Every day, people ask, “How is Kate?” That’s a question I’ve been asked since I became open about her diagnosis 4-5 years ago. Because I’m around people much more since our move, I hear it more often these days. For years, I said, “Remarkably well.” For the past couple of years, I’ve been more likely to say things like, “She’s having a good day.” “She’s happy.” “Our relationship is as strong as ever.” Sometimes I say, “She had a rough day yesterday.” Each of the things is true, but it never tells the full story.
Something similar is true about this blog. Over time, my posts convey a pretty good picture of how she is doing, but reading only a few posts can be misleading. For that reason, I would like to give you a better sense of how she is at this last stage of her Alzheimer’s.
I have focused heavily on Kate’s recovery from
COVID since Thanksgiving. She had only one problem, but that was a significant
one. She was frightened by everything that involved moving her. She has made slow,
but steady progress. The fact that we are able to get her up every day and
sometimes take her out of the apartment are the best indications of that.
That doesn’t come without any problems. She
still protests a little when we change her. She is also bothered by minor bumps
when she is in her wheelchair. For example, she feels even slight changes in
elevation as we roll her from the floor to the carpet and back again and responds
with an audible protest. Getting her into and out of bed with the lift is going
much better as is getting into and out of a chair. Her responses also vary from
day to day.
Our visits to the café where we get her a milk
shake or ice cream have been especially good times. It’s not the ice cream that
is the major benefit. She, the caregiver and I enjoy spending time in the
seating area that looks onto a courtyard. It is relaxing for each of us. I also
like the fact that it gives Kate the opportunity to see other residents. Not
every interaction goes the way I would like, but I think it is good for her.
A couple of days ago, for the first time, she became belligerent when we were about to leave the café. She yelled and screamed when we tried to get her feet on the footrests of her wheelchair. I’m not sure why, but she doesn’t like using them. It is one of the things that frighten or bother her. Despite this, she is getting better. Two days this week, she didn’t protest at all and kept her feet on the footrests the entire time.
While she’s recovering from the trauma of
COVID, she seems to be on a plateau with respect to her Alzheimer’s. She
doesn’t seem very different than she was a year ago. In three ways, I believe
she has declined. She seems to have fewer cheerful moments than in the past, although
she periodically has very cheerful and talkative periods that can last several
When these moments occur, they are usually
rooted in a delusion in which she refers to people and situations that are not
real. Her caregivers and I converse with her as though she is making perfectly
good sense. We know that she is happy, and we are glad to see it. This
experience is especially common around the dinner hour. She almost always
enjoys her food and expresses it joyfully. In between these cheerful moments,
she has longer periods in which she is more passive or withdrawn than she used
to be. Thankfully, she is happy most of the time. Even when she is sleeping or
resting, I often notice that she has a smile on her face.
Following a longtime pattern, she is generally
“slow” in the morning and sometimes confused but improves throughout the day. She
is at her best after 2:00 or 3:00 in the afternoon. This usually lasts until
she goes to sleep.
Another change involves Kate’s interest in her
photo books and her family. Her mother has always held a special place in her
heart. Now, Kate expresses little interest in her mother’s pictures or even
hearing about her. Similarly, she displays less interest in her children and
grandchildren. The exception is when she talks with them by phone. Sometimes,
she responds as warmly as ever.
She is also less comfortable with people who drop by to see us or those she meets when we take her out. She often fails to say anything at all. Sometimes she surprises me. She did that earlier this week when the caregiver and I took her to get a milkshake. A church friend stopped at our table and spoke with us a few minutes. Kate didn’t say a word even when the person spoke directly to her and asked a question. When our friend said goodbye, Kate responded to her as warmly as if the two of them had been talking for ten minutes.
There is one other change that is particularly
significant to me. She has more moments when I am not familiar to her. It’s not
that she doesn’t remember my name or that I am her husband. I feel sure that
happens more than I know. The difference now is there are times when she responds
to me like I am a stranger. Sometimes she doesn’t seem bothered by that and
asks in a friendly voice, “Who are you?” That happened last night as we were
enjoying a series of YouTube videos featuring Peter, Paul, and Mary. Several
times in succession, she asked who I was. Each time I answered she repeated her
question. Other times, she seems disturbed and doesn’t say anything or respond
to my questions.
In either case, I tell her my name and that we
have been together since college. I mention our falling in love, getting
married, having children, and that we’ve been happily married fifty-eight
years. This usually sparks a sense of recognition. Even when it doesn’t, she seems
We had an experience like that this morning. After
telling her who I am, she was still uncomfortable talking with me. I reached
for The Velveteen Rabbit on the end table and read it to her. She kept
her eyes closed the entire time and didn’t respond in any way. At the end, I
said, “I like that story. Thank you for letting me read it. I hope you liked it
too.” She looked as though she might be asleep and didn’t say anything, but she
nodded her head. She was going back to sleep, something not unexpected as she
had been awake 2-3 hours earlier than usual. Did she “know” me then? I don’t
know, but she was relaxed.
Except for this change in recognizing me, our
relationship remains strong. She is glad to see me when I return after leaving
her with the caregiver. Sometimes she is very expressive and says, “I’m so glad
you’re here.” She still calls my name when she needs something or during times
she when the caregiver is doing something she doesn’t like. Most of the time,
she also responds rather quickly when I try to calm her as the caregiver
changes her. In addition, she frequently grabs my hand in moments when she
feels threatened (bothered?) by the caregiver’s efforts to change her or move
her in any way.
Several other good things remain the same. Music
is still an important part of our lives. At times when Kate is quiet, her caregivers
and I often notice that she is moving her head or feet in rhythm with the
music. I don’t read The Velveteen Rabbit to her as often as I used to,
but I am pleased that she continues to enjoy it.
Most important of all, to me at least and I
think to Kate, is that the best time of our day is after the caregivers leave
each night. We both relax and enjoy being together. That is something I hope we
can hold onto for some time to come.