The other night at Casa Bella I saw a woman who has been a regular the entire time we have been going to their music nights. For the first time she was without her husband. I saw her afterward and asked about him. She told me he is now in memory care. I was surprised. I’ve seen him about once a month for the past four or five years. How could I have missed that?
By now, I should know. It’s not really hard at all. Even at this late stage, Kate can get along quite well in short-term social encounters without anyone’s suspecting. The nature of most social interactions is so superficial that it’s easy to miss a “disability” that has so little or no visible signs.
As Kate’s husband, I have far more opportunity to observe the many signs that others can’t see. That makes me think of something that can be hard for others to understand. That is the surprising way in which she can switch from “knowing” to “not knowing.” One of the best examples is the issue of her “knowing” me. In a couple of months it will be a year since she first asked my name. It would easy to think that she had “forgotten” my name, that it was completey forgotten it. That wasn’t so, and it isn’t so with other memory problems.
All of us have similar experiences. We forget one moment, but we remember in another. We don’t think much about it. I believe that is why people don’t ordinarily think they may have dementia in the early stages. As time passes, the memory problems become more frequent and enduring. That’s when they take on new meaning, especially for the person herself and those close to her.
My experience with Kate has made me realize how little I knew about my mother’s dementia. I was with her a lot, but not nearly enough to understand the full extent of her problems. My father said very little. That meant I was largely ignorant of what was really going on.
Living with Alzheimer’s through Kate has opened my eyes to many things. One of those is how memory comes and goes although the trajectory is always in the direction of less ability to remember. Kate is at a stage when her memory doesn’t usually last more than a few seconds. Even then, her memory is inconsistent. What I mean is that at one moment she can remember a name. In another, she forgets it, and quickly thereafter remembers again.
Last night she put down her iPad. Suspecting that she might have gotten frustrated with it, I asked if she would like to look at one of her family photo albums. She liked the idea, and I brought her the “Big Sister Album.”
As I handed it to her, she noticed the cover photo of her and her brother. She loves that photo and almost always comments on their smiles. This time she didn’t say anything. She took a moment to look at it. Many times she recognizes both children. Other times she doesn’t. She said, “Is that me?” I told her it was. She pointed to her brother and said, “Who’s that?” I told her it was her brother Ken. Then she looked at the photo more carefully and did comment on the smiles. She was hooked.
I was about to take a shower and thought this would occupy her until I got out. I discovered, however, that she had difficulty reading the text and couldn’t recognize her family. She wanted me to help her. It wasn’t a complete failure to recognize her parents, her brother, or grandmother. Sometimes she did. Sometimes she didn’t. That could relate to the photos themselves. Some are sharper than others, and sometimes people can look a little different from different angles or when they are in different contexts.
In this case, I don’t know exactly why. I do know that her vision is affected by her Alzheimer’s. I also suspect that her memory of faces is becoming more limited as well. I also know that the loss of her rational ability prevents her from making connections that would help her guess the people in many of the photos. You and I would understand that the odds are pretty high that they would be of her parents, her grandmother, her brother, or herself. She doesn’t appear to recognize that.
I did get in a quick shower, but we spent about forty minutes going through the album. I recorded about five minutes of that time. Here are a few examples.
Richard: “That is your Nana, and look who she’s with.”
Richard: (Pointing to Ken) “Who else is there?”
Kate: “And who’s that?”
Richard: “That’s Ken.”
Kate: (Very excited.) “That’s Ken? My brother.”
Richard: “Yes, your brother.”
Kate: (Chuckles with excitement like a little child)
Richard: “Now who do you think these three are?”
Kate: “I don’t know.”
Richard: “Those are you.”
Kate: (pointing) “That’s me?”
Richard: “Each one of those is you.”
Kate: “That one too?”
Richard: “That’s you on a tricycle.”
A Page Later
Kate: “Oooh. That’s wonderful.”
Richard: “Who do you think those people are?”
Kate: “My daddy and me. . . Look each one is happy, especially me.”
We moved further through the book. We saw many more pictures of her father and her mother. Early on, she asked me their names. Each time she would repeat them. Sometimes the very next picture was her father. She would say, “Who’s that?” I would tell her, and she would ask, “What’s his name?” I would tell her, and we would go to the next picture and repeat the same questions. Not always, but sometimes. It makes me wonder what triggers memory and what causes it to disappear as rapidly as it appeared. That’s something I’ll probably never know.
I see these kind of things a good portion of every day. The servers we see in restaurants or the friends we bump into or almost anyone else we encounter on a daily basis would never know. In fact, there is much I don’t know myself. For example, I wonder how long Kate was struggling with my name before she finally asked me. I suspect she might have had some hesitation the first time. Now it is as natural to ask her name or mine as breathing air.
I believe there is something else captured in the conversation above. That is how happy she is. It is obviously saddening to see her stumble over names, but the excitement she experiences as she goes through her album offsets the sadness. I hope she is able to maintain this spirit for a long time. I know that I’m going to do everything I can to help.