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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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Ups and Downs Over the Past 10 Days

In most of my posts, I report on our positive experiences. That’s because we don’t really have many negative ones to report; however, we had two unpleasant surprises recently. A week ago Thursday she woke up early and was fine. I spent some time with her listening to music and chatting with her. We were quiet for a few minutes, and then she seemed to be worried. That increased to agitation. It reminded me of delusions she periodically experienced several years ago. During those times, she was bothered or concerned but never to the degree I noticed that morning.

She felt hot and her skin was clammy, so I took her temperature. It was normal. Then I took her blood pressure. It was 194/130. Her pulse was 96. These are all far above her normal readings. I called her doctor whose office is next door to our building. He and his nurse came over right away. They checked her blood pressure, and it had gone down. She seemed more relaxed. They were with us about 15 minutes, and her blood pressure continued to go down, and she seemed fine. We concluded she must have had a delusion that frightened her.

Two days later, she had a similar experience. Her blood pressure was 193/126. About 20 minutes later, it dropped to 123/76. We haven’t had any other such experiences since then, and I hope this doesn’t become a new part of our lives.

Those two experiences were followed by at least three very good days. On each occasion, she woke up early and was awake for a good bit of the morning before the caregiver arrived. During the afternoons, she was more cheerful than normal and one of those days, she was very talkative. She spoke to people we saw while having our afternoon ice cream as well as at dinner that evening.

When she has happy days like these, I am happy too, so it was a great week for both of us. Her behavior continues a trend that has been taking place for 8-10 months. Over that time, she has felt more at ease. That matters a lot. When she is at ease, it is easier for her to smile and talk.

Yesterday was not a good day for her. She seemed to be fine in the morning, but her mood had changed by the time I returned from lunch. She smiled briefly when I returned, but she didn’t appear to be happy after that. It was only at dinner that she began to change. When she spoke to two guests, the caregiver and I were amazed because she hadn’t been very responsive all day.

As often happens, we had a good evening together. I have no idea what made such a difference during the afternoon.

I drafted most of this post over the weekend, but I am glad to report that this morning she awoke in a cheerful mood with lots of smiles. She hasn’t talked, but she has smiled and laughed at things I have said to her. We’re off to a good start. Right now, I am sitting up beside her in bed as I close this post. She is smiling and talking. I can’t understand what she is saying, but I enjoy her Happy Moments. It looks like we could be in for another good day.

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Reflections on Love and Caring for Kate

I’ve been Kate’s caregiver for more than twelve years, and the more experience I get, the more strongly I believe that love has played a critical role in our relationship. Anyone can give attention to someone with dementia, but it is easier when you love someone. For that reason, I suspect that a spouse has a potential advantage over other caregivers.

Love can be a great motivator. As Bryan Adams’ song, “When You Love Someone” says,

When you love someone,

You’ll do anything.

You’ll do all the crazy things

That you can’t explain.

You’ll give up everything,

And you’ll never let them down.

You’ll be more compassionate

And more understanding.

And you’ll always be there

For the one you love.

The recipients of care also benefit from being loved. They are happier.

Ours has always been a loving relationship, but love has played a more significant part in our marriage since her diagnosis. In the beginning, it didn’t require much effort on my part. We had agreed in the first few weeks to devote ourselves to enjoying life and each other as long as possible. That was easy because we found pleasure in the same things – movies, theater, music, dining out, and travel. My responsibility was simply to arrange an active lifestyle that included all of these.

After her diagnosis, I felt an intense desire to be with her as much as possible. I immediately started having lunch with her every day. I was also transitioning into retirement, so I started taking the afternoon off. That enabled us to spend much more time together than we had had previously.

All of the activities and time together further strengthened our relationship. In some ways, it was like a long honeymoon. We were simply binging on things that had meant so much to us in the past, and we were doing it together.

Of course, Alzheimer’s has required significant changes in our lives. At first, Kate had several activities that she could do on her own. One of those was her computer. She worked many hours a day on that task. She worked mostly on a family photo album. She was never able to finish it because she lost her ability to use the computer. When she was no longer able to do that, I gave her an iPad which was her only self-initiated activity until the pandemic hit in 2020. Since then, I have had to assume greater responsibility for keeping her occupied.

Along the way, it became harder for her to remember my name or that I am her husband. Fortunately, she continued to recognize me as someone she knows, likes, and trusts. During this phase, I began to place greater emphasis on expressing my love for her. I did, and still do, that in several ways throughout the day.

I greet her enthusiastically when she wakes up in the morning. I tell her how glad I am to see her and remind her that we met in college and have been married for 60 very happy years. I talk about our children and grandchildren. I also mention how thankful I am that we both went to TCU. If we hadn’t, we would not have met.

I have a similar routine when I return home after lunch. As I open the door, I say something like, “Hello, I’m home. I’m looking for Kate. I wonder where she could be?” I continue talking as I walk to her, and I often see a smile on her face. Then I kneel beside her and tell her how much I like that smile and that I missed her.

Recently, I did something a little different. I whistled “I Love You a Bushel and a Peck” As I walked toward her, I could see the smile emerging on her face. That’s the way she expresses her love for me.

As I have noted in a previous post, our evenings are the most romantic part of our day. We are both more relaxed than at any other time. We appreciate our time alone.

Love can’t stop the progression of Kate’s Alzheimer’s, but I believe being loved, and receiving attention from our primary caregiver, as well as the staff and residents of our retirement community have played an important role in the happiness she enjoys while “Living with Alzheimer’s.” That makes me happy too.

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A Very Special Father’s Day

I would never have guessed that right after my previous post about “Very Happy Special Moments I would be treated to the best Father’s Day present I could want. Kate had a truly fantastic day. It began before 8:00 in the morning and continued until she dosed off to sleep around 8:30 last night.

She was not only cheerful but very talkative. As I often do at times like this, I got in bed with her, and we talked almost constantly over a period of three hours. Of course, her aphasia prevented my understanding what she was saying, but I played the role of facilitator saying things like “Really?” “That’s interesting.” “Tell me more about that.” “I love talking with you.”

Her only downtime was while I was at lunch. The caregiver didn’t give her the same attention, and she was quiet when I arrived. The good news is that she recovered when I knelt down beside her recliner and told her how happy I was to see her.

I should add that she was not agitated. She was simply talkative, and I enjoyed every minute with her. It had been a day filled with Happy Moments. A Father’s Day to remember.

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Very Special Happy Moments

I know it can’t last forever. That’s why I continue to celebrate Happy Moments with Kate. For months, these have occurred at least sometime during every day. Some are more special than others. One of those occurred yesterday when I returned home after lunch.

I can’t predict her behavior, but for quite a while, she has greeted me with a smile at least half of the time. She is always in her recliner with her back to the door. As I open it I say, “Hello, I’m home.” Then I say, “I’m looking for Kate. Where is she?” I approach her recliner, and say, “There she is.” I kneel beside the recliner and tell her how happy I am to see her. If she is smiling, I tell her how much I like her smile and that it makes me happy.

Yesterday, she smiled and laughed just like a child might do when a parent returns. I also responded enthusiastically, and we enjoyed a few moments before I suggested we find some music that we could sing together. I turned on a “Sing Along with Seniors” YouTube video.

For the next 20-30 minutes, we sang old songs like “I’ve Been Working on the Railroad”, “Oh, Susanna”, and “She’ll be Comin’ Round the Mountain”. She was fully engaged, smiling, and mouthing the words. She was doing so well that I suggested to her caregiver that we go for ice cream earlier than usual. That turned out to be a good idea. She continued her cheerful mood, smiling and responding audibly to several people who spoke to her.

Moments like these make my day, and I am grateful to have so many of them. Occasionally, I’m asked what keeps me going. There are many things, but none of them compares to the Happy Moments we share at this stage of her Alzheimer’s. It will be a sad day when they are gone.

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Our Anniversary Celebration

One of the things I’ve learned about “Living with Alzheimer’s” is that people’s experiences can be quite different; however, there is at least one thing that all or most dementia caregivers experience: unpredictability. One minute Kate is smiling cheerfully. The next she is withdrawn.

Because of that, I am never sure how she will react to a situation in which I would love for her to smile or just hear her say a word or two. With that in mind, I prepared something special for our 60th anniversary last week. I decided to take her out to dinner at one of our favorite restaurants, Casa Bella. We hadn’t been there since November 2020. In fact, we hadn’t been out anywhere in more than two and a half years. Kate was beginning to lose her mobility before that, and she was in bed for so long with Covid that she completely lost it. Since then we have only been able to move her with a lift to get her in and out of her bed and into her wheelchair. Thus, going out to eat requires a vehicle that is wheelchair accessible.

Getting transportation was easy. I simply called the agency that provides in-home care for our retirement community, but I had other concerns as well. I didn’t want to put her in a crowded restaurant, so I made reservations for Tuesday night after Memorial Day when I thought it was less likely to be busy than later in the week. I called the owner of the restaurant and made reservations for 5:00 pm. That’s when they open for dinner. At the same time, I arranged a table in the room where we had often eaten in the past. I also asked our caregiver to stay an hour or two later than usual.

The only remaining concern I had was Kate’s mood. I wanted the experience to be as joyful as it had been on our previous visits there, but I knew there was no way to predict how she would feel or react. Nor was there any way I could ensure that she was in a cheerful mood. As it turned out, everything worked out beautifully.

The day began on a positive note. Kate slept late that morning. She was still asleep when the caregiver arrived at 11:00. I was happy about that because she is sometimes worn out later in the day after waking early.

When I arrived home from lunch, she was resting in her recliner as usual. She smiled when I approached her. I spoke to her for a few minutes letting her know how happy I was to see her. I turned on some “Sing-Along-for-Seniors” music on YouTube. She responded well to that. I sang, but she didn’t. Nonetheless, her smiles and facial expressions showed that she was enjoying herself.

We also had a good experience when we went out for ice cream. She smiled much of that time and responded a little to those who spoke to her – at least more than she usually does. Then we came back to the apartment where we met the driver who would take us to dinner.

We arrived as they opened right at 5:00 pm. The owners were not there, but they had prepared the staff for our arrival. They greeted us warmly and got us settled at our table. Kate and I as well as our caregiver (who had never been there before) enjoyed every minute.

Not long after we were seated, the owner arrived and came directly to our table. We had a nice visit with her. Although I can’t remember what she said, I was pleased that Kate responded audibly to something she said. A little later, her husband also dropped by to say hello. We had a good dinner, but the real enjoyment was being back in a place where we had eaten many meals over a period of fifty years. The bonus was that Kate enjoyed herself the entire time. That made for a very special sixtieth anniversary. I could not have predicted that the day would go so well. I’m already thinking about the possibility of doing this again.

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A Very Special Day

Kate continues to have many “Happy Moments.” There is a general pattern to her days. She usually sleeps a good bit until 11:00 when the caregiver arrives. For the past six months or so, however, she has been waking up early (before 8:00 or 9:00). She doesn’t often remain awake. She doses off and on and rarely speaks before the afternoon.

Her best part of the day comes after 2:00. Sometimes it doesn’t start until we have ice cream at 3:30 or during dinner. Our evenings after the caregiver leaves are usually good “together times” for us although she is sometimes tired and goes to sleep early.

The one thing I can count on is that she never seems to have what I would call a bad day. She does, however, have days when she doesn’t display much cheerfulness. They are usually days when she is tired, and they typically come after a day when she has been awake a lot and very cheerful. Friday was one of her cheerful days. It started in the morning and continued most of the day and evening before going to sleep.

She was awake around 8:45 that day and was more alert than usual. She greeted me with a big smile and responded audibly to me. A few of her words were understandable. When moments like these occur, I usually drop whatever I am doing and get in bed beside her, and that’s what I did this time.

The night before I had received a text from the facilitator of a support group in which I participate twice a month. He reminded me of yesterday’s meeting at 9:30. I told him I would attend via Zoom. When I saw that Kate was in such a good mood, I sent him a text indicating I wouldn’t be there.

That was a wise decision. It got the day off to a very good start. Except for a short time during which I got her meds, something to drink, and fixed some homemade applesauce for her (my morning routine for her), we just enjoyed being together. She was very talkative for the first hour. Then she began to relax. About 30-40 minutes before the caregiver arrived, she went back to sleep, but we had had a grand morning.

I went downstairs to lunch while the caregiver fed Kate. I returned for a few minutes after lunch and found that her cheerfulness had vanished. I left to have coffee with a longtime friend, a Friday ritual of mine. When I returned, she heard me when I opened the door and began to smile. I discovered that her cheerfulness had returned as well. The caregiver told me that she talked with a number of residents and staff when they went for ice cream.

She continued to be cheerful and talkative during dinner and afterward. As we were leaving the dining room, several residents talked to her, and she smiled and responded audibly as well.

After getting her to bed and the caregiver left, we enjoyed our time together until we called it a night. It had been an exceptional day. Who would have guessed we might experience this kind of day so late in her Alzheimer’s? Not I, but I am enjoying “Happy Moments” like these to the fullest.

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Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

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Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

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Reflections on Living with Alzheimer’s: Part 1

Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?

There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.

Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.

There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.

Pre-Diagnosis

  • Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
  • Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
  • We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
  • We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
  • For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
  • There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.

This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.