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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 Lives After Kate’s Diagnosis, Part 6: Adapting to Isolation After COVID

In an earlier post, I talked about two ways that COVID changed our lives. One was isolating us after nine years of active lives that kept us enjoying life and each other. The other was Sarah’s hospitalization with COVID. Each of these required us to focus on new ways to enjoy life.

Some of the things we did prior to the pandemic were things that we could do afterward as well. That included our collection of family photobooks that contain a variety of historical family information and photos.

Of course, music played a major role in our lives but in different ways. We couldn’t attend concerts, so we added another way to enjoy music. We started watching music videos on YouTube. That gave us a wide variety of music we could tap into at any time of day.

Before the pandemic, Kate’s only self-initiated activity was working jigsaw puzzles on her iPad 6-8 hours a day. She lost that ability during the first week of the pandemic. That put more pressure on me to entertain her.

One of the ways I did that was to act as a docent in our home. There were stories that went along with many of the pieces of furniture as well as paintings and knick-knacks. At that stage of Alzheimer’s, she would quickly forget what I told her, so that made it easy to tell her the same stories over and over.

It was during the pandemic that Kate experienced what is common among people with dementia. She wanted to go home. The obvious answer to this is to say, “We are at home”. I knew it made no sense to contradict her; she didn’t realize she was at home. I would say, “Well, let’s do that.” Then we went to the car and drove around for 15-30 minutes and came back home. Some days, we did that as many as three times. It never failed. Each time we arrived home, she was pleased to be there, at least until the next time.

Activities like these kept us going until both of us got COVID in November, 2020. More about that in a later post.