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.

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?”

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.

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.

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.

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.

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!!!


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.

Even in the most trying times, we still have special moments.

It is now 3:45. Earlier in the day, I wondered what the day might be like. I’m happy to report that it has gone very well. Because Kate was up early, we got to Panera for her muffin before having to leaving for my doctor’s office where I donated my bodily fluids in anticipation of my doctor’s appointment on Thursday. We were greeted warmly by our friends at Panera whom we had not seen in a couple of weeks or more. It started with the man who leads a Bible study group for a Baptist church. Then we had a brief chat with a friend who is a member of the group. After that it was a man I have mentioned several times before. He and his wife are part of a group of people from a nearby Catholic church who come regularly after morning mass. He had been asking everybody about us and if we were all right. Then as we walked out, the window washer greeted us and mentioned that people had been wondering where we had been. It was nice to have been missed.

On the way to the doctor’s office, Kate asked me my name multiple times as well as where we were. She didn’t, however, display any sadness over her difficulty remembering. (I am writing this at Barnes & Noble where she just asked my name.) That makes all the difference in the world in how I respond. I can more easily accept the loss of her memory than watching her experience the pain that periodically accompanies it.

From the doctor’s office, we went directly to lunch at Carla’s. Since that was my first opportunity to eat today, I did something I have wanted to do for quite a while. I ordered separate servings of their salted caramel gelato for each of us. (She just asked my name again.) We were both happy. Even more special than the dessert, however, was the time we had together. One time when she asked my name, I decided to remind her of some of the things we had done during our marriage. I started with some memories of Madison, Wisconsin, where I was a graduate student. I mentioned her job as a secretary in the English department, some of our closest friends, and the things we did. (She just asked my name again. This time she tried to repeat it but couldn’t. She asked again and couldn’t repeat it. The third time she got it and repeated it twice.) We spent the rest of our time talking about our experiences. Of course, I did most of the talking, but she had comments to make a long the way. Not being able to recall the details of the things I mentioned severely handicapped her ability to comment, but I was able to jog her memory at least in terms of a good feeling about our past together.

I wasn’t surprised that she was tired at lunch. After all, she had gotten up at least two hours earlier than usual. She said she wanted to take a nap when we got home. After brushing her teeth, she came into the family room and picked up her iPad. She lay down on the sofa. I already had some music playing. In the car, I had played a Willie Nelson album. She has always liked him, and she was particularly taken with his singing “Bridge Over Troubled Water.” I played it. Then I played another version by Don Shirley. She loved that one as well. That led me to try another song performed by different musicians. I selected “What A Wonderful World” by Louis Armstrong. I followed that with two other versions. Then I played the entire the entire album The Don Shirley Point of View.” This one is a personal favorite of mine. I enjoyed it even more knowing that she was enjoying it as much as I. When we came to the end of the album, I asked if she would like to go to Barnes & Noble where we are right now. We’ll be here another 45 minutes. Then we leave for our Tuesday night special at Bonefish Grill. It’s been a good day.

The Light is Dimming

Yesterday seemed like a short day to me. It was Monday and the day for the sitter. Kate got up a little earlier but went back to bed after her shower. It was just after 11:30 when she was ready to go to Panera. Knowing that Anita was to arrive at noon, I called her and asked her to meet us at Panera. I left the two of them for Rotary shortly after Anita arrived.

It was 4:00 when I returned. I had a few groceries to put up. Then Kate and I went to Barnes and Noble. She seemed to be fine. During the time we were there, she asked my names several times. At no time did she seem disturbed by asking. Almost 24 hours earlier, my friend Tom Robinson had asked in an email how long Kate could remember things. I told him that it was often just seconds. Her attempt to remember my name illustrated that. Two times in succession, I told her my name, and she couldn’t remember it.

We went to Chalupas for dinner. When we got out of the car, she said in a very serious, thoughtful way, “I want to thank you.” I asked what she was thanking me for. She said, “For everything you do for me.” I said, “That’s because I love you.” She answered, “I know.” At dinner, she again asked my name several times. As we walked out of the restaurant, she said, “You’re a good guy.”

When we got home, I played the last portion of the DVD I had played the previous night, the one with her father’s home movies. She watched them with interest but without saying a word. That’s unusual. She usually expresses her pleasure audibly when she watches them. When we finished, I told her I was going to take my shower. As I was getting ready, I noticed that she hadn’t moved from her chair and wasn’t working on her iPad. She was just sitting there with a sad look on her face. I walked over to her and knelt beside her chair. There were tears in her eyes. I said, “Tell me what’s wrong.” She said, “Nothing.” My immediate interpretation was, and is now, that she was thinking about how little she could remember. She didn’t ask why she couldn’t remember as she has done before. That made me wonder if she had recalled my telling her about her Alzheimer’s the day before.

After she said, “Nothing,” tears welled up in my eyes. I said, “I understand, and I am here to help you. Whatever happens, I will always be with you.” We hugged and gave each other assurances of our love. The light is dimming. I knew this day would be come, but I never envisioned the pain she might feel this late in her journey.

After a few minutes, I decided she needed something uplifting and put in the DVD of Les Miserables. That worked. She was immediately engaged. After my shower, we watched a while before going to bed.

At 10:30 this morning I have my labs before a routine doctor’s appointment on Thursday. Knowing that I wouldn’t get to eat until after that, I decided not to get up as early as usual. At 6:00, I decided to get up. As I did, Kate made a sound. I leaned over and kissed her on the cheek. She said, “Thank you.” I could tell that she was crying very softly. I decided not to get up. I moved closer to her and put my arm around her and gently stroked her shoulder. Neither of us said anything. In the darkness, I could see tears drop from her eyes. When she went back to sleep thirty minutes later, I got up.

It is now 8:08. A few minutes ago, I thought I heard the flushing of a toilet and went to see if she is up. She is. Since I need to be at the doctor’s office at 10:30, I was going to wake her about 8:45 so that she could go with me. It looks like I won’t have to do that now. I wonder what today will be like.

Sunday Night

I am always glad to report good news. That is appropriate for last night. After dinner, I suggested that we watch some of Kate’s father’s family movies that I had recently transferred to DVDs. If she were in charge of the Academy awards, they would have won multiple Oscars. She loved seeing films even though they had deteriorated significantly before being transferred to VHS sometime in the 1980s. I always find them interesting myself. Although her grandparents on her father’s side were gone when I joined the family in 1963, I knew most of her aunts and uncles. It is always interesting to see them in their early days with their children whom I also knew. Now almost everyone in the films except for a Kate, her brother, one first cousin, and a few second cousins have passed on.

We watched for more than an hour before going to bed. The movies really brought Kate to life. She was quite talkative even after we were in bed. I was happy that they gave her a sense of connection to her family. As her memories fade, she feels so isolated. She is disconnected from everybody. The movies, like her “Big Sister” photo book restore that family connection even if it isn’t long lasting. I think I will see that we watch more of the films in the future.

In addition to talking about her family, she also talked about our marriage and our relationship. I won’t say anything more about that. I have said it before. Just know that it is something she comes back to regularly. I think some of that occurs because her world is shrinking, and I am becoming an even bigger part of it. I am grateful that she is so appreciative of the things I do for her. I was especially touched the other night when she was so confused. As I was trying to comfort her, she thanked me and said, “You are so kind.” Last night, she took a line from my page when she was talking about what a strong relationship we have. Then she said, “Even if I don’t know your name, I know you. A name is not that important.” Given that she has a hard time remembering things, I was struck by the way she fed back to me what I have told her about not remembering my name. I felt we had had a good day, and we had.