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An Extraordinary Day

Once in a while, I highlight unusually positive experiences that I call “Happy Moments.” I use the word “moments” to emphasize that the experience is not usually long-lasting although it can occur over several hours.

On a typical day, Kate doesn’t express much emotion until the afternoon. She rarely says a word until after 2:00. This past Friday was very different. It began about eight o’clock in the morning and lasted until she fell asleep around 8:30 that night. It was a day filled with “Happy Moments.”

Kate generally sleeps late. Sometimes, she is asleep when the caregiver arrives at 11:00. Recently, however, she has waked up as early as 7:00. At 8:15 Friday morning, I checked on her. As I approached the bed, I could see that her eyes were open. I have a little routine that I follow each day when I see that she is awake. I say, “I think I see Kate. Yes, it is Kate. She’s my Texas gal. I’m so glad to see you.” Then I remind her that we started dating in our senior year of college, fell in love, and became engaged a year later. I go on to tell her that we’ve been married sixty years, and have two children, and five grandchildren.

Sometimes, but not always, she smiles. That day she smiled and started talking. She has aphasia, so I couldn’t understand much of what she said, but, as usual, I tried to play the role of facilitator saying things like, “Really?” “Tell me more.” “That’s interesting.” From that point, I got beside her in bed, and we began to talk. She dosed a few times, but we talked on and off until the caregiver arrived at 11:00.

A new person was filling in for our usual caregiver, so I wasn’t sure how Kate might respond to her, but she was fine as I left for lunch. While I was gone, the caregiver walked Kate around the hallways in her wheelchair and stopped to visit with residents in a couple of places. I learned later that she had been smiling and talking with other residents who had stopped to say hello.

Friday afternoon I had coffee with a longtime friend. When I arrived home, I went directly to the café where the caregiver had taken Kate for ice cream. I walked up behind Kate. As I looked around to see her face, she gave me a big smile. That happens frequently but not always. When it does, it warms my heart.

From there, we went to dinner in the community dining room where she always receives a lot of attention from the staff and other residents. She remained cheerful and talkative the entire meal. I can’t tell how long moments like these will last, and this time I was in for a surprise. She remained the way she had been all day until I turned out the lights around 8:30. It was an extraordinary day, unlike any I have seen before. I treasure moments like these.

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Something New, and It’s Good

For the past two and a half years, Kate and I have followed a rigid routine. The caregiver arrives at 11:00 each morning. The first item on the agenda is to get Kate dressed and out of bed. Until recently, we put her in a recliner in a sitting position where the caregiver served her lunch. She remained in the recliner until we went out for ice cream shortly after 3:30.

While I was away, Kate often felt sleepy, and the caregivers got in the habit of setting the recliner in a reclining rather than a sitting position. I began to feel that she was spending too much of her day on her back and decided to move Kate from her bed into her wheelchair instead of the recliner. Originally, I was concerned that being in the wheelchair all day might be uncomfortable for Kate, but she accepted the change without a problem.

After we changed our primary caregiver 3-4 months ago, the new person asked if she could take Kate out of the apartment. I told her that would be fine. It turned out much better than I thought. She has responded well to the additional attention she receives. I meet them for ice cream after returning from lunch. I frequently find them talking with other residents and staff in much the same way as when I am with her. Kate herself doesn’t often say very much, but she often smiles. That lets all of us know that she is happy.

This has now become a regular part of our daily routine. I’ve always felt that even the best of our caregivers don’t give her as much attention as I would like. The new routine solves that problem. It works for everyone. Kate and the caregiver like getting out of the apartment and mingling with other residents and staff. I, too, like it because it provides Kate more stimulation than when she and the caregiver are alone in our apartment. It’s a “Win-Win-Win” situation.

This is another reminder of the importance of intuitive thought or abilities. This change did not stop the progression of her Alzheimer’s. Her rational thought or ability hasn’t improved. Her memory of people, places, and things is gone. Her aphasia means that she says very few things that we can understand.

Nevertheless, all is not lost. Her intuitive thought and ability remain. As a result, we continue to enjoy life and each other. What more could I ask at Late Stage Alzheimer’s?

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Update on Kate’s Aphasia

I can’t pinpoint a time when Kate’s aphasia began, but I wrote a post in September 2019 about her loss of words and difficulty explaining things. Over the past four years, her aphasia has progressed considerably. Her stroke almost two years ago also had an effect on her speech. For a good while after the stroke, she didn’t speak at all. Since then, she has gradually improved. Over the weekend, I compared two videos. One was taken three months before her stroke and the other one Saturday night. The change is striking. Two years ago, she was able to speak much more clearly than now.

Today, she speaks very little. Most of the time when she encounters residents and staff, she doesn’t say a word at all. That is also true for her time with her caregivers and with me; however, she surprises us almost every day with words that we can clearly understand. For example, last week while the housekeeper was cleaning our apartment, she hit something that sounded a little like a knock on the door. Kate was lying in bed adjacent to the room where the housekeeper was working. Without any hesitation, she said, “Just a minute.”

Because such clarity of speech is rare, I jot down some of the things she says. Here are a few examples.

September 30 (In the Dining Room)

Server:          “How are you tonight?”

Kate:             “What about you?”

A few minutes later

A resident at another table tapped on the table.

Kate:             “Come in!

September 26

At Café for Ice Cream

Caregiver:     “Would you like some water?”

Kate:             ”Yes, please.”

When finished:

Kate:            “Thank you.”

September 21

Putting Kate to Bed

Richard:        “I’m going to be with you all night.”

Kate:             “Really?”

Richard:        “Yes.”

Kate:             “Great!”

September 8 (After getting Kate to bed)

Richard:        “I love you so much.”

Kate:             “I know you do.”

August 30 (After the podiatrist finished trimming her toenails)

Kate:             “Good job.”

August 28

Richard:        “I’m going to take my shower. Then we can have an evening to ourselves.”

Kate:             ”I like it.

August 17 (At dinner, Caregiver feeding her)

Waiting for the next bite of food

Kate:             “I’m ready.”

August 2     

In apartment after dinner

Kate:             “Are you going to stay home?”

August 2

After going to bed

Richard:        “You’re a beautiful gal, Kate.”

Kate:             “You, too.

August 1

Shortly after getting her in bed. I notice that her eyes are open, and she is smiling.

Richard:        “I’m right here where I like to be.”

Kate:             “Great. You’ll be here?”

July 18         

Daughter of caregiver stops to say hello while Kate is having ice cream downstairs

Daughter:      “I’ll see you later.”

Kate:             “Really?”

Kate looks at me and says: “She’s so nice.”

In dining room

Kate:             “I love it.”

Caregiver      “What do you love?”

Kate:             “I can’t tell you.”

Of course, my personal favorite occurred a week ago. She woke up early one morning and was talkative. I took several videos, but I didn’t understand anything she said in the first few. By chance, however, at the end of the last one, she said three words that I couldn’t mistake, “I love you.”

Note that these snippets are very short statements. There are times, however, when she is talkative. When that happens, there are a few clear words mixed with gibberish. Regardless, I treasure everything she says. I am grateful just to hear her voice.

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Kate’s Connection With A Caregiver

I know I sound like a broken record, but I want to add another Happy Moment to this blog. We don’t experience such moments 24/7; however, Kate has gradually improved during the past year. She continues to surprise me with her cheerfulness, smiles, and overall good humor.

I wondered how it would go when I learned that our previous M-F caregiver was going to fill in for our new caregiver one day this past week. It turned out beautifully and began the moment she arrived. When Kate saw her and heard her voice, she burst into one of her biggest smiles. It was obvious that she remembered her.

I’ve written before about this caregiver. She was especially attentive to Kate, and they bonded. Almost a year ago, I nominated her for “Employee of the Month,” an honor she received in March. That put her in contention for “Employee of the Year” among the winners of the other eleven months. She won that award as well. I was very disappointed to lose her, but she was having back problems and also wanted a change in her schedule that didn’t match our needs.

The day went very well, but the “Grand Finale” occurred after we returned to our apartment following dinner. Kate and the caregiver began what was at least a 15-minute conversation. For someone with aphasia who rarely speaks that is remarkable. She was perfectly comfortable and talked as much or more than the caregiver. It warmed my heart to be an observer.

Nothing has happened that could match that since then, but the past few days have also been good ones. Three days in a row Kate woke up with a smile, and yesterday she was also talking. This is not typical. That’s another change that has occurred more often in recent months. My explanation for the changes she has made in the past year has occurred because she feels more at ease. She receives a good bit of reinforcement from everyone, which makes her even more at ease. It also makes me very happy.

Addendum

At the time I uploaded this post yesterday morning, the first sentence in my closing paragraph was true; however, I couldn’t anticipate what would happen yesterday afternoon. When I returned from lunch, I found her especially cheerful and talkative. She and I talked steadily for almost an hour before we went out for her daily ice cream and dinner. She was less talkative during these times, but the situation was less conducive to conversation. When we came back to the apartment, we continued to talk. That lasted until she was in bed for the night. I took thirty-four short videos (mostly 20-45 seconds) during our conversations. It was an amazing experience.

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Unanticipated Moments: Happy and Not-So-Happy

I couldn’t get along as well as I do if I didn’t have eight hours of care for Kate seven days a week; however, in-home care also has its stressful moments. One of those occurred Saturday when I received a call from the agency that provides our caregivers. They were letting me know that our regular weekend caregiver was on vacation and that they were having difficulty finding someone to fill in.

As it turned out, they were able to find a “floater” (a staff member who works on the grounds of our community and moves from place to place wherever needed) to come in for an hour to help me get Kate dressed and up for the day. They also had someone who would help feed Kate at dinner as well as help with getting her to bed.

Every Saturday, I meet three other guys for coffee off the grounds. I was disappointed about having to cancel, but it gave me more time to be with Kate. I decided Kate and I would make the most of the day, and that turned out to be far better than I could have imagined.

On a typical day, Kate gets breakfast right after we get her dressed and out of bed even though it is lunchtime. While she is eating, I go out for lunch. This gave us an opportunity that we had never had before – having lunch together in the dining room downstairs.

The lunch could not have gone better. We sat at the table where we eat for dinner each night so it is a familar spot for Kate. The dining room is always the quietest venue on the grounds, and Saturday lunch is not busy at all. I don’t know if that matters to Kate, but it does to me.

I fed Kate as I ate my own meal. Kate was in a cheerful mood, and the staff gave us a lot of attention since they weren’t as busy as usual. It was a very special time for both of us, and we celebrated the occasion by splitting one of my favorite desserts, a strawberry cheesecake. We spent almost two hours there.

It was a beautiful afternoon with temperatures in the low-80s, a break from the mid-90s we had had recently. It seemed like a good afternoon to go outside. We sat for another hour under the portico at the main entrance to our community. It was shady with a gentle breeze, and I used my phone to play music that Kate loves. She was fully engaged the entire time. She never stopped smiling. It was a very special moment.

We finished the day with dinner in the dining room where another caregiver met us. After dinner, the three of us returned to our apartment where we got Kate ready for bed.

Kate was tired and went to sleep right after the caregiver left, but we had had a very special day together. That’s one more thing for which I can feel grateful.

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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.