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More Happy Moments at Stage 7 Alzheimer’s

More Happy Moments at Stage 7 Alzheimer’s

I co-chair the CART Committee for my Rotary Club. The committee raises money for research on Alzheimer’s and other dementias. Each Monday, I prepare a message about dementia that provides information and encouragement for members to contribute to a bucket at each table.

Recently, I asked Gemini for a list of topics I might use for my weekly CART Message. One of those was of special interest to me. It focused on joy in caregiving. I asked Gemini to write something about that. Here is Gemini’s reply with a few edits of my own. I was struck by how well it captures the way Kate and I find joy at this late stage of Alzheimer’s.

Looking for Moments of Joy By Gemini (Google’s Chatbot)

Caring for someone with dementia can be challenging, but even at later stages, the ability to experience joy hasn’t vanished.

You might find these moments in unexpected places: the soothing rhythm of brushing your loved one’s hair, the shared warmth of holding hands during a quiet afternoon, or the familiar comfort of a favorite song playing softly in the background. These fleeting interactions may not change the course of the disease, but they can profoundly change your day.

By shifting our focus away from what has been lost, we open our hearts to what is still here.

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Tips for Caregivers: Caring for the Caregiver


Caring for the Caregiver

People often ask me if I’m taking care of myself. My answer is yes, and here is what I have done. Perhaps that will give you a few ideas that might work for you.

I had been going to the YMCA almost every day for years and continued to do so until the pandemic arrived in 2020. Then I started walking in our neighborhood. When we moved to Still Hopes five months later, I started going to the wellness center, where I spend 45 minutes on the seated elliptical after 15-20 minutes of stretching exercises. I get up between 3:45 and 4:30 each morning so that I can get back to our apartment before 6:30. Kate is a good sleeper, and I am confident that she will remain asleep at that hour. At first, I went every day, but my doctor convinced me that it would be good to take off at least two days a week. I started taking off Wednesday and Sunday. That is my present schedule.

I’m also mindful of my diet. For many years, I’ve followed a high protein, low carbohydrate diet that has served me well. I am thirty pounds lighter than I was in high school and forty pounds lighter than I was in my freshman year in college.

I also find other ways to care for myself. One of those is listening to audiobooks while I’m at the wellness center. Most of my listening is nonfiction, but I periodically read fiction. Recently, I finished listening to THE GALES OF NOVEMBER by John H. Bacon. It is about the Edmund Fitzgerald that sank in Lake Superior in 1975. In addition to the ship itself, it contains a lot of interesting information about the Great Lakes, and the economy in that area which was heavily dependent on the auto industry and more specifically iron and steel.

The most important thing I’ve done is to be as socially active as possible. Prior to and during the first nine years after her diagnosis, Kate and I were both socially active, as a couple and separately. Since she entered the last stage of Alzheimer’s, we have been more restricted. I do take a three-hour break every day from noon until 3:00 pm. That gives me time to eat lunch, run errands, have coffee with friends and drop by Starbucks where I work on my blog. Apart from that break, I am with Kate all day and night.

I go off the grounds for lunch five days a week. Most of the time, I go by myself, but I often see people I know. Once a month, I go to lunch with two Still Hopes residents. I also meet a former staff member and longtime friend for coffee every Friday afternoon. At noon every Saturday, I meet three other guys for coffee.

I’m also a member of three support groups, two of which are here at Still Hopes. One is for dementia caregivers. The other is for people caring for anyone who needs care. I am also a member of “The Men’s Coffee Club”, a men’s support group at Leeza’s Care Connection. It meets the second and fourth Fridays of each month. I participate on Zoom since it is before our caregiver arrives at 11:00 am.

One of the things I learned in my reading about caring for a loved one with dementia came from an online magazine in the UK. It recommended that caregivers and their loved ones put together a team. The focus of the article was on medical, legal, and financial professionals. We had those in place, but I took that a giant step forward. I consider everyone who does anything to make each of my days a little brighter, a member of my team. That would include all of you who read my posts and respond with kind and encouraging words. During my three-hour daily break, I often have conversations with people I don’t know. I include them on my team as well.

Although I retired long ago, I still own my business and stay in touch with the staff. For years, I had been active in several non-profit organizations. I’m much less active now, but I still maintain contacts with them.

I wish I could say that my effort to care for myself has prevented the stress that goes along with caring for someone with dementia. It doesn’t, but it keeps my head well above water. I’m very grateful for the support you and others have given me. That has played a major role in how Kate and I have been able to live so well with her Alzheimer’s, and I thank you.

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Tips for Caregivers Beginning Their Journey with Dementia: Making Plans

After thirty-seven consecutive years as a caregiver, I don’t claim to be an expert, but I do have a few tips to offer those who are caring for someone with dementia. The first is to develop a plan. Kate and I did that as a team, something I would recommend to every caregiver. I believe that set the stage for us to work together throughout our journey. Knowing that Alzheimer’s would have an impact on the rest of our lives, we began planning immediately after her diagnosis.

We spent several weeks (months?) talking about the potential changes and how we could adapt. We established a goal to enjoy life and each other as long as we could. We reflected on what we currently enjoyed: movies, music and theatrical performances, eating out, and travel. We binged on them as long as we could.

Although our first focus was on what we enjoyed, we also considered many of the practical things that might be involved. We contacted our attorney and accountant who helped us prepare for the legal and financial matters we might encounter.

We also thought about Kate’s care and what we should do when she might require in-home care. As a result of our caring for all four of our parents and my father’s girlfriend after my mother died, we felt it would be best to consider a move to a retirement community that would offer a variety of services that we might potentially need. Ten years later we acted on that decision. It was a good one. We have now lived at Still Hopes almost five and a half years and have never regretted it.

Don’t worry about making a detailed plan. In fact, something more general gives you the ability to make specific changes if and when that becomes necessary. At first, you need to be clear about the things that give you the most pleasure in life. That way you can focus on enjoying them as much as you can while you are still able to do so.

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The Power of Love

Many things have helped us live well with Alzheimer’s. Love is at the top of our list for Kate and me. This takes me back to our dating years in the early 1960s. One month after our first date, I took a job at a funeral home that paid me forty cents an hour. I worked afternoons during the week and at night three or four nights a week. I was a senior in college, carrying a full-time course load and short on time and money, but each of us was willing to do whatever we could to attract the other.

Throughout our marriage and during our journey with Alzheimer’s we have lived the same way. It has given me patience when it was needed. It led me to be more creative when Kate could no longer do the things she had enjoyed in the past. It motivated me to make her happy in every way that I could from the day of her diagnosis right up to this very moment.

Every day, I express my love for her in many ways. Because of her aphasia, she can’t express her love verbally as she used to, but she is able to express it through her facial expressions, holding my hand, stroking my arm and with her smiles, and taking my hand to her lips and kissing it. Love has benefited us every step of the way, as described in I Corinthians 13.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.”

Love has worked and still works for us.

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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 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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“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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Happy Moments with Family

In some ways, being Kate’s caregiver is like being a parent. That’s the case when we are around other people. She is often cheerful, and her paid caregivers and I get to see that every day. I want other people to see that as well.

That is especially true for our children. Both of them live out of state and visit us three or four times a year. I send them videos regularly. That gives them a pretty good idea of what I call “Happy Moments”, but they don’t always see the best of her when they are here.

Our son and his wife were with us for four days this week, and Kate rose to the occasion. Each day, she was at her best, smiling and talking. She made all of us smile, and she closed their visit with a surprise Wednesday morning just before they left.

Please permit me to digress a moment. People often ask me if Kate recognizes the children when they visit. I tell them it’s difficult to be sure. She is comfortable with them, but I haven’t seen many clear signs that make me sure that she remembers their names or that they are her children. I may think differently in the future. That’s because of a Happy Moment that occurred as they were about to leave.

It was shortly after 8:00am when our son, his wife, and I went into the bedroom to see if she might be awake. She usually sleeps later than that and even when she is awake, she doesn’t often begin the day with a smile. Thus, I was doubtful that she would give us any response. I was wrong.

Our son leaned down with his face close to hers and began talking to her. She immediately responded with her beautiful smile that continued as he spoke. She was still smiling as we left the room. It was a touching moment.

I know I can’t be sure that she knew she was smiling at her son, but it looked like that to me. That’s what I believe, and I know it was a “Happy Moment” for our son, his wife, and 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.