What’s Going On?

Friends sometimes wonder about Kate and me when my posts are less frequent than usual. Most of the time it’s not because something is seriously wrong, but I often find myself occupied with other aspects of life that need my attention. Less frequent posts also reflect the changes that have accompanied Kate’s decline and the pandemic. Our world is smaller now than it was before, and we have settled into a routine lifestyle that leaves me with fewer new things to report. Here’s a quick update.

After being on a plateau most of the year with respect to her Alzheimer’s, Kate is exhibiting signs of another downward shift. I’ve mentioned some, perhaps most, of them in previous posts, but, in this one, I want to stress the point that she is falling deeper into a stage most people think of when they hear someone has Alzheimer’s or another form of dementia.

One symptom that carries a lot of weight for me is her increasing failure to recognize me, that is, in a cognitive or rational sense. It has been several years since she began to forget my name or that I am her husband. For a long time, that has come and gone from day to day or moment to moment. It is now a much more common occurrence.

The same is true for her own name or anything about herself and her family. In fact, the saddist moment I’ve had with her recently was when she was in a fog the other morning and asked, “Do I have a name?” I said, “Yes, you have a beautiful name, Kate, and your mother and daddy gave it to you.

On this occasion, I would say she was puzzled, not frightened, over her mind’s being blank. This now seems to be the best way to describe her morning “fog” whereas I used to say she was frightened, disturbed, or bothered.  

More often than not, she is still comfortable with me when these moments occur. She trusts me, likes me, and certainly feels dependent on me. When she wants me, she calls me by name or may ask the caregiver “Where’s my husband?” Sometimes it’s just a reflexive response. The other night, for example, we had an extended conversation in bed. She was very talkative, but delusional. Several times she referred to me by name.

On the other hand, there are more times when she doesn’t recognize me and asks, “Who are you?” She is often surprised when I tell her I am her husband. Sometimes she accepts the news without any emotion or receives it positively. As with other questions she asks, she sometimes says, “Who are you?” several times in not quite rapid-fire sequences.

I take these changes along with others like being less cheerful and her increasing aphasia to be critical markers of a new stage of her decline. More often than not, she doesn’t speak to people who speak to her. It saddens me to see this and recognize there is no way I can stop the progression of this disease that robs her of more and more aspects of her personality. Yet, we still enjoy life and each other, and I continue to see signs of the same Kate I met more than sixty years ago. It’s been more than 15 or 16 years since we noticed the first signs of her dementia. I feel sure she is getting along better at this stage than many, if not most, people “Living with Alzheimer’s,” and I am grateful.