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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Saturday, December 25, 2004

Christmas

It is Christmas night. We debated whether or not to bring Mother back home for the day, but decided that it was too soon for her to be back in her old environment. She might have to go through the whole adjustment thing all over again. So, the whole family headed over to Concord. One of the nice things about The Birches is that we can reserve a private dining room for such occasions, and we did so. There were nine of us.

Of course, when we arrived she was...as usual...lying down. It's always the same. On the same side of the bed, fully clothed, on top of the covers, lying on her back with her knees raised so that her feet are flat on the bed. Sometimes her head is shaking, sometimes not. So that's how we found her today, just before lunch. She got up to greet us as we came in, and then lay back down again. She cuddles with her stuffed bear sometimes. "He keeps me company at night when David's not here," she said, "Or sometimes even when he is."

At noon we went down to the dining room for the lovely ham dinner they had prepared. Mother ate very little, trying to give her food away to anyone else who would take it. I was sitting next to her and tried to encourage her to eat. "You haven't eaten a thing," I said. "Yes, I have," she responded. "I've eaten everything that's not here." Hard to argue with that. She did make rather quick work of dessert.

I wondered why I was concerned about it. Of course if she doesn't eat, she will weaken and will not live as long. But, all in all, that may not be so bad. Do I want her body to be strong so she can outlive her mind by 10 or 20 years? Haven't I already prayed that she would not have the longevity that is typical in her family? Isn't life more than biological function? If she were enjoying her food, I would not take it from her. But if she gets no pleasure in it, why should I try to force her?

There doesn't seem to be much pleasure in anything these days for her. As she opened her gifts, there was no reaction. Just look at what is in this box and then open the next. I thought about how her best friend of 55 years had described her as "flat." That seemed to fit. There was a bit of life when she hugged the bear. There doesn't seem to be a great sadness either...just flat. There is some recognition and pleasure when we come in and she greets us, but then she lies back down and enters her other world.

Perhaps it is womb-like in sleep. Dark...safe. The stuff of dreams never does make logical sense, but their senselessness doesn't trouble us while we are dreaming. I wonder if the dreams of those with Alzheimer's are stranger than other dreams? I wonder if the brain is working overtime at night to try to make sense of the senseless. Or maybe their dreams are perfect logic and it is the waking hours that are disjointed.

"Eat another bite of ham." "Why?" There is no answer.

Monday, December 20, 2004

The First Snow

I was delayed in my visit today due to the first snowfall and a funeral appointment. I didn't leave here until 2 pm, and in the bad weather it took me quite a bit longer to get to The Birches. One of the blessings of memory problems, however, is that Mother didn't realize I had missed being with her for lunch. She probably didn't even realize that it was Monday and that I should be coming today.

Again when I came she was napping on her bed, occasionally whispering sweet words to the stuffed bear I bought back when I was shopping for her room. I got her a stuffed elephant, too, since that was the mascot for the High School where she worked for 35 years, but the bear seems to have won the popularity contest. Almost every visit she has told him what a good bear he is, and she tells him goodbye when she leaves the room.

She also likes to travel with at least one, if not two, pocketbooks. She feels lost without them, and if I suggest she leave them in the room, she does so only with great reservation. Apparently she is becoming the resident kleptomaniac. Not that she means to take things that don't belong to her, but she was always so organized that if she finds something just lying about, she takes it to put it in its place...which is generally in her room somewhere. I have found even staff items there...once a book of information on another resident. Then it was the 2005 calendar that one of the staff put out in the activity room to have ready to hang at the start of the year. Whoosh...it was gone. There are clothes hanging in her closet that are not hers, but whoever owns them did not follow instructions and mark them with their name. She says they are David's.

Last Thursday was The Birches' Christmas party. Our whole family came. David and Laurie and me, Rob and his wife, another friend, Marie, and her son. It was quite a spread. I thought they might just have some cheese, crackers, and punch, but they really went all out. There were four kinds of hot hors d'ouevres, shrimp, the cheese and crackers, desserts, egg nog, wine, punch, you name it. Someone was playing the piano. It was really very nice. The executive director was there...he knew all the residents by name and many of the names of family members.

But none of that excitement today. In fact, for most of the visit, she did not leave the bed. As she lay and closed her eyes, I just sat, remembering the power of presence. I took one of the high school yearbooks from off a shelf. I brought three of them to help her remember the times at school. When I pulled that out she got up and came over, joining me in looking over the faculty pictures. She saw her picture there. "Ugh...what awful hair!" she said. It was a pretty bad picture of her. Then she lay back down...but only for about 30 seconds at a time. She certainly got her exercise in situps if nothing else.

I asked if she wanted to do a puzzle. She didn't. I had brought the first of the new puzzles last week...a kitten curled up with a teddy bear. I had remembered my note to self about taking her back to the bathroom after lunch and before the puzzle, which I had done with success. However, after the bathroom, she lay back down and then wouldn't go do the puzzle. On my way out last week I saw Frances in her room and asked if she wanted to do the new puzzle. If you can ever say that a woman with a walker is speedy, she almost flew from her room to the dining room. I poured out the puzzle in front of her and assume she was contented the rest of the afternoon.

But no such thing today. Frances had company today, so I just left the next new puzzle for another day and was content to sit with Mother as she dozed. After a bit she began to talk, still lying down with her eyes shut, but obviously something on her mind. I asked if the staff was nice. "Yes, she said, but not as nice as he used to be." She had shifted to David. "I think he's jealous, although there's no other man here to take his place." A lump grew in my throat. She was trying to process why David didn't live with her anymore. One of the aides came by with mail. She got three Christmas cards from friends. I found the pile of cards that had come in and put them all up along a plate shelf that runs across the top of her room.

She asked whether I had seen Grandpa and Grandma--her father and step-mother. Her step-mother is still living and in a nursing home in Connecticut. Her father died November 1. She went to the funeral...I conducted the funeral...but she doesn't remember that he is gone. I don't know whether to remind her of that or not. So far I haven't. I have just said that I haven't talked to him lately. It was hard doing that funeral...both because it's hard to do your grandfather's funeral, and because it was hard to do his funeral while looking at my mother. Sometimes she seemed to understand, sometimes she didn't. But when I started to read the 23rd Psalm, she said it right along with me, without a note and without missing a word. Life is a bittersweet thing.

After she talked for awhile, she tried to put on more clothes. She was cold, but already had three layers on. With the temperature outside a balmy 1 degree Farenheit, it was a bit chilly in the room. I looked at the thermostat, which was set much higher than the actual temperature. So we went down to the kitchen area to see if someone could do something about the heat. The director was coming through and he came down to fix it...they've had some problems with pipes freezing in the past...it's a forced hot water system.

It was getting dark, so I said I needed to leave, but that I would be back on Saturday for Christmas, along with everybody else. She asked me to write that down. Note to self...get some paper for her room. Nobody seemed to have paper, so I wrote on the back of one of the Christmas card envelopes, "Anne will be here Saturday for Christmas dinner. Rob and Steph will be here, too." She tucked it away in one of her pocketbooks, where she will not remember she has put it. Note to self. Find erase board to put by her door to leave notes.