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Very Confused

Kate rested for 1 ½ hours after Anita left. I woke her up for dinner. She woke easily and didn’t show any signs of confusion. That occurred in the car on the way to dinner. We only went a short distance to Chalupas, but she asked my name at least three times, perhaps more. As we pulled into the parking lot at the restaurant, I told her my name and said we had been married 55 years. That surprised her. She said, “We’re married? Are you sure?” I told her yes, that we had married in 1963. As I pulled into a parking space, she said, “Are we legal?” I told her we were. She asked, “Who did this? You’re gonna have to explain this to me.” I told her I would once we were inside, and I told her about our first date, the wedding and her preacher who conducted the ceremony.

I could see that she looked very puzzled. Nothing I had said seemed to make any difference except she had some familiarity with the church and the preacher. She asked what we had been doing all this time. I told her about the places we had lived, the birth of our children, and jobs. When I mentioned our time at the University of Wisconsin in Madison, nothing rang a bell until I mentioned the English professor for whom she worked. She always liked him. I should add that during all of this she didn’t express any of the anxiety I have witnessed on several other occasions. She was just puzzled and really couldn’t remember most of what I was telling her. Finally, she was getting far too much information. She asked me to stop. Then she asked, “Does anybody else know about this?” I asked, “This?” She said, “All this that you have been telling me.” I told her our children know. She asked how they would know. I told her she had raised them and learned about the things I had told her. She said, “I didn’t raise them.”

I decided to go in another direction. I said, “There’s only one thing that matters. That’s us. We know we love each other and that we’ve had many great experiences. She agreed.

As I pulled into our garage, she said, “I like all this.” I said, “You mean our house?” She said, “This is our house?” Once we were inside, she said she wanted to go to the bathroom and to brush her teeth. I could see that she was unsure of where to go. I told her I would show her the bathroom and took her there.

We are now sitting in the family room where she is going through the photo book that her brother Ken gave her. I had gotten it out to show her pictures of our wedding. She recognized the photos and the church parlor where the reception was held. That seemed to settle her, and she has been looking through it for about twenty minutes or so.

I don’t ever recall another instance in which she was so confused, but she seems all right now. I’ll see what happens as we get closer to bed time. I am going to play one of our musicals to see if we can end on a high note again.

My personal reaction to the situation has been less sadness than a resolve to help her in any way that I can. She really needs help, and she trusts me. After giving my explanation of our courtship and wedding, she said, “That’s what I like about you. You just say it straight out.” I’m not exactly sure what she means by that, but later she said, “When you tell me things, I can understand them.” I don’t think this is quite true, but I sense her trust in me and want to be a supportive as I am able.

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New “Firsts”

As you have probably noticed, I try to be alert to changes as they occur. Over the past few weeks, I haven’t had to work hard to find them. We’ve had several small, but notable (to me anyway) ones this afternoon. The first occurred as we drove into the garage at home after returning from Panera. I told her that I would be leaving for Rotary and the Y and that Anita would be with her while I was gone. She asked, “Is she the baby sitter?” I said, “Well, I wouldn’t call her that, but she is someone to stay with you while I am gone just in case you need something.”

Up until that moment, I had never referred to Anita or Mary as “sitters.” To me that sounded too much like “baby sitters,” and I didn’t want to offend Kate. Apart from using their names, I just said pretty much what I said above, that Anita (or Mary) is someone to stay with with you.” On a couple of occasions, she has indicated that she liked to have someone with her. I also thought she might be self-conscious about being with them at Panera, but that doesn’t seem to be a problem.

Before leaving for Rotary, Kate said she was tired and asked, “What if I want to rest?” I told her she should feel free to rest. She asked if she should rest on the sofa in the family room or on the bed in our bedroom. I told her should could rest wherever she felt most comfortable. She chose the bedroom. When Anita came in, I explained that she had lost some sleep last night and was resting.

Later, while I was at the Y, I received a call from Anita. She said that Kate had gotten up and seemed confused. Anita thought she might have had a dream because she said something about my mother and was a little teary. This seemed strange as my mother died in 2002. Kate asked about me. Anita thought she might want to speak with me. I asked her to put her on. She asked where I was. I told her I was on the treadmill at the Y. She seemed perfectly fine. I told her I would be home as soon as I finished. We said goodbye, and Anita got back on the phone. She said they were going to Panera.

On the way home, I stopped by Panera and told Anita that I would take her home. When we arrived, she said she wanted to rest. I told her I was going to be in the family room. She decided to rest on the sofa.

I wonder how much of her behavior is related to having lost a lot of sleep last night and how much, if any, is another sign of the changes that are coming our way. I guess I will find that out in the days ahead.

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A Schedule Gone Awry

If you read my previous post, you may remember that Kate rested for about two hours yesterday afternoon. That was after sleeping until 10:30 yesterday morning. Even though she had never had a problem before, I began to worry that she wouldn’t be able to go to sleep last night. We got to bed a little later. Kate was in bed at 10:00. I followed her at 10:35. Sometime after midnight, I heard her turn over and realized she was awake. I’m not sure that she had been asleep at all, but she was very wide awake and talkative. That led to a long conversation during which we both reminisced about our relationship, our children, her parents, our travels. These are all things that we talk about regularly. I don’t think there was a thing that was new including our agreement that we have been a very lucky couple.

Interlaced with the discussion were some of the usual questions about names. Early in the conversation, she mentioned how proud she was of our children. A little later, she asked if we have children. Then she wanted to know all about them. As she often does, she asked me to tell her where we first met.

Knowing that I was likely to be up early, I didn’t play as big a role in the conversation as I might normally do. I felt the need to get to sleep. Finally, at 2:35, I said something about going to sleep. She took the not-so-subtle hint and said she thought she would go to sleep as well. That’s the last thing I remember.

During our conversation, I had decided I would sleep late this morning. Habit got me. I was up at 5:35. I dressed for my walk, ate breakfast, and was out the door a few minutes after 6:30. I walked just over 4 miles and returned home at 8:00. To my surprise, I saw that Kate had gotten up. There are only a few times that she has gotten up that early in the past couple of years, and that was after a good night’s sleep. I was sure that she would sleep until I woke her for lunch. As it turned out, she was ready for Panera before 9:30. That is where we are right now.

The lack of sleep may be having an effect on her. She just asked, “What is your nome?” She knew that wasn’t right and repeated it. She still couldn’t say “name.” I gave her my name. Then she asked her name. Moments later she asked my name again. I just gave her my first name, but she wanted the whole thing. Then she said, “What’s my name again?” She asked where we lived. When I told her, she tried to say “Knoxville.” As she did with “name” earlier, she pronounced it in a funny way. All of this is not dramatically different from what goes on every day, but the look on her face and the way she is speaking makes me think she is more confused than usual.

Today is my Rotary day. That means the sitter comes at noon instead of 1:00. I like for Kate to get her lunch around 11:00 so that we can easily get back home in time to meet Anita. I have frequently had to call her and tell her to meet us here, but that won’t happen today. I suspect Kate is going to be tired. I’ll get her a sandwich in another twenty minutes. Then we’ll go back home. My guess is that she will take a nap.

After Rotary, I will go to the Y. That will keep me awake. I hope we will get our sleeping back to normal tonight.

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The Rest of Our Day

When we got home from lunch, we spent a couple of hours in our family room where I played three Rachmaninov piano concertos. Kate sat down to work on her iPad but was tired and decided to rest on the sofa instead. A little after 4:00, I began to be concerned that she might not be sleepy at bedtime. I asked if she would like to go to Barnes & Noble. She gladly accepted my offer.

She asked more questions in the car. She asked my name as well as those of her parents. Then she asked if we have children. After being seated at B&N, she asked, “Where are we?” At one point, she commented on how nice it was to have a place like this (B&N). She has said this once before. I’m not sure what prompted her to say this. She hasn’t said it about Panera or any other restaurant we visit.

From B&N we went to dinner at our favorite Thai restaurant. We always get a coconut soup as a starter and then one entrée. We’ve been getting the same soup for a couple of years or more. Tonight she was completely blank on the soup. She didn’t remember it at all, but she liked it as always.

Upon returning home, we finished listening to a radio interview from a Lubbock station. Our son, Kevin, was interviewed about caregiving and his work as a geriatric care manager. We were both impressed with how well he did. It wasn’t long after that when he called, so we were able to give him our impressions. After Kevin’s call, Kate asked, “Exactly, where are we?” I told her we were in Knoxville, Tennessee. She said, “So we’re close to Fort Worth.” I told her we were a long way from there.

Kate was ready to retire to the bedroom, and it was time for my shower. Before leaving the family room, Kate pointed her finger toward the back of the house and wave her finger right and left and asked, “Which way?” I told her to the left. She started to turn right when I redirected her.

She worked on her iPad for a while but has now turned in for the night. I told her I would be right behind her. We’ve had another good day.

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Our Day So Far

I went to the bedroom to check on Kate about 10:30 this morning. I met her in the hallway as she was about to enter the bath off the guest room next to our bedroom. That is where she fell out of the shower the other day. I stopped her and suggested she shower in our bathroom. I feel it is safer and have steered her toward it each morning since her fall. I walked her into the bathroom and showed her the towels I had gotten out for her. As I was doing that she said, “What’s my name?” I told her and then left her to shower.

We left for lunch right after noon. As we drove to the restaurant, she asked my name. In a few minutes, she asked again. She asked again at the restaurant. Then she asked her name. After that, she asked if we have children. That led into a lot of reminiscing about our family and our marriage. Earlier this morning, I had seen a picture of a couple dining in the early evening on the riverside in Prague with the Charles River Bridge lit in the background. It reminded me of our trip there more than ten years ago. I told her a story of our sitting on the patio of a restaurant near where our friends’ picture was taken. Each table had a cup filled with peanuts. I looked at the table beside us and saw a bird eating the nuts on that table. Kate didn’t remember it but got a kick out of the story.

Over the course of our marriage, we have discovered that many special moments occur serendipitously in ordinary situations. This was one of those times. She seemed to enjoy my recounting of some of our travel experiences. I enjoyed remembering those good times myself. For the first time in quite a while, she addressed me as “MM,” My Memory. I told her I was happy to play that role.

On the way home, she reached over and put her hand on my arm and said, “You know what that means?” I said, “I do, and I feel the same way about you.” Then she said, “And I don’t even know my own name?”

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Kate’s iPad

For a while now I have noticed that when Kate is looking for her iPad, she doesn’t say “iPad.” She says something like, “Where is my?” and then makes a motion with her hand. I hadn’t thought much about it. I felt she was just momentarily slipping on the word. On several occasions recently, she has asked, “Is there something I could read?” That seemed strange to me because she never reads. On these occasions, I have asked if she would like her iPad. She quickly says she does. This happened yesterday. For the first time, it dawned on me that she is having the same experience remembering the “name” iPad for her tablet in the same way that she is forgetting the names of people. As for me, she still retains an attachment to the iPad, but she doesn’t know what to call it.

This is just one more example how many things are dropping out of her memory. She is beginning to forget the locations of her toothbrushes. They have been kept in three different bathrooms because she uses all three. Sometimes she accumulates more of them in one bathroom than another, but I come behind and try to see that she always has some in each bathroom as well as toothpaste, of course. Yesterday she asked, “Where can I brush my teeth?” I took her to our bathroom.

She is becoming less assured of where to go when we come in the house at night. On several occasions, she has said, “I’ll follow you.” Last night, I stopped in the kitchen to get something to drink. Instead of going to our bedroom, she lingered around until I was going. I am sure that was because she didn’t know where to go. Each of these things goes along with other things like forgetting where and how to get ice.

I think I mentioned yesterday that she is having more trouble with her iPad. She usually asks me to help her when she can’t do whatever she wants, but sometimes I can see her working hard to solve the problem herself. I suspect part of that is not wanting to bother me, but I think it is also not wanting to acknowledge encountering the same problems over and over. Sometimes she just closes the iPad and has a forlorn look on her face. I know then to help her. Once the problem is solved, she goes right back to work.

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It’s amazing how quickly the memory comes and goes.

Yesterday morning I left Kate in the kitchen to take her morning meds. In a moment, she called, “Richard.” I went in to see what she needed. She pointed to the pills. That was her hand signal asking if she was to take them. This (asking if she should take the pills I had just given her) is not unusual. What I noted was that she very easily called my name. That has happened on a few other occasions. In each instance, it seems like it occurred when she needed something. I wonder if the extent to which she needs me helps to trigger my name.

Not long after that we got out of the car at Panera. She asked my name. Then she repeated it several times. It’s unusual that she is able to do that. After taking our table, she asked my name three more times. Interestingly, I don’t recall her asking another time yesterday. Of course, we had a sitter for four hours, but we did go to dinner together and spent the evening at home together as well.

At the last minute, I decided to have a more special meal and went to Emilia. We didn’t even split a meal as we often do. Naturally, we topped it off with a dessert as well. It was a nice change from our usual Friday night meal. It felt good to do something special.

When we got home, she picked up the photo album her brother had made for her. I looked along with her. That turns out to be a good thing since she doesn’t always recognize the people in the photos. Most notably, it’s pictures of herself that she seems to be unsure of, but it is also true of just about everyone else. Of course, all of us have changed over time. It’s not as though we still look the same. She thoroughly enjoyed  going through it and turned back to the beginning immediately after spending about thirty minutes the first time. As in the past, there are several pictures of which she is especially fond. One is the cover photo of her and her brother. The other is a picture of her and her mother. She is particularly attentive to her mother’s smile but also comments on the smiles of others including herself. It made for a nice end of the day. I didn’t even select a DVD for us to watch. We relaxed a little in the bedroom before turning in for the night.

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So, how am I feeling?

I am sometimes asked how I’m doing? I know the question is asked because people hear so much about the stress experienced by caregivers. As someone who has read a lot about dementia and caregiving, I am quite familiar with the dangers we face. One of the things I’ve learned is that over 60% of caregivers die before those for whom they care. As a result, I am very sensitive of the need to take care of myself as well as Kate. So, how am I doing?

I believe I am getting along quite well. Does that mean I don’t experience any stress? Not at all, but I do a lot of things to ease that stress. I just finished reading Support the Caregiver by David Davis and Joko Gilbert. In their book, the authors identify a variety of ways for caregivers to care for themselves. I was glad to see that I have used all of them. I’ve relied on three in particular. Exercise, reading, and social engagement (one of my choices for “Me Time”). How much time I have devoted to them has varied. For example, Kate’s sleeping late in the morning has put a dent in my social contact. Though our morning trips to Panera began for Kate, I found it has been just as important for me. Thankfully, we are still able to eat out and make it to Barnes & Noble in the afternoon. That is good for both of us. In addition, I get together for coffee with a friend every Friday and maintain an active email communication of two close friends from my college days at TCU.

Having less social contact in the morning and the number of desserts we are now eating has led me to increase my exercise. Previously, I was averaging just under 3 miles each morning. My new average is over 4 miles. Very quickly I dropped about 4 pounds that I had wanted to lose for several months. Of course, I could have given up the desserts, but I don’t want to look back some day and say, “I wish I had enjoyed more desserts with Kate.” It’s not just the dessert; it’s those moments of sharing one together. Since my reading is actually listening while I walk and at the Y, that has also increased my reading time. That’s an extra bonus.

Within the last 4-6 weeks, I have added another way to care for myself. I have begun to meditate. I had read so much about the benefits of meditation, I just had to try it. I’m not ready to say that has made a difference in how I feel overall, but I have found it very relaxing. Right now I meditate in the pool for 20 minutes after getting home from my walk. I was motivated to use the pool because I enjoyed cooling down after walking. It won’t be long, however, before the water will be cooler than I like. When that happens, I may sit on the patio. As the fall weather approaches, I will move to the family room.

One of the things I have learned is that there are many forms of meditation. I was influenced by a book that dealt with mindfulness, being mindful of one’s self as well as one’s surroundings. It would come as no surprise that I incorporate music with meditation. I have several albums of sacred music that are very peaceful. I always begin with my eyes open and take in what each morning looks like at the back of our house. The neighbor behind us has a dense growth of trees. That has sensitized me to the sometimes subtle, sometimes dramatic differences each day. Some days the trees are perfectly still. Not a leaf seems to be moving. This morning the trees were swaying in the wind. Although morning can be an active time for birds and squirrels, sometimes I see hardly a sign of either. During the last part of meditation, I close my eyes and listen more carefully to the music and the sounds of nature.

I find that I become very relaxed. When my timer goes off, it feels a little like waking up from a sleep. It’s a good feeling, and I don’t like to end it abruptly. I don’t hurry to get back inside. When I am back in the kitchen (my office), I continue to play very soft music for an hour or two. That is working especially well now that Kate is getting up later. This is becoming another of my options for “Me Time.” I don’t schedule anything in the morning unless it is necessary. I started doing that for Kate. Now I feel that works for me as well.

All of this is to say that I am mindful of the need to take care of myself and believe I’m doing a pretty good job of it; however, I still haven’t said how I feel. The answer is I feel good most of the time. I especially enjoy my time with Kate. I treasure each moment with her because I feel they are drifting away. I have sad moments. Those are usually the times when she is down, but they also occur when I see new signs of her decline. I am continually adapting to her being able to do less and less. At the same time, I have a sense of satisfaction that we have done the best we can to take advantage of our time together. That’s a good feeling. Just as important, I know that we will continue to enjoy ourselves. I hope that we will be able to do that a good while longer.

Let me conclude this post with something I read in Support the Caregiver the other day. The authors distinguish between being “sad” and experiencing “sadness.” They suggest having sadness is an “appropriate and healthy emotion for the loss of a loved one.” Being sad prevents one “from moving forward into a healthy and productive life.” I am not sad, but I do have moments of sadness. I believe the same is true for Kate.

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Our Day Yesterday

Sometimes Kate and I seem to move in opposite directions. As she sleeps later, I seem to be getting up a little earlier. Yesterday I was up at 5:00. That gave me enough time to have breakfast before leaving for my walk. I was still able to get out by 6:00 and took an unusually long walk, five miles. The past couple of weeks I’ve been walking between 4-4.5 miles. I walked a little longer yesterday when I got into two separate conversations with neighbors who also walk about the same time.

Kate and I spent less time together yesterday. I woke her up at 11:15 so that we could go to lunch together before the sitter came at 1:00. I had a scare while she was in the shower. I heard a scream and a thud. When I arrived, I found her lying on her back on the floor. She was unable to explain what happened. The shower was still on. She was wet and holding a towel. I plan to do what I can to get her to shower in our bathroom where we have a walk-in shower. That would be much safer. Fortunately, she was not injured at all and has not expressed any signs of pain so far. I’ll be eager to see how she feels this morning.

Because we were short on time, we went to Panera and arrived just after 12:30. I called the sitter and asked that she meet us there. There was no problem with the handoff to Mary. Kate was quite comfortable when I left. I finished my meal and went to the Red Cross where I donated platelets.

After I got home and Mary had left, Kate frowned and said she was glad to see me. I told her I had missed being with her. She said, “I got along fine. I just like to be with you.” A few minutes later, we went to dinner. We had a good time. She got our conversation started when she made reference to what great experiences we have had. Since she can’t remember them, I took the lead and filled in the specifics. I am glad she retains her feelings even though she doesn’t remember the details.

When we got home, I watched the PBS Newshour while she worked on her iPad. She was having difficulty. Over the past few days, I have noticed that she periodically forgets which icon to touch in order to open her puzzle app. This time, however, she wanted to look through the photos on her iPad but didn’t know how to do it. I set them up for her, but there were so many it was an overwhelming task. She gave up. I hope we are not approaching the time when she has serious problems working her iPad. That would be disastrous. That represents the only thing she does on her own.

I suggested that we adjourn to the bedroom and play the last part of Les Miserables. She liked the idea. That worked well, but we had finished by 8:15. I suggested that I put on something for her to watch while I took my shower. I selected Fiddler on the Roof. It seems to generate the most interest after Les Miserables. That turned out to be a great success. While I was in the shower, she called to me expressing her enthusiasm. Several times I heard her belting our “Tradition! Tradition!” I don’t recall her ever doing that before. After a while she was tired. I helped her get ready for bed, and she was asleep quickly.

I don’t try to count the number of times she asks my name, but I suspect it was probably ten times today. She tries so hard to remember, but I can easily tell that she never has it down even after I tell her three consecutive times. The good news is she seems to recognize me as her husband although I am never sure.

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A Follow-up to “The Light is Dimming”

I maintain a very active email correspondence with two college friends from TCU, Tom Robinson and Bruce Morton. Tom responded to one of yesterday’s blog posts that dealt with Kate’s recent changes. I am copying his message along with my reply as I believe it sheds a little more light on our present situation.

Email from Tom Robinson

Richard, I just read your blog, and the “Light Is Dimming” is, for me, the saddest one yet. I’m thinking it is for you, too. As you say about yourself, I’ll say, too: I did not realize that Kate would, being this far along, be saddened by her inability to remember. This is the first time I recall your writing about this, so it must be that it is the first time. Of course, maybe she was crying about something else. I don’t know. But I took it as you seemed to – that she was realizing she has a disease and that the loss of memory is not going to stop. It does no good for me to say so, but my heart so truly goes out to you and Kate. I was glad to see the later post where things were somewhat better. What would we do without music!!!

Tom

My Reply

Thank you, Tom. You are reading the situation correctly. The convergence of so many new symptoms as well as the increasing frequency of the old ones tells me Kate is declining more rapidly now. We may still have plateaus, but she is clearly reaching a new low. As I have conveyed and you understood, I had thought because she seemed to have gotten along so well up to this point that she would just drift away without realizing that she has a problem. That has been particularly true since she has been asking me about my name and her own name. She has done so without displaying any sign of being disturbed by it. Regardless of whether she sees her symptoms as a sign of Alzheimer’s or not, I can now see that she is indeed aware of her loss of memory and it disturbs her. 

 As I remind myself, let me remind you that we are on borrowed time. Because it has been 12 years since we saw the first signs of her Alzheimer’s, we could have faced the current situation several years ago. That doesn’t end the pain; it only helps me to put it in perspective. I remain satisfied that we have taken full advantage of the time we have had. I even believe that the way we have approached her diagnosis may have helped us get along for a longer period of time than would have otherwise been the case.

 This is not the end of our good times, but I expect to see more signs of change. It’s not going to stop. That is the nature of this disease. About 30 minutes ago, we arrived home after dinner. She left the kitchen for the back of the house. She came back to the kitchen rather quickly and pointed to the door to the dining room. I asked what she wanted to do. She said, “I don’t know.” I asked, “Do you want to brush your teeth?” It turned out she was asking if that (through the door to the dining room) was where she should go to brush her teeth. I walked her to the bathroom. On a couple of other occasions, she has been disoriented upon arriving at home, but that has been after dark. This time it was still daylight. It is difficult to watch this deterioration of someone you love who had been a fully-functioning adult with two master’s degrees.