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So, How is Kate Doing?


It can be difficult for others who see Kate to get a good idea of how well she is getting along. During a large portion of the day, she is in what I call her “neutral mood”, neither happy nor sad. That is typical when she wakes up in the morning and continues until later in the day. That is what other people see the most.

Her most predictable cheerful moments occur late in the day and after dinner when we get her ready for bed. Most people are surprised to hear that because they have heard about sundowning which often occurs among dementia patients.

Because her caregivers and I are with her so much of each day, we get a better view of what she is like. We spend much of our time with her in our apartment, where she is most at ease, at least late in the day.

Her cheerful mood begins around 3:00 pm, when we start getting her ready to go out for yogurt at one of the cafes in our retirement community. By the time we get downstairs, she usually changes back to her neutral mood. This is what other residents observe most often, but sometimes, they are rewarded with a big smile.

During the past six months or so, she has been sleeping a little more which I believe may signal a transition to a new stage within this last stage of the disease. That gives me less quality time with her than I had before, but there is also good news.

More frequently than in the past, she is waking up in a cheerful mood and seems to recognize me. That has been true for the last several days. Not only that, but she sometimes expresses more enthusiasm and laughter during her “Happy Moments”. That is especially likely as we put her to bed.

The other night after the caregiver left, we talked for more than an hour. Although I couldn’t understand most of what she said, the conversation felt natural and was an especially Happy Moment for me. I wish everyone could see what she is like in moments like that.

So, how is she doing? Well, that depends on the time of day and what is going on around her. Overall, I believe she is doing remarkably well for someone who was diagnosed with Alzheimer’s sixteen years ago this coming January and who has been in the last stage of the disease for almost six years. She is far beyond her life expectancy for someone with Alzheimer’s, and she has “Happy Moments” every day. I am grateful.

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Not Just a Happy Moment, But a Day Filled With Happy Moments

Regular readers of my posts will recognize the importance of “Happy Moments” in our lives. They are moments when Kate is especially cheerful. She smiles and talks much more during these moments, and that adds to the joy that we’ve been able to experience while “Living with Alzheimer’s”.

These usually occur in the afternoon or evening and, on occasion, off and on throughout the day. Yesterday was one for the record books. She awoke with a smile and talked. I try to take  advantage of moments like these and got in bed beside her. For an hour or so, we enjoyed ourselves while watching YouTube videos. It was a thrilling experience that continued the rest of the day.

Normally, something happens to stop moments like these. Then it can be hard for her to recover. That wasn’t the case yesterday. We had interruptions, but she always retained her cheerfulness and spoke with people who often don’t get to see or hear her like this.

Over the past two or three years, she has experienced a lot of Happy Moments, and although we can’t understand much of what she says, it is clear that she understands much of what the caregivers, residents, and I say and tries to respond appropriately.

We are very fortunate, and I am grateful.

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Improving at Stage 7 Alzheimer’s. Can it be?

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Like many other people, I’ve often thought the progression of Alzheimer’s involves the loss of one ability after another, and there is truth to that. Fifteen years ago, Kate was driving, active on her computer, and tending to her plants at our house for hours each day. Today, she can’t walk, bathe, dress herself, or talk in a way that we can understand.

What is amazing is that she has improved in important ways over the past two to three years. She is happier now and although mornings are her most difficult time of the day, she often awakes in a cheerful mood.

I frequently talk about her “Happy Moments”. These are moments when she is cheerful and often accompanies that by talking. I use the term “moments” because her mood comes and goes throughout the day. She shifts between Happy Moments and what I call “Neutral Moments”. That is the way she is much of the time; however, during the past week, she has experienced more Happy Moments than usual.

One of those occurred on Labor Day morning. She was smiling when I first noticed that she was awake. After giving her morning medications, she began to talk. I got into bed with her to take advantage of the moment. She said, “It’s good to see you.” That may not seem special, but it is for someone who doesn’t speak at all most of the time, and when she does, you can’t understand her.

She continued to be cheerful off and on throughout the entire day. We went for ice cream that afternoon. As I was about to put the ice cream on the table, she said, “That’s mine.” It was Labor Day, and a few minutes later, I said, “It’s so quiet today. They don’t have many activities going on.” Kate immediately gave a startled look that meant “Really?” Responses like this let us know that she follows and understands much of what I and others say.

Moments like these make it clear to me that all is not lost with Alzheimer’s, not even during the late stages. She is still able to connect with people, and it appears that she enjoys it. I think there are a number of reasons for her improvement. I’ll save that for another post, but I hope that our experience might be encouraging to other families with a loved one who has dementia. I am sure that Kate isn’t the only one who could improve at this point in the disease.

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An Amazing Day

For years, I’ve noted that mornings are Kate’s most difficult part of the day. I call this her neutral time. Typically, she is not cheerful. As she gets more stimulation throughout the day, she becomes happier. Her best time of the day is generally late afternoon and evening; however, a change has taken place over the past year or so. She occasionally wakes up earlier and with a smile, but it doesn’t usually continue all-day.

During the past few weeks, she has become more cheerful at various times of the day. Saturday was one of those days. It began early in the morning when I walked into the bedroom to see if she might be awake. Her eyes were closed, but she had a smile on her face. I walked over to her bedside and ran my hand across the top of her head as I often do. She gave me a bigger smile. She knew who was stroking her hair. Then she began to talk. As usual, I couldn’t understand much of what she said, but it was clear that she was happy and enjoyed talking. I wanted to take advantage of the moment and spent a good part of the morning next to her in bed.

We had a different caregiver that day. She had been with us once before, but it had been more than a year since we had seen her. I thought that might have an effect on Kate’s mood. I quickly discovered I was wrong. Kate’s cheerfulness continued throughout the whole process of getting her up. She even laughed a few times. That is saying a lot because she doesn’t like to be rolled back and forth to take off what she is wearing and replace it with her clothes for the day.

When I left for lunch, she was eating and still happy. Upon my return, I found her listening to the caregiver who was reading to her. She greeted me with a big smile. Then she and I talked for a while. She is often happy when I come home, but her facial expressions on this day conveyed that she was especially happy.

A little later, we went to a café downstairs. While Kate was eating ice cream, she and the caregiver talked as though they were longtime friends. That is very unusual. Normally, Kate is pretty quiet when we go out. Another resident stopped by to say hello and was amazed to see Kate so talkative. From there we went to dinner and then back to the apartment for the night. Kate continued her cheerful mood. She and I talked and listened to music on YouTube until she fell asleep. It was an amazing day.

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Mornings with Kate

Kate has never been a morning person and Alzheimer’s, Covid, and a stroke have made mornings the most difficult part of her day. I call this her neutral time. It’s a time when she is neither happy nor sad, but that seems to be changing.

Over the past year or so, she has experienced more “Happy Moments” in the morning. During the past few weeks, they have occurred even more frequently, and now I spend more of my morning time with her. We watch music videos on YouTube, and I often talk to her about the many moments we have shared during our marriage. She rarely speaks, but her facial expressions communicate that she enjoys hearing what I tell her.

These are also times when it is clear that our relationship remains strong. We like being together. Each of us retains the love that began during our senior year in college. Like so many other aspects of our lives, I don’t know how long we will have these moments. I do know that we were in the same position at the time of her diagnosis 13 ½ years ago. We simply decided to enjoy life and each other for as long as possible. That has served us well. I think we’ll stick with it.

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Our Life at Stage 7 Alzheimer’s

It’s been a month since my last post. This break is by far the longest I have had over the course of Kate’s Alzheimer’s. Most of those breaks have been in recent years. I attribute much of that to the fact that our lives have become more routine since Kate has required total care. That began after her hospitalization with Covid in November 2020. Her activities and behavior are more similar from day to day than they were before. That gives me less to talk about.

However, more than our routine life keeps me from writing as much. My life is much busier now than it used to be. Except for 2-3 hours a day when I go to lunch, run errands, meet friends, and attend activities in our retirement community, I am with Kate. Some of that time involves actual care but much of it is simply enjoying my time with her.

The most important thing that has happened since the first of the year is that Kate has steadily shown improvement. She has enjoyed many “Happy Moments” over the past few weeks. I have come to expect at least some of those every day.

Kate’s behavior regularly reminds us that she understands much of what other people say. Sometimes, her smiles and laughter suggest that she is enjoying the conversation around her. She knows far more than most of us are aware.

One of the changes that has occurred is her mood in the morning. Beginning during what I would call the middle stage of her Alzheimer’s, she often awoke confused or frightened. Over the years, the fright seemed to diminish, but she awoke in what I call her “neutral” state or mood. During that time she doesn’t smile, talk, or respond to what is said to her.

During the past five to seven months, Kate has begun to smile and talk far more in the morning. That has changed my schedule and is another reason I don’t write as many new posts. Now, I spend more of my morning time with her. I am writing this post sitting up in bed beside her. She has been in and out of sleep, in a happy mood, and talking a little. I just looked over at her. Her eyes were closed, but she had a big smile on her face. I leaned down and put my head on her shoulder, and she chuckled. That is a typical response when I express any form of affection. I love these moments, and we have many of them.

It has been 13 ½ years since her diagnosis and 18-20 years since we noticed the first signs of her Alzheimer’s. I am mindful that these moments won’t last forever, and I feel a strong desire to spend as much time as I can with her. We still enjoy life and each other. How fortunate we are.

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An Amazing Afternoon

As I have noted previously, Kate was hospitalized with Covid for eight days in November 2020. Prior to that, she was in the early stage of aphasia and also showed signs of losing her mobility. Her hospital experience exacerbated each of these symptoms. Five months later, we moved to a continuing care retirement facility. Although she never cognitively recognized the move, our lives were very different. A year later, she had a stroke.

Since that time, we haven’t had any other “bumps” in the road, and Kate has improved in noticeable ways. That has been especially true during the current year. This past week we experienced another “Happy Moment” for her and everyone she encountered.

It began at a reception following an afternoon concert.  One of the residents of our retirement community came over to talk to us. During the conversation, Kate surprised us by speaking to her. As usual, what she said was unintelligible, but it was great to see and hear her talking.

When that resident moved on, another resident approached Kate and asked her a question. This is the same resident I mentioned several posts ago who a few weeks ago had engaged in an extended conversation with Kate. We were especially pleased because this resident stops to visit with us almost every day when we go for ice cream. She is always seeking a smile or some audible response. Typically, Kate neither smiles nor talks to her. This time she received plenty of both.

From there, we went to the café down the hall where we got Kate’s ice cream. It wasn’t long before that same resident dropped by. Once again, Kate responded beautifully. They must have talked at least 20-30 minutes.

While they talked, another resident sitting at a nearby table was astonished. She said, “I’ve never heard her talk before.” She was so fascinated that she dropped what she was doing and just listened.

Three other residents were sitting across the room. They had heard what was going on and were listening as well. When the resident talking with Kate left, I invited them to come over to our table. They gladly accepted my invitation. That continued until it was time for our dinner. Altogether, Kate was involved in conversation almost two hours.

It was not only that everyone was amazed that she was talking. She also appeared to grasp what was being said to her.

During the past few days, Kate has continued to be especially cheerful and talkative. This isn’t true every moment of the day but definitely more often than usual.

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Celebrating our Anniversary

Kate and I celebrated our sixty-first anniversary this past Friday. We celebrated twice this year. The first was the previous Sunday when I arranged for a van to take us to the restaurant at which we had eaten almost every Sunday for almost ten years before the pandemic closed the restaurants. We took a van because getting Kate in and out of a car is too difficult. A “wheelchair-accessible van” enables us to roll her in and out of the van while she is in her wheelchair.

I continue to eat there for lunch every Sunday, but I chose to take Kate in the afternoon when the restaurant is much quieter. We had a great meal, and the staff was unusually attentive. This was the first time they had seen Kate since the Fall of 2020 before we both had Covid. Since that time Kate has been wheelchair-bound.

I can’t predict how Kate will respond in situations like this. As always, I hoped that she would be cheerful. That didn’t work out. We had a bumpy ride to the restaurant. That frightened her, and she also slipped down in her wheelchair which made her a bit uncomfortable. Her best moment occurred when one of the servers dropped by to say hello. She had a big smile, and Kate responded with one just as big. That was a great start, but that was the last sign of cheerfulness we saw while we were at the restaurant; nevertheless, we enjoyed our meal. I was glad we had made the effort to be there.

Our second celebration occurred on Friday, the day of our anniversary. We didn’t get off to a good start. Kate awoke with a scream at 3:30 am. Whatever bothered her was over quickly, but she was awake until about 6:30. She was in a talkative mood, so I decided to skip exercise that day. I felt the conversation with her was an anniversary gift. We talked a long time before she fell asleep, and I got up.

Several times during the morning, she had several other episodes of whatever disturbed her earlier that morning. She wasn’t in a good mood when the caregiver arrived; however, her mood changed while we were getting her up. She smiled and even spoke a little while we were dressing her.

When I returned from lunch, she was glad to see me. She was smiling and talkative. We talked for almost an hour. She was doing so well that I suggested that the caregiver and I take Kate out for her ice cream earlier than usual. That gave us a little extra time to enjoy the beautiful day outside before going to dinner.

We finished our day with filet mignon in the dining room and a nice evening at home a great way to celebrate our anniversary.

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My Best Christmas Gift

As we approach the end of this Christmas season and the beginning of a new year, I am feeling grateful for many things. Most of all, I am grateful that Kate is still with me and that we continue to experience “Happy Moments” together. They come and go as she experiences different moods throughout the day, but I come to expect them at some point every day. Christmas Day was like that.

She was still asleep when the caregiver arrived at 11:00. After getting her up and ready for our Christmas buffet at 1:00, she was still quiet. She remained that way for the balance of the day. I call this her “neutral” time because she expresses little emotion.

I have also grown accustomed to very nice evenings with her after the caregiver leaves at 7:00. I wasn’t sure that night would be one of them, but I got in bed with her right after my shower and turned on a YouTube video of “Christmas in Vienna” from 2008. We attended that very concert. That led me to reminisce with Kate, and I extended that to include many other experiences we have had during the Christmas season as well as other special times throughout our marriage.

As I talked, Kate perked up and began to smile. This continued for almost an hour until it was time to call it a day. She never said a word during this time, but her facial expressions conveyed her happiness and her love. Most of the day hadn’t been that special, but it ended beautifully. Her smile, facial expressions, and holding her hand made all the difference. It was a beautiful way to end another Christmas Day together. That was my best Christmas gift.

Two nights later and again last night, we had very similar evenings. I know moments like these may seem trivial, but they mean the world to me at this stage of her Alzheimer’s. They are part of why I say Kate is my greatest source of stress relief.

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An Extraordinary Day

Once in a while, I highlight unusually positive experiences that I call “Happy Moments.” I use the word “moments” to emphasize that the experience is not usually long-lasting although it can occur over several hours.

On a typical day, Kate doesn’t express much emotion until the afternoon. She rarely says a word until after 2:00. This past Friday was very different. It began about eight o’clock in the morning and lasted until she fell asleep around 8:30 that night. It was a day filled with “Happy Moments.”

Kate generally sleeps late. Sometimes, she is asleep when the caregiver arrives at 11:00. Recently, however, she has waked up as early as 7:00. At 8:15 Friday morning, I checked on her. As I approached the bed, I could see that her eyes were open. I have a little routine that I follow each day when I see that she is awake. I say, “I think I see Kate. Yes, it is Kate. She’s my Texas gal. I’m so glad to see you.” Then I remind her that we started dating in our senior year of college, fell in love, and became engaged a year later. I go on to tell her that we’ve been married sixty years, and have two children, and five grandchildren.

Sometimes, but not always, she smiles. That day she smiled and started talking. She has aphasia, so I couldn’t understand much of what she said, but, as usual, I tried to play the role of facilitator saying things like, “Really?” “Tell me more.” “That’s interesting.” From that point, I got beside her in bed, and we began to talk. She dosed a few times, but we talked on and off until the caregiver arrived at 11:00.

A new person was filling in for our usual caregiver, so I wasn’t sure how Kate might respond to her, but she was fine as I left for lunch. While I was gone, the caregiver walked Kate around the hallways in her wheelchair and stopped to visit with residents in a couple of places. I learned later that she had been smiling and talking with other residents who had stopped to say hello.

Friday afternoon I had coffee with a longtime friend. When I arrived home, I went directly to the café where the caregiver had taken Kate for ice cream. I walked up behind Kate. As I looked around to see her face, she gave me a big smile. That happens frequently but not always. When it does, it warms my heart.

From there, we went to dinner in the community dining room where she always receives a lot of attention from the staff and other residents. She remained cheerful and talkative the entire meal. I can’t tell how long moments like these will last, and this time I was in for a surprise. She remained the way she had been all day until I turned out the lights around 8:30. It was an extraordinary day, unlike any I have seen before. I treasure moments like these.