After lunch this past Saturday, Kate went to Lavender, her favorite dress shop. I stayed at home. As I was on the way to see Dad, I got a call from her. She asked where I was and sounded disappointed when I said I was on I-77 almost to Dad’s nursing facility. I asked what she needed, and she said she couldn’t find her car. I asked her a number of questions trying to help her remember but took an exit and went to meet her at my office. When I was a couple of blocks from Lavender’s, I saw her car in the parking lot of a restaurant. When I picked her up, I told her I had good news that I had found the car. It was only then that she recalled that she had gone to a shop down the street looking at clothing to take on our trip to Africa. She was clearly discouraged by this lapse.
Although I started this document with Kate in mind, I am going to make an observation regarding Dad as well. In many respects, his condition plays a significant role in my relationship with Kate and how she feels about things. For quite a while I have gotten phone calls from Dad in the middle of the night. I am not alone. He sometimes calls my brother as well as several of his friends. He told me that he had called one of his buddies just after midnight last week.
At any rate, Dad called me at 2:33 yesterday morning. He told me that he was in West Palm Beach at the Shrine Club. I suggested that perhaps he had had a dream, but he couldn’t seem to hear well which is pretty normal. He placed 3 calls to me around 5:25. Each time he left a voicemail message saying that I didn’t need to come get him that he was at his nursing home.
On at least 2 occasions, he has called to let me know that he thought this was the end, that he was completely blind, and that he had had a wonderful life and wanted to thank me. Each time I have tried to reassure him and told him I was going to plan on seeing him later in the day. When I finally see him after these calls, he always remembers making them and even seems to take some pleasure in them.
For Kate, I am sure this causes some pain as well as amusement. I know she must be thinking of what she is going to be like as her AD progresses.
This Wednesday it will have been 8 months since our meeting with Dr. Reasoner when she diagnosed Kate with AD. We have both adapted well, although we continue to have our moments of melancholy. I am convinced, and I believe Kate is as well, that she is declining more rapidly than we had hoped given that Dr. Reasoner described her condition as early onset AD. There are little things like operating the TV that seem to be more confusing than in the past. She has to ask me to help her with many routine tasks. Yesterday, she asked me how to operate the TV in our bedroom with the new DVD player that permits us to stream movies from Netflix. I think she would have had trouble with that without the AD. Then after I had shown her, she asked if I would show her how to turn on the TV in her office. Before I could do that she had done it herself. I can’t recall the exact conversation but in the latter part of the process of showing her how to operate the TV (which I know she will not remember) she said, “Well, remember I do have Alzheimer’s.” I said that I know but sometimes forget. She said, “Most of the time I do too.”
There are 2 other recent illustrations of her asking for help. She misplaced her shovel someplace outside and asked me to help her find it. We walked around the flower beds in the backyard. In a moment, she saw the shovel right after I had walked by it and didn’t notice it.
Yesterday afternoon she asked me if I would help her find a new plant that she had purchased on Saturday but couldn’t remember where she planted it. I walked around the flower beds again and found it. A little later she asked me where the plant was. I told her, and she remembered.
These are the kinds of things that don’t get noticed by most people since normal interactions involve such routine things that she can do almost reflexively. I think this is fortunate because I don’t want a lot of people to know about her condition, and, as I have mentioned before, she doesn’t either.
The fact that her deterioration over the past 8 months is noticeable makes me concerned about the future — for example, a trip to New Zealand in the winter of 2013. I am beginning to think that we will want to make the most of 2012. I don’t really think we will have to stop traveling after 2012, but it will be different if her condition continues to decline at the present rate.
I do find that I feel a greater need to be with her and to enjoy our time together. We both enjoy snuggling in bed and taking moments together with a glass of wine out on the patio. Without saying it, we both want to make the most of the time we have remaining. I am hoping it is longer than I am presently thinking. I recall a friend’s saying a good while after his wife had been diagnosed with AD that they were able to enjoy conversations together.
Last week we took our granddaughter back to Nashville to catch her plane to Houston. We both felt we had had a great visit with her. At the same time we recognized that we focus so much on her and the other grandchildren while they are here, that we get behind on other things. We stopped for dinner on the way home. We talked about our aging and how much we value our time together. We wonder how much longer we will be able to do the one-week vacation with each grandchild.
This past Saturday I selected 600 slides to send to ScanCafe.com for them to scan. I am trying to convert our slides to digital. As I was going through them, I became very nostalgic. I found myself reflecting on our time together in Madison, the move to Raleigh, and Jesse’s birth. Those were such special times for us. I couldn’t help feeling sad as I thought about the path on which we are now headed. This rekindled my more intense feelings about making the most of our time together in the weeks surrounding Kate’s diagnosis in January.
I am also noticing what I believe is a continuing decline in her condition. It is not great, but it seems like there are so many little things that occur that wouldn’t happen if she did not have AD. I am in a sad mood. This comes as I am also seeing a decline in Dad’s condition and a worsening of business conditions. It is a stressful time.
Several things have happened this morning and the past several days that make me think more about Kate’s condition and progress. As usual, we went to church separately and were to meet in the sanctuary. When she didn’t show up, I thought she must have gotten detained with someone after Sunday school and ended up sitting in the back of the sanctuary. When we drove to lunch after church, she said she had had one of those experiences in which the brain just didn’t work. It turned out that she had entered the sanctuary on the left side rather than the right side where we (I) always sit. She looked along the rows in the area where she thought I would be and finally took a seat by herself. It was only later (I think after the service) that she realized she had gone to the wrong place and that I was sitting right where I always do.
The other events involve updates on several people we know who have dementia. At our recent (this past Wed) meeting of the executive committee of the music club, someone asked about one of our members who has dementia. The word was that she has good and bad days. She and her husband have moved to a continuing care facility. This has been a problem for him because his photo studio is in their house and he is still active in his photography.
In addition, in Sunday school this morning one of our members reported that her husband will be staying permanently at the nursing facility where he has been in rehab. Although he has recovered physically from recent surgery, it has been a setback mentally. He was diagnosed with dementia 7 years ago. It made me think about Kate’s progress. Seven years would put her at 77 which is much sooner than I care to think although I have feared from the first that she might move along more quickly than we have wanted to believe.
Another member of our Sunday school class was there this morning. She seemed to have progressed further in her dementia than I had noticed in the past. She gave me a gentle but big hug and told me she loved me. It breaks my heart to see her and to imagine where Kate will be in a few years.
In this morning’s paper I read an obituary of an old acquaintance who would have been my age. Donations options were given, one that included a day care facility, and I thought he might have had AD or dementia. I found out that is correct.
On occasion I mention to Kate about someone’s having AD, but most often I find myself unwilling to say anything because I don’t want to add any anxiety to that which I know she already feels.
January 25, 2011 (6:07 a.m.)
I woke up early this morning (around 4:00 am) . I don’t know that this relates to Kate’s diagnosis, but it is consistent with problem sleeping the week before her appointment with Dr. Reasoner.
We both got through the day all right. I was busy with things at the office although I did find my mind wandering back to Kate. I checked online to locate support groups for her. I found a number, but did not identify just the right one.
I also looked up life expectancy for someone diagnosed with Alzheimer’s. I didn’t like the results. Results showed somewhere between 4.5 and 8.5 years. That is a contrast with the figure of 12 years that we got from Dr. Reasoner.
Kate specifically told me she got a long all right yesterday. She took a positive step to investigate a yoga class that she has been considering. She is also going with me to the Y breakfast this morning.
January 25, 2011 (12:10 p.m.)
I have found myself with a strong feeling that I need to be with Kate more. I have been thinking of the possibility of limited time to enjoy ourselves “the way they are” rather than “the way they will be” in the future. She went to the Y breakfast this morning, but I have tried to reach her about having lunch together. She hasn’t been at home and hasn’t answered her phone or text messages. She could possibly be at church where the connection is not so good although I thought she was almost fully disconnected from her responsibilities there.
I also keep thinking of things that she would like to do while she is able to fully appreciate them: seeing the grandchildren, traveling, visiting with friends, etc. I am also thinking about developing a To Do list of things we need to do: putting both our names on all bank accounts, checking our wills to see that they are in order, getting rid of lots of things in the house that we don’t need and that Kate has expressed an interest in doing but I haven’t, deciding whether Kate would be better off staying in the house as long as absolutely possible or moving to a continuing care community that could handle our changing needs.
It’s been a good day. That doesn’t mean either of us hasn’t dwelt on the news we received from Dr. Reasoner. One of the differences I notice is that we are more open with each other about the news. Prior to knowing, neither of us spoke about it except in moments when some instance of Kate’s loss of memory bothered her or me or both of us. It is as though instantly I am attributing all of her issues to the diagnosis.
She has brought up the fact that she is feeling all right, but also expressing that she is feeling a range of emotions starting with anger, sadness, etc. She did not go to church this morning, something that is not unusual since she retired from the church library in May. When I go home, we went to Casa Bonita for lunch. While there, she mentioned that she might want to check out support groups for Alzheimer’s patients. I suggested she look online and that that would offer her more anonymity.
After we got home I got online to look for options and found several. I did not identify one in particular that would be appropriate for her. I did, however, get a different slant on her condition. I believe, and I know she does as well, that Dr. Reasoner said something about “early onset Alzheimer’s.” From what I read today she must have meant early stage Alzheimer’s. Early onset is for people who are under 65. I believe this is not early onset and am now concerned that this may mean there is a shorter period of time before we face significant changes that will affect us. Up until getting this information, we have both been thinking that we will have quite a few good years ahead. Now I am wondering if we might not notice changes that affect us within the next 5 years.
We both have talked about the importance of her being active including participating in exercise. I am going to check on yoga classes near the house where she has had some interest. I am also thinking that we might start eating lunch together more frequently than in the past. We also talked today about her avoiding situations that are especially frustrating. That would involve preparing meals for company. She recalls being especially frustrated last summer when one of my friends was in town to see Dad.