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Our Lives Since Kate’s Diagnosis Part 8: The Most Important Thing I Have Learned About Caring for Someone With Dementia

In previous posts since April, I’ve summarized what “Living with Alzheimer’s” has been like for Kate and me over the past fifteen and a half years. At first, we were afraid of the changes we would face in the years ahead.

We did face changes, as well as the challenges that accompany them, but after fifteen years, we still enjoy life and each other. It was seven or eight years after the diagnosis that I read a book that helped me understand why we were able to live so well. That is The Dementia Handbook by Judy Cornish. It not only helped me understand the past but also continues to guide me as Sarah Lee’s caregiver every day.

The book is filled with information about dementia and caring for someone with the disease, but what caught my attention most was the distinction between rational and intuitive thought and its relevance to people with dementia.

Dementia involves the loss of rational thought. People lose their ability to remember the names of people, places, and things. They also lose their ability to follow directions and to remember how to do things that require rational thinking. That includes using a computer, following a recipe, and many of our daily activities.

However, all is not lost with dementia. People retain the ability to experience the world around them via their senses. They can see, hear, taste, smell, and touch. Our senses work with intuitive thought, and it is through them we derive much of our pleasure in life.

That has been critical for Kate and me. When we decided to enjoy life and each other as long as we could, the things we did were mostly ones we could experience and enjoy through our senses. We binged on music and eating out. We remained socially active. We traveled to interesting places and did interesting things like staying in tents and getting close to wild animals on a safari in Tanzania, paragliding off a mountain in Switzerland, taking a helicopter to the top of the Franz Josef Glacier in New Zealand, as well as hiking and swimming with wildlife in the Galapagos Islands.

At the last stage of Alzheimer’s, Kate has lost all of her rational thought. There are many things we can’t do anymore, so we depend on her intuitive thought to find pleasure, and that still works for us.

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Our Lives After Kate’s Diagnosis, Part 7: Living With Alzheimer’s at Stage 7

The most dramatic changes in our lives occurred following Kate’s hospitalization with COVID. Since then, she has required total care with all of her daily activities. We added in-home care eight hours a day, seven days a week. Five months after her  hospitalization, we moved to Still Hopes Episcopal Retirement Community. That was a wise move.

While there are many things we can’t do now, we still enjoy music. Most of that occurs in our apartment where we play YouTube music videos day and night. Our favorites are Andre Rieu’s orchestra and soloists, Andrea Bocelli, Daniel O’Donnell, and the Maestro and the European Pop Orchestra. We watch many others as well. Many are singers and songs that were popular during our teens and early years of our adulthood.

We get out as much as we can. Every afternoon we go to one of the cafés downstairs and follow that with dinner in the main dining room. We also have dinner in another café downstairs on Sunday and Monday nights when the dining room is closed. Still Hopes also has quite a few musical events. We take in as many as we can.

For me, the best parts of every day are “Happy Moments” when Kate is cheerful and talkative. Those are usually in the morning and evening when Kate and I are alone together.  I love talking with her even though I only understand a few words that sneak through her gibberish. I also love it when she has these moments with other residents and staff when we go out in the afternoon for yogurt or ice cream.

So, even at this stage of her Alzheimer’s, we have found ways to enjoy life and each other. In my next post or two, I will explain what has enabled us to do that.

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Our First Steps While Living with Alzheimer’s


Kate’s Alzheimer’s diagnosis was the most serious problem we had faced in our marriage, and it immediately changed my priorities about life. Spending as much time as possible with her jumped to the top of the stack. That sticks with me to the present time. We started having lunch and spending the afternoon together every day. We had always enjoyed movies and began attending them once a week.

Throughout our marriage, we had attended many musical and theatrical events. That was a natural place for us to begin as we sought to “enjoy life and each other”. We were already subscribers to the concerts of our local symphony orchestra and the local community theaters. To that, we added periodic trips to other cities within a two-hour drive of our home in Columbia. Wherever we traveled, we often attended musical and theatrical events.

We stayed busy with these activities, and, as we had hoped, we enjoyed life and each other. And there was much more to come.

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My Day is Off to a Good Start


As I’ve said before, the most difficult part of the day for Kate is in the morning. She rarely speaks or smiles until later in the day. She is unable to explain, but it seems like she is unsure of where she is or who I am until later in the day. During the past two years or more, she has improved in several ways. One of those is waking up with a smile and saying a few words. That happened this morning.

I walked into our bedroom (Yes, we still sleep in the same bed.) about thirty minutes ago as she was opening her eyes. I spoke to her and told her how happy I was to see her. She smiled and said, “What are you doing?”

I told her I was coming to see her. Then I told her several things that I tell her every morning when I see that she is awake. “You’re my Kate from Waco, Texas. We met at Baylor where we were students. We fell in love and got married.” I go on to tell her that we’ve been married sixty-two years and that every year has been a happy year. Then I tell her about our children and grandchildren.

On a typical morning, she doesn’t display any recognition or enthusiasm for what I’ve told her. This morning was different. As I talked, she didn’t say a word; however, her smile showed that she understood what I was telling her and was delighted.

This follows another similar experience that happened one afternoon this past week when we went out for her daily ice cream. That, too, was an occasion when I spoke to her about our dating, marriage, and wonderful times we have had. In this case, she spoke as well as smiled to communicate her pleasure. I could not understand what she said, but it was clear that she enjoyed what I told her.

I can’t predict what the rest of the day will be like, but we are off to a great start, and it is quite possible we will share more “Happy Moments” together.

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“Little Things Mean A Lot”

In 1954, Kitty Kallen‘s “Little Things Mean a Lot” was number one on the charts, selling over 1 million copies. I was 14 at the time, and I don’t think I really understood the meaning and relevance of the song’s message. Now that I’m closing in on 86, it means much more to me.

Kate and I have lived well throughout our marriage. In fact, I’d say it’s been a joyful adventure. That was true even during the early stages of her Alzheimer’s. Early on, we decided to enjoy life and each other for as long as we were able. We did that by binging on all the things we had enjoyed before Alzheimer’s. That meant going to movies, theatrical and musical events, eating out, and traveling. During the first 10 years, we ate out for lunch and dinner more than 6000 times. We also attended many musical and theatrical events not only in Columbia, our hometown, but also in cities within a two-hour drive.

Travel also played an important role in our lives. We went on a safari in Tanzania, where we got a close look at lions, elephants, zebras, and other wild animals we had only seen in zoos. We swam with iguanas, turtles, and other marine life in the Galapagos Islands, and on our last international trip in 2015, we paraglided off a mountain in Switzerland where we turned a somersault on the way down.

Those days came to an end in 2020 after Kate had a traumatic experience during eight days in the hospital with COVID. She’s been in the last stage of Alzheimer’s ever since. Before that, our world was very large. Today, it is very small. Our biggest daily events are going downstairs for ice cream at 3:30 and having dinner at 4:30.

In addition, we have great times when we are alone. Sometimes that happens in the morning when she wakes up early and is in a talkative mood. More often, it happens at night. We talk while watching music videos on YouTube. Our biggest surprise is that while our world is much smaller now than in the early stages of the disease, we have found ways to live joyfully.

We’ve learned to enjoy the little things. Best of all is simply being together. Every morning when she wakes up, I remind her that our first date was to a performance of Handel’s “Messiah,” and that we enjoyed it, but being together was the highlight of the evening. That is still the case today. I often refer to those times as “Happy Moments”. We’ve had quite a few of those in the past week. One of those days, she woke up at 6:30 in the morning, cheerful and talkative. That continued until she went to sleep that night. The other days were not as spectacular, but they, too, were punctuated with Happy Moments. Kitty Kallen was right. “Little Things Mean A Lot”. My perspective has changed significantly since I first heard that song.

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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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My Favorite Part of the Day

I’ve often noted that mornings are the most challenging part of the day for Kate. That is a time when she smiles and talks less than she does later in the day. Although that continues to be the case, she does smile and talk a little more in the morning than she has in years.

Having said this, the late afternoon and evening remain the times she is more comfortable and at ease, which leads to more smiling and talking. My favorite time of the day is after the caregiver leaves at 7:00. Our primary responsibilities are over, and we can relax together.

Not always, but very often, we spend our time talking while watching music videos on YouTube . It is our conversations that I enjoy the most. They are quite different from our pre-Alzheimer’s conversations. The disease and especially the loss of normal speech make it difficult to understand what she is saying.

What is important to me is that she is relaxed. She is eager to talk. She is happy. She is also more comfortable talking with me than most people she encounters during the day. That tells me that our relationship is still special for her, just as it is for me, and that means the world to me.

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My Best Source of Stress Relief

Because there are greater demands placed on me during this late stage of Kate’s Alzheimer’s, I experience more stress now than at earlier stages. The good news is that Kate is my greatest source of stress relief. I cannot say enough good things about her.

She is happy. That isn’t obvious every moment of the day, but she displays her happiness numerous times daily with her smile. She often smiles in her sleep. Sometimes she talks when she is apparently dreaming. These conversations (at least her part) are usually cheerful, and she sometimes laughs during them.

Our conversations are most important to me. They occur mostly in the evening after the caregiver leaves, but we also have them at other times of the day. These two occurred after I returned home from lunch on Saturday afternoon.

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Our Anniversary Celebration

To celebrate our anniversary last night, I arranged for a wheelchair-accessible van and took Kate out to dinner at a restaurant where we had shared many special moments since the early seventies.

Alzheimer’s makes it impossible to predict how she will respond in situations like that, but she rose to the occasion. Her best times are in the late afternoon, and she was smiling before we left. She was cheerful throughout the dinner and after returning home.

Her most difficult times are in the morning, but lately she has been waking up with a big smile. That happened this morning. It looks like another nice day for us. I wish the same for you.  

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Our 62nd Anniversary

Happy Anniversary to my wife, Kate. After all of these years, I can’t imagine finding a better match. Our marriage has been the adventure of a lifetime. It really began shortly after our first date on December 19, 1961, when I was in need of money and took a job as an ambulance driver at a funeral home.

Our whole courtship centered around my responsibilities at the funeral home. I worked four nights a week, which handicapped my time for dating. On slow nights, I invited her to the funeral home where we spent the evening in one of the unoccupied viewing rooms.

Periodically, I had to go out of town to pick up a body. She would go with me, and I was on the company expense account. We always found a good steakhouse before picking up the body and driving back home.

At the time, neither of us thought much about this. We were in love, and that was all that mattered. Of course, the most challenging adventure of all has been “Living with Alzheimer’s”. Thankfully, we have lived joyfully despite those challenges. Our love for each other has been a powerful source of strength for both of us, and I am optimistic that our love will sustain us for the remainder of our journey together.