We have nothing on our agenda today until we go to Casa Bella this evening for their Christmas dinner. After going on my walk, I asked Kate if she would like me to take her somewhere like Panera, Starbucks, or Barnes & Noble. She said she wanted to go to Lowe’s sometime. About 15 minutes ago she came into the kitchen and said she wanted to go to Lowe’s. When we got in the car, she said, “”On the way back, I want you to take me somewhere to get a muffin or something to eat.” I told her we could go to Panera now but thought she hadn’t wanted to go. I told her I would like to do that. She liked the idea only she was dressed in her sweats for yard work. I suggested a change. I came in the kitchen to write this post. In a few minutes she came in with a pair of shoes in her hands and said those were the only shoes she could find. I told her she hadn’t changed clothes. She said, “Oh.” Then she turned around to go to her room to change. This coupled with my sense that she has been unusually lethargic over the past few days seems another warning sign of impending changes.
Being Tired
Two days ago my post suggested a change for the worse in Kate’s condition. I hesitated to say that because the difference had been so minor, but in the last 24 hours I have noticed a difference in her that may confirm my original suspicions. Yesterday morning I came from the office to take her to lunch before going to Rotary. When I returned around 2:00, she was in bed. That is not something unusual except that she remained there until about 4:30. When she got up, I suggested that we go to Chalupas for dinner and reminded her that we were supposed to go to the December meeting of the music club. She looked disappointed. I told her she didn’t need to go. She accepted. She went into the family room and sat with her computer. It was not open. She just sat there. She looked very sad. I went in and sat with her on the love seat. I asked if I could do anything to help. She said, “You’re doing it.” We sat there in silence except for a few comments that I made. During this time all I could imagine was that she was discouraged about her Alzheimer’s and being bored. At one point, I reiterated that I wanted to help her but that she didn’t seem to want to talk about it. She said, “About what?” I told her that she seemed depressed. She said, “I don’t feel depressed at all. I am just tired.” I told her I felt better knowing that. We then left for Chalupas. She seemed to get along as she usually does. She was not talkative, and she seemed tired. She is often this way when she is hungry. All this seems like something that is different. She is more tired than usual.
When we got home, I showered and dressed for the music club. She got into bed. When I left, she was in bed and said that she was going to sleep. When I got home at 10:30, she was sound asleep.
This morning she was up at 6:00 and went back to bed. That much is normal. She just got up again and seems tired. Libby is coming today, and I have a lunch meeting at 11:30. I asked if she would like to go to Panera. She said she would. That was 30 minutes ago, and she just got up. I had told her there was no hurry. We’ll see how it goes today. We have a symphony concert tonight. She didn’t go last time. I wouldn’t be surprised if she didn’t go tonight.
Some Changes
I was just about to write a post that would say that a number of things have happened over the past few days that make me think Kate is making a shift downward. The first sign is that she has seemed depressed and not as upbeat. The other is confusion which I have mentioned in an earlier post today.
Just before I started I heard her call me. She wanted me to come to her office. When I got there, she said she wanted me to see her closet. Her bed had no clothing on it, nor was there any on the floor. Her closet looked beautifully organized. She thanked me. When I asked why she was thanking me, that I hadn’t done a thing. She said, “You bought me the hangers.” For over a year she has periodically asked me for more wooden hangers. Each time we have gone by Bed, Bath, and Beyond. Each time I think this is the end. Then a while later she says she wants more. I am surprised she attributed her success to me. This is something she has done on her own. She said, “I feel so much better. I can’t tell you how much better I feel.” I reinforced how much better her room looked and that I know she must feel better. This is not the first time she has cleaned up, but it never lasts too long. I am wondering if in her depression of the past few days, she hasn’t directed her attention to cleaning up which made her feel better. Whatever it is, I am grateful. It makes her feel a lot better. It makes me feel better as well.
Turning a Corner With a Little Trepidation
Earlier I posted emails that followed our visit to the Robinsons last Wednesday. In those I speculated that Kate seemed to have been worn out after the visit. During the afternoon, she closed her eyes and rested in a chair at the Robinsons while we were visiting. After we got home, she went to bed rather quickly and expressed only minimal interest in her new iPad that had arrived in the mail that day.
The next day things everything was pretty normal. For quite some time she has seemed to require more rest than she used to. Then on Saturday after we returned home from seeing a movie and getting ice cream, she got right into bed in her office. That would have been around 3:30. She remained in bed the rest of the afternoon. I had made reservations for dinner at 6:45. She had been fine with that. At 5:30 or so, I checked on her, and she said she didn’t think she wanted to go. We talked a minute, and she decided to go ahead with our plans. A few minutes after 6:00, she was still in bed. I asked if she still wanted to go. She indicated that she did. When she had not made a move to get out of bed by 6:15, she said she thought I should cancel the reservations which I did. Then I went to Panera for a sandwich and salad. Before leaving, I turned on an ETV fund raiser that featured music from the 50s and 60s. When I returned from dinner, she was up and smiling. She quickly told me about the wonderful program on TV. It was the one I had turned on for her before leaving. She was in good spirits from then on.
She got into bed early that night and told me she was waiting for me. I took my shower and then got into bed with her. She seemed especially glad to see me. She always does. She likes to be cuddled before going to sleep. This time, however, I sensed a deeper meaning.
Then yesterday after we had gotten home from Sunday school and lunch, (We did not go to church at her request.) she again went to bed and remained there for the afternoon. I was watching the final round of the PGA championship; so I didn’t rush her. Finally, around 6:30 I asked if she wanted to go out for something to eat. She said she did. When we got home, she again got into bed after changing for the night. Again, she indicated she would be waiting for me. When I got into bed and held her, she said (as she has done a number of other times), “This is the best part of the day.”
She still does not want to talk about how she is feeling, but it seems like she is seeing herself drifting into a new stage, and it concerns her. It seems like she is telling me with her behavior, “Richard, I am drifting away. I love you.” In the past I have wondered if she would ever reach a point that she would say something like this. I believe I would if I were in her position. Her way, however, is to express her appreciation without ever specifically and literally connecting it to her Alzheimer’s. She does say how much I do for her, that she couldn’t live without me, is so glad she has me, how much she loves me, etc.
I am beginning to think that this is the beginning of that stage of AD that we all imagine when the person who has it no longer connects with the world around her, doesn’t put up a front, and doesn’t even recognize her condition. Although Kate and I are quick to count our blessings, I can’t deny how much it hurts to watch her drift away like this. It also makes me very doubtful that our cruise next May and the trip to Chautauqua next June will come about. The cruise is not that big a deal, but Chautauqua has been such a special place for us that I don’t want to let that go easily.
Change In Irritability?
Lately I have noticed what may be an increase in Kate’s irritability. Here is an example from this morning. This is our third day at Chautauqua, and she put on the same clothes she has worn at least the other 2 days. Last night I had reminded her that her suitcase was in the closet. Earlier this morning I put it beside the chest of drawers in our bedroom where she would see it. When I saw that she was wearing the same clothes, I said something about it. She did not take offense. I said, “Here is your suitcase.” She said sternly, “Put it on the bed.” Then she added, “How am I supposed to get it there (meaning by the chest)?”
Something else that could become a problem is a habit she has developed. It has two variations. The first is simply a very audible yawn. This is most common in the morning after she gets out of bed. It also occurs when she is tired or bored. While we were waiting for the opera to begin last night, she started yawning with the accompanying audible yawn. I said something to her about how loud she was. She was very irritated with me. I don’t know where this leads, but I fear that it will become something that is a bother to people around us. I remember that Sharon Billings said she carried a card with her to give to servers and others in restaurants and other places letting them know that her husband had Alzheimer’s. I may need this in the future.
Since beginning this post, Kate has changed her top, but is still wearing the same slacks. I cut her a couple of pieces of zucchini bread. She ate a banana and is now resting beside me on the sofa. This continues to be a pattern. It is as though getting up and eating something wears her out. I would think that her desire to rest relates to the strain of being outside the confines of her familiar territory; however, she does the same thing at home. The difference is that at home she always has the yard in which she can busy herself.
All these things continue to cause me to wonder if coming back to Chautauqua next summer is a good idea whether for one week or two. I really want to come back. She enjoys being here, and it seems easier for me to guide her into more things to do than at home. So far I have been unsuccessful in trying to get her to walk around the grounds. That seems like it would be something she would enjoy, but she reacts quickly and negatively when I suggest it.
More on Weakening Inhibitions
Yesterday I commented on what I usually term Kate’s growing childlike condition. A better way of describing much of her behavior is to say she seems to have lowered her inhibitions. So far this has not presented a problem, but I can see that it might do so in the future. Here are two examples. On Sunday while we were seated on the front row at our combined adult Sunday school class, she was quite tickled at the performances of two of our associate pastors who were reading and acting out the parts of devils in C. S. Lewis’s The Screwtape Letters. Her laughter was quite audible but never a problem. Once again, however, this has not been characteristic of her in the past. The second example occurred last night at a reception for the symphony. The MC was introducing a number of people to congratulate for their contributions in making for another successful season. When he got to our Executive Director Kate yelled out “Go, Peggy.” This response was not loud enough to be noticed by more than a few immediately around us, but, once again, this is not normal behavior for her. Besides that she is not close to Peggy at all.
On another front this morning we had another example of her memory’s failing. Today we are going to Nashville to pick up our youngest grandchild, Taylor. Around 7:30, I told her that we would leave around 9:30. About an hour later, I noted that we had not discussed where Taylor would sleep and that he had slept in her office the last time he was here. She said she would clean up the office so that he could do so again. I noticed a short time later that she was in her office cleaning up. Then I went to get gas in the car and to buy iced tea and lemonade from Chick-fil-A. When I returned at 8:40, she was outside pruning shrubbery along the driveway. I stopped and reminded her we would be leaving in about 45 minutes. She asked where we were going. I told her, “To pick up Taylor in Nashville.” She said, “Oh, yeah.” Then she told me she wanted to stay out another 30 minutes before coming in to get ready. When I came inside and went to her office, I noticed that she had not cleaned it up. It is an absolute mess. Fortunately, we don’t have to leave as early as I had planned. We can leave an hour later and still have time for lunch and to get to the airport on time. I simply report this incident as another illustration of what things are like.
One other thing I should mention is that although Kate seems less worried or bothered by her condition, there are some situations that do frustrate her. One of those occurred as we were getting ready for last night’s reception. I had noticed that although I had bought her new clothes early in the spring, she has not been wearing them. She asked me where they were, and I told her they were in the front of the closet. When I went to get them, I noticed that there were only 2 of 5 pants there and a couple of tops. She could tell I was frustrated over their not being there and said tearfully, “I just can’t do anything right.” She is pretty much correct about this. And this occurs during a period of time when she is so desirous of being able to do things for herself. This is the first time in a while that I have heard her express such a sentiment. It serves to remind me that the person with Alzheimers knows she is failing and finds it frustrating and no doubt frightening. This current struggle for a way to retain her independence is illustrated by her wanting a calendar for the refrigerator. That is something she mentioned to me several times before we got it at Staples over the weekend. It seems to me a desperate attempt to regain control of her life. And, of course, she and I know it is a losing battle. What a tragedy this is.
Life can be confusing.
In the past two weeks I have noticed Kate’s making a more concerted effort to be on time and do things right. For example, early this week a neighbor called to invite Kate to go with her to an orchid garden of some type. Yesterday she called, and I answered the phone. She said the tell Kate that she would be by to get her at 9:00 this morning and that the admission fee is $6 that would be applied to any purchases she might make. They were going to lunch afterwards. I was a bit uneasy because this is during the time that I would be at the Y. It was clear that she was confident that all would go well, but I very carefully prepared her to take her debit card and some cash. I put them on top of her dresser in our bedroom. I also put a sticky note with tipping information. I told her it would probably be best if she just put the cards and money in a pocket rather than carrying a purse thinking that she might leave the purse someplace.
This morning I was prepared to set the alarm for her to make sure she got up. I also set reminders on my phone for me to call her to make sure that she was ready. The good news is that she woke up when my alarm went off at 5:00. She asked that I turn the radio on. She got up and got back into the bed with the radio still on. I was calling her around 8:30 when I got a call from her. She was telling me she had found the receipt for her lunch with Ellen on Wednesday. She also said she was dressed and ready for our neighbor.
At 9:15, I received a phone call. She asked where I put her card and money. I told her it was on the dresser. She said it was not there now and that her ride was there. She hung up to look for it. I won’t know until this afternoon if she found them or if our neighbor told her she would pay and Kate could reimburse her.
All of this follows the 3-4 crises we had 10 days to two weeks ago as she was trying to get ready to go out. I am trying to interpret everything that is going on right now. It is interesting that Kate and I both told people about her condition within one day of each other. I told Tom and Stan on Monday of last week. She told Ellen on Tuesday of last week. Perhaps we both felt the crises of the preceding few days was a sign that Kate’s condition is getting worse, and we just had to tell those closest to us.
I also think Kate is frightened because she is clear-headed enough to grasp that she is losing her ability to do many things. Naturally, this affects me as well. As I always said in connection with my visits to Dad, when he was doing well, I was doing well.
Kate Tells Her Best Friend
I was about to write a new update when I saw that I hadn’t mentioned that last Tuesday, April 15, Kate told Ellen about her Alzheimer’s. They had had lunch the day before. I am not sure if anything special happened, but when I got home that afternoon, Kate told me that she was going to call Ellen about having lunch the next day and wanted to know if I could join them. I told her I could, and the she said she wanted to ask her over to the house following lunch. I suspected (and have also learned) that she might be telling Ellen. She only said, “Let’s talk about it tomorrow.” (This very frequent pattern of saying, “Let’s not talk about it now” or “Let’s talk about it later” I take as an indication of the frustration she feels when she tries to explain herself.) The next morning she told me she was going to tell Ellen.
After coming home from lunch, the three of us chatted for a short time before Kate simply said, “I wanted you to know that I have Alzheimer’s.” Ellen did not react. I was concerned about the way she might react because it might clue Kate in that I had already told Ellen. Later Kate told me she appreciated the way Ellen had reacted. She didn’t want anything that indicated great surprise or pity.
It was interesting to me that as Kate provided a little more information. She told Ellen that she and I were adjusting well and that our lives had not changed in any way since the diagnosis. Of course, that is not true. They have changed a lot. I also felt as though the way she expressed it reinforced my sense that Kate does not recognize how far along she really is. She is still thinking about years ahead when we do things with the grandchildren etc. On the other hand, I am thinking this summer may be the last summer that we host or travel with the grandchildren. That is because it is hard for me to take care of her and the grandchildren. I hope I am wrong. It could be that because the grandchildren are growing up that they will need less attention. As they say, “time will tell.”
One other related thing from the conversation with Ellen is that Kate told her that Ken also has Alzheimer’s but that he is further along than she. I don’t know how she got this impression. It is certainly consistent with other things about which she gets confused. The reality is that they had trouble diagnosing Ken’s Alzheimer’s because it is in such an early stage.
Kate’s current behavioral symptoms cause me to wonder if she is now entering that stage where she really doesn’t recognize that she has Alzheimer’s. This is hard to express. I don’t believe that she will really reach that stage until much later. I do think, however, that there might be a gradual progression toward that end and that I am observing the beginnings of that process. One of the things that is happening is that she is periodically irritated by my helping her. She points out to me that she does not need my help on most things. I am trying to be more careful in discriminating those things for which she does and does not need assistance. One of the many challenges for the caregiver is just this. There are so many things that the patient does wrong and also for which she asks help that the caregiver tends to extend that to more things than are necessary. That, in turn, takes away from the patient’s sense of autonomy. I’m going to be working on this. The other side of the coin is that the patient easily grasps some areas where she needs help but doesn’t see others. As with most things, it is an adjustment for both patient and caregiver.
Mini-Crisis
Although Ellen was surprised about Kate’s diagnosis, she did say that looking back she could see signs. She is now seeing more signs. Yesterday, she came by to pick up Kate for a visitation of a friend who died last week. Kate was not ready when she arrived. I invited her in. Kate was in something of a mild panic over not being able to find any slacks that fit her. A couple of times she called to me for help. She was also making noises that have become commonplace. It is hard to describe. They are something of a groan. Before Ellen had arrived, I had mentioned that I thought she was dressed too casually. She changed. She got a jacket that didn’t quite match what she was wearing. I suggested she might try something else. Then she found something that was better but not just right. I let her go out with it.
We agreed that they would call me when they were finished, and I would meet them for dinner. When they got back to the house, we chatted outside on the patio for a few minutes. When Kate went inside to change clothes, Ellen told me that the day before, Ellen reminded her that they needed to call me even though they had just done so only minutes before. She said that Kate said, “”My short-term memory is really going.”
The biggest crisis we have had occurred last night. Kate is hosting her PEO meeting this morning. This was a last-minute change because the person who was to host was unable to do it. Kate’s immediate thought when she was asked to do it was the yard. She always wants to put the emphasis on the yard. I’m not saying this is a bad thing, but that she then forgets to do things on the inside of the house that need doing. I tried to encourage her to address some of the things to no avail. The bottom line is that she still did not have everything ready late yesterday afternoon. We went over to Panera’ for a quick dinner. I didn’t notice anything special until we were nearly finished. She had a depressed expression on her face. She would look down and put her hand to her head. My interpretation is that she was thinking about all the things she had to do, how difficult it is for her to do them, and how little time she had. This is something I have observed before. I know that she doesn’t like for me to talk. She just wants to be left on her own to get hold of herself. When I asked if she were ready to leave, she said she needed a little more time to calm down. We took another 5-10 minutes, and she said she was ready.
We had planned to go to Lowe’s for a few more plants, something I thought was crazy since it was about 7:00 pm. I asked her if she wanted to go home first. She said yes. We sat on the love seat in the family room and cuddled without talking. From the time we got up to leave Panera’s she was shaking like she was cold. This seemed to ease after we sat for a while at home. She said she was ready to go to Lowe’s.
When we got there, she was shivering and wandered down the aisles looking for plants. When she picked up a plant that was quite different from what she had said she wanted, I told her this was not like what she had said she wanted. She broke into tears and said, “”There’s not going to be anything left that I can do.” I held her a few moments. Then she continued to look for plants even though she was still continuing to cry.
At this point it was clear to me that she is frightened about what is happening to her and what still lies ahead. In the past few months, it had seemed to me that she had entered a phase that was a little more like people are referring to when they say, “At least she doesn’t know.” I have been adamant about saying that Alzheimer’s patients do in fact know for a long time before they don’t know. I was beginning to think that Kate was getting to that point.
It is also clear that Kate believes she is not as far along as she is, but she is aware of her increasing deterioration in memory and function.
So how do feel this morning. Not good. I feel a little tense. I feel as though my heart is beating faster than it usually does. It tears me up to see her go through this. If only there were some way to avoid going through this. I know there are harder days ahead. I am now wondering if the hardest ones are in this phase where the decline is becoming more noticeable, and she has to think about this like someone going to the gas chamber or electric chair. Because I see it as frightening to her, it is frightening to me.
Not everything is good
Yesterday afternoon we went to see the movie, The Book Thief. It is a good movie, but gut wrenching. Deals with the holocaust. As we were about to leave the theater, I said to Kate, “I hate to say this, but I fell asleep before the movie started and missed the beginning.” She sensed I was about to ask her how it began when she suggested going online. She seemed a little depressed which I associated with the movie. As we walked down the hall she said, “I can’t even remember anything about Captain Phillips,”a movie we had seen 2-3 weeks ago. I sensed then that she was depressed over not understanding the movie we had just seen. I have mentioned before that she finds it hard to follow movies and plays and it is frustrating. This time she was more depressed than usual. I said something intended to be supportive, and she gently said, “Don’t say anything. I know you want to help me.” We drove home quietly. I made a fire and thawed some chili from the freezer. We sat quietly in front of the fire until she wanted to go to bed. We talked very little during that time. Before going to bed she said, “I’ve been pitying myself all day.” I said, “You’re entitled.” After I had taken my shower, I got into bed and hugged her until we were both asleep
I am also realizing that her behavior sense Dad’s death is not entirely part of our grief. The weather has changed, the party is over, and she is not spending a good part of the day pruning. That was a major activity before the party. Thus she is left with little that she is able to do, but play Free Cell on her computer.
This has led me to go back to my thinking about telling the children about things after Christmas.