Yesterday morning, I replied to a Twitter friend who posted the following message.
Today is my fourth year anniversary since my diagnosis of Posterior Cortical Atrophy which is a variant of Alzheimer’s Disease. It affects my vision more than memory. In 4 years I’ve done really well, achieved a lot and still going strong. Power to me.
I congratulated her, and she sent the following reply.
Thank you, Richard. People think it’s strange for me to celebrate each anniversary, but it’s my way of coping and surviving.
I admire the way she is coping with her disease. It doesn’t mean she is free of all the frustrations that accompany dementia, but she is working to make the best of it. I have found that approach personally beneficial and have tried to capture the joy that Kate and I experience. There are times when I feel I may not fully convey the reality of the rough patches we also experience, and I want to make clear that we are now facing the most significant challenges that have occurred since her diagnosis. I have mentioned each of them at sometime in the past, but all of them are becoming more common.
NOTE: I completed this part of the post just before 11:00 yesterday morning when I went to the bedroom to waken Kate for lunch. My intention was to finish it with examples of some of the rough spots. Our experience yesterday led me to use it as an example. I wrote about that in the following section when we returned home from lunch about 2:30.
2019-12-18 (3:00 p.m. EST)
Another Recovery Following a Rough Start
It’s been about a year and a half since Kate first showed signs of anxiety or panic related to not knowing where she is, who she is, or what to do. Thus far I have been able to relieve her, but each time this happens I wonder how long I will be successful. From the beginning, simply trying to comfort her, rather than giving her information, has seemed to be the key factor in each recovery.
This morning (now yesterday) was no exception. About 10:45, I put on some gentle Christmas music to wake her. Fifteen minutes later, I went in to see if she might be ready to get up. She was awake, but it didn’t take long to discover she was confused and very uneasy. She wasn’t cheerful, and she didn’t greet me at all. I told her I would like to take her to lunch. She shook her head to say no. When I asked if I could help her, she gave me the same response.
I told her she looked frightened and asked if she were. She nodded affirmatively. I told her I would like to help her. I could tell that she didn’t recognize me and decided not to push her but just talk to her very gently. It wasn’t long before I said, “I don’t think you remember me.” She confirmed that. Then I gave her my name and told her I had I had known her a long time and could help her with any questions. I also asked if she felt she could trust me. She said yes. I said, “Other times when you have felt this way, you have felt better after you got up and dressed.” She wasn’t ready. I asked if she would like me to read something. She did, and I got Charlotte’s Web and read a couple of chapters. When I finished, I got up from my chair. Her eyes were open, and she looked at me. I spoke to her. She didn’t respond at all. She looked very strange, like she was asleep with her eyes open. Then her eyes closed, and she was asleep. This was the first time I had ever seen her like this. I let her sleep a little longer and then went back to wake her. When I returned, I asked if she thought she could get up for lunch. She asked about her clothes. I told her I had them ready for her.
She was still uneasy as she got out of bed. She didn’t want my help although she did want to hold my hand as we walked to the bathroom. She took a long time brushing her teeth. She got irritated with me when I tried to help her. I pulled back and let her take her time. She didn’t want help dressing and was irritated when I tried to help. I apologized for pushing her. I feel sure she didn’t recognize me and felt uneasy about dressing in front of me. Ultimately, she needed my help and accepted it; however, I didn’t take over. I let her do as much as she could.
When she was dressed and walked into the family room, her mood quickly changed. She stopped to look at the poinsettias and the back yard and commented on how beautiful things were. We walked to the kitchen where she took her morning meds. She was just fine and has remained that way since. We had a nice lunch, and she has rested a good bit since we returned home. I am hopeful that the evening will go well, but I know that we may not be so fortunate in days ahead. In the meantime, I am happy that we experienced a good recovery today.
NOTE: I finished the section above about 3:45. I started the following part last night at 9:20 and finished this morning.
At 4:30, I saw that Kate had opened her eyes. She seemed to have rested comfortably for almost two hours. I know she didn’t sleep that long because I saw her open her eyes and look around several times and spoke with her a couple of times. This time I asked her if she would like me to read something to her. She wasn’t enthusiastic and said, “What would you read?” I mentioned The Velveteen Rabbit, but she wasn’t interested. I mentioned Charlotte’s Web, and she accepted that. I read about twenty minutes. She didn’t respond at all. I went over to her chair and kneeled down beside her and asked if she would like me to take her to dinner. I encountered the same experience we had had that morning. Her eyes were open, but she didn’t respond at all. Again, it looked like she was sleeping with her eyes open. Shortly thereafter, her eyes closed. I waited a few minutes. Then I asked if she would like to go to dinner. She asked me to go without her. I continued to talk softly to her and told her that I didn’t want to eat without her. She agreed to go.
I was sure by the way she related to me that she didn’t know who I was. Before we left, she confirmed my suspicions when she asked who I was. On the way to dinner she asked my name. When I told her, she said, “Nice to meet you, Richard. Do you know my name?” After I told her, she tried to repeat it and failed. She asked me again. She tried again. We went through this several times, and she ended up saying her name about three times in a row and expressing confidence that she now might remember. We had a pleasant time, but she knew neither my name nor our relationship and was a little more formal or distant that usual.
On the way home, she asked where we were going. I told her we were going home. She wanted to know what that meant. When I told her we lived in the same house, she said, “But where will you be?” I told her we would be in the same bedroom. She was very uncomfortable with that. I promised her that I would not create a problem and that we had lived together a long time. She still seemed a bit puzzled.
When we got home, she didn’t recognize the house. Once inside, however, she must have felt a little more comfortable because she started to behave the way she always does. I am not sure that she knew me as her husband, but she was perfectly comfortable as I got her ready for bed. It could have been that she was totally dependent on me as to what she should do and simply had to trust me.
I stayed up another hour after she went to bed. When I got in bed, she was glad. She was perfectly comfortable with me. She was like she is any other night. Did she know me? I don’t know if she remembered my name or our relationship. We had just finished a full day during which she didn’t. That is a new record.
The good news is that the day ended on a happy note and that she was as comfortable with me as she has ever been. Despite challenges like these, we focus heavily on the good times we have, and I intend for us to continue doing so as long as we can. At the same time, I can’t deny the reality of Alzheimer’s. It takes its greatest toll on Kate, but that, in turn, has an impact on me. I remain optimistic about how I will adapt as the disease progresses, but the most difficult part remains watching her lose so much of her ability to survive on her own. It is especially hard in those moments when she suffers as she did off and on yesterday.