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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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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 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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Kate’s Alzheimer’s Diagnosis and Our Thoughts About the Future

For months, I’ve reported on positive changes in Kate’s behavior. She is better now than she was two or three years ago. This doesn’t mean that we have found a way to cure Alzheimer’s, but even at Stage 7, we have found ways to live joyfully.

Occasionally, people ask me how we’ve been able to live so well. I’ve given that a lot of thought and would like to share those thoughts in several upcoming posts.

Today, I’ll focus on our immediate response to Kate’s diagnosis. It was January 21, 2011, exactly one week after she turned seventy. Although we had seen the first signs of dementia more than five years before, the reality of the diagnosis frightened us. Our marriage had been filled with joy, and we were afraid that Alzheimer’s would make that a thing of the past.

We went directly from the doctor’s office to Villa Tronco, a favorite restaurant of ours. We began a conversation that continued for several weeks, perhaps months. We had been caring for our four parents (and my dad’s girlfriend after my mother died) for twenty-two consecutive years. We were aware of the many challenges we were likely to face. Now, it was time to focus on our own future.

We spent much of our time discussing how each of us felt and the first steps we should take. We talked about when to tell our children and our friends. We considered the practical issues, such as legal and financial decisions.

We reflected on the things we had enjoyed during our marriage and wondered how long we could continue living so well. We had no idea but made a decision that worked then and now. We would just enjoy life and each other for as long as we could. I’ll have more to say about this in following posts.

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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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Living in the Moment

During most of my adult life, I’ve heard people talk about ‘Living in the Moment.” I always felt that Kate and I had done just that throughout our marriage. Then she was diagnosed with Alzheimer’s. Suddenly, living in the moment took on a new meaning. I felt an intense desire to make the most of the time we had left.

One of my first efforts to spend more time with her was to change my lunch routine. That was easy. I was already transitioning into retirement and coming home after lunch. I started leaving the office earlier, and we began eating lunch together every day. Little did I know that it was our first step toward binging on eating out for lunch and dinner every day until the pandemic in March 2020.

Eating out was not the only thing we binged on. We also attended many movies as well as musical and theatrical events. We were together a lot, but I did get out to go to the Y, run errands and meet friends for coffee.

With the progression of her disease, I began to feel uncomfortable leaving her alone. That led me to bring in caregivers four hours daily on Monday, Wednesday, and Friday.

This turned out to be harder for me than for Kate. I didn’t like being away from her that long, and I always came home before the caregiver was supposed to leave. We continued that schedule until she was hospitalized with Covid in 2020. That is when I arranged for care eight hours a day seven days a week.

To a degree, I have adapted to being away from her. Even with help, the stress of caregiving is much greater than before, and I enjoy going out to lunch three days a week; nevertheless, I still want to be with her as much as possible. As a result, I am away no more than three hours of every 8-hour shift. That means I am with her twenty-one hours a day.

I have often talked about our Happy Moments. During the past year, we have begun to have more of those.  That’s because Kate is now waking up earlier in the morning than she has in the past three or four years. That has cut into my time to take care of my daily tasks, but it also gives us more quality time together. I’ve welcomed that and make the most of it. I am with her as much as I can during those mornings.

When I’m doing my daily chores like folding and putting up laundry, I do that in the bedroom so that I can be with her. Other times, I get my laptop and sit up in bed with her while I check email, and work on other things like new blog posts. Every morning I do deep breathing exercises. When she is awake, I do them sitting up in bed beside her or in a chair beside the bed.

On mornings when she is especially alert, we sit up in bed close to each other and just enjoy being together. Since Kate has no memories of the past, I remind her of other special moments in our lives. They include our dating, falling in love, getting married, moving to new places, having children, making new friends, and traveling. We often watch music videos on YouTube. These are very special moments for both of us. We are indeed “Living in the Moment.”

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Managing Stress

Because Kate and I have lived joyfully while “Living with Alzheimer’s, one might think that stress is not an issue for me. That would be wrong. The only time I have been relatively free of stress was in the first few years after her diagnosis. At that time, the key stressor was juggling my responsibilities between Kate and my dad who was in skilled nursing. Since then, stress has gradually increased.

Since Kate’s diagnosis 12 ½ years ago, I’ve learned a number of things about stress and how to deal with it. One of those is that it is impossible to avoid. It’s a natural part of caring for someone with dementia. The best I can do is to find ways to manage it.

In the early days, that was easy. Shortly after Kate’s diagnosis, we decided that we would enjoy life and each other for as long as possible. That simple decision led to our binging on the things we had enjoyed throughout our marriage – movies, theater, musical events, eating out, and travel. Pleasure was a central part of our lives and helped both of us minimize stress.

As Kate’s Alzheimer’s progressed, I needed to spend more time with her and felt less comfortable leaving her alone. At the same time, stress was increasing. That led to my engaging in-home care three years after her diagnosis. For a little more than three years, we had help four hours a day for three days a week. That gave me time to run errands and get to the YMCA for exercise.

The past two and a half years, she has required total care. That resulted in my increasing our in-home care to eight hours a day seven days a week. Despite that, my responsibilities increased significantly, and that was accompanied by more stress. Fortunately, I’ve been able to manage it pretty well,

I put a high priority on a healthy lifestyle. Except for my days in graduate school and the first few years I taught, my adult life has involved exercise. Since Kate’s diagnosis, I have needed it more. I used to work out at the YMCA three mornings a week. I stopped when I felt I could no longer leave Kate alone in the morning. That is when I took up walking every day. After our move to a life plan retirement community, I replaced walking for workouts in our wellness center downstairs. I get up between 4:30 and 5:00 five days a week and do stretching exercises for 25-30 minutes before going to the wellness center. I ride the seated elliptical for fifty minutes averaging a little over eight miles a day.

I have also taken up deep breathing. I do that periodically each day including the time I am exercising. I’ve made a number of other lifestyle changes that are helpful. One of those is to avoid rushing. I realized that I was rushing to get to the gym as well as going about my daily household chores like fixing breakfast, washing, folding, and putting away laundry. That doesn’t make much sense now that I am retired. I deliberately began to slow down as I go about my daily routine. In addition, I take breaks during the day and have reduced my emailing, activity on social media, and writing blog posts  

I pay attention to my diet. I maintain a high-protein, low-carb diet with an abundance of fish, vegetables, and recently, nuts and fruit. Sleep is also important to me. Fortunately, Kate sleeps through the night. That enables me to get between 7 and 7 ½ hours sleep.

By far the most effective way I have found to deal with stress is to be as socially active as I can. I do this in a variety of ways.

I follow a daily schedule that includes contact with other people than Kate and our caregivers. That is a lot easier now that we are in a retirement community. Three days a week, I eat lunch in a café downstairs. I don’t think I have eaten alone more than once or twice since we moved here. The other four days of the week I eat off the grounds. One of those days is with my Rotary club. The other three days, I eat alone; however, I eat in restaurants where I have eaten for several years and know some of the staff, and I frequently run into friends.

Our afternoon and evening routine includes 30-40 minutes at a café on the grounds where Kate has ice cream. It is also a time to run into other residents, and most of them stop to chat for a few minutes. In addition, we eat dinner in the dining room five nights a week and in a café downstairs the other two nights. These provide additional opportunities for Kate and me to engage in additional contact with residents and staff. That is good for both of us.

Part of my weekly routine is getting together with friends for coffee. Every Friday, I meet a friend who worked for me ten years before using his computer skills to launch out on his own. We have kept up ever since he left. I meet with another group every Saturday. All three were neighbors before our move two and a half years ago. One of them recently moved to our retirement community.

I stay in contact by phone and/or email with longtime friends and family. This includes my undergraduate sociology professor and mentor who turns 101 in September. I also stay in touch with four other college friends as well as three grammar school friends.

I maintain relationships with several organizations with which I have been involved for many years. Those include the United Way, Rotary, our church, our local symphony orchestra, and a local health foundation.

Apart from these social connections, I participate in three different caregiver support groups. One of those is a group for husbands taking care of their wives with dementia. Another is a mixed group of husbands and wives who are caring for a spouse with dementia. The third group is a group of husbands and wives caring for spouses with any illness that requires regular care. The first group meets twice a month. The other two meet once a month.

Of course, the most important stress-relieving relationship I have is with Kate. Some readers may be surprised that I can say that at this late stage of her Alzheimer’s. To be sure, we don’t relate in many of the ways we could before Alzheimer’s entered our lives, but not a day goes by without our having “Happy Moments.” They serve as the best stress reducer I can find. I savor every “Happy Moment” I have with her. I can’t eliminate stress, but I have a lot of things that help me manage it as effectively as possible. I am grateful.

Addendum

I thought I had finished this post yesterday morning, but since then I have had three different experiences I would like to add. Each one involves a “Happy Moment” with Kate. The first occurred yesterday just before leaving for lunch. She was smiling, and I told her what a beautiful smile she has. Then I said, “And you are beautiful. I love you.” The expression on her face changed immediately as she almost broke into tears. I can’t say precisely what that meant, but to me, it was very touching to see her so moved.

The second one occurred after I got home. I walked over to her and kneeled beside her chair. I told her how happy I was to see her and how much I missed her while I was gone. She gave me a smile and whispered, “I love you.” That is a rare event. More typically, she expresses her feelings with her facial expressions as she did before I left.

The third occurred this morning. She was awake early and in a cheerful mood and talking. That doesn’t happen very often. She is usually very subdued and rarely speaks until the afternoon. On days like today, I sit up in bed beside her and enjoy being with her. We had a good conversation even though I couldn’t understand a word she said. The important thing was that we were connecting. It was a very special moment.

Each of these is a good example of the kinds of “Happy Moments” we experience on a daily basis. They don’t happen all day, but they occur often enough that they boost my spirits knowing that our relationship still means a lot to both of us.

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“It’s a Wonderful Life”

I often run into people who ask how Kate is doing. Frequently, that is followed by asking me how I’m doing. I’m on a high right now. As many other caregivers say about their loved ones, “When Kate is happy, I’m happy,” and she’s been happy much more over the past few months. She’s been unusually happy and talkative for at least three of the past five days.

Not every moment in a day is a “Happy Moment.” That doesn’t mean that the rest of the moments are sad. In fact, she never has a sad day. When she is not happy, she seems intimidated or unsure about how she should act or what she should say. Other times, her emotional expressions are quite neutral.

Her Happy Moments are often related to the people around her and what is going on, but it is common for her to sit quietly and just smile as she looks around the room. It makes me wonder what she sees or what she is thinking that makes her so happy. When I ask, I never get an answer, but it’s good to see her happy.

It’s not just her feeling happy that affects me. It’s also what she says or does when she is happy. She has been talking more with her caregiver. I love observing their conversations. This caregiver is the only one she has responded to in this way during the entire five years we have had in-home care. As noted in earlier posts, I believe one reason for this is Kate’s general adaption to our new home in a retirement community as well as recovering from her stroke; however, I give this particular caregiver equal credit. She has made a difference in both of our lives.

The success she has had with Kate is her personality. She is kind and caring. She’s a bit “low-key” but talkative and gets along well with other residents and staff. She is not intimidating, and that makes it easy for Kate to connect with her.

Although Kate is more cheerful and talkative, there is one general pattern that remains. She is quietest in the morning. She still rarely says anything before lunch. It can be as late as 3:30 in the afternoon when we go for ice cream and sometimes as late as dinner before she is ready for any social engagement. Kate occasionally breaks this pattern and is awake and smiling early in the morning and maintains her good spirits the entire day and evening.

My being upbeat relates to the fact that, recently, she has been cheerful almost every afternoon and evening. The only difference is when the cheerfulness begins.

Our evenings continue to be our best time together. I wouldn’t describe them as “cheerful.” They are simply times when each of us is completely at ease. Once in a while, she is quite talkative. Most of the time, she is not. She is just winding down as she gets ready to go to sleep. It’s the same way for me. It is clearly the most relaxing time of our day, and it’s made even better by sharing this quiet time together – always with music. At this time of the year, it seems appropriate to say, “It’s a Wonderful Life.”