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Is It Possible That Others Could Benefit from the Same Things That Have Worked for Us?

In previous posts, I’ve said that our approach to Alzheimer’s has helped us live well, even joyfully. If that is so, it seems reasonable to ask if it could do the same for others.

I can answer that question, but first, I want to make clear what I mean by our approach. I’m not referring to the specific things that we did – binging on music, eating out, and traveling to exciting places. The approach I mean is to accept Alzheimer’s and the loss of rational thought coupled with a heavy emphasis on intuitive thought. We didn’t realize it at the beginning, but most of the activities we chose to enjoy life were ones Kate could enjoy for a long time. Not only that, but I could enjoy them with her.

So, is it possible that other Alzheimer’s couples facing the disease could live as well as we have? My short answer is “Yes, it is definitely possible. In fact, it’s already happening. One example is that of Tony Copeland-Parker and his wife, Catherine (Cat). Tony wrote the book “Running All Over the World”. Their story follows their lives after Cat was diagnosed with early-onset Alzheimer’s. They took early retirement at UPS, sold their house, and began years of marathoning in all fifty states and seven continents. They did that for years until the late stage of Alzheimer’s brought that to an end.

Another is Helene Berger and her husband, Ady. Helene decided to shift her focus from managing a disease to actively focusing on daily happiness.

The result was constant mental stimulation, absolute kindness, and a conflict-free environment that led to what physicians considered an unprecedented stabilization. In his final years, Ady became known in his community as “the man with the radiant smile,” returning to the piano, drawing, and greeting friends by name. Helene tells their story in her book CHOOSING JOY. There are many similarities between Berger’s care for her husband and my care for Kate. Both of us have placed emphasis on keeping our spouses happy.

Judy Cornish can tell other stories like these. She is the author of THE DEMENTIA HANDBOOK. She has made a career out of helping people live well with dementia. She has numerous examples of others, besides Kate and me, who have followed her advice and have been able to live well with dementia.

Thus, I have no doubts that it is possible for others to live well if they followed our approach. The key word, however, is “possible”. Kate and I have had a number of advantages that have made a difference for us that others might not have. I’ll explain in a later post.

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Babies, Toddlers, and Kate

The families of our fellow residents at Still Hopes often bring their little ones when they visit. I’m always intrigued by how much they enjoy simple things. They can have fun with a cardboard box or a piece of paper. At this stage of her Alzheimer’s, Kate is like that.

She enjoys the plastic placemat at her place on the table of our community dining room. For a while, she liked pulling it off the table and folding it. Now, she just enjoys touching it.

She also smiles and laughs the way babies and toddlers do. This often happens at surprising times. One of the most predictable times is when we are getting her ready for bed in the evening. That involves personal things most of us wouldn’t want others to do for us, but for Kate, most of what we do is simply part of her daily routine.

She also laughs and talks at other times. That often happens when I say “I love you.” Sometimes she smiles and talks as she is waking up in the morning. It is clear that she is happy, and my intuitive thought enables me to be happy with her. What more could I want? To be cured of her Alzheimers? Obviously, that’s impossible. My rational thought accepts that.

Prior to the late stage of Alzheimer’s, I hadn’t thought about the likelihood that she might be so childlike, but it makes sense when I think about it. Kate as well as babies and toddlers have something in common. Their lives are shaped by their dependence on intuitive thought. Babies and toddlers haven’t yet developed the rational thought that will play such a large role later in their lives. Kate, on the other hand, has lost her rational thought. That leaves her with only her intuitive thought.

I want to emphasize that we have not been able to cure Alzheimer’s. We just found ways to make the best of a situation that has radically changed our lives for the past fifteen years.

One might ask if other people in our shoes could also find joy while “Living with Alzheimer’s”? That’s an important question, and one that I’ll leave for another post.

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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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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.

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Our Lives After Kate’s Diagnosis

Part 5: Major Changes

Apart from the changes in our lives that I mentioned in my previous post, there have been two other changes that have had a greater impact on us. They both involved COVID. Before it came onto the scene around March 2020, our lives were already shrinking, but we had no idea how the Pandemic would affect our lives.

Prior to Pandemic, we spent an hour or hour and a half every morning at Panera and about the same amount of time at the café at Barnes and Noble every afternoon. Coupled with eating out for lunch and dinner, we were away from home a large part of every day.

COVID brought that to a halt. Suddenly, we were trapped in our home without the social contact we had enjoyed for so long, but that wasn’t all the damage COVID left for us. The biggest hit occurred when Kate and I had COVID almost eight months later when it seemed safer to get out. My case was mild and ended quickly, but she was hospitalized for eight days. That changed her life forever. It wasn’t COVID alone that hurt us. The whole experience was traumatizing for her.

She was frightened by the ambulance attendants who were naturally strangers to her. As they took her out the front door to the ambulance, she was screaming, “Help me! Help me! Somebody help me!. To her, it must have seemed as though she were being kidnapped. I was the only one she knew, but the hospital did not allow visitors at the time.

She was without me for eight days. She didn’t know anything about COVID or that she was sick. All she knew was that strangers had taken her out of comfort zone, and in the hospital they were doing things she didn’t understand and didn’t like. The impact on her was so great that she didn’t want to be touched when she got home, and we had to do the same kind of things they had done in the hospital to take care of her daily needs.

Before COVID and her hospitalization, Kate was beginning to lose her mobility and was in the early stage of aphasia. COVID made them a permanent part of her life. For five months, we began to adapt to a new world in our home. Then we moved to Still Hopes Episcopal Retirement Community where we live today. We have established a new routine that is significantly more restricted than before, but we are living joyfully despite the combination of Alzheimer’s, COVID, and a stroke Kate experienced a year after our move.

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What Kate and I Did After Her Diagnosis: Part 4. Everything Changes

I’m not a Buddhist, but I know that one of the fundamental tenets is the “impermanence” of everything. Nothing stays the same. All of us experience that, but “Living with Alzheimer’s” has given me a greater appreciation of impermanence than I had before.

During the first nine years of our journey, we were able to live happily, but we couldn’t prevent the kind of changes that Alzheimer’s brings with it. Each one has made our world a little smaller than when we began.

In addition to the activities we enjoyed together, Kate had her own activities that were important to her. They included use of her computer, driving her car, tending to her plants around our yard, activities with her P.E.O. chapter, as well as weekly lunches and shopping excursions with her dear friend Arletta Raley. She lost all of these things during the first eight years after her diagnosis.

We also lost several things that had been important to both of us. One of those was movies. With the progression of her Alzheimer’s, she became less able to follow movies. The last two we saw were close together in 2018, seven years after the diagnosis. That same year, we dropped weekly performances of the “Live in HD at the Met” operas in one of our local movie theaters.

Travel also became more difficult. Our last international trip was in 2015. In 2018, we made our last trips to visit our children.

The worst was yet to come; however, I will save that until next time.

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What We Did After Kate’s Diagnosis: Part 3, Travel

Travel had been an important part of our lives from the early years of our marriage. When our children were 4 and 2, we took them to Spain and France for six weeks. Three years later, we took them with us to Colombia, South America for the summer. While there, we took trips to Ecuador and Venezuela. When we became empty nesters, we began to travel more, mostly in Europe.

One of the first things we thought we were likely to lose was our ability to travel. In particular, we had wanted to visit Africa, Machu Picchu, the Galápagos Islands, New Zealand, and Switzerland. We were successful in getting to all of them. We engaged in a number of activities we had wanted to experience. We took a safari in Tanzania, took a balloon ride over the Serengeti, paraglided off a mountain slope in Switzerland and somersaulted on the way to the ground.

Travel was becoming more difficult for Sarah, so Switzerland was our last international trip. Two years later, we took our last trip to Chautauqua, NY, our favorite summer getaway.

In 2018, we took our last trips to visit our children and grandchildren. Since then, they have traveled to see us, but we were able to do international travel for four years after her diagnosis and travel in the US for an additional three years.

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More Happy Moments at Stage 7 Alzheimer’s

At this late stage of Kate’s Alzheimer’s, I am mindful that our Happy Moments may decline. Thus far, however, we continue to experience them. Yesterday, we had an especially good one.

Our caregiver had a meeting with her agency at the same time we normally go downstairs to the café for ice cream, so Kate and I went by ourselves. Prior to leaving, she wasn’t in one of her cheerful moments and wasn’t talking. I keep a variety of things on the coffee table in our living area that the caregivers and I often read to her.

I picked up a three-ring binder where I have collected a lot of different things about our lives together. I read her something I had written about our dating, falling in love, and getting married. As I read, she began to perk up. By the time we left for the café, she was smiling. While we were at the café, we had an special Happy Moment. We were alone most of the time. She was very relaxed, and we had a conversation that lasted almost an hour.

I didn’t take the attached video yesterday. I took it ten days ago, but it gives you an idea of what our conversations are like at this stage of her Alzheimer’s. The fact that I can’t understand her doesn’t keep me from loving these moments. I treasure them.