Earlier today I mentioned an experience at lunch when she didn’t recall that her cousin Chester had died and that we had attended his funeral two days ago. That is a rather dramatic experience that she would have recalled several years ago. I am still somewhat surprised that it didn’t ring a bell at lunch.
Before going to dinner this evening, I told her again about the pictures I had sent her Ken and Virginia as well as our son. She said, “You should also send them to Chester.” I told her that he had died last week. She said, “We were just with him.” I assume she was referring to this past weekend and said, “We were there for his funeral service.” She hadn’t remembered. This is clearly a change from several months ago. I have been noticing the change and commenting on it, but it is still somewhat surprising when she says things like this.
Her increasing loss of short-term memory is not the only change. She seems more reflective. She talks more about the past, her family, our relationship, and about me specifically. She expresses more appreciation for the things I do for her. She is also much more accepting of my suggestions regarding her clothes or whether she can work outside and, if so, where and with the clippers.
In general, I would say there is a striking change in her dependence, acceptance of her dependence, on me. She accepts my help more readily and even asks for it. That is especially true with respect to her clothes. For example, for quite some time, she has put on clothes that are backwards or inside-out. That seems to be more of a problem now than in the past. Today, she has asked me to help her with her coat when she couldn’t easily put it on. Tonight, she started to put on her night gown. She said, “Wait a minute, I might need your help with this.” She was holding it up and trying to decide which was the top and which was the bottom of the gown as well as the front and back. She started getting frustrated and asked me to do it. I finally put my hand through each of the sleeves and grabbed her hands and guided them through. I can see that this is going to be worse very soon. She got into bed and then said, “I can’t live without you,” something she has said many times along the way. Right now, it takes on a more serious meaning.
I am sitting across the table from Kate at Panera. She is working a jigsaw puzzle. No surprises so far. A minute ago she said, “You know, you are the one person I trust.” I told her I wanted her to trust me always. She closed her eyes a minute. I asked if she were tired. She said she was, but she didn’t want to go home. Then she said, “I know your name.” There was a very slight pause, and she said, “Richard Creighton.” She hasn’t said anything since. She looks very tired. I wonder what she is thinking? What is on her mind? I would really like to know.
It is now a few minutes later. Kate said, “I’ll get out of it.” I stopped and looked at her and said, “Is there something I could help you with?” She said no. Then she said, “i’m just kinda out of it.” In another few minutes, she said, “Lawrence Willcox.” He was a friend of ours at TCU. She didn’t say anything about him, just his name. I asked how she happened to think of him. She said, “I don’t know. It just came to me.” She seems to be in a very reflective mood.
Kate has a nickname for me, “MM,” “My Memory.” I don’t really have a great memory, but she thinks so. Of course, compared to hers, it is fantastic. I am able to help her with most things she forgets. It is not unusual, however, for me to slip up. I did just that this afternoon. I completely forgot about our 3:00 appointments for haircuts. Fortunately, Dawn called about 3:05 to ask if she had made a mistake. I checked my calendar. I had entered it correctly. I just hadn’t looked at it.
Her phone call broke into a very peaceful and unusual moment. Kate and I had returned from lunch a few minutes before 2:00. It is the first nice day after almost a week of cold temperatures. For that reason, I fully expected Kate to head straight for the yard when we got home. Instead she came in the house and brushed her teeth. Then she brought her iPad into the family room and took a seat. When I saw her, I told her I would come in and join her. I put on some piano music by Andre Previn and sat down on the sofa with my laptop where I made my previous journal entry. We don’t have many moments like that. I think we were both enjoying it. I know I was. Thus, I had mixed feelings about Dawn’s call. I knew we had made a commitment to be there. I needed to have my haircut, and Kate was due for color. On the other hand, I hated to break the spell. I’ll remember that as a special time during which we didn’t say a word to each other. We just enjoyed quietly passing time together.
As I reflect on what I just said, I have to contradict myself. Every evening we have a similar experience when we return home from dinner. We go back to our bedroom where I sit in my chair and watch the PBS Newshour. Kate sits in her chair and works on her iPad. It is a very peaceful way to end the day. I think what struck me this afternoon was having the experience at that time of the day. Typically, when we are at home, Kate is outside, and I am inside.
Kate has annual check ups with her ophthalmologist. Several years ago, the doctor mentioned that Kate had a cataract in one of her eyes. We’ve been following it since then, but it had not reached the point at which surgery is recommended. That changed in her most recent visit in December. After a brief discussion, we decided to pursue the surgery in January. Since then, I have had serious doubts as to the advisability of this procedure. Although such surgery is much easier than it used to be, it still requires the use of anesthesia that is reported to have potential negative effects on Alzheimer’s patients. We have a preliminary appointment scheduled with the doctor two days from now. I am considering canceling.
This morning for the first time I posted a question on the Caregivers’ Forum of the Alzheimer’s Association. I pointed out the following things I was considering in an effort to make the wisest decision for Kate.
1. Kate, age 77 in one week, was diagnosed 7 years ago.
2. We have maintained a high quality of life to the present time.
3. She does have some vision problems. She has a cataract in one eye and 20/60 vision in the other.
4. She has trouble recognizing people in person and in photos. I can’t be sure how much is a result of her Alzheimer’s and how much is her vision.
5. She expresses no vision problems, but I observe she is much more careful going up and down stairs or curbs than she used to be, especially at night.
6. I believe she is in the early-to-middle part of Stage 6 of 7 stages of Alzheimer’s.
7. I can’t predict the future, but my guess is that in 6-12 months having had the surgery might not matter.
8. It is possible that the anesthesia alone might effect her in a way that would reduce our quality time together.
The responses I got from my post avoid giving me a specific instruction as to what I should do, but they reinforce my concerns. I just heard from Virginia, Ken’s wife. I had asked for her thoughts. Her reply provides additional weight to my uneasiness in moving forward with the surgery.
When I consider everything, I feel the risks outweigh the gains. I would love to improve her vision but not at the cost of shortening our quality time together. I intend to cancel the surgery. Tomorrow I will contact the ophthalmologist.
Among the first signs I noticed related to Kate’s Alzheimer’s was her lack of attention to some of her major household responsibilities. The most obvious one was that she often didn’t have dinner ready. It also included less obvious things like washing clothes but leaving them in the washing machine for a day or two before putting them into the dryer. Over the years, I have jumped in to take care of these things without our ever talking about it. It was as though she didn’t notice that I was taking care of meals, the clothes, and other household chores.
Thus it has come as a surprise to me that on several occasions recently she has asked if she could help me with something. Two of those occurred yesterday. She saw that I was taking clothes from the washer and putting them in the dryer. She asked if she could help. I felt little need for the help. This is a pretty easy task, but I was so pleased with her offer that I said yes. Later, I brought the dry clothes into the family room where I usually listen to music while folding them. I had already separated her things from mine when she walked into the room. Once again, she asked if she could help me. I quickly said yes. She picked up all of her things and walked back to her room. I later discovered that she hadn’t folded or picked up her clothes, but I was happy with her offer to help. That and her enjoyment of Darkest Hour that we saw yesterday afternoon made yesterday another good day.
In my previous post I failed to note that Kate was in an especially good mood yesterday. I am sure that played a significant role in my own sense that we had had such a nice day. It is not that she is usually irritable. She does continue to show more irritability than before her Alzheimer’s, but those moments don’t last long, and, fortunately, at those times she is not difficult to get along with. That said, sometimes she is especially happy and cooperative. That is the way she was yesterday.
She also continues to be reflecting or thinking a lot. Over the course of her illness she has occasionally said something that sounds like we had just been talking about something and expects me to know what she is talking about. There were a couple of those experiences yesterday. She said, “I’m going to be very careful.” Instead of acting puzzled and asking what she was talking about, I said, “That’s a good idea.” She said, “I’m going to stick close to you whenever we are in public.” I told her I would watch out for her. She said, “I know you will. I feel safe when I am with you.”
When she says things like this, as she has done in recent weeks, I tend to impute more to her actions than may be justified. In this case (as in others recently), I believe that she is grappling with a sense that she is less and less in touch with her environment and the people around her. It may be her way of expressing her own insecurity. Overall, she seems not to associate her challenges with her diagnosis, but she still knows she is not normal.
In my earlier post I noted that it appeared that Kate thought she and I had had a prior conversation about the Wisconsin professor for whom she worked while I was a grad student. That was not a unique occurrence; she had another such experience as we drove to dinner tonight. She said, “I’ve always felt comfortable being with you.” It was her tone of voice, not the words themselves, that made believe she was responding to something I had said although I hadn’t said a word. I looked at her but didn’t say anything. I was just puzzled by her comment. Then she said, “I always know that when I am with you that you won’t let anything happen to me.” I agreed.
Both her afternoon and evening comments made me rethink some earlier comments she had made at home. It is as though she is doing a lot of reflecting and/or reminiscing. I often wonder if and what she is thinking during her long moments of silence. Today’s experiences may provide a brief glimpse. I wish I could know and understand more.
Kate and I are still in the breakfast area of the hotel though I expect to leave for Panera shortly. A few minutes ago, she asked the location of the restrooms. I told her and pointed in the direction of the hallway off the dining area. I watched as she walked away and noticed that she followed my directions and went down the hallway. I didn’t watch to see if she had any trouble finding the restroom. This was a replay of what happened yesterday. I watched for her to return and found that she had walked by the dining area into the main part of the lobby and was circling back. As she walked, she looked from right to left and back again trying to find me. Finally, our eyes met and she walked over. I said, “You found me.” She proudly acknowledged that she had. Then she smiled and said, “Well, I made one wrong turn.” Even though I was watching for her, I wasn’t worried about her. This is a fairly small area. I knew she would find me. Of course, by keeping an eye out, I could have quickly jumped in to steer her back on course.
This is a frequent occurrence. She never seems to be concerned. She just calmly looks around. In the event that she does not see me, she takes a seat and waits for me to find her. I have done so a number of times, sometimes with help. Recently, a server at a restaurant where we were dining approached my table and asked if my wife was with me. When I said yes, he told me she was sitting in a booth in the next room. I walked over where she was calmly waiting for me and brought her back to our table.
Kate and I are in the dining area of our hotel where she is having some juice and yogurt. She has her iPad with her as do I. She is still waking up even though she has been up almost an hour and had her shower. That is quite a contrast with my own morning pattern. I wake up ready to go immediately. This sometimes (often?) leads me to spring into conversation more quickly than she would like. That is especially true with her Alzheimer’s. She is much slower getting ready for social interaction in the morning. So here’s what happened a few minutes ago.
Last night I received an email from Ken in which he thanked Kevin and Rachel for hosting the Christmas dinner. He included several photos taken yesterday and attached them to his email. I hadn’t shown them to Kate last night because she had already gone to bed. While Kate was working a jigsaw puzzle on her iPad and eating her breakfast, I remembered the pictures and showed them to her. There were only four or five and had gotten through two or three when she said, “Do we have to do this now? Can’t we do it later?” I quickly realized I had misunderstood her priorities at that moment. She just wanted to relax quietly with her breakfast and iPad. I thought she would be eager to see the pictures. Once again, I was seeing things from my own perspective and not hers. She even said, “You always want to do things when you want to do them.” Herein lies one of the challenges for a caregiver of a person with dementia. You are always working to think of things to help but discovering that you aren’t always able to see things from the perspective of the one you want to help.
This has been another very nice day. The moment Kate got up she was in a very good humor. I don’t mean to suggest that she is usually in a bad humor, but sometimes she can be a little grumpy. That is before she fully wakes up. That was not so this morning. On the other hand, she has displayed confusion throughout the day. For example, she got dressed this morning before I reminded her that a church friend had invited us to lunch. She was dressed more casually than I thought she should be. When I noticed what she was wearing, I told her that I had forgotten to remind her that we were going to lunch with our friend and that she might want to wear something else. She very nicely told me she thought what she was wearing was fine. I quickly decided not to make an issue of this and told her that would be fine. It was only after we had left the house that I noticed that she was wearing shoes that didn’t match in color or style. I let it go, and everything was fine.
On the way to the restaurant, she asked me who we were meeting. She asked at least three times before we got there as well as after we left her. Despite this confusion, she got along beautifully at lunch and following lunch at our friend’s home.
As soon as we got home, she went outside to work in the yard. I let her know it was getting close to dinner time almost three hours later. She had been sitting in the flower beds cleaning out weeds and other debris. For that reason, her clothes were visibly soiled. I thought she might be planning to come inside, take a shower, and put on clean clothes. As it turned out, she just washed her hands and was ready to go. I suggested that she change her clothes. She accepted my suggestion. I brought her a change of pants and a top. I gave them to her and said, “Here are your clothes.” I walked out of the room. When I returned, she was at the back door ready to go to the car. She was still wearing the dirty clothes and carrying the clean ones. I told her I meant for her to wear the clothes in her hands. She didn’t object at all. She was very agreeable and made the change I had suggested.
We went to a Chinese dinner tonight. Soon after we were served, I asked her how she liked the meal. She said it was “good, but not great.” She made a similar comment a little later. Toward the end of the meal, I noticed she was about to finish her whole meal. It was a generous serving. I made a comment, and she responded with, “It’s very good.” This kind of shift in her evaluation of things is quite common. She can easily say that she likes something one minute and dislikes it the next.
When we got home, she walked into our bedroom with her night clothes and asked, “Are we staying here tonight?” This is something else that is not unusual. I have suspected that this occurs because we occasionally we stay in a hotel or the home of our daughter. It must not fully register than we are home.
Given the confusion of the day, one might think it might not have been a good day. But it was. I am glad. I’ll go to bed feeling good.