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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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A Day to Remember

Twelve years ago today shortly before noon, Kate’s doctor delivered the news we had expected but did not want to hear. The results of her PET scan showed signs of plaques and tangles associated with Alzheimer’s. Our lives have never been the same.

We went to lunch right after leaving the doctor’s office. We talked about the results and the implications as well as we could understand them. We decided to make the most of whatever lay ahead, but we never knew that we would be able to live so joyfully. That was true from the beginning and remains so to this day.

Looking back, I see that we lived in a big world filled with activity and social engagement. Our world today is much smaller. The highlights of every day are our afternoon trip downstairs for ice cream and our dinner in the dining room of our retirement community. You might think that is sad, but we have found that both activities involve a good bit of social connection with residents and staff that is invaluable to us. Our move to a life plan community came at the right time. We may engage in fewer activities now than in the past, but the support we receive is powerful enough to keep us happy.

So, I am grateful on this day. I’m grateful that she is still with me, and I mean that in several ways. First, she is still alive which beats the average life expectancy from diagnosis. In addition, she still lives with me, sleeping right beside me. Finally, although I don’t think she ever remembers that I am her husband and rarely remembers my name, our relationship remains strong. That means the world to me.

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Kate’s Aphasia

As I have noted in previous posts, Kate has made a good recovery from her stroke ten months ago. On the other hand, the stroke has had a lasting effect on her speech. Her aphasia is worse than before. That means I can’t understand most of what she says. My initial response was sadness for both of us. I felt it must be frustrating not to be able to communicate things she wanted to say, and I missed the kinds of conversations we used to have.

She began to experience aphasia a year or two before the stroke. At that time, she could tell that some things she said didn’t come out the way they should. She didn’t appear to feel frustrated, but she clearly knew that what she said wasn’t correct. Gradually, that disappeared. Now, she doesn’t display any sign of awareness that what she says doesn’t coincide with what she intends to say.

I never correct her. Instead, I act as though I understand every word and try to give her an appropriate response. Thus far, I can’t detect that she ever feels that I have misunderstood her. From the perspective of people watching us talk, I think we look like an ordinary couple having a conversation. If they could hear us, they might think both of us have mental problems.

In the last few months, Kate has grown more at ease with her surroundings and other people. That led to her talking more. Along with that, she sometimes says things that are very clear. They are always short reflexive comments to things that are said to her. During the past few days, she has made more clear comments than she has in the past couple of years.

I regret that I can’t remember many of the things Kate says, but I do sometimes jot them down right after they occur. Here are a few recent examples.

Yesterday (when we were having ice cream)

Resident (who saw me trying to help another resident with her phone): “What would we do without Richard to fix all our phones?”

Kate: “Yeah” and laughed.

At Home after Dinner

Caregiver (who had given Kate something to drink): “Did you have enough?”

Kate: “I suppose so.”

Few Minutes Later

Richard (after a comment by caregiver): “You’re giving (the caregiver) ideas.”

Kate: “I know it.”

Day Before Yesterday (Right after Finishing Ice Cream)

Kate to Caregiver: “Thank you for the party.”

Later at Dinner (Caregiver didn’t understand something Kate said)

Caregiver: “I don’t know.”

Kate: “She doesn’t even know.”

After Dinner

Caregiver: “I can’t go down my back doorsteps.”

Kate: “I can’t either.”

The caregiver and I laughed.

Kate to us: “You’re funny.”

Last Week (while having ice cream)

Richard to Kate: If you don’t like that, I’ll eat it.

Kate to Caregiver: “He would say that.”

Short Time Later (Caregiver had stepped away to get something for herself)

Caregiver: “I’m back.”

Kate: “I’m always glad to see you.”

Last Week

Richard to Kate: “I spilled some water on the floor.”

Kate: “We’ll see about that.”

These things may seem trivial to some people, but at this point in Kate’s Alzheimer’s, they are treasures to me. They are signs that the girl I married is still with me. She hears what is said in her presence and reacts accordingly. Along with that, she is happy. Me, too.

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“It’s a Wonderful Life”

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

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

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

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

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

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

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

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

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“Living with Covid” While “Living With Alzheimer’s”

It’s been a little more than two-and-a-half years since Covid invaded our world. We all have stories we can tell about the ways in which that has affected us. Kate and I are no exception.

Although Covid has had a continuous impact on us, there are three specific events that are worth mentioning. The first occurred in mid-March 2020. That’s when restaurants and other businesses began to close. Prior to that, Kate and I had been eating out for lunch and dinner every day for eight or nine years. It made life easier for us than my preparing dinner and gave me more quality time with Kate. Along the way, we also went to Panera almost every morning where Kate got a muffin. In the afternoon, we often went to the café at Barnes & Noble. The greatest benefit of these daily routines was preventing us from being socially isolated. We often saw friends at these locations and became acquainted with servers, managers, and other personnel.

The pandemic brought that to an abrupt end. During the first week or two of the pandemic, Kate also lost her ability to work jigsaw puzzles on her iPad. That was her last remaining self-initiated activity. Daily living suddenly became less exciting for both of us. As Kate’s caregiver, that meant I had to work harder to keep her occupied.

The change in our active routine left her bored much of the time. She started napping more throughout the day. I read to her and played music for her, but that wasn’t enough. I also gave her tours of our house, pointing out pictures and furniture that had some connection to her and her family or to special events in our lives.

In spite of my efforts, there were moments when she wasn’t engaged in any activity. That led to her resting more during the day. We had lost a significant portion of the experiences that had given us so much pleasure before.

Of course, the biggest impact of Covid was that both of us tested positive for the virus just before Thanksgiving in 2020. Kate was in the hospital for eight days without me. The experience was traumatic for her. She was so frightened when she returned home that we were unable to get her out of bed for seven weeks. Before getting Covid, she was already on the verge of losing her mobility. Being in bed for so long pushed her over the edge. She has never walked since.

Our third experience with Covid began almost two weeks ago when I tested positive for the second time even though I had received all of the vaccinations and boosters. It’s been a mild case. My only symptom was a sore throat. The policy here in our retirement community is for people with Covid to stay in their apartments for the first five days. For the next five days, you can leave the apartment if you are wearing a mask, but you can’t eat in any of the campus venues.

The social isolation we experienced was reminiscent of the early days of Covid when we could no longer go out to eat. This appears to have had a greater impact on me than on Kate. I miss the contact with other residents and staff. They have played a major role in our lives since we moved here a year and eight months ago. I miss that and will be eager to get back to our normal routine starting today. That’s just in time for a visit from our daughter and son this weekend. We’ll have much to celebrate.

My biggest concern has been the possibility of Kate’s getting the virus. By now, it looks like she has escaped. The biggest and best surprise is that she had four or five outstanding days while we were restricted to our apartment. Not surprisingly, much of that involved music. In addition, however, she has been talking more. That has been especially noticeable with two of her caregivers. One of those is our primary caregiver with whom she feels quite comfortable.

On Sunday, one of our weekend caregivers took an extended amount of time to go through one of Sarah’s family photobooks with her. Kate didn’t seem to notice the photos, but the caregiver told her about the information explaining them. Kate not only took an interest, but she also began to talk to the caregiver. The next thing I knew they were having a semblance of a normal conversation. It wasn’t completely normal because much of what Kate said was impossible to understand. This was especially striking to me because Kate has never shown any special connection or feeling for either of our weekend caregivers.

The story doesn’t end there. When it was time for dinner the conversation ended. Kate took the caregiver’s hand and kissed it. Then after getting Kate into bed, the caregiver told her goodbye. I said, “Wasn’t it nice to have Malia with us today?” Kate looked up at her and said, “Thank you.”

Last night, we had a wonderful time together. Like any other night, we watched YouTube music videos, but there was a difference. Kate has never been as enthusiastic about symphonic music as I have, but last night I played Dvorak’s Symphony No. 9 and Tchaikovsky’s Symphony No. 5 back-to-back. She loved both works, and I was thrilled.

As the music played, I did two things that I believe facilitated her response. First, I explained what was happening as the orchestra moved from one movement to another. For example, at the last portion of both symphonies, I let her know that the music was going through a buildup to the grand finale when the tempo would increase and the music would be much louder. Second, in several portions of the music, I emphasized the rhythm by audibly saying things like “bump da da bump da da bump, bump, bump.” At the same time, I held her hand and moved her arm back and forth. She was fully engaged and laughing. I hope we’ll be able to repeat our performance again soon.

Thus, I am coming to the end of our quarantine with a good feeling that Kate appears to have missed Covid, and she has had an extraordinary series of moments that have been very special to both of us. Life is good, and I am grateful.

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A Brief Update

Once again, I find that I am behind on another blog post. On top of my usual excuses is that I’ve had computer problems that were finally solved yesterday. During the past two weeks, my computer wouldn’t connect to our Wi-Fi network or any other one. In the meantime, I’ve been occupied with Kate (many good moments) and other personal issues like an infection in one of my toes and pain on the right side of my other foot. Those involved several doctor’s visits that have solved most of the problems.

The best news is that Kate’s improvement has continued over the past few months. That has given us more quality time together which has boosted my spirits greatly. I’ve been particularly pleased that our evenings are once again very special times. Our love for each other is more consistently evident now than in quite a long time.

I continue to be pleased with our new primary caregiver (8 hours daily from Monday through Friday). I feel less stressed now than I did a few months ago, and my blood pressure is staying at normal levels. Prior to replacing the previous primary caregiver, my blood pressure was bouncing periodically to higher levels than those to which I had been accustomed.

I feel the need to stress again that I don’t mean that her Alzheimer’s is any better than before, only that she is more comfortable and at ease, than she had been since her hospitalization with Covid almost two years ago in November 2020. That, our move a few months later, and then a stroke were all significant events that brought about dramatic changes in our lives. It hasn’t been easy. Some of those changes have been permanent, for example, Kate now requires total care with all her ADLs (activities of daily living). Our world is much smaller now; however, we continued to enjoy life and each other. And I am grateful.

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More Happy Moments


Two months ago this week, I reported on the progress Kate has made over the past few months. I noted the improvement was not with her Alzheimer’s, but she has more cheerful moments and is talking more than she has since her stroke six months ago. Much of what she says is not intelligible; however, she responds in a way that conveys she knows what we say or ask. Overall, she seems to be more at ease.

Despite my encouraging report, I was guarded about the future. Would this continue? If not, how long would it last? I still don’t have answers to these questions, but she has continued to amaze the caregivers and me as well as the residents and staff we see on a daily basis.

Last week, her caregiver and I were stunned by a conversation she had with Alicia, a member of the food staff. She’s a young woman who took an interest in Kate more than six months ago. She is a person of great warmth who leans over and speaks to Kate in a gentle voice. Kate responded well to her in their first contacts together.

A week ago Saturday afternoon while we were having our ice cream, she stopped to say hello on her way to the dining room. Until then, Kate had been rather quiet. She wasn’t unhappy but not cheerful and not ready for conversation. When Alicia put her hand on Kate’s shoulder and spoke to her, Kate smiled and responded audibly. It was striking how quickly her mood changed. For the next 5-10 minutes they engaged in a conversation in which Kate was almost an equal partner.

Since she had to report to the dining room for the evening shift, Alicia couldn’t stay long. As it turned out, she was our server that evening. That provided additional opportunities for them to talk. I took several short videos of their conversation. Kate and I frequently have conversations like that. Sometimes our children have the same experience. A few weeks ago when my brother and his family paid us a visit, Kate responded similarly to my brother’s wife. There are also periodic occasions when she makes a brief response to a staff member or resident; however, this was the first time I had seen Kate engage in a conversation with someone outside our family. She was perfectly at ease.

It was only three or four years ago that I learned about the distinction between rational and intuitive thought/abilities and their significance with respect to dementia. My thanks to Judy Cornish (The Dementia Handbook and Dementia with Dignity) for introducing me to this distinction. The experience with Kate and Alicia was a dramatic example of how well Kate’s intuitive ability works even though her rational abilities are virtually gone.

It also reinforces my belief that the improvement she has experienced in recent months relates to her intuitive abilities. Kate may not know what day or year it is, people’s names, or where she is, but her ability to sense the world around her enables her to experience pleasure.

Our daily routine has opened the door to other people who relate to her as a person, not a person with dementia. She has the same experience at home with the caregiver and me. Together, these things must be making a difference how she feels and responds, but how long will it last? I don’t know. Stay tuned. I’ll let you know. In the meantime, I’ll continue to take pleasure in each moment we have together.

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An “Awesome” Day

For quite some time Kate has followed a morning routine that involves her sleeping until 10:30 or 11:00. Once in a while, she breaks this routine. She is awake earlier than usual, sometimes as early as 6:00. When this happens, she often sleeps off and on until we get her up at 11:00; however, in recent weeks, she has remained awake. I gladly put aside other things I had intended to do so that I can spend that time with her. They are very pleasant times for us, but she is rarely talkative. Typically, she doesn’t say a word until after lunch. Yesterday was not a routine day.

She was awake about 8:00. Not only that, she was cheerful and talkative. Despite her aphasia, she spoke more words that I (or anyone else) could understand than I have heard from her in a long time. For a while, I stood at her bedside talking with her and making 10 short videos. I followed that by getting in bed beside her. We talked and talked. I stayed with her until she closed her eyes around 10:30.

She was asleep when the caregiver arrived at 11:00, but we got her up for lunch. She continued to be in good spirits. I went out for lunch and a haircut. When I arrived home, she was still cheerful and responded as well as her aphasia would permit. She was unusually happy while we were out for ice cream and dinner and also said a few words to people who spoke to her.

We closed the day with a very nice evening together. We talked intermittently while we watched YouTube music videos. I should add that on other days when she has been talkative, she has seemed hyper, but yesterday she spoke naturally except for her aphasia. I can’t recall a day when she was so consistently cheerful and at ease. It was truly an “awesome” day.

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Kate is Improving. What’s Going On?

From the accounts of other caregivers and my personal experience with Kate, I am well aware that people with Alzheimer’s can change from day to day and even from moment to moment, but something different has happened with Kate in the past several months.

In a number of ways, she is better than she was a year ago. Her improvement is something I didn’t expect. She doesn’t sleep as much. She’s more cooperative when we perform our daily responsibilities (dressing and undressing her as well as transferring her in a lift from her bed to her recliner or wheelchair and back again). The other day she laughed as we picked her up from her bed. It was almost like she was enjoying a ride in an amusement park. She has even displayed some learning as we go through the various steps – for example, where to put her hands. She is also talking a little more even though most of what she says is unintelligible. She is more likely to respond to staff and residents when they speak to her. Her response is typically a smile or a facial expression, but sometimes she speaks in short phrases that are quite clear.

In addition, she conveys by her facial expressions and audible reactions that she clearly understands what we saying. The other day I told the caregiver about recent research that involved bringing dead pigs to “life.” Very quickly, she said, “Oh, God,” something I had never heard her say before.

Her stroke in February had an immediate impact on our evenings together. For weeks, she went to sleep shortly after the caregiver left. That was a low blow for me because that had been the best time of the day for us. It was a time when we had no further obligations and could simply focus on being together.

Now, she is sometimes awake one to three hours after the caregiver leaves. Our evenings are once again among the best parts of our day. I say “among” because she has good moments at other times of the day as well, particularly during the afternoon. She has never been a morning person, and she continues to sleep or rest until 11:00 when the caregiver and I get her up for the day. She rarely says a word until after lunch.

I’ve wondered why these changes have happened and see several possible explanations. The first seems obvious. She is simply recovering from her stroke. She was mostly comatose the first few days following the stroke. Since then, she has gradually reverted to a pattern of sleep that was typical before then.

She hasn’t made a complete recovery, however. Her aphasia hasn’t improved significantly nor has the damage to her right leg that she is unable to straighten. It is always bent at various degrees. In other ways, the effects of the stroke seem to be a thing of the past.

Apart from her recovery from the stroke, I believe there are two other things that may account for her recent improvement. Two major events disrupted our lives during the past year and a half. First, we both had Covid just before Thanksgiving in 2020. Kate was hospitalized for eight days. Five months later, we moved to a continuing care (life plan) retirement community. Although Kate has never shown any signs that she was aware of either of these; our daily lives changed significantly as a result of both. Now, we’ve established a new routine.

We get her up shortly after the caregiver arrives at 11:00. She eats her lunch between 11:45 and 12:30. During that time, I go out for lunch and run errands. I usually return before 3:00. That’s when we prepare for our afternoon visit to the café where Kate gets ice cream. We are there almost an hour before moving to the dining room for dinner.

Our afternoon ice cream and our dinner in the dining room are highlights of our day. They are not simply opportunities to eat. They are times when we connect with other residents and staff. That’s important for both of us. Kate receives special attention, something that many people at this stage of dementia don’t experience. When people approach us, they invariably speak to her first. They often comment about her hair and what she is wearing. When she smiles (something she does more often now), they respond with pleasure in much the same way that I do. I love seeing that and have to believe that Kate does as well.

There is one other thing that may account for these changes. We changed our primary caregiver in June. The new person is a very caring person who is with us eight hours a day Monday through Friday. Kate has developed a feeling for the new person that she hasn’t had for anyone else.

When you combine the regular attention of the caregiver who is with her eight hours a day, the personal contact she gets with other residents and staff, and the time I spend with her, she receives a lot more attention than she did before. I believe that establishing a new routine and a new caregiver plays an important role in why she seems more at ease now.

I would like to believe that her Alzheimer’s has improved, but, in that respect, she is much the same. Her memory and other rational abilities are no better than they were before; however, her intuitive ability to experience the world around her is working quite well. She doesn’t know the names of the music she hears, but she enjoys it; she doesn’t know the names of the foods she eats, but she enjoys her meals; she laughs at things she thinks are funny, and she appreciates being recognized by people around her. Our current routine provides all of these, and Kate is able to experience them intuitively even if she can’t tell you where she is, the names of the people she is around, or do many of the things she used to do. All of these things make me believe she is more at ease now because her daily life provides her with the kind of experiences she can enjoy through her intuitive ability.

Addendum

I had written this post before my brother and his wife as well as our nephew and his wife arrived for a brief visit yesterday afternoon. Prior to their arrival, I wondered if they would be able to see the Kate that I described in this post. I can’t tell you how elated I was that they caught her on a very special day. She smiled a lot and also responded to their comments and questions. We could clearly understand some of the things she said. She even said goodbye to them when they left. The night before, my brother’s wife asked if I thought Kate could understand what people say to her. I told her I had seen plenty of evidence that she can. Yesterday, she got a first-hand observation of that. It was a memorable experience for all of us.

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Our Lives at Stage 7 of Alzheimer’s

For the most part, “Living with Alzheimer’s” has meant a long gradual decline for Kate and a similar pattern for our adaptation to change. The way I describe it is that our “world” becomes smaller as she declines. Until the pandemic, however, we continued to live somewhat normally. The pandemic caused us to live a more sheltered life. I know that was true for everyone, but it brought us some special challenges.

Prior to that, we led active lives. We went to Panera almost every morning. We ate out for both lunch and dinner, and we went to the café at Barnes & Noble in the afternoon. During that time we had contact with lots of people, and Kate worked jigsaw puzzles on her iPad 6-8 hours a day.

Unlike earlier changes, the pandemic brought about more abrupt and consequential ones for us. Suddenly, we were homebound. No Panera. No meals out. No Barnes & Noble. To make matters worse, Kate had already begun to lose her ability to work puzzles on her iPad. One week into the pandemic, she completely lost that ability. It was her last self-initiated activity.

That put a good bit of pressure on me to take up the slack. I used all of the tools in my caregiver’s toolbox to do that; nevertheless, we had inactive moments during the day. Kate became tired of specific activities and wanted to rest more than in the past.

At least six months before the pandemic, she began to decline in other ways. She had more difficulty getting out of a chair and out of bed in the morning. She was becoming uneasy going down steps and unsteady while walking. Her doctor and I had talked about a walker and decided that her Alzheimer’s would make that difficult. A wheelchair would be the next step. I am sure all this was exacerbated by our more sedentary lives during the pandemic.

Two weeks before Thanksgiving, we both got the virus. That brought about another abrupt change. She was in bed so long that she lost her mobility altogether. I’ll never know exactly, but I believe the virus pushed that ahead 6-8 months.

Our world shrank considerably. It hasn’t all been downhill since she had COVID. We moved into our new home in April 2021. Gradually, we started getting Kate out of bed each day. Then, we began to take her on short walks in her wheelchair around the various buildings in our community. I had been bringing in carry-out meals from the dining room, but as Kate began to feel more comfortable, we started eating in the dining room. After that, we added an afternoon trip down the hall for ice cream. Being able to get Kate out twice a day has improved our quality of life significantly.

Having said that, we continue to have ups and downs in our daily lives. As I noted earlier, our world is much smaller now. That became especially true with Kate’s stroke 3 ½ months ago. Her aphasia began at least two years ago and worsened with the stroke. She’s recovered a little, but not much. She talks significantly less than she did before, and what she says is mostly unintelligible. The good news is that in recent weeks, she is talking more. I am hopeful that she will improve, but I also recognize that Alzheimer’s itself will eventually take that ability away from her.

At this stage, she sleeps or rests more than she did in the past. She is in bed at least eighteen hours a day and sometimes a little more. That has been the pattern since she came home from the hospital after COVID. She actually sleeps more now because she often falls asleep between 6:30 and 7:00 right after the caregiver leaves. That is new since her stroke. Prior to that, we spent the evening watching music videos on YouTube. That was the best part of our day. I treasured those moments. 

One of my new concerns is that she frequently chokes. Sometimes that occurs when she is eating, but it happens more often when she is not. She seems to accumulate phlegm in her throat and coughs it up periodically, something that is common at this stage of Alzheimer’s.

Kate’s mornings have always been the most difficult time of the day. It still is. She often wakes up with a puzzled look on her face. I get in bed beside her and turn on music that I know she enjoys. Even then, I can’t count on her feeling comfortable. Generally, she doesn’t speak a word until late morning or after I have gone to lunch. When I get back, she frequently smiles and speaks a few words, but remains quiet most of the time.

Despite these changes, there is much for which we are thankful. One of those is the fact she is still with me. It’s been almost 11 ½ years since her diagnosis, and 15-17 years since her earliest symptoms. Not only that, we still have our “Happy Moments.” They may be less frequent, but they are very special. Sometimes she wakes up in a cheerful mood and gives me her beautiful smile. In those cases, she also speaks or tries to speak. We even sing songs together.

When I return from lunch, I often get a smile. She’s always in her recliner, and I get down on my knees so that I can look into her eyes and tell her how glad I am to see her.

We enjoy our afternoon ice cream and dinner. Most of the time she doesn’t say anything, but sometimes she does. She often smiles, however, and residents often comment about that. They love it, and I do too.

On top of these things, we sometimes have very good days. One of those was this past Saturday. She was awake early and cheerful all day long. We spent all morning together before the caregiver arrived. Then I went to lunch. We spent the rest of the day enjoying ice cream, dinner, and music until we went to sleep. I never thought we would have days like that this late in her Alzheimer’s, and I am hopeful that we will have more of them in the days ahead. I am grateful.