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, July 22, 2006

July

I've actually been to The Birches twice since my last post. Once was for a family gathering on July 4. The Birches does a barbeque and invites families, so we went for that. David had reserved the private dining room, so we weren't with the others, and only Rob and Laurie rounded out the family crowd. Rob and I went up together.

Mother seemed more alert. She has Parkinson's now, which isn't really a good thing, but it seems that the medicine for that might be helping her. Mother was wearing a patriotic necklace that they had made in a craft session. In a way, visiting there is much like visiting a camp in that you get to see what your family member has worked on recently. Of course it's hard to tell how much of it she actually did, but I'm sure they encouraged her to do as much of it as she could unaided.

Like with other family times, it is always a challenge for any of us to actually visit with Mother. We begin to have our own conversations, to which she can't contribute, and then I go away wondering if I have really been there.

I went back up this past Tuesday and just as I was arriving, I met Marie, who was also coming for a visit. It was good to have her there, since it enabled me to take Mother out for ice cream. It was very hot, and between the heat and the concerns over Mother's limited mobility, I was thinking that going out was not going to be in the cards. But Marie is braver and we decided that since the ice cream place had an area where we could sit indoors, that we could get her there.

We found her in her room, in two layers of clothes and lying on the bed underneath a blanket. It was close to 100 degrees outside. We went into the room, but she wasn't sleeping...just lying there, thinking whatever thoughts a person who can't think thinks. We asked if she wanted to go for ice cream, and she didn't waste much time agreeing.

So we changed her clothes, found a pair of shoes, helped her to stand up, and guided her to the front. While last summer she only needed help buckling her seatbelt, now she needs lots of help getting in and out of the car...especially since I have a small SUV. Marie assured me that she had gotten Mother in and out of her Forester, and sure enough, we got her into my Toyota RAV4. Marie is good at this.

It's hard to say whether she can't get around because it hurts or because her body is just too stiff to move. Mother has always had a very high pain threshold, so it's difficult to know if she is in pain. If Mother ever actually says something hurts, you had better call an ambulance...it's bad. She offered no complaints...actually not much in the way of words at all.

But she did eat 8 ounces of coffee ice cream. And she read the signs at the shop.

Once the ice cream was consumed, we reversed the process and took her back. We got upstairs and were greeted by a resident I didn't know who said very pointedly, "Hello." Marie and I said hello. It apparently didn't count. The woman said to us more loudly and sternly, "Hello!" We said hello again. Somewhat agitated the woman thrust out her hand at us. "Hello!!" she said again, like a school marm who simply wasn't accepting 2+2=5 as an answer. We each shook her hand and said hello. "Thank you so kindly," she said, and wandered off.

But the bad news is that Frances has died. Of course privacy laws prohibit my knowing the details, but I felt very sad. She was such a sweetheart and so very kind to Mother. Russell must feel really lost.

An activity was just breaking up in the Great Room, so we left Mother there, visiting with a few of the ladies who were still seated around a table.

I am not at all sure that she knew me.

Visiting becomes ever more difficult. It's hard to take her somewhere. She's past the point of being able to do the puzzles we did at first. There's no real conversation to be had. You can't really "do" and you can't really "talk," so you have to find a way to simply "be" in the same place at the same time. Our family was never good at that even under the best of circumstances. We worked together on a project, played a game, or had conversation. Maybe that's part of the lesson...to learn "being" instead of "doing." And it may not just be the lesson of those of us who visit. Perhaps it is also one of the lessons of the disease for her.

It is a lesson those who work in such facilities must grasp in order to be good at what they do. The residents are of sacred worth...even though they are only able to "be." They aren't of any use, except in an abstract sort of way, and in this society that defines the worth of everything by its usefulness, perhaps that's not such a bad lesson to learn.