozen nightlights and put them all over Dad’s room to help him find his bathroom and anything else he might need in the middle of the night.  I put up signs marked “BATHROOM” in bold letters, with arrows pointing in the right direction.  Bill gave him a piece of paper to put in his wallet that had his room number written on it, to help him figure out where he was and where he lived.  On the outside of his door, we put a plaque with his name on it that one of my nephews had made.

After three days, Bill and Nita went home exhausted.

I was exhausted, too, but my job as Dad’s primary caregiver had just begun. 

I wrote another letter to Dad and left it on his card-table.  In it I explained his move from Florida to Ithaca and reassured him that he was in a wonderful place.  I told him where all his nearby family lived and gave him my telephone number so he could call me any time. I ended it, “We all hope you will be happy here, Dad.  Love, Lynne.”

Thankfully, Dad gradually learned where his bathroom was and settled down at night.  After a week the director told me that Dad didn’t need nursing supervision any more.  He was getting along just fine.

It was amazing how quickly he adjusted to Alterra and forgot about Florida. 

“I’m very happy here,” he said.  And, “The food is good.”

Once he left his room he couldn’t find it again, of course, but there was always someone around to point him in the right direction. He tried to pay for meals and tip the staff, and brought open cans of beer with him everywhere, but he was polite and sociable and soon made friends with the staff.  He seemed to know instinctively what behavior was expected in this environment, just as he had known what was expected in his local bar.

One down, one to go.

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The next morning Dad was himself again, which was a big relief.  To say he was “himself” meant that he recognized who we all were, that he was living in the present again, not the past.  I made a big breakfast for him, and then he and Bill went off to Alterra while I went shopping for things Dad would need.

The day went by quickly and Dad seemed fine as we helped him settle in and learn his way around.  Bill had agreed to spend the first night in Dad’s room sleeping on the loveseat that opened up into a single bed.  Thankfully, I got to go home.

Dad got through his first night OK with Bill there.  He was still agitated at night, but at least Bill was there to calm him down.  The next day Bills’s wife Nita came to help and said she’d spend the night with Dad so Bill could come back to our house and get some rest.

We should have realized that only a son or a daughter would work as a companion for Dad when he was agitated.  He knew we were family, even if he forgot the exact connection. 

When we saw Nita the next morning at Alterra, she said Dad had made a pass at her in the middle of the night and she had to move to another room.  Her report to the nurse worried the staff about Dad’s possible future behavior.  In addition, after Nita had left him alone he wandered the halls looking for a bathroom, and ended up urinating in a wastebasket he found.

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Bill tried to explain the facts to him.  “Who am I?” he asked.

“You’re my brother, aren’t you?” said Dad.

“No, I’m your son.”

But Dad wouldn’t believe him. “Buddy, if I give you ten dollars,” he said to Adrian, “will you give me a ride home?”

We were at a loss how to comfort him.

“Can I use your phone to call my mother?” he asked later.  “She’ll be worried.”

“There’s no one to call,” said Bill.  “Your mother and father died a long time ago.”

What had we done?  Dad’s mind seemed to have snapped completely.  And it was all our fault for meddling in his life.  Only the fear of upsetting him more kept me from bursting into tears.

The only one who seemed in control of himself that night was Adrian.  Not that he wasn’t sympathetic, but he wasn’t watching his father regress to childhood.

Finally it was time to go to bed.  We had planned to let Dad have the big guestroom with its own bathroom and let Bill sleep in the little room next to Adrian and me.  But now I figured we’d better put Dad next to us, since he was likely to get up during the night and would not know where he was.

“Why don’t you sleep in the big guestroom, Bill, so at least one of us will get a night’s sleep?”

Bill agreed.  I got him settled and then showed Dad where he would sleep.

“I’ll be right in the next room, Dad, if you need anything.”

He said he was tired and got into bed, but twenty minutes later he was up.  I had to reassure him all over again and get him back to bed.  We went through several sessions of this throughout the night.

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We arrived in Syracuse and I drove us to Ithaca, an hour and fifteen minute ride.

“This is beautiful country,” Dad said once we left the city for the serene countryside.  “It’s a far cry from Newark.”

When we got home, Adrian welcomed us.  The three men sat on the deck drinking beer while I made dinner.

“This is a lovely place you’ve got here,” said Dad.

After dinner we played four-handed pinochle and Dad managed without any trouble.  This was how we checked on the state of his mind—by how well he handled card games.

As the evening wore on, Dad became more and more agitated.  He said he wanted to “go home.”

“Which one of you will be able to give me a ride?” he asked.

“Where do you want to go, Dad?”

“I’d like to go home if you don’t mind.”

We tried to reassure him.  “You’re going to sleep here tonight, Dad, and tomorrow we’re moving you to your new home.”

Nothing worked.

“My mother is waiting for me,” he said.  “And my Dad needs me in the store tomorrow.”  Dad’s father had owned a grocery store in Newark where Dad worked after school.  It was a shock to see how far back in his past he had traveled.  I don’t know who was more upset by this, him or us.

(to be continued)

(from The Bipolar Dementia Art Chronicles)