Posted on

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.

Posted on

Fighting Colds

A little over a week ago we both came down with colds. That has captured our attention since then. Although Kate has had a more serious cold, I have also taken longer to come back than I normally do. It is a little difficult to assess how her Alzheimer’s has affected her behavior during this time. What I can say is that she has been more vocal than usual. By this I mean that she has moaned and groaned a lot as well as expressing vocal sighs and “ohs” during coughing bouts and other moments when the congestion in her throat and nasal passages increases.

Her typical Alzheimer’s symptoms have continued, but I have paid less attention as my focus has been on treating my cold. I have been drinking water all day each day. On Tuesday (2 days ago) I received 2 new SONOS wireless audio speakers. This made for a good time to set them up in the family room (less than an hour) and listen to a variety of music from my own CD collection as well as streaming from Amazon and Pandora. Yesterday I ordered a subwoofer to add to the system. It should be here by Tuesday or Wednesday of next week.

It has also been a good week to gather income tax records for our accountant. I am pleased that I have assembled 90% of what I need. I still haven’t received everything.

The one thing I have noticed today is that Kate sounded unusually annoyed with me. It occurred around the time we were to go for our haircuts. I think this is a holdover from the times when I have rushed her. It seems that every time we get ready to go someplace, she seems to be annoyed.

Posted on

“I’m So Frustrated With Myself.”

Earlier I neglected to report that as we were pulling out of the garage to go to lunch, Kate said, “I’m so frustrated with myself.” This was after several things she had done as she was getting ready to leave. I said, “I know you are frustrated.” Then I asked her if she would like to talk about it. She said no as she always does. She just doesn’t like to talk about her Alzheimer’s.

A few minutes ago as she was coming into the bedroom for the night, she said she wanted to thank me. She said she was falling apart and appreciated my taking care of her. I said, “I know you’re frustrated. I want to help you.” She said, “That means a lot, that you want to do it, and I know you do.” When she says something like this, it makes me want to do all the more to help her. On the other hand, I can find it frustrating myself when she won’t let me help. For example, I wanted to give her a Benadryl this morning. She asked if it would make her sleepy. I told her it would. She didn’t want to take it. This afternoon she has been having more trouble with her nose. I told her I was going to give her a Benadryl before she went to bed and that I wish that I had gotten her to take one earlier. She agreed, but earlier she didn’t want to take it. It is hard to know what to do, when to push and when to back away.

Posted on

A Day of Confusion

Kate and I are both trying to recover from colds we got late last week. She got hers about 2 days later than I, but hers was more severe. Sunday (2 days ago) was very hard for her. She moaned and groaned very audibly. She often does this anyway, but this was much louder and more intense. She was miserable. Fortunately, today has been much better though as I write this post, she is saying, “Oh, Oh, Uh . . .” She sounds as those she is in serious pain. I am hoping tomorrow is closer to a normal one.

By that I mean our “new normal.” Given Kate’s decline, our normal is quite different than it was even 3-6 months ago. Today she has experienced several moments of confusion. This morning, for example, as we were getting ready for lunch, she said she was going to get her clothes and take a shower before leaving. In a few minutes, she came back to the bedroom where I was dressing and asked, “Did you say you laid out my clothes for me?” I told her that I hadn’t. This was apparently one of those occasions when she thought I had told her something but hadn’t. I can’t remember them now, but she mentioned 2-3 other things that she thought I had said.

This afternoon we went to her dentist to pick up her new night guard. She had lost the other one a while back and has been using a temporary one since a week or so before we left for our cruise in January. While she was with the dentist, I went over to Starbucks for a cup of coffee. I got a call that she was ready. When I walked in the door, I walked over to Kate and planned to leave. Kate told me that the dentist was going to come out and explain something. We waited about 10 minutes. Finally one of the women behind the counter called to us. I told her we were waiting on the dentist. She told me that Kate was all finished and that we were free to go.

Shortly after returning home from dinner this evening, Kate called to me. She said, she had left her night guard at the restaurant. She described to me how she had taken it out of her mouth, wrapped it in a napkin, and put it on the table. She just knew that it had been picked up and thrown out as trash. I called the restaurant to see if our server might have found it. She had not. I told them we had just picked it up this afternoon and that it cost almost $600. The person on the phone said they would be happy to look in the trash. Before I could answer, I could hear Kate calling to me that she had found it. It was in its container. I suspect this is only the beginning of many such occurrences.

Posted on

Still Have Good Times

Yesterday and today I sent an update to our children as well as a couple of close friends. It was a more negative update than I have written prior to this time. I feel a need to note that we can still have good moments. It has been a cold day. I fixed a fire this morning, and we sat in front of the fireplace until lunch. I was working on my computer and she on her iPad. Then we went to Applebee’s for lunch. Our favorite server took our order. We always chat a little with her. Other employees are also familiar with us and greeted us warmly when we entered. We enjoyed our meals and had a very pleasant time together. After eating we dropped by Walgreen’s to get a few things,

I got an email reply from a friend whose wife also has AD. He suggested that I look into Kate’s medications and make an appointment with a neurologist. As I have done for the last 3 doctor’s appointments, I plan to write an update for Dr. Reasoner, Kate’s doctor. In addition to giving her an update, I plan to address the medications and the neurologist. In particular, I have wondered about the need for Kate to continue with her Prempro that is supposed to address her hot flashes.

I have never felt the need for a neurologist before. The problems we have encountered have appeared to be the expected ones. We have been able to live fulfilling lives. Kate’s current status is causing me to reconsider. I am aware that Sharon Billings regularly used a neurologist. Virginia and Ken also use a neurologist. I still am not convinced that this is all that important, but I would hate to discover that I could have prevented a problem by seeing one. One of the reasons that I have not wanted to pursue one is that Kate does not like to focus on her illness. This sounds like devoting more attention that she would like.

Posted on

Communication Issues

We are back from PEO and lunch. As I we got close the  home where today’s meeting was held, Kate spoke my cell phone number. It was not correct; so I corrected her. Then I said maybe I should write it down. She said that would be a good idea. It turned out that I didn’t have anything to write with; so we rehearsed the number several times. She also asked me what to say if someone asked her about our cruise. I told her to say, “We went on a Caribbean cruise.”“She liked that. I felt bad for her because she has never felt the need to ask my number before. In addition, her asking about the cruise suggests to me that she continues to be alert to the fact that she is less able to remember things. I know this must create a good bit of stress, discomfort, and, possibly, fear.

Shortly after 11:00, she called me to say she was ready to be picked up. I was at Starbucks. I said goodbye, and started to leave. As I was driving out of the parking lot, I received another call from Kate. She said she was sorry, but the program just began. I turned and went back to Starbucks where I waited for another call that she was ready. When the call had not come after 12:00, I decided to leave and head toward house where the meeting was held. I figured Kate would probably call while I was on the way. When I arrived, all the cars were gone. I went to the door and rang the bell. I discovered quickly the meeting had been over for some time but Kate had not called. The hostess said encouraged Kate to call me, but Kate said she had called me and that I was on the way. It was 12:50 when I arrived. My guess is that the meeting had been over more than an hour. It had been a long wait for her, and she was not happy with me. She thinks I said I was coming but didn’t. The truth is that the communication was unclear. I thought she would call me back when the meeting was over. She thought that I would come ahead.

Posted on

Short-Term Memory

This morning Kate has a PEO meeting. Last night I mentioned it and where it is going to take place. Before she went to sleep (early again), she asked if she could use my computer this morning. I told her she could but wondered if she had a problem with hers. She then said, “I guess I could use mine.” I believe she thought hers was not working. This has happened before.

This morning I reminded her about the meeting. That was early – around 6:00 a.m. At 7:15 after my walk, I told her that she had 2 hours until we leave. Around 8:00, she came into the kitchen dressed in her sweats. I reminded her when we were leaving. She asked, “Where are we going?” I told her. At 8:30, she was still not dressed. I told her I was going to get ready. She told me goodbye. When I told her she was going with me, she asked, “Where are we going?” I told her and reminded her that we would be leaving about 30 minutes. I checked on her at 8:50. She was still not dressed. Once again she had forgotten that she had PEO. Three minutes ago she called to me and came into the family room. She was carrying her laptop and her iPad in her arms. I asked if she thought she would need those. She looked puzzled and asked, “Where are we going?” I told her. She had forgotten yet again.

Posted on

The Rest of the Day

I started the morning early thinking about Kate and the future. I am now ending the day feeling better than I did at that time. However, not everything has been encouraging during the day. The good news is that when she got up this morning, she walked into the kitchen smiling. It was the kind of look I have grown accustomed to over the past 52+ years.

After my morning walk, I worked at the computer in the kitchen for a good while. Some of that was writing the earlier post today. Kate had looked at the memo pad I keep on the island and saw that this was the day for our houseskeeper to come and also the day we were going to visit her friend, Ellen in Nashville. I reminded her of these things. About 9:30, I thought I should check on her since I had wanted to leave shortly after 10:00. When I went back to her office, I discovered that she was still in her nightgown. She was sorting through and hanging up clothes that were on her bed. I think they must have been from the cruise. I told her we were going to leave in 35 minutes and that I needed to mail a couple of letters and would be back after that. I bumped into a friend at Starbucks and chatted a few minutes with him; so I didn’t get back to the house until almost 9:50. She was still in her nightgown. She asked how much time we had. I told her 10 minutes thinking that 15-20 would be all right. About 15 minutes later, she came out dressed for the day. I was surprised she was ready. She seemed a bit panicky. She said something about my being angry with her for being late. I assured her (unsuccessfully) that I was not angry. It was no use. She started crying. She told me she was trying so hard. She repeated that she knew I was angry and was just trying to be nice. What she didn’t know is that I had called our friends whom we were to meet at at 11:30 and told them we were running late but would be there. In other words, I wasn’t angry at all. In fact, although I often find myself frustrated, I don’t believe I ever get angry with her. I genuinely believe I am understanding of why she behaves as she does. That makes all the difference in the world. At any rate, we left in the car with her feeling really bad about making me angry. We didn’t talk the entire way to Nashville. I put on a playlist of music I have created just for moments like these. I have used it quite a number of times. It played all the way.

After parking the car, we walked to the restaurant. Kate left her coat in the car, and it was windy and 41 degrees. I said, “Don’t you want your coat?” She looked at me angrily and said, “”No.” We hadn’t walked too far when she said she needed her coat. I gave her mine. Although I had a sweater, it was pretty chilly. When we got in the car after lunch, I asked her when she was going to give me back my coat. Once again, she looked at me angrily. I didn’t pursue the subject, and she wore the coat until we got home. By that time I feel sure she didn’t even remember that she was wearing my coat. She was in a good humor, however. At 7:50 p.m., she told me she was going to bed. I told her I loved her, and she said she loved me. She was relaxed and very comfortable in bed. All is well.

Posted on

Problem Sleeping

I woke up at 3:16 this morning and was unable to get back to sleep. I finally got up about 4:45. My mind has been absorbed with Kate’s deteriorating condition. I am working harder to keep her entertained. I find it both challenging and discouraging. For the first time since I have been keeping this journal I find myself recognizing that she is entering that stage of Alzheimer’s that people most commonly associate with the disease. She is still able to hide her illness from most people, but she is becoming more detached from life than in the past. She hasn’t gone to church in a couple of months. I passed up the past two symphony concerts because I knew she would not be interested. I have declined a couple of other engagements because I knew it was not her thing.

More importantly for me, her whole mood has been changing over the past 2 months. I don’t see any spark of joy at anything. She can get up for certain social situations. She did that in Miami. She displayed some of that on the cruise but not much. She just doesn’t seem to be happy. I keep looking for the right word to describe her. She is listless, forlorn, bored.

At the same time, she is also more irritable with me. She snaps at me when I haven’t done anything to justify her reaction. She sees this herself I am sure. I say that because she often follows such reactions by telling me she loves me or grabbing my hand and holding it fondly.

I also see more moments in which she has imagined things that haven’t happened. Late yesterday afternoon I walked into our bedroom, and she said, “I am so angry.” I asked her why. She said because someone had said something (I don’t remember what that something was, but she was specific.) about her mother. When I questioned her further, I learned that she thought I had told her about someone who had said this about her mother. I assured her that I hadn’t said anything like that. She was puzzled and finally said, “Maybe I imagined that.” She has had several of these situations in the past week.

Posted on

Back Home One Week

Now that we have been home from our cruise a full week, I feel even more strongly that it is easier for me to take care of Kate here than on a big trip like our trip to Switzerland last May or the cruise we just finished. This isn’t because her symptoms are any less. It is because neither of us has to think about as many deadlines. In addition, I think the fact that we are in our own home where there is a certain degree of comfort means less stress for both of us. In some respects this seems obvious. After all at any point in our lives, we find that we have more adjustment to changes while we travel as opposed to staying at home. On the other hand, I had thought that being on a cruise would be easier than it was because we (I) knew (1) the meals were taken care of and (2) that there were opportunities for many diversions to address Kate’s boredom and (3) the ship offered attractive places for us to relax. All of that is true, but her Alzheimer’s has reached the point at which none of these things seems to have great appeal. I have not contacted the cruise line to cancel our trip in May, but I intend to do so this coming week.

Here are a couple of experiences today that illustrate where we are at this point. Each Saturday morning I work on my Sunday school lesson. After taking my morning walk and checking email, I prepared myself to take care of my lesson. As I started, I heard her call for me. I went to the back of the house. She was heading my way dressed in sweat pants that a church friend had given to me because they the legs were too long for him. She also had a sweat shirt on over another shirt. This is the kind of attire that she typically wears when she is outside; so I made the assumption that she was on her way to work in the yard. Then she asked, “Where are we going?” I asked her if she wanted to go someplace. She said she wanted to go to Panera. I told her that would be fine and asked if she wanted to change clothes. She said, “No.” I told her I would need a moment to get ready. She said that would be fine and went outside. When I was ready (in a few minutes), I went outside to ask if she wanted to take her computer as well as her iPad. She said she would; so I went back in the house and got both for her. I also got cups for both of us.

After we had been at Panera for about 10-15 minutes, she said she was ready to go. She hadn’t even gotten her computer and/or iPad out of the case. I told her that would be fine, and we went back home where she immediately started working in the yard. At 12:30, I went out to get her for lunch. She was surprised at the time and said she would be right in. When she hadn’t come in by 12:50, I looked out the kitchen window and saw her sitting down on the ground working in the flower bed along the drive way. I went out again. It appeared that she never remembered I had been out before because she was surprised again at the time of day. She came in 10 minutes later.