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Feeling Better But Not Wanting to Get Out

I came home directly after going to the Y this morning. My purpose was to get here early enough that I could take Kate to Panera for a while before time for lunch. She was in the family room editing photos on her computer. The TV was on to MSNBC. I asked if she would like to go to Panera. She said she would but not right then. I told her to just let me know when she would like to go. Then I went into the kitchen where I checked and answered my email. After 45 minutes or so, I went to the family room to see if she were ready to go. She wasn’t there. I went into the bedroom and found her under the covers. She was sound asleep.

Just a few minutes ago she came into the kitchen still dressed in her sweat pants and shirt that she had slept in. She said she wanted to go to Panera. Noticing the time I asked her if she would like to go eat lunch and, perhaps, go to someplace else instead. She hesitated. Then she said she didn’t want to get dressed. I suggested that she wouldn’t want to go out in her sweats. She didn’t want to but agreed to change. When she came out, she was still wearing the same sweatshirt but had changed to black slacks.

A little earlier I had reminded her that we are going to a musical tonight. She said, “Tonight?” and looked like that was an awful idea. I told her I thought it was something she would enjoy.

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Can’t Sleep

I have always been a good sleeper, but in the past year or so I have had trouble. It isn’‘t trouble going to sleep. It is waking up early in the morning and not being able to go back to sleep. This is one of those mornings. I awoke at 2:59 and have not been able to go back to sleep since then. At 3:30 I got up, put my earbuds in and listened to soft music (a playlist that I created for Kate when she has a panic attack). Finally at 4:00 I just got up and decided I would write this post.

When I wake up like this I find myself thinking about all the different obligations I have. These are heavily focused on Kate. That has been the entire case this morning. When I say Kate, I really mean the two of us. This morning I have been thinking about the challenges of keeping her entertained. She seems to get so bored. I started thinking about the senior center where Mom and Dad used to go. I didn’t think of it at the time, but I am confident now that Dad was connecting with places like that to try to entertain Mom. Of course, it isn’tjust the person who has Alzheimer’s. There is also a focus on the caregiver. With the loss of our closest friends in town, I have had a fear that the two of us will become more and more isolated. While I am the more gregarious, Kate also enjoys being with people. I can see ourselves getting cut off from close social contact. We are not likely to be cultivating new friends at this stage of our lives unless we are very deliberate about it. That is getting harder as Kate’s condition deteriorates.

So what am I going to do about it? First, I am going to pursue more regular attendance at the Wednesday evening church suppers. I am also going to check into the senior center and explore what possible opportunities they have. In addition, I believe I will start participating in the Shepherd’s’ Center programs. Finally, I will start regular attendance at the senior’s’ luncheons at church. I am hoping those outlets will be good for both of us.

I also mindful that this is a short-term fix. As Kate declines, she will be less able to get out and be involved. What I will have to do is balance the benefit she may derive from the social stimulation with the frustration she experiences because she is not fully able to enjoy, understand, and participate in these activities. Inevitably, she will drop out, and I will be left to go on my own. I have to admit that as I consider these things I am experiencing fear about the future. We have gotten along so well during the past 5 years since her diagnosis. The inevitable reality is beginning to hit me.

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Morning in St. Thomas

Kate and I both got up about the same time this morning. It was the first time we had eaten breakfast in the main dining room as well as the first time we had eaten breakfast together on this trip. She seemed more rested than yesterday – an encouraging sign.

We went to breakfast as the dining room opened (7:30). We sat with a couple from British Columbia. We finished before 8:30. Kate was ready to get back to the room. The moment we walked into the room she got into bed. Close to 9:00, I went for a walk and returned just before starting this post. She is still resting in bed. My plan is to stay here until 10 or 10:30 or until she gets up. I thought we would get a taxi to the center of town, look around, have some lunch, and come back to the ship for the afternoon.

9:46 am

Kate is still in bed and hasn’t said a word since I returned from my walk. I will probably let her rest another 20-30 minutes before seeing if she would like to go into St. Thomas.

10:11 am

I just came back from another short walk around the ship. Before leaving, I told Kate I was going for a walk and that, if she wanted, we might get off the ship and have lunch in St. Thomas. She indicated that might be nice.

On my return I found her still in bed. Her eyes were open. I asked if she were comfortable. She indicated she was. I asked if she wanted to rest a little bit more. She said she would. She is very relaxed.

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Resting

I took Kate upstairs to the Lido for breakfast. She was very groggy this morning. She rested at the landing at each floor though we only had to climb 2 flights. Once upstairs, I felt the need to guide her through the breakfast process, showing her where the items are that she usually gets. She spoke very little. We took a seat by the window on the shady side. She didn’t speak throughout the breakfast except once in response to a question I asked. Late in the breakfast a steward asked if she would like something to drink. She said she would. As he left, she gave me a look as though I had disapproved of her getting the orange juice. I asked, “You seem to feel that I am disapproving.” She answered, “Why do you say that?” I went on to explain that my comment was based on her expression. She said, “I thought you thought I shouldn’t be getting orange juice so late in my breakfast.”

I asked her what she would like to do when she was finished. She looked puzzled. Then I explained that sometimes she liked to go back to the room to rest a bit before doing anything else. She indicated that was what she wanted to do today; so that is what we did. She got right into the bed and pulled the covers over her. I took a walk and have just returned to the room where she appeared to be sleeping. A few minutes ago she woke up. I just asked her if she would like to take her iPad up to the Observation Lounge and relax or if she would like to get off the ship and walk around the area. She hasn’t answered yet. She simply looks comfortable and not ready to move. I plan to let her do so as long as she wants. Then see what happens.

It’s been about 10 minutes. She finally spoke. She said, “What about my iPad?” I told her it was right beside me. She said, “Good.” She didn’t say anything for a moment. Then I asked if she would like it. She said, “yes,” and I gave it to her. She opened it and started working on a jigsaw puzzle. She is still in bed with the covers pulled up over most of her body. She is slightly propped up but not in a sitting position.

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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”

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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.

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Resting

About 30 minutes ago, we came back to the apartment after the morning lecture, lunch, and catching part of a band concert on Bestor Plaza. Kate immediately went right to our bed and is still there. I am about to leave for the Hall of Philosophy for the 2:00 lecture. Afterwards I will return to get her for a 3:30 presentation by Amelia Arehart who has flown the flight of the original Amilia.

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Couldn’t Sleep

Kate and I got to bed early last night (8:45). I knew I would wake up early. I just didn’t know it would be 3:30. I tried to get back to sleep but my mind kept thinking about Kate’s condition and the problem of her clothes and getting ready to go places. It makes me think that next summer life will be different for us. Since her diagnosis January 21, 2011, I have wondered how much time we have left when we can live a reasonably normal life. I am now seeing signs of the beginning of the end. I must admit that it frightens me.

We went in the pool around 6:30 last night. As we talked, she mentioned wanting to go to Ireland. We discussed doing that in early June 2015. Reflecting on that now, I am not at all sure that will work. If we go with a group, we will face the problem of needing to meet daily schedules that are likely to cause more panic attacks for her. If we go on our own, we face the challenges of travel from one location to another as I don’t think we can find a single location that will let us take day trips to all the places we would want to see. Being realistic, of course, it would be another trip like New Zealand in that we would go without any intention of seeing or doing everything. We could just find a place and stay there. I will do my research and come up with something.

We have often talked about staying at Chautauqua for two weeks rather than just one. Next summer could be the time. I had better look into that soon in order to get the accommodations.

I finally got up at 4:30. I figured that I could accomplish something rather than just lying in bed. It is now 5:05; so it is not far different from a rather normal waking time for me. I will probably shave and eat breakfast and then go for a walk around 6:00. That will still give me time to read the paper before we go to church.

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Good times at CHQ

We arrived at Chautauqua last evening just in time to walk to The Amphitheater for the night’s entertainment. A Swedish group performed the music of ABBA whose music was featured in the movie and stage production of Mamma Mia. We enjoyed it, Kate especially. I told her I had never seen her express the same degree of enthusiasm for the Knoxville Symphony.

We got to bed later than usual because the performance wasn’t over until nearly 10:00. This was three nights in a row. It was hard for Kate to get up. It was 9:00 before she got to breakfast. After breakfast, she went back up to the room to rest some more. I have noticed that over the past year or so she has been sleeping more. Usually that involves going to bed as early as 8:00; so the change in the schedule really affects her.

It has been a good day here. She has enjoyed herself but has been hot and is resting in bed right now. We had lunch with friends from Long Island and ended up spending most of the afternoon with them. I noticed that Kate gives some misinformation or fails to pick up on things in our conversations. I know this is one of those things that will only get worse.