At Stage 7 of Alzheimer’s, is there really any joy for caregivers and the ones for whom they care?

My memory of the last stage of my mother’s dementia has faded significantly. One thing I remember is that, except for his Kiwanis meetings, my dad still took her with him whenever he went out. That was the only time he sought help. He dropped her off at a senior day care for four hours to attend his meeting and shop for groceries.

I look back with amazement as I think of those days. At the time, I wondered why he did it. He was eighty-eight, and she was completely dependent on a wheelchair the last two or three years. In order to get her from their apartment (that fortunately was on the ground level) to the car, he had to roll the wheelchair 25-30 feet over grass. Then he got her into the front seat of the car, folded the wheelchair, and loaded it in the trunk of his car. From my personal experience, this was not a simple task. Yet I never heard him utter the first word of complaint. They had been married 70 years when she died. He was just expressing his love for her in the only way he knew how at that point, and he did it joyfully.

Now that Kate is closer to that stage of her Alzheimer’s, I have a greater sense of what sustained him. He could see what I didn’t. There is no doubt to me now that he could find joy in their relationship when it appeared to me that the joy had long since passed.

I believe Kate and I have some time left before she is at that same point, but I can already see that joy is indeed possible very late in this disease. I am sure that doesn’t happen for everyone. As I have said before, we are very fortunate. My point is that it can happen and should be something for which those of us living with Alzheimer’s can hope.

Moments of joy may not come as often as they did before. They may be short-lived.  They do occur for us, however. We had another of those “Happy/Joyful Moments” at lunch yesterday. As I reported in my previous post, she didn’t know my name or our relationship when she got up to go to the bathroom in the morning. I’m not sure whether she did or didn’t later when I got her up for lunch. There were times during lunch when I know she didn’t. Neither did she remember her own name. As earlier that morning, she was quite at ease with me. When she asked my name and relationship, she accepted it as naturally as she did when she pointed to her salad and asked, “What is that?”

She was very talkative. Interestingly, we didn’t gravitate to our usual conversations about family and marriage. She asked questions about the restaurant, the food, and the staff. It was unusually quiet when we arrived. Only one other table was occupied. She said, “I wonder if <using her hand because she couldn’t think of the word for servers> like it better when it is quiet like this or when it is ‘you know’ <again using her hand and groping for the word ‘busy.’>

It is always fascinating when she doesn’t “know” me but also talks about my personality quirks. She kidded me a lot during lunch, and none of the kidding had a bitter edge to it. She was having fun, and I loved it.

Because it was less busy, we got more attention from the staff. We had several conversations with our server. Another person who often serves us stopped by our table to speak. The manager also stopped by for a brief visit. During our conversation with the manager, I commented on how much I had liked the broccolini salad with a little tomato and feta cheese. Kate didn’t like it because she doesn’t like the crispiness of raw vegetables. As the manager was about to walk away, Kate said, “And don’t give me any of that anymore.” She didn’t sound offensive. It was more like a little child simply expressing her distaste for the salad, something I had already explained to the manager.

She also said or did a couple of other things that I got a kick out of. She now frequently mixes her words and sometimes says something that is just the opposite of what she meant or is a homonym for the word she wanted. For the first time, she did this with a gesture instead of a word. She dropped a piece of cheese on the table, picked it up with her hands, and ate it. She gave me a devilish smile, put her hand over my mouth (instead of my eyes) and said, “You didn’t see that.”

A little later we had dessert. When the server brought it to the table, she kidded me, saying, “Didn’t you want one too?” She took a bite or two. Then I said, “You’re going to like that.” She said sternly, “I’m already enjoying it.” I said, “I should expect that from an English teacher. You want to make sure I’m using the correct tense.” For some reason, she thought that was funny and began to laugh. I guess that was because it was something she would usually say and not “me,” Oops, “I.” <G>

Oh, yes, the meal was also very good, but that wasn’t what gave us so much pleasure. Being together, and with other people, is what made lunch special. We had a good time.

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