Ups and Downs While Living with Alzheimer’s

My last post was upbeat, and for very good reasons. Kate had had a string of very good days. I should be clear that her Alzheimer’s has not improved. Her memory is no better than it was. Nor is her aphasia. She still experiences delusions that sometimes cause her to be afraid or annoyed, and sometimes she has periods when she does not recognize me at all.

The big change was in the comfort she feels when we go about our daily routine. That includes getting her dressed and out of bed each day as well as the reverse process that occurs every evening. She is no longer physically or verbally combative with her caregivers and me during these moments. She is also less vocal when we take her across minor bumps in the hallways when we go for ice cream and dinner.

Overall, she’s been happier, and less afraid of everything that has bothered her in the past. The good times continued until two days ago. It may have started the afternoon before when she had an unusually grouchy spell and yelled at the caregiver and me. We got through that and dinner without any serious problems, but she was not as cheerful with friends we met during this time.

I wasn’t sure what we might be in for that night. Fortunately, she began to calm down as we got her ready for bed. It turned out we had a very good night. I think she was worn out.

The next day, she was awake around 9:00. It was one of those times when she didn’t recognize me at all. She was also obsessively talkative. As in the past, what she said was rooted in delusions and hallucinations. I thought it would help if I got in bed beside her and tried to comfort her. She wanted me to leave.

I left for a short time. When I returned, I turned on some music that I hoped would be soothing. I got in bed beside her with my laptop and began to check email. A few minutes later, she apparently recognized me because she reached out to take my hand. I was with her the rest of the morning. During that time, she talked continuously, often pointing to places in the room for me to see people or things that were not there.

I was with her when the caregiver arrived shortly after noon. I briefed her on the situation and went downstairs for lunch. When I returned, the caregiver had fed her and put her in her recliner. She was still talking. I tried to calm her for about thirty minutes before she had a doctor’s appointment at 2:00. She relaxed somewhat, but she didn’t stop talking.

When the doctor and his nurse arrived, I answered the door and stepped outside to explain what was going on and that Kate was very different than she had been for their previous appointments. Then we went inside where we went through the regular routine as well as we could while she talked. She never responded to them verbally.

The doctor asked if I had given her a sedative (Seroquel). I told him I hadn’t but would have if it were bedtime. I indicated my preference was to make an effort to relax her and play music that I know she likes. I thought, however, that it would be a night for the sedative.

After they left, I spent almost an hour on my knees beside her in the recliner. I listened to her and responded to her in a very calm manner. She became somewhat more relaxed but was far from normal.

The caregiver gave her an afternoon snack. She stop talking for a while but started again when she was finished. She was somewhat more relaxed. I experimented with a variety of music including “Bushel and a Peck” and “If You’re Happy and You Know It.” She continued to relax, and I asked if she would like some ice cream. She said she would, and we prepared to leave. As we went down the hall to the elevator, she became agitated. We returned to the apartment. I also chose to eat in the apartment rather than go to the dining room for dinner.

She calmed down for dinner. After that we still had time to sit on the balcony for a while before the caregiver left, but I thought it was better to get her into bed. That turned out to be a good idea. She was worn out and soon went to sleep.

She slept for about an hour while I watched the evening news. When she woke up, we watched two symphonies on YouTube. She was at ease the entire time. We talked very little, but it was clear that she was all right. It was a happy ending to a trying day.

Yesterday, she was very tired. We didn’t get ice cream, but she was alert for dinner. When we returned to the apartment, she went right to sleep and is still sleeping. We had a very good run for three weeks. I’m grateful for that and suspect we won’t have a repeat. I am, however, confident that we will have many more special moments in the days ahead.