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Remembering the Diagnosis: January 21, 2011

Today is the 13th anniversary of Kate’s diagnosis with Alzheimer’s. That was a life-changing event. At the time we recognized that, but now we know and understand it far better. We don’t celebrate the day itself. We celebrate the fact that she is still with me and that we have lived joyfully. I say that even though her Alzheimer’s, her 8-day stay in the hospital for Covid in November 2020, and her stroke almost two years ago have had a significant impact on our daily lives. Today, our world is much smaller than it was before.

Until the pandemic, we were very socially active. When Covid entered the scene, we were suddenly left to entertain and feed ourselves at home. In November 2020, we both had Covid. Kate spent eight days in the hospital. She has required total care since she returned home. That means we dress her, bathe her, get her in and out of bed with a lift, and use a wheelchair when we leave the apartment. Our social life is now limited primarily to our getting ice cream at a café downstairs each afternoon followed by dinner in the dining room at night.

So, how can I say that we live joyfully? I have two answers to that question. First, Kate  has not experienced most of the problems that other people face. Second, we have found ways to enjoy life and each other despite the changes demanded by Alzheimer’s. We have binged on things we enjoyed before the diagnosis. That included attending musical and theatrical events as much as possible and eating out for lunch and dinner every day for 8-9 years before the pandemic. As a result, we have never been socially isolated.

Because we get out as much as we can, we have a large network of supporters. That is especially true among the residents and staff of the retirement community in which we live, but it also comes through the readers of this blog and our contact through social media.

There is no way to predict how long the good times will last. As I have reported in other posts, we have experienced some new challenges recently. When we began this journey thirteen years ago, we decided to enjoy life and each other for as long as we could. That has served us well, and we will continue to do that and be grateful for the joyful moments we share daily.

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Not Everything Goes As Well As I would Like

My previous posts about our caregiver situation are signs that not everything goes the way I would like it. The fact that we have had 39 different caregivers since our previous Monday through Friday caregiver had to resign for health reasons is an indicator of a serious problem. Fortunately, that continues to get better. We now have someone who is with us each weekday except Tuesday. We are still looking for someone for that day.

Kate continues to have “Happy Moments” despite her having to adapt to the different ways that each new person handles the various aspects of caregiving. One of those occurred recently when I arrived home after lunch. She was glad to see me. I spent quite a while with her talking about her family. Music was playing in the background, and I started singing or humming to her. She was enjoying herself so much that I took a dozen or more videos of her. Each one is a treasure that I have enjoyed sharing with family and friends.

Later in the day and the next morning, I was reminded that more unpleasant things can also happen. Shortly after we ordered our dinner that evening, she became very agitated. At first, I thought she was responding to a pain in her right knee or leg. That is the one that was affected by the stroke she had almost two years ago. She hasn’t been able to straighten that leg since then. The caregivers and I are most sensitive to that. It makes it hard to dress and undress her as well as getting her into and out of her bed and into a chair. The problem for Kate is that she experiences moments of pain. We always know about it because she lets out a loud scream or yell. It is usually over as quickly as it comes, but this time she remained agitated, so we asked the server to prepare our meals for carryout and went back to our apartment. It wasn’t long before she was calm again, but this was unusual. It was the first time I felt the need to leave any public place because of a problem like this.

The next morning she had a panic attack. This is not the first in recent months and followed the pattern of at least two others. She seemed to be frightened. That fright was expressed in her facial expressions as well as a vocal response I couldn’t understand. She was hot, and her skin was clammy. I did what I had done before. I turned on some music that I know she likes. In this case, it was “Edelweiss. I got in bed beside her and sang along with the music. I played it several times in succession and then drifted to “True Love.” In a short time, she was calm again.

Considering everything, we have lived joyfully since her diagnosis in 2011, but we do have our “ups and downs”.

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Making a Good Recovery

Most of my posts reflect a positive attitude about “Living with Alzheimer’s.” My self-perception is that I am an even-tempered person who is upbeat and calm even during life’s ups and downs; however, I have recently focused on the unusually high degree of stress I’ve experienced since the loss of Kate’s primary caregiver on November 9. Four weeks later, we had 29 different caregivers. It’s now been eight weeks, and the total number of different caregivers is 36. That is an average of almost five new caregivers a week. In addition, there have only been 11 out of 49 days when we had just one caregiver for eight hours. One weekend, we had 4 caregivers on Saturday and another 3 on Sunday. As a result, I have not been as upbeat as I usually am.

The good news is that I am making a good recovery. Part of the reason is that the number of new caregivers in a given week has declined significantly. Even more important is what I reported in my last post. One of the new caregivers has chosen to help me by volunteering to come three days a week (Monday, Wednesday, and Friday) during January and February. As I indicated in that post, that removed a major source of frustration, but there is more.

Her first day was January 1. Several weeks had passed since she had been with us, and I had forgotten how much I liked her. Yesterday was her second day, and I feel even better. She seems to be better than other caregivers we have had over the past three years. She has the basic CNA (certified nursing assistant) skills and a caring and compassionate personality that I value. She is also pleasant to have around.

To top it off, Tuesday we had another new caregiver (number 36 since November 9) who was excellent, and she will be back tomorrow. I don’t know about her long-term schedule, but it would be wonderful if she could come on Tuesday and Thursday when our Monday, Wednesday, Friday person is not available. It may not be quite as good as having one person five days a week, but it comes very close. Everything may turn out to be even better than it was before the loss of our previous person. I am hopeful.

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2024: Off to a Good Start

As my regular readers know, the last part of 2023 was the most stressful time I have experienced since Kate’s diagnosis on January 21, 2011. On November 9, the caregiver who had been with us since the first of August left us because of health problems of her own. Over the next four weeks, I had 29 different caregivers. That was the only time I had experienced that during the six years I have had in-home care for Kate.

The last two weeks of December were better. At year’s end, we had had 35 different caregivers since November 9. We began 2024 with a significant improvement. We have a person who has agreed to be here every Monday, Wednesday, and Friday through the entire months of January and February and, hopefully, for the rest of the year.

She is someone I liked the first time she came a few weeks ago. I was excited when I saw that she was on the schedule. When she arrived, I thanked her for her commitment. I was stunned and touched when she told me that she made her decision because she felt bad about my having so many different people and knew that was difficult for me.

The day went very well. I was especially impressed by the fact that she remembered several things that I had told her were important to me. Not everything had gone as well as either of us had wanted on her first visit almost two months ago, but she arrived determined that everything would go smoothly. It did.

It is still too early for me to get overly excited but it looks like we may have found someone who will be even better than the previous ones who have been with us for more than a few months.

I should add that I recognized long ago that my active involvement with Kate’s care is not something that not all caregivers appreciate. It means they are under my watchful eye, and I often have suggestions regarding her care. I have learned that most husbands in my position leave quickly when the caregiver arrives and return just in time for her to leave. In my case, I assist each caregiver with the process of getting Kate dressed, out of bed with a lift, and getting her something to eat before I leave for lunch. I am rarely gone for more than three hours of an 8-hour shift.


As we begin the new year, I feel optimistic that we will find someone else to fill in on Tuesday and Thursday. That means I will have four caregivers to cover all seven days of the week instead of the three I had before; however, that should be a piece of cake after the events of the past two months with almost forty different caregivers. Things are looking up.

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My Best Christmas Gift

As we approach the end of this Christmas season and the beginning of a new year, I am feeling grateful for many things. Most of all, I am grateful that Kate is still with me and that we continue to experience “Happy Moments” together. They come and go as she experiences different moods throughout the day, but I come to expect them at some point every day. Christmas Day was like that.

She was still asleep when the caregiver arrived at 11:00. After getting her up and ready for our Christmas buffet at 1:00, she was still quiet. She remained that way for the balance of the day. I call this her “neutral” time because she expresses little emotion.

I have also grown accustomed to very nice evenings with her after the caregiver leaves at 7:00. I wasn’t sure that night would be one of them, but I got in bed with her right after my shower and turned on a YouTube video of “Christmas in Vienna” from 2008. We attended that very concert. That led me to reminisce with Kate, and I extended that to include many other experiences we have had during the Christmas season as well as other special times throughout our marriage.

As I talked, Kate perked up and began to smile. This continued for almost an hour until it was time to call it a day. She never said a word during this time, but her facial expressions conveyed her happiness and her love. Most of the day hadn’t been that special, but it ended beautifully. Her smile, facial expressions, and holding her hand made all the difference. It was a beautiful way to end another Christmas Day together. That was my best Christmas gift.

Two nights later and again last night, we had very similar evenings. I know moments like these may seem trivial, but they mean the world to me at this stage of her Alzheimer’s. They are part of why I say Kate is my greatest source of stress relief.

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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.