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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Monday, January 03, 2005

A New Year

Today was actually my second visit since last Monday. The family gathered at The Birches on Saturday for a New Year's dinner. Rob brought funny hats, noisemakers, and leis and we had dinner in the private dining room. Jason, one of the chefs, waited on us again. He has become our family chef, it seems. He has been there for almost every dinner, which means he's the poor guy who gets stuck working all the holidays!

Mother seemed to enjoy herself. She didn't say much...I think she gets overwhelmed when a lot of people are having a conversation, even when we are all family. She also didn't eat much, and is losing weight. But she seemed contented enough, and when we finally went back to her room, she and David had a New Year's dance.

The New Year's noisemakers, etc. that Rob brought were left over from the dance he did at church last New Year's eve, so he had a lot of them. He brought in the boxes and we passed them out to other residents. I put a Happy New Year tiara on Eleanor's head and she lit up like a light bulb. She immediately put one arm over her head and the other in front of her, as if she were about to do a wheelchair version of a flamenco dance and began a loud, operatic song...only without real words. You'd think it was the best thing that had happened to her in a year. Perhaps it was.

Today was more subdued. When I arrived, Mother was sitting in the dining room with an unopened card in her hand. It was from one of the church members. I encouraged her to open it, we read it through, and it stayed with us for the rest of the visit. She returned to it time and time again...and each time it contained new things. Once it was a schedule of the day's activities, another time it was a box where she tried to put her fork and napkin at lunch time.

She seemed content to visit there in the dining room for the half an hour until lunch. As everyone was gathering, Carl came strolling in and, for some unknown reason, began hitting Harold on the head. It caused quite a stir. Mother and I ended up eating with Harold, who is very sweet and very hard of hearing. Carl's attack really shook him up. "Why would he hit me like that? You saw him, didn't you? Why would he do that?" Carl was a few tables away. "I've had enough of him!" he said, but I couldn't hear why.

Dot was brought in last. She was no sooner seated than she began the ritual..."I'm hungry. Give me something to eat." The chef had not yet brought the food from downstairs, the aides tried to explain. "Oh," she said. Two seconds later. "I want food." The women at Carl's table behind her were aggravated. "Shut up!" yelled one of them. "You're not going to die if you have to wait another five minutes!"

Those sorts of outbursts are a problem for other residents. I see it in the disgust on Mother's face...the frustration when she shuts her door to tone down Eleanor's ranting in the hall. I also hear it from other church members who are in nursing homes or assisted living facilities. There is, of course, the aggravation of being around those being loud or unreasonable. But I imagine there is also a fear...fear that maybe you sound like that to others and don't know it...fear that you are guilty by association--that others who see you as a resident in the same place will think that you are like them.

Of course with Alzheimer's, it's hard to tell what a person is feeling, because they can't really tell you. You have to learn to read body language and put together words and phrases as you would a puzzle. Sentences are like all the unassembled pieces dropped onto the table. They give hints about the picture, but they are often far distant from the other pieces that fit with them.

I tried to give Mother some news. I told her about the Tsunami that devastated the countries around the Indian Ocean last week. She seemed to understand what I was saying in the moment...at least she understood that over 150,000 people had died. Harold was reading about it in his Boston Globe, but he didn't know what a Tsunami was...he couldn't pronounce it, and it was all through the paper. He put it down in disgust. Mother ate all of her salad, about two bites of the main meal, and all her jello. The woman clearing the table offered to leave Mother's meal there longer, in case she wanted to eat more. "You'll wait a long time," said Mother. The woman took it away.

Harold left the table before dessert, hardly touching his meal. He was too rattled by Carl hitting him on the head. "It's a wonder I'm not bleeding," he said. "I hope I have a peaceful evening."

And so we went back to her room where a mysterious sweater lay on her bed. She was worried that her pocketbook was missing. She seems to need to take at least one, if not two, wherever she goes. It wasn't anywhere in the room. She lay down, and I said I would go look for it. I found it in the living room by a chair. She asked if Celeste was still with me, and I reported that she had gone home. It was amazing to me that she remembered that she had been there with me.

Back in the room again, I sat in the chair as she napped. Note to self: bring a book. Eventually I woke her up and said I was going to be going. First I encouraged her to use the bathroom so I could be sure she didn't need changing. All was well, and I opened the box of turtles (the candy kind!) next to her bed. She ate one. I gave her a hug goodbye. "Thank you for coming to rescue me," she said. She sat back down on the bed. "What time should I come to bring you the things you need?" she asked me. "I think I have all I need," I said. She lay back down and shut her eyes. "Do I need to pick you up?" she asked. "No. I'm all set."

I choked back the tears driving home.

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