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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.

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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.

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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.

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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.

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A Second Chance Comes Sooner Than Expected

As I noted earlier, Kate seemed to be fine this morning. It was late, but we got to Panera at 11:00. That gave us hour for her to have her muffin and for both of us to relax. On the way to lunch, something happened that all of us can relate to. We worry about things that never happen or surprise us when least expect them.

As we were driving, Kate asked, “Where are we exactly right now?” I’m accustomed to the question and told her we were on the road in the northern part of Knoxville. She said, “Is Knoxville a city?” I told her it is. Then she asked my name. I told her and told her how long we had been married. As always, she was surprised how long that had been. I mentioned our children. She wanted to know their names. After I told her, she asked again. She seemed more confused than she normally does.

We drove a little further, and, for some reason, I brought up the fact that we had visited Ellen last Sunday. She looked very surprised and said, “We did? I don’t remember that.” I said, “Yes, we did.” Then she looked perplexed and said, “I should have remembered that. What’s wrong with me?” Since we had had a similar conversation just last night, it caught me off guard. I made a quick decision to tell her what was wrong.

I said, “You may remember that some time ago, we learned that you have Alzheimer’s. That affects your memory and is why you have trouble remembering things. The good news is that most of the things we enjoy in life don’t depend on memory. We enjoy listening to music, going to Casa Bella for their music nights, as well as our local theaters, and spending time with family and friends. Not only that, but you have me to help you with anything you need to remember. I will always be with you for that.” She still looked a little puzzled, but she did say how good she felt knowing she could depend on me to help with her memory. By that time, we were arriving at the restaurant where we had a good lunch and a delicious dessert.

When we arrived at home, she asked, “What now?” I told her that we could spend a little time at home and that we had several options. I mentioned that we could look at some of our pictures from our 50th anniversary trip with our family to Jackson Hole. I also said I could put on some music, and we could relax in the family room. She saw her iPad and said she would like to work on it. For a while we enjoyed Tchaikovsky’s Symphony No. 6 as she worked on her iPad. Then she said she was tired and wanted to lie down on the sofa. I put on some softer music to play while she rests. I am finishing up this post. After that I am going to bring in the clothes from the dryer to fold and put them up.

At the moment, all is well. I am glad I decided to remind her of her Alzheimer’s. This  time it seemed like the right thing to do. Maybe that is because I had thought it through. She seemed to accept it well. At least, she didn’t indicate any concerns about the long-term implications. Perhaps that will never come up. If it does, I will continue to emphasize the good things that we will continue to enjoy and that I will cover the memory issues.

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Our Most Painful Moment

After coming home from dinner last night, Kate and I spent almost an hour in our family room relaxing. As usual, she worked on her iPad. I took the time to play a variety of music to see how she would react to a broader variety of music than I usually play for her. I (we) were having great success. That was followed by a very nice phone conversation with our son, Kevin. I think we may have talked almost an hour. When the call ended, Kate said, “Aren’t you proud of him?” I said, “Very proud.”

Shortly after Kevin’s call, we decided to get ready for bed. As I got up from my chair, Kate asked, “Where do we keep our clothes?” I said, “Let me show you.” This was the first time she has ever asked that, but it was consistent with other signs of confusion that I’ve observed recently. I took her back to the room where she keeps her clothes and helped her get a night gown. Then I went to take my shower, and she came back to the bedroom where she got into bed with her iPad.

Just before I got to get into bed, she looked up at me and asked, “What is your name?” She started to repeat it and then asked again. After I repeated my name, she said it. Then she asked, “What is my name?” I told her, and she said, “I don’t know why I am so confused.” This was the third time in the past few weeks that she has said this. The first time I told her she had Alzheimer’s. She told me she had forgotten she had it. The next time was during her first anxiety attack when she couldn’t remember who she is or where she was. That time I skirted the issue of Alzheimer’s and focused on calming her. At the time, I didn’t think there was anything to be gained by bringing up her diagnosis. I felt the immediate need was comfort.

Last night, I chose not to say anything about Alzheimer’s and seek to comfort her. This time, however, I was really torn between telling her about her diagnosis and not telling her. I said, “It is very common for us to have memory problems as we age. I think that is what you are experiencing. Whatever, I want you to know that I love you and will help you every step of the way.” She said, “That makes me feel better. I know I’ll get better.” I tried to avoid telling her she would get better and saying that whatever happened I would be with her. She said, “They say you shouldn’t rush it. If we just take it a little at a time.” We talked another 15-30 minutes. I lost track of the time. She repeatedly said she felt better knowing that I would help her. “I know it won’t happen right away. The doctor says we shouldn’t rush.”

Of all the things that might bother me in connection with caring for Kate, there is no question that seeing her suffer is far and away the most painful thing I can experience. I found this excruciating. Here she is 7 years and 8 months since her diagnosis and 12 years since we saw the first signs of her Alzheimer’s. She doesn’t know it is Alzheimer’s, but she truly knows that something is wrong with her, and it’s painful for her. I hate seeing this. Even recently, I had thought we might escape this part of the journey.

This experience and the earlier ones have caused me to reflect on the best way for me to handle them in the future. One thing is clear. I have been successful in addressing her immediate concern. In each case, I have been able to console her and make her feel better. I am still torn between being more honest with her about her Alzheimer’s and not. She is not the kind of person who wants to be deceived. She is the one who wanted to get the diagnosis in the first place. She even said that she was relieved with the doctor gave her the news because it helped her understand what was happening to her. Over the course of her illness, we have periodically talked about death. Both of us accept death as a part of life and don’t fear it or try to avoid conversations about it. In other words, she is not one to avoid the realities of life.

On the other hand, I believe in the importance of hope. I hear her, say things like, “I feel better now. I know you will help me. I’ll get my memory back. It just takes time.” Then I feel she has a hopeful approach that is healthy. I don’t want to risk destroying that sense of hope by telling her she has Alzheimer’s.

I’ve wrestled with this dilemma a good bit this morning. At this moment, I am leaning toward telling her but in a gentle way. In fact, I am thinking about utilizing what I have learned from Cornish’s book, The Dementia Handbook. Her main point is that we should accept the fact that the rational abilities of people with dementia no longer work the way they used to do. Instead, we should emphasize all of the things that they are able to do. Those are all things from which we derive direct pleasure through the experience of our senses. We have done just that throughout our journey, and I hope that we will continue for a good while longer.

Thus, I am thinking of telling Kate that her memory problem is a result of Alzheimer’s but that the good news is that we can continue to enjoy life the same way that we have done in the past – spending time with friends, attending musical events, theater and movies. In addition, I will be her helper when it comes to things that she needs to remember.

The counter argument is that we have been successful by emphasizing Kate’s intuitive abilities. It seems like trying to give a rational explanation runs counter to what she may need most, the knowledge that I will comfort her whatever happens.

I don’t intend to say anything until (unless) she has another episode like last night. Right now, she is up and seems not to have any memory of last night. I would have been very surprised if she had. Waiting to say anything will give me additional time to reflect on my decision. I don’t believe there is any way to determine in advance which is the right way to go. To tell or not to tell. That is the question.

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A Welcomed Rebound

I always like to report good news. That’s especially true when we have experienced a few bumps the day before. In every instance of the bumps, we have moved on to the next day as though nothing had happened. That was true yesterday.

Kate slept late, so we went straight to lunch. She was in a good mood, and neither of us acted as though life hadn’t been perfect the night before. Because I went to a Rotary benefit last night, we didn’t have a sitter in the afternoon. That allowed Kate and me to spend the afternoon together. After lunch, we came back home where I turned on some music, and we relaxed in the family room. I picked out a number of things that I thought she would enjoy and was successful. I have been pleased that she not only seems to enjoy music even more than she has in the past, but she also seems to appreciate a somewhat wider range of music. She certainly expresses her pleasure both audibly and visibly. Among the music I played were two pieces from Handel’s Messiah, “Hallelujah” and “Worth is the Lamb, Amen.” I don’t ever recall her responding so passionately before. It is a special pleasure for me to see her so engaged in music that I love as well.

We spent about two hours and then went to Barnes & Noble for another hour and a half before returning home for me to get ready for my dinner. I suggested to Mary that she take Kate to get her usual Friday night pizza. I also set up the Les Miserables DVD in case they wanted to watch some of it. When I got home, I was pleased to see that they were both engrossed in it. This was the first time that Mary had seen it and liked it. For Kate, of course, it was like seeing it for the first time. When Mary left, Kate blew her a kiss and thanked her. She was in great spirits.

Since Kate was enjoying herself so much, we watched the remainder before going to bed. This is a three-hour production. Kate and I usually watch it in three nights. Last night, Kate had watched the entire DVD in a single sitting, and she was literally moved to tears of joy.

Music has always been special to me. Attending live musical performances has been a special part of our married life. It is only recently that she has developed such appreciation for recorded music. That makes me happy. I play it all the time. If I’m at home, the chances are pretty good that music is playing.

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Kate and Her Puzzles

We’ve been at Barnes & Noble about an hour. I’ve been doing my things on my iPad. Kate is working jigsaw puzzles on her iPad. She hadn’t made a sound for almost the entire time we’ve been here. A minute ago, she broke the silence and said, “Fun.” She was expressing her feelings about working her puzzles. I know she must be having fun because she spends at least six hours a day working them – at home, at Panera, and at Barnes & Noble. This was the first time, however, I have heard her express her feelings about it.

I told her I thought she must enjoy it, that she spends a lot of time at it. She said, “Well, I don’t spend much time.” I didn’t argue. Then over a five-minute period she said other things about the puzzles. For example, she just said, “I like the colors,” “They’re not to hard. Well, some of them can be tricky.” Now, she said, “One of the things you know when you want to do something well is not to rush it. That is really true.” Earlier she had said something about liking not having any time pressure. I said, “Or telling you that you are doing it the wrong way.” She added, “Or I told you that yesterday.”

In the meantime, I am noticing that it’s been a while since she asked my name, and, not once, has the subject of my being or not being her husband come up.

We’ll be leaving here shortly. I have a Rotary dinner this evening. It is a benefit for Alzheimer’s research, and I will be making a few remarks. I changed the sitter’s schedule to come at 6:00 this evening. This will be the first time I have left her at night. I am optimistic this will work out well. My plan is for Mary to take Kate to get her Friday night pizza. That should help them pass a little of the time. The rest of the time they can relax at home.

I just asked Kate if she were ready to go. She said, “I’m just piddling. I just want to finish this one. . . Then the next one and the next one . . .” Then she said, “You had better just say when you think we need to leave. I said five minutes would be fine. She said, “Let me finish this one first.” I am really glad she has her puzzles.

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More Ups and Downs

Yesterday was a day of confusion for Kate. Once again, we had two bright spots that balanced the down moments. One of those came after we returned from her monthly massage. We went into the family room where I picked up the “Big Sister” album her brother, Ken, had made for her and asked if she would like to look at it. I was thinking specifically about the trouble she had been having remembering her family and thought this might jog her memory. It worked beautifully. I sat down beside her, and we went through the entire 140 pages. It brought back great memories. When we finished, she started over at the beginning. She must have spent a full hour and a half looking at the pictures and commenting.

It wasn’t long before it was time to get ready for another musical night at Casa Bella. The musicians, especially the male singer, have been longtime favorites for many years. They are a little younger than Kate and I, but they know the music of our generation. I don’t think there was a single number we didn’t know. It was another great evening.

After we were in bed and ready to go to sleep, Kate said, “What’s your name?” I said, “I’m Richard Creighton, and I am your husband. We’ve been married 55 years.” She said, “Are you sure? I don’t know you.” I assured her I was right, but she still wasn’t sure. She decided to test me. She asked where we got married. I told her. She was surprised when I mentioned the church. It was the one in which she grew up. She still wasn’t absolutely convinced, however, and looked a little suspicious. I told her I loved her. She almost always says she loves me. She didn’t this time. I asked if she loved me. She said, “I don’t know.” I reached my hand to touch her, and she moved it away. She was tired and wanted to go to sleep. She said, “We’ll talk about it tomorrow.” In a few minutes, I moved next to her and put my arm around her. She didn’t push me away. Neither one of us said another word.