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The Longest Time Kate Has Not Remembered Me As Her Husband

The past couple of days have been similar to a few other days this past week. Once again, Kate was up early. Shortly after getting to the bathroom, she said, “Who are you?” I gave her my name and told her I was her husband. She said firmly, “No.” I said, “I’m a friend, and I can help you with anything you need. She didn’t ask again until we were on the way to Panera around 9:00 when she asked, “Why am I with you?” I said, “Well, you’re my wife.” She gave me a look of astonishment and said, “What’s a wife?” I explained, but she was not ready to accept that we are married. I said, “Let’s say we’re very good friends.” That usually works, but it didn’t this time. She didn’t want to hear that either. At Panera, the subject came up again with the same reception. Except for her reaction each time I told her we were married, she acted very normally with me. Nothing would have suggested that we weren’t husband and wife.

At lunch, I said, “I think I might make you my girlfriend for life.” She was insistent that would not happen and told me not to say anything more. I didn’t until we were on the way home from dinner when she said, “Why am I with you?” as she had done that morning. I gave her a similar response and she did the same. I didn’t say anything more until she was in bed. I sat down on the bed beside her. She smiled at me, and I said, “I love you. Do you know how long we have been married?” She smiled again and said, “How long?” That was the first sign of recognition the entire day.

Kate started the day even earlier this morning. She was awake at 6:20 when I got up. I asked if she wanted to got to the bathroom. She said, “Not right now.” I told her I would be in the bathroom and to call me if she needed me. I had just gotten to the bathroom when she called.

She used the toilet and then asked, “What now?” She pointed to the shower. I hesitated a moment because it was so early. I knew she would want to go back to bed. Sometimes, however, she doesn’t want to shower. I quickly decided this was an opportunity I didn’t want to pass up. I told her I would get the shower ready for her. Before getting in, she asked, “Who are you?” When I told her my name and that I am her husband, she didn’t believe it. I told her we were friends. That worked.

After her shower, she wanted to lie down again. I turned on an album of cello adagios at a soft volume. I dressed and told her I would be in the kitchen and to call me if she needed anything. I asked if she wanted me to turn off the music. She said, “Oh, no. Please leave it on.” It was one of a number of reminders in the past few days of how much she enjoys music. It is now 8:30.

BREAK

It is now 10:15. Right after my earlier entry, I heard her say something. I went to the bedroom. She hadn’t called me. We spoke for a few minutes. She surprised me when she wanted to know who I was. I gave her my name and told her I was a friend and that I could help her with anything she needed. She didn’t show any signs of wanting to get up, but it also didn’t look like she was ready to go to sleep. I asked if she wanted to get up. She said she did but needed some clothes. I told her I would get them. She was surprised that I would know where to find them. I told her I knew a lot about her and that I knew her parents. She asked their names. Then she asked my name. I said, “Kate.” She recognized her name and asked for her full name. I said, “Kate Franklin” (her maiden name). I got her dressed without a problem. Even if she didn’t remember that we are married, she clearly trusts me.

The first real spark of life came when she reached the family room. She noticed all the usual things, the room, the flowers, the flowers on the patio, the back yard, and the photos. We spent about fifteen minutes just looking around as she enjoyed what she was seeing. When we started for the kitchen where I had laid out her morning meds, she said, “Don’t you hate to leave this place?” I explained that it was ours and that we would be coming back after getting her a muffin. She was surprised and happy.

We are now at Panera. She stopped working her puzzles and is finishing up her muffin. That means we will probably head back to the house shortly. We won’t be there long before going to lunch. She is happy. I am happy. I am optimistic about the rest of the day.

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My Thoughts on Kate, Movies, and Intuitive Thought Processes

Several days ago, I suggested that there are some aspects of a film Kate is able to appreciate without understanding the plot or exactly what is going on. Until a year and a half ago, I realized that she could still have feelings for the characters and their situations. That is true, but I feel I understand it more clearly since I read The Dementia Handbook by Judy Cornish. I’ve talked about Cornish’s description of rational and intuitive thought or abilities many times and won’t repeat them here, but I think they apply beautifully with respect to Kate’s response to movies.

Her rational thought processes simply don’t work very well, but the intuitive part of her brain is still alive and in some ways is more active now than before. The power of any movie comes from its ability to touch us by what we hear, see, and feel. Like other films the Ronstadt documentary is loaded with these qualities, and Kate enjoyed the movie.

There is one other thing, however, that I believe is relevant in explaining Kate’s response: the fact that the film is a documentary. Why should that matter? Here is what I think. Although Kate’s rational abilities are virtually gone, she retains a desire to know or to understand. I think this is true for everyone. Part of our intuitive nature is to make sense of (to understand) the world around us. We see this most easily with young children. They seem to be interested in everything.

Kate was an English teacher and then a librarian. Learning and education have always been important to her. She still believes it is important to understand things, but no longer has the ability to do so. She often asks me to help, but almost as often I find it difficult. That’s because my explanations generally rely on the rational abilities she no longer has.

The nature of a typical documentary is to present information about a subject, but it “packages” that information in a way that not only appeals to our rational thought processes but also to our intuitive ones. This approach to presenting information is more appealing to a wider audience than a lecture or reading an article or book on the subject though it may fail to include many details and subtleties of a more academic format.

Documentaries like RBG, Won’t You Be My Neighbor? and Linda Ronstadt: The Sound of My Voice are designed to reach an even wider audience than the typical documentary. They seek to be more entertaining by presenting their information with a greater emphasis on the qualities that appeal to our intuitive nature. I believe that is why Kate has enjoyed these three movies. She has a sense that she was learning while at the same time being entertained. I hasten to add that doesn’t mean that she would like every documentary designed for the mass market. We saw Pavarotti. She didn’t enjoy it, and I don’t know why. She likes opera and YouTube videos of him. I may have to see  it again to figure out why.

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The Past Two Days

Monday morning Kate got up early. I was glad because she was up in plenty of time to be ready for the sitter. She was more confused than ever. I’m glad to say that she wasn’t seriously disturbed about it. I wouldn’t call it an anxiety attack, but she was certainly puzzled. It was similar to what I can remember of movies with someone who is experiencing amnesia. This is hard to put in words, but she seemed in a deeper state of confusion and required a little longer to come out of it.

It began when she got out of bed and went to the bathroom. We went through what is becoming a regular routine. She asked about the picture of our daughter. When I told her she, she couldn’t accept that. I started to explain that she and I are married and have two children. That was too much for her. I gave up explaining things. I decided to let her senses go to work.

I took her by the hand to the hallway with the photos of her parents and grandparents. I showed her the picture of her mother taken around the time of her marriage. I told her who she was. She was taken with it as she usually is. We talked about her mother a few minutes. Then we went to the family room where turned on the soundtrack for My Fair Lady. I know she likes that and thought it might jar her memory.

I picked up her “Big Sister” album that her brother made for her. I showed her the cover photo. She didn’t recognize the two children. I said, “This little girl is Kate Creighton.” She said, “That’s me?” I said, “Yes, and this is your brother Ken.” I started to say more when she noticed the photo book of her father’s family. The cover has an ink drawing of the house in which her father grew up. I told her about the house and then opened to the first page of photos of her grandparents. Rather than reading the text, I just told her about her grandparents.

As we were getting started, she heard he song “With a Little Bit of Luck” playing in the background. She started moving her hand to the beat of the music and sang along with the lyrics of the title each time they came up. She asked me to stop talking about the photos for a minute so that she could listen to the music.

Between the photo book and the music, Kate started feeling more at ease. Before long, the doorbell rang. It was our sitter. I told Kate it was Cindy who was taking her to lunch. She looked puzzled. Then Cindy walked in, and Kate responded enthusiastically. That put me at ease. I was getting especially concerned about leaving her in such a confused state. I quickly gathered my things and left for Rotary. When I got home later, Kate was resting. Cindy told me that everything had gone well.

Yesterday was another day of ups and downs. Some of it was humorous. As I opened the car door for her after lunch, she said, “Take off your glasses.” I did. She said, “No, that doesn’t help.” I hope I can get through this without developing a complex about not being handsome.

The day started well. She was up early again. She did have one unpleasant experience. She looked at herself in the mirror and said, “I’m ugly.” I said, “I think you are beautiful.” This has occurred several times before, but her reaction this time was the strongest I have seen. The problem is her weight gain. She is forty to fifty pounds heavier than she was when she was diagnosed. Most of the time she doesn’t seem to notice the change. Twice in the past two days she has commented about drinking with only one straw instead of her usual two. She believes that will result in her drinking less.

We went to Panera but stayed only long enough for her eat her muffin. She worked on a puzzle while eating and got frustrated when she couldn’t go any further. She had completed all but one piece. She couldn’t see it because it was on top of the other pieces. Anyway, we went home where she got on the sofa for what I thought would be a short rest. Instead, she picked up her iPad and worked puzzles for the next thirty minutes before we left for lunch.

On the way home from lunch, we stopped by Target to buy candy for Halloween. That turned out to be a bad idea. I didn’t take into consideration that the candy is at the back of the store. That meant a long walk for Kate. She was ready to leave shortly after entering the store. We came back come where she rested in her recliner for almost two hours.

She went to sleep but woke up a short time before we went to dinner. I asked if she would like me to go through one of her photo books with her. She did. I pulled a chair beside her recliner, and we began. It wasn’t long before we slipped into a conversation about our lives together. We talked about our courtship and getting married. We also talked about our feelings for each other. It was a very tender moment. I recorded about fifteen minutes of it.

Before leaving for dinner she went to the bathroom. When she came out, I told her we were going to dinner and then to a musical performance at our local art museum. I helped her put on a different top that I thought would be more appropriate. Then I told her she looked beautiful. I followed that by saying, “Do you know that you are the most important part of my life.” She was unusually emotional and broke into tears.

All the way to dinner, she was concerned about being with other people last night. She said things like “I hope I don’t embarrass you.” or “I want you to keep me from doing something stupid.” I found it hard to believe that she would have remembered my telling we were going out after dinner, but maybe she did.

At dinner, she did something unusual. She wanted me to sit beside her in the booth rather than across from her as I usually do. I was glad to do that but concerned about her insecurity. We had a nice meal. By the time we were finished, she seemed fine. We went to the concert, and she got along fine. It was a “concert and conversation” with Peter Buffet, Warren’s son. Apart from being a musician, he and his sister work run the foundation established by his father. He spends most of his time doing philanthropic work, hence the reason he was here for United Way. I was amazed that Kate followed at least some of the things. I could tell by her reactions to what he said. She wouldn’t have gotten the details, but she understood isolated remarks. Afterwards, she said, “You’re gonna have to explain this to me.”

As we left the concert for our car, she asked where we were. I told her we were at the museum. She wanted to know the city. I told her it was Knoxville. In the car, she said, “Are we in New York?” I told her we were in Knoxville. She repeated variations of this question all the way home.

At home, she spoke quietly as though others were here. I told her we were the only ones here. She said, “Are you sure?” She was still confused about where she was, but she was happy when she went to bed.

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“Hey, What’s Going On?”

It was never my intention to write a new post every day; nevertheless, I have rarely missed a day since launching the blog almost two years ago. I have the impression that some of my readers have come to expect this. Thus, I worked my way into a self-imposed deadline of 9:00 each morning to post something new. Over the past week or so, I have missed at least two days. On other days I didn’t add a post until late (after 9:00 a.m.) in the day. I started this post at 3:00 p.m. yesterday and didn’t get very far.

So what’s going on? The answer is a lot, and I won’t be able to capture all of it. For the most part, nothing new has happened except that she has required more attention. My best writing time is in the morning, and she has gotten up early several times. Each time she has gone back to bed and rested a little longer. In those cases, she has gotten up for good earlier than I would normally wake her. We’ve made it to Panera two times since Saturday.

Part of the problem relates to the increasing difficulty she is having with her jigsaw puzzles. As a result, she spends less time with her iPad. That has a direct effect on how long we stay at Panera. It is similar at home. She starts to work on her puzzles. She needs my help. That demands my attention. It isn’t long before she wants to quit. Then she doesn’t have anything to do.

Her photo books have come to play an even bigger role in occupying her time. That also means occupying my time. I could, of course, let her look at her books by herself; however, I know that she can’t remember the people or the events surrounding each photo. In addition, she can’t read. I need to read for her and do it in a way that sounds like I am talking to her and not just reading the text. I enjoy doing this. I think of it as quality time together.

Another result of her not using her iPad as much is that she has been going to bed earlier. She gets frustrated with it and doesn’t want to do anything else. Going to bed is easy. She still doesn’t go to sleep right away. It can be well over an hour, but I believe that change has meant she wakes up earlier in the morning. On the whole, I have found her behavior and our daily routine to be more unpredictable. These changes effect the time to write about what is happening or to take notes for later. So that is why I my blogging has been less predictable than usual.

It also makes me wonder about the future. I am doubtful that Kate will become more predictable. Until she is much less active than she is now, I could have my hands full.

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All’s Well That Ends Well

As I was thinking about waking Kate at 10:45 yesterday morning, I heard her say something. It sounded like, “Are we going to get something to eat?” I was in the kitchen and walked to the bedroom where I discovered that she was both wide awake and cheerful. I said, “Good morning. I’m glad to see you. You look happy this morning.” She said, “I am happy and you are too.” I said, “I think we are both happy people. Maybe that’s what has kept us together so long.” She agreed. Except for her needing/wanting my help getting her up, she didn’t seem like a person with Alzheimer’s at all. There was no sign of confusion. That didn’t last long.

When got to the bathroom, she noticed a photo of our daughter Jesse. Kate loves this picture but never knows who the girl is. We went through our regular routine. She said, “Who is she?” I said, “your daughter.” She asked her name. Then she said, “She’s beautiful.” I said, “Just like her mother.” She said, “Who’s her mother?” When I told her, she was surprised and asked how that happened. I told her that she and I are married, and we had two children. This was one of those times she couldn’t accept that we are married, and I dropped the subject.

After finishing in the bathroom, I got her dressed quickly and easily. Everything was going well. Before leaving I said something that irritated her. I don’t know what it was, but I decided not to find out. She can’t ever explain. We listened to music all the way to lunch. Everything was fine when we got to the restaurant, and we enjoyed our time together while eating. Just before leaving, I misunderstood something she said, and she was irritated again. We listened to music all the way home. She was fine arrived.

She asked what she could do. I gave her two options: work on her iPad or we could look at one of her photo books together. She chose the iPad. I was a little surprised because she has been going directly to the sofa to rest. It was less than fifteen minutes before that was what she wanted. This was one of those occasions when she actually slept. She was asleep thirty to forty-five minutes.

Then she sat up and appeared very alert. It looked like she was going to get up, and I asked if she wanted to go to the bathroom. She said she thought she would walk around outside for a while. That was a big surprise. She hadn’t shown any interest in doing that for almost two years. She surprised me again when she said there is a man she sees working in his yard and she would probably talk with him a little. She was actually picking up on a memory from the past. In both our present and past houses, we have had neighbors who work in their yards a lot. Kate had often see them working, and they would talk a while.

I went with her. For the past year, I’ve had someone working to restore the flower beds after her excessive pruning of the shrubs. I took out eighteen that were dead or “beyond repair.” The weeds had also taken over. It’s beginning to take shape again, and I was eager to see her reaction.

Thankfully, we didn’t get too far. She quickly found a hydrangea and started pulling off the flowers and some of the branches. It is late in the season, so I wasn’t bothered by that. I was, however, concerned that she might start doing the same with some of the shrubs that are coming back. After a short time, she wanted to go back inside to rest.

When she was ready to get up, it was time for dinner. As we prepared to leave, she wanted to take several of her photo books with her. Something she said made me think she thought we had been visiting and were now leaving for home. I told her we were just going to eat and would be back soon.

She was quiet at dinner and didn’t seem to enjoy her meal. She had grilled shrimp and sides of fresh fruit and a cucumber, tomato, and feta cheese salad. I had a Greek salad with grilled shrimp. Knowing she loves shrimp, I asked if she would like some of mine. She said, “What’s that?” I picked up one and showed her. Then I noticed that she was putting scraps from her two sides on a paper napkin. I took notice because she usually puts them on the table.

Then she said, “When are they coming?” I said, “Who? I am not aware of anyone who is coming to see us?” She became irritated with me because she couldn’t tell me, and she thought I would know. As we talked, she became angry and spoke to me very sternly. She apologized for speaking to me that way. Then she started to cry. At this point, we were both finished with our meals. I tried to comfort her. Then I suggested we go home and relax.

When we got in the car, she apologized again. I said, “That’s all right.” She looked sad and said, “I might do it again.”

Once we were home, I turned on the TV to a concert of the music from My Fair Lady. I have discovered that she enjoys the music itself more than the movie. She loved it. When it was over, I played several scenes from the movie in which they sang songs she especially likes. We spent almost two hours doing this, and she was engaged the whole time. She was happy, and so was I. Music came to the rescue once again. It was a happy ending to a very strange day.

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Success With a Movie

Movies have always been an important source of entertainment for Kate and me. They were even more important during the early stages of her Alzheimer’s. It became increasingly difficult, however, for her to enjoy them because she couldn’t understand the plot or what was going on in the different scenes. That led me to become more careful in the movies I chose. I discovered that she could enjoy some movies if she liked the characters and they didn’t contain any depressive content. I focused on uplifting films.

Occasionally, I would try something that looked doubtful. Once in a while that worked. The best illustration is Darkest Hour. That would seem to be one she might not like. I knew, however, that she had always taken an interest in books and movies about World War II, especially those that dealt with the Holocaust. Although she couldn’t follow everything that happened, she was taken by it. At that point, she remembered Churchill and WWII. She understood the subject matter was serious, and she appreciated the acting.

After that good experience, I had a series of failures; however, I struck gold with RBG (saw it twice) and Won’t You Be My Neighbor? (saw it four times in four weeks). Two days ago, I received an email from our local arts theater that Linda Ronstadt, another documentary, was opening this weekend. I read a little more about it and learned that it is a “feel-good” movie. That cinched it for me. I really hadn’t followed Ronstadt’s career, but I had two of her CDs, ‘Round Midnight and Canciones de mi Padre and was always impressed with her success across so many musical genres.

I still had some concerns about how Kate would respond. I knew she wouldn’t remember Ronstadt although she has enjoyed Round Midnight for years including the past week, but I thought it might be worth trying. I’m glad I did. Kate enjoyed all of the film but was particularly moved during the last part when it dealt with her Ronstadt’s Parkinson’s. At that point, she put one arm around mine and held my hand with her other hand.

As we walked out, she said something she almost always says when leaving a movie, “you’re gonna have to explain this to me when we get home.” She couldn’t grasp what was happening, but she enjoyed the movie anyway. How do I explain that? I’ll try to do that in my next post.

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Getting Along

Over the past week, I’ve had several experiences that remind me of how difficult it can be to care for someone with Alzheimer’s or some other form of dementia. I have tried not to dismiss the challenges that I have faced, but my experience has been different. Kate and I continue to enjoy ourselves even in this last stage of her Alzheimer’s. I sometimes feel awkward about saying this because I know so many others are pulling their hair out.

I’ve reflected a lot on what makes our situation so different. I receive a lot of credit from other people, and I do believe I have done a good job caring for Kate. On the other hand, I don’t believe there is any one thing that explains why we have gotten along so well. Most of it is simply luck.

In a conversation with another caregiver yesterday, we compared notes on how we were adapting. She experiences far more frustrations than I do. When I learned more about her situation, I could see that I would probably be as frustrated as she if I were living her life. It was clear to me that it is easier to care for Kate than it is for other people with Alzheimer’s. She retains a kind disposition and has a sense of humor that helps us. A couple of days ago, I rushed her as I helped her dress. She told me to wait a minute in a very stern voice. I said, “I’m sorry. I’m bad about that. I’d better be careful or you might fire me.” She said, “If I could, I would.” I paused a second before responding. She laughed and said, “I gotcha on that one.” We both laughed and continued getting her dressed. This kind of thing occurs quite frequently every day.

It’s not just humor that gets us through things. We are both “pleasers.” Neither one of us wants to hurt the other. Of course, sometimes we do. She is very good at letting me know when I do something that bothers her, but she usually does it in a kind way. After she tells me not to do something, she often says, “But you are getting better” or “I know you mean well.” These may seem like little things, but they work for us.

On another subject, we had a good experience at Casa Bella on Thursday night. This was the third night since the death of the man with whom we have shared a table for the past six or seven years. Each of these times several members of his family have sat at the table in support of his widow who seems to be adjusting well. We were seated at a long table with ten other people. I was concerned this might not work well for Kate, but the conversation broke into smaller groups. We had a good time, and she especially enjoyed the music.

I think we might go to a movie, Linda Ronstadt, this afternoon. That would be the first one in months and only the second one in over a year. It is a documentary and supposed to be a “feel-good” movie. The last two movies she liked, RBG and Won’t You Be My Neighbor?, were the same type. I hope this one works.

Have a great day. I plan to do the same.

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Decline, Sadness, and Dependency

Yesterday I saw the following tweet from another caregiver, Jennifer Fink, who has a podcast called “Fading Memories.”

Watching Mom decline & lose the person she was is a constant source of low grade grief. That’s why support is crucial for #caregivers. I get a lot of advice & inspiration from my #podcase guests. I hope sharing that helps all of you.

I wrote a reply in which I agreed that the hardest part of caregiving for me is just that, watching Kate’s decline. I went on to say that I have been sustained by the knowledge that she needs me. That has been especially true the past two days.

On Wednesday, Kate was especially warm and friendly to our sitter when she arrived. It appeared that she thought Cindy was a long-time friend whom she hadn’t seen in a while. Kate was lying on the sofa and got up to give her a big hug. I chatted with them a few minutes before leaving and was happy to see that didn’t seem disturbed when I left.

When I got home, the situation was different. I heard the two of them talking as I walked in. Cindy said, “There he is.” Kate had been asking about me. She beamed when she saw me but wasn’t very emotional; however, after Cindy left, she told me how glad she was that I was back and that she feels better when we’re together. This is not unusual. She has expressed this feeling many times, but now I sense a deeper recognition on her part that she is very dependent on me.

Yesterday afternoon, we went for haircuts. I helped her out of the car and was holding her hand as she stepped out. In a second she looked afraid like she was lost. I said, “Are you all right?” She said, “I looked around and didn’t see anybody I knew and didn’t know where you were.” She was almost in tears but made a quick recovery as she realized I was with her. It surprised me because it happened so suddenly, and I was holding her hand the whole time.

After finishing with Kate, the stylist walked Kate to the front where I was waiting. I got up to meet her. She hadn’t seen me yet and was peering all around looking for me. When she saw me, she broke down in tears. I walked to her and gave her a hug as she cried. Then, talking to the stylist, she said, “I wouldn’t want to live without him.” (I don’t know that I mentioned it before, but sometimes I sit in a chair next to her as she gets her hair done because she has been uneasy.)

Something that is a bit more typical occurred this morning. As I was finishing breakfast, I heard her say something. I got to the room as she started to sit up in bed. She wanted to go to the bathroom, but first she said, “Where am I?” This began a twenty-minute period during which she asked that or “Why am I here?” multiple times. When she asks, I always tell her the truth even though she has difficulty believing it. I feel that telling her something else could be just as problematic. I am going to think of a way to redirect her attention. That may be the best way to handle this.

I ended up showing her a picture of her mother and taking her to the family room to see if anything would jog her memory. She liked what I showed her, but it didn’t make her feel any better. She asked what she “should do now.” I told her she could go back to bed. That was exactly what she wanted to do. I asked if he would feel better if I brought my things to the room and stayed in the room with her. She said, “Oh, yes. Thank you.” I put on an album of cello adagios, and she has fallen asleep.

Often there is little I can say to comfort her. I think just being with her and talking in a comforting tone of voice works better than anything else.

These experiences have an impact on me as well. They remind me that I am her “security blanket.” I think of that as a challenge, something to live up to, and that overrides any sadness I might feel.

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A Repeat of the Previous Two Days, But . . .
I look at yesterday as another good day, but I have to qualify my judgment. It was good in terms of Kate’s and my relationship. It was not good in terms of the increasing signs of her decline. The past three days have involved a variety of symptoms that signal that she is changing. Let me give you a sense of what the day was like.

Because she had lost sleep night before last, I let her sleep a little longer yesterday. When I went to wake her, I found that she was already awake but didn’t want to get up. My sense was that she responded like a person who was depressed. It wasn’t that she felt a need for sleep but that she just didn’t want to face the day. That is something I have observed on a number of other mornings in recent weeks.

She didn’t remember who I was, but she was cooperative when I invited her to lunch and told her I would help her get ready. Like the day before, she didn’t show any “spark” or sign of enthusiasm until she walked into the family room and saw her flowers. We enjoyed music on the way to lunch. When we arrived at the restaurant, she seemed fine in terms of her mood. She displayed no sign of depression and had a good time at lunch.

She wanted to rest as soon as we got back to the house. As she did the day before, she went to sleep. That has not been typical for her. Not only that, but when she awoke after at least an hour, she didn’t want to look through her photo books or anything else. She just wanted to continue resting. Like the day before, she was very relaxed and peaceful. She was content with no sign of worry. She was “at home.” We spoke for a few minutes. Then she rested but didn’t appear to sleep. Later I told her I wanted to show her something. I didn’t tell her what, but she agreed to look. It was a slide show of photos taken during a trip we took to Bruges and Amsterdam. I was particularly interested in her seeing these photos because there were so many taken at Keukenhof Gardens. I knew that she would enjoy the beauty of the floral displays, and she was. The problem was that she was still tired and wanted to stop after a short period of time. She didn’t go to sleep but rested another forty-five minutes before I got her up for dinner.

At dinner, she displayed more confusion. It began with what is becoming commonplace. She had trouble determining where she was to sit even though I was standing by the seat and pointing to it while I said, “You can sit right here.” When our server brought the bread, she didn’t know what it was or how to eat it. I buttered several slices and put them on her bread plate. Instead of picking up a piece of bread and taking a bite, she used her fork to pick it up. It was awkward for her as she tried to put it in her mouth. I suggested she try picking up a piece with her hand, and she did better. When the meal came, she didn’t know what the rice was, but she liked it as always.

After getting home, I asked if she would like to work puzzles on her iPad while I watched the news. That sounded good to her. It wasn’t long before she was stumped. I tried to help, but that came down to my actually putting the pieces in place for her. She tried another one but was frustrated and wanted to get ready for bed.

I turned on the debate as I prepared to take my shower. Then I asked Kate if she would like me to turn it off. She said she would like to listen a while. She didn’t watch, but she was still listening when I got out. I know she doesn’t know any of the candidates and she couldn’t understand what they were saying. I think she just found it a satisfying distraction. When I went to bed, she was almost asleep. She was very relaxed and seemed to know me.

As I reflect on the past few days, I have thought about two other friends who had spouses with dementia. I had been with them and their spouses less than six months before they died, only a few weeks for one of them. In each case, I was very surprised when they passed away. I had no idea when I saw them that they were so close to the end. Wayne Abernathy called me on Saturday. We had a long conversation during which he talked a lot about the last few months of his wife’s life. He saw it as a time when his wife simply slowed down. As he talked about his experience, it made me wonder if Kate might be at the beginning of this same stage.

I also thought of our friend Nancy Hardwick who lives in Dallas. Her husband died a few weeks after we had dinner with them in 2017. He, too, slowed down after we left. He began to sleep more and said to her, “You know I’m dying.” He was gone in less than three weeks.

I don’t pretend to know what lies ahead. I know that Kate’s mother lived with us almost five and a half years with minimal ability to speak or get around on her own. I don’t want Kate to do the same. I am coming to that place I have heard other caregivers talk about. There is a point at which you believe it is better for the one you love to die than to live. I’m not there yet. For the first time, however, I am beginning to think seriously about her passing and hoping the end will come in a way that is similar to that of Wayne and Nancy’s spouses.

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Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.