Posted on

Imagining Ihings

During the past few days, it seems like Kate has been more bothered by being bored than in the past. For that reason I decided to come home from the office earlier today than I usually do so that she and I could do something together even if it involved just going to Panera’s. I got home at 10:33. Kate was working in the flower bed in the front of the house. I went to see her, and she was enjoying herself. I told her it was early and that I would just let her continue to work outside. Then I went inside and handled a few things. She finally came in about 12:15. We didn’t engage in any conversation. I felt there was no need to hurry as our only obligation was at 2:00 when she was getting her hair done followed by my getting a cut. At 1:00 she came into the kitchen and asked, “Is this all right?” I told her she was fine. She seemed greatly relieved. She was wearing something casual that she frequently wears. Since we were just going to eat and get a haircut, it really didn’t matter. I did look at her makeup and suggested that she smooth out the make up as it was heavily caked in spots as it often is. Although she wants me to check her makeup, she also believes I am too picky. She said something like, “Well, I’m not Queen Elizabeth. It doesn’t matter that much.”

Interrupted and finished 2015-09-19 (5:15 pm)

In the car she asked where we were going. I told her to Applebee’s for lunch and then to get our hair cut. She asked what time I had to be at my meeting. It turned out that she had been thinking she had to hurry to get ready because I had told her I had to go someplace. In fact, I had said nothing. She was mildly upset because she had rushed. While we were sitting at Applebee’s for lunch, she said, “For that you owe me a trip to Lowe’s.”

Today she had another experience in which she thought I had told her something. About an hour after we got back from lunch, she called to me from her office and said that she was going to try to take a nap. Another hour or so later, she came into the kitchen and said, “You were right.” I then guessed, “You couldn’t get to sleep?” She nodded her agreement. I didn’t tell her, but I had never said anything about her not being likely to get to sleep. She clearly thought we had. I have observed this kind of misunderstanding several other times. Will be looking to see if this is something that gets worse.

Posted on

Telling More Friends

In the past 3-4 weeks, I have told a few more friends about Kate. The first of these was the wife of a former colleague of mine at UT. We had gone to dinner and a play about three weeks ago. (We have known her and her deceased husband since we moved to Knoxville. He died of lung cancer almost 3 years ago. When our children were young, they had asked us to be their son’s guardian should anything ever happen to them; so we have a lot of history with her.) I called her several days after we had gone out and told her of the situation. She responded with all the empathy of a long-time friend. She also asked what she could do. I told her nothing other than continue being a friend. She asked about the possibility of going to lunch with Kate once in a while. I told her that would work well. This past Friday she called and asked about a good time. I suggested today. That fit her schedule as well, and the two of them had a nice lunch.

A week ago today, I called Don Crawford who is a member of our church. His wife, Carol, also has Alzheimer’s. I told him that I had thought about calling him a number of times and went on to tell him that he and I were facing the same thing with our wives. He had not suspected. We had a comparatively brief conversation. He did let me know that they had known about Carol’s diagnosis for 8 or 9 years. This is the first spouse of an Alzheimer’s patient that I have spoken with whose reported a gradual decline somewhat like Kate’s. It also sounded as though their situation was quite similar to ours as well. I hope to talk with him at some time in the future to learn more.

This past week I needed to print something and have to use Kate’s computer to do that on the printer at home. When I did, I noticed a couple of emails to Kate from her librarian friends.  This is a group of about 5 former public school librarians. They had set a date for lunch this Thursday. Kate was the only one who hadn’t responded. I replied for her that she would be there but would leave early to meet a doctor’s appointment.

After sending the email, I decided the time had come to inform the group about Kate. Over the weekend, I called a member of the group. She is another long-time friend whom we had also met through university connections. I did not reach her but left a voice mail and gave her my email address suggesting that was a good way to reach me. She sent an email last night. This morning I spoke with her about 30-40 minutes.

In addition, I sent an email yesterday to someone who now lives in Kentucky. I used to work with her when she was with one of my major clients. We had been communicating about travel to France. I decided to let her know about Kate. So now the group of people who know about Kate has expanded, and my expectation is that this group will continue to expand over the next 6-12 months. After that, I expect that it will be commonplace.

I am feeling a bit relieved to be able to let people know. I think it may help them understand any changes they see in Kate. Probably more important for me is that it gives me a sense of comfort that I am not concealing everything which allows my base of support to enlarge. That will become more important in the next year.

Posted on

Communicating Indirectly

I have often noted that Kate does not like to talk about her Alzheimer’s, but that she regularly makes indirect references to it. Here is an example from today. Last Friday her friend, Camille, invited her to lunch at noon today. I had suggested this time as I have Rotary at 12:30 on Monday. I arrived home from the office at 11:00 to make sure Kate would be ready when Camille arrived. I discovered that Kate had already come in from outside and had taken her shower before getting ready. I told her I would get her debit card for her and that I was putting a note indicating to tip $4.00 no matter what the check would be. She took the card and note which were in a small purse.” Knowing she might put it down in her room and not be able to find it later, I suggested she give it to me. She would have no part of that. Then I suggested that we put it in a place that both of us would know. She liked that. I told her I would put it on the corner of the island in the kitchen where I keep her daily calendar. She agreed to that.

Ten to fifteen minutes later she walked into the family room and said, “On the island in the kitchen.” I said, “You got it. Two thumbs up.” Then she said, “Four thumbs up” indicating that she was giving herself a pat on the back. No conversation about Alzheimer’s, just a subtle statement of the situation indicating her own recognition of her own memory problem.

Posted on

More Memory and Deja vu Issues

Nothing dramatic has occurred since my entry last night, but I did want to mention a couple of things. First, we were watching Breaking Away via Netflix when she got up to take her medicine. I turned off the movie while she was away. When she returned, I started it again in the place where we were when she left. In a few minutes when we had reached a place that was clearly beyond where I had stopped before, she said, “I remember this part.” I said, “From when?” She looked at me funny as though I had asked a dumb question and told me “right before I go my medicine.”

This afternoon we went to see a movie that had been produced and directed by a man who had grown up in Knoxville but now lives in New York. In part of the movie, it mentioned that he had grown up here and showed pictures of his house and neighborhood that looked very much like a neighborhood near us. After the film, I made reference to this and discovered that she had either forgotten that he was from Knoxville or simply missed it. We had even talked with someone who sat next to us who mentioned that the producer/director had spoken to his Kiwanis club this past Wednesday. He had talked about growing up here and how that related to his adjustment to being gay. Still she missed the fact that he was from Knoxville.

Tonight we went our for pizza. She walked up to the counter with me to pay. We spoke with the owner who was handling the cash register. He said something to her, and she said, “Oh, yes, you told me that last time.” This was her first time to talk with him. This is similar to what she says to me all the time. It comes up a lot when she asks a question that she has asked before; however, she also says it when she hasn’t asked the question before. I think it must be her way of covering for herself.

It is these kinds of experiences that make me think that she is missing much more of what is said in conversations, plays, movies, etc. than one would otherwise suspect.

Posted on

Getting Tired

For the past week or so, Kate has been getting more tired than usual. In fact, she seems lethargic except when she is outside working in the yard. Fortunately, she has been doing that more recently as the weather is not as hot.

I probably would not make much of this except that it has been accompanied by less enthusiasm for doing things she would normally like to do. For example, yesterday was PEO day. She got ready without any difficulty, but she did not seem eager to go. She was very lethargic. In the car she closed her eyes as if she were going to sleep.

When I dropped her off, the past president of her chapter, walked over to the car and greeted me but not Kate. Then she turned around and walked up the drive and into the house without waiting for Kate. I felt sorry for Kate. This is the kind of thing that tends to happen when people know you have Alzheimer’s. I don’t think they mean anything by it. I think they believe that the person with Alzheimer’s just doesn’t notice or care. This is similar to the fact that people seem to look at me more when we are together in a social situation. I have to admit that some of this happens (I think) because Kate may communicate less than she used to do. It is harder for her to get into an extended conversation than in the past. I see signs that this is becoming more common.

Another sign of this lethargy occurred this afternoon. After we returned from lunch and a shopping trip, she said she was going to try and rest. Just before 4:30, she came into the kitchen. She seemed a little groggy as though she had just awakened. We hugged. Then she said she thought she would go out on the patio. I opened the door for her, and we both went out and sat for about 30 minutes. She indicated that she was hungry and would like to eat early. I made reservations for 5:30. She seemed tired on the way as well as when we sat down at the table. She was not talkative which is not unusual. When we left the restaurant, I commented on the fact that it was early (6:30) and said that we could watch the movie Breaking Away when we got home. She indicated that she would be ready for bed. We had not gotten very far in the movie when she started falling asleep. I turned the TV off.

Before we left for dinner, Camille called me to say that she would like to invite Kate to lunch sometime and wanted to know when would be a good time. I suggested this coming Monday. I told her to call back for Kate on the landline, and she could ask Kate but first we should establish the time so that I could make sure she is ready. We decided on noon. In a couple of minutes she called back, and I put Kate on the phone. She was thrilled that Camille had invited her. I will have to tell Camille how much this meant to her.

These kinds of things have made me think once again that Kate is going through another period of decline. First, it was the decline in short-term memory. Now it appears that she is losing the ability to focus on things which leaves her with little to do. This may be exacerbated by having to work so hard to follow things that she is withdrawing a little bit. At the same time, she is working so hard that she is worn out.

Posted on

Deja vu continues

It has been a while since I have mentioned it, but Kate’s Deja vu experiences have not subsided. In fact, they may be even more frequent now than in the past. When we drive down the road leaving from or returning to our house, she frequently notices people walking or running and says, “Remember him/her.” She is trying to get me to remember the next time she sees them. The same thing occurs in restaurants. Sometimes she sees people in more than one booth or table that she says she sees a lot at that particular restaurant.

Posted on

Moments of despair

How quickly things can change. After a lengthy period of joy and contentment (as expressed in my previous post), last night we hit a low point. About 5:00 Kate came into the kitchen where I was working on the computer. I could see immediately that she was wearing a sad face. I got up, walked over to her, and asked, “Bored?” (This is an increasingly common complaint.) She answered, “Bored and hungry.” I told her we could go to an early dinner and started to offer a few suggested places when she asked, “Would you take me to Chalupas?” This is her favorite Mexican restaurant. She seems to see it as a place of comfort. I am not sure whether it is just the food or the food and the general atmosphere of the place. We know the owner and almost all of the servers with whom I always engage in conversations in Spanish. She likes hearing me speak Spanish and likes the people there.

At any rate, I told her I would be glad to take her and said something like this. “You really like that place. This would be the third time we have eaten there in the past 7-8 days.” She said she hadn’t realized that and we could go some other place. I told her I would be glad to take her, but I wanted to get something different for myself. Then I told her I could just get a single cheese burrito and then have some V8 when I got back home. (This represents one of the challenges I have eating out with Kate. She loves carbs. In the past week we have eaten Mexican 3 times, pizza twice (2 nights in succession), pancakes for breakfast, ice cream at Marble Slab, and a bigger-than-usual meal with cheesecake at Casa Bella. I have gained 4 pounds in the last week and my stomach is feeling a little bloated; so I feel the need of something lighter than what she likes.

As we were walking out the door for the restaurant, she said, “I hate being so dependent on you.” Before getting to the car, she said, “I could live to be 90.” She seemed quite depressed. Although I tried to reassure her that I was happy to take care of her, this didn’t help. She perked up a little while at the restaurant, but her being dependent was clearly still on her mind. While we were in the car coming home, I suggested that we look for a movie on TV. Then I suggested watching “Doc Martin,” a BBC series that is available through Netflix. When we got home, I started thinking about something lighter and more upbeat and suggested we might find an old Andy Griffith or something similar. She liked that. I got on Netflix and search for Dick van Dyke and found it. We ended up watching 4 episodes, and she loved it; so did I. When we turned off the TV and went to bed, everything seemed all right. I was wrong. I heard her get up just after 11:00 and go into her office. In a few minutes, I went in and found her in the bed with the TV turned on to an old black-and-white movie. She has always found comfort in having the TV on when she is trying to go to sleep. She told me she couldn’t sleep, something very unusual these days. I asked if she wouldn’t like to come back to bed with me and that we could turn on the TV or listen to music. She chose music. It took a while for us to get back to sleep, but we did and slept until almost 7:00 this morning.

She wanted to go to Lowe’s for more plants. We did so around 9:00. Right now she is outside planting them. It is cooler this morning. I will let her stay out as long as she likes because I feel it is her therapy. Then we will go to lunch. I hope the depression goes away before evening.

Posted on

Feeling Good

The past week has been good. More specifically, Kate has been much less irritable. Indeed, she has shown hardly any signs of irritability. It hasn’t been just the lack of irritability but genuine expressions of affection during the week. Even as I say this I have to add that it is not as though she doesn’t regularly express affection. It is that I have seen her irritability with me replaced with more affectionate responses.

The interesting thing to me is what a difference it can make in the feelings of a caregiver. It has enabled me to experience less frustration and derive more enjoyment of being with her. Even moments when I needed to encourage her to get ready for us to be someplace have been dealt with more like pre-Alzheimer’s days.

Yesterday we both had an affectionate experience at the same time. We were in the car driving home from Lowe’s. I turned on a CD by Ronnie Milsap. He was singing “What a Difference You’ve Made in My Life.” I have heard this song many times in the past, but for the first time I thought about our relationship and what a difference she has made in my life. Then she said (without my saying anything to prompt her), “You know, that ought to be our theme song.” I told her I had been thinking the same thing. We then talked about the coincidence of our reflecting on the song and our relationship but had never done so before.

To me it is clear that Kate’s Alzheimer’s affects both of us in ways that are directly obvious to others. I have found another song sung by Linda Eder called “If I Should Lose My Way.” The line in the song is “If I should lose my way, please look for me.” I have taken that as though it were a message from Kate to me and that she is losing her way.

Posted on

Getting Tired

It has been a week and two days since we visited the Robinsons. Since that time, I have noticed more periods of time when Kate is tired. It seems to be most striking late in the afternoon and after dinner as well. Several times in the past week she has been ready to go to bed shortly after returning from dinner though I believe the earliest she has actually called it a day was 8:30. She hasn’t stayed up past 9:00 that I recall. Since she goes to bed that early she wakes up early but isn’ Continue reading “Getting Tired”

Posted on

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.