Mondays With Mother: An Alzheimer's Story

In 2002 my mother was diagnosed with Alzheimer's. It is a hard road, and we live it one day at a time. This is a chronicle of her disease and my Monday visits with her.

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Name: Anne Robertson
Location: Plymouth, Massachusetts, United States
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Tuesday, May 31, 2005

Memorial Day

I would be hard pressed to remember even as many as six days of sun since the beginning of April, but Monday dawned with some promise of breaking clouds. As usual, I called before leaving to alert the staff that I would need a place in the dining room. I was a bit concerned that it was Memorial Day, thinking that there might be some special party planned at a different time, or that they would be taking residents somewhere or something. They had a big day down at the Boston Aquarium a month or so back. I discovered that when I saw pictures posted around the place and there was Mother, having a wonderful time...or at least it looked that way.

Because of the holiday, no one was at the front desk, so I punched in the extension for The Courtyard. A man answered. I began to tell him who I was and to ask if there was anything special going on today that I should know about, but something didn't seem quite right. Finally I got it. "Is this Russell?" I asked. Sure enough. I asked him if any of the staff was there. He went looking. I heard him tell whoever was there not to touch the phone (several times). Russell gets around with two canes...the kind that attach to your forearm. He doesn't move quickly.

Eventually he came back to the phone and asked who I was again. "Joan's daughter," I said. "She's here somewhere," he said. "I'll have her call you." Then he hung up. So that was that. I got in the car and headed for Concord.

The sun was shining warmly by the time I arrived. I came down the hall at 11:45 and could hear Dot, still in her room, announcing that she was hungry. They had to scramble to set up a place for me, but some were out for the holiday, so there was room. Mother was already at the table. I said I needed to go down to her room to put my things down. When I came back to the dining room, she was gone. I went on a search for her with one of the aides. We found her in Phoebe's bathroom, door closed, brushing her hair. Back to the dining room we went.

We sat with Pearl again (Velma was nowhere to be seen)and Pearl brightened right up and asked how I was when I sat down. I guess she's more used to me now. Several times during lunch she actually initiated a conversation. I discovered that she was born in Concord and that she likes to watch TV Land on TV. I Love Lucy is her favorite program.

Mother's hair was back to its unkempt self, so I guess it was just a curl and not a permanent. Frances was looking like quite the lady, however, so I guess this week was her turn. Lunch was a spinach ravioli that I found quite good, but Mother didn't like. She didn't like the carrots either, so it was pretty much only a salad, two rolls, and the banana cream pie that made up her lunch. She was trying to tell me something that had happened with the priest at communion that morning, but I wasn't able to figure it out.

She spends a lot of time organizing her food or the things on the table. When she is finished eating, she makes sure any food left on her plate is in neat piles, and she took a long while to try to explain to me how the two pieces of ravioli that she had cut apart used to go together across what was now a great divide. Crumbs were picked up off the table with great care, and she was deeply concerned for the fate of a prehistoric tissue in her pocketbook. She finally handed both purse and artifact to me saying, "You'll need to fix it for me." Almost all of her language has to do with planning and organizing. That trait never goes away, it has just shifted from the big things that she can no longer do to the small things, like the food on her plate.

Eleanor was remarkably quiet, but Dot was in fine form, seated over with Frances and Russell. They have tried leaving Dot's plate in front of her once she finishes in the hopes that she could see she had just eaten. It was a good thought, but it didn't work a bit. By the third time she had asked if Frances' pie was hers, one of the aides said, "Come on, Dot. I need to show you something in your room."

When it was obvious Mother wasn't going to eat anymore, I got her up and suggested a bathroom visit before we went out for a walk. When she got up, I could see that was long overdue, as the back of her pants leg were all wet. So we went back, got her cleaned up, put on new clothes and headed out into the sun.

This is the first Spring she has been there, and the grounds are starting to look quite lovely. New annuals are planted, and there is also a raised flower bed where residents can plant things. There are a couple of tomato plants, some herbs, and some petunias in there now. Seed is in the bird feeders, shrubs are flowering. So we went along the walkway and found a place to sit and just watch. I looked at her and her eyes were still very dilated, even in the bright sun.

We took note of the various birds coming and going, chatting in the meantime about nothing in particular. I tried to talk about several things in particular, but those subjects have a way of vanishing into nonsense. I said something about work I was doing at church. "Oh," said Mother, "That's just what I do with my fish." I looked at her. "Your fish?"

"Yes," she said. "In the pond. They swim together in that group and ask me what they're doing, so I have to tell them." There is no fish pond at The Birches...unless someone has a tank in their room somewhere. Perhaps it was a memory from the aquarium. If I had to guess, I would say that fish made her think of school, which brought in the teaching element. But how we got from the church to fish, I have absolutely no idea.

The sun was beautifully warm. "My hat is hot," she said, patting her un-hatted head. I asked if she wanted to go in, but she didn't. We watched a male resident out for a brisk walk. Back and forth he went with a long walking stick. "He's pretty three-way himself," she said. We watched a caterpillar and she tried to explain to him where to get lunch. Of course that's normal. I do that.

Eventually we went back inside. She had taken a big coffee table book about Scotland from one of the living rooms and had it open on her bed. But her first concern was for the dog. "Cody," she said, "You have not moved a single step!" She then tried to figure out what he was staring at so intently and finally determined that it was her bright blue pants hanging over the end of the bed.

We had been outside a long time, so we said a prayer, and I left her with the Scotland book. "There should be less red, white, and blue," she said.

Alzheimer's is a terrible disease, but it doesn't have to be all tragedy. Mother's days are full, even if they are full of made-up things. She has Cody and the fish, books, and interesting things in Phoebe's room. She was quite content to sit out in the sun for a long time, watching the robins and instructing the caterpillar.

When you think about it, many lives with no physical diseases at all are much worse off. Other people rush from here to there and wouldn't see a fish pond even if there was one. The fascinating caterpillar would be squashed unthinkingly underfoot and an old man walking would hardly be visible, let alone being perceived as three-way. Someone has said that the unexamined life is not worth living. I think it is even preferable to examine it through a distorted lens than not to examine it at all.

We do not need our minds to receive grace.


Blogger Gail Rae said...

A couple of observations:
1. My maternal grandmother, who had what was probably Alzheimer's, certainly it was severely progressive, she died in a fetal position she'd been in for some months, and my maternal aunt both went through an "organizing" phase; if there wasn't something in front of them to organize, then they'd organize thin air. It occurred to me that perhaps this is symptomatic of a sub-conscious reaction to the brains unraveling organization when demented.
2. Since I agree that it is fundamentally true that we all invent our reality, perhaps the only difference for those demented is that it is hard for the rest of us to 'agree' to their reality. Fortunately, most of those who are demented do not need the agreement of others, which, I think, might be freeing.

4:54 PM  

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