Welcome to Living With Alzheimer’s

March 1, 2021

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. Kate has declined significantly in recent years and has been in the last stage of Alzheimer’s about two years. We both tested positive for COVID two weeks before Thanksgiving, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but is still recovering from the trauma of being taken to the hospital by ambulance and the whole hospital experience. Although our lives have changed significantly, our relationship remains strong.

When she returned home from the hospital, I increased our in-home care to 7-8 hours a day seven days a week. She has made a gradual recovery but continues to be frightened anytime we have to move her in anyway while caring for her essential needs. For years, she has been frightened by many things, especially sudden noises. Her hospital experience added an additional source of fear.

I don’t know what life will be like a year from now, but I plan for us to enjoy ourselves as much as we can for as long we can. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

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.

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.

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.

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 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. She replaced one who was quite skilled in the basics of care (dressing, bathing, feeding, etc.) but she lacked a caring personality. Kate has developed a feeling for the new person that she didn’t have for the previous one.

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.

The Importance of Family Relationships

I’m grateful for the many ways in which “Living with Alzheimer’s” has been easier for us than it is for many others. One of those that I don’t often talk about is our family relationships. Two weeks ago, our son, Kevin, came for a visit which prompts me to correct that.

In our initial conversations after her diagnosis, Kate and I discussed when we should tell our children and our friends. She was firm in her desire not to tell anyone until much later. For some time, I felt that knowing the diagnosis led me to make the most of the remaining quality time we would have. I still believe that was the most important benefit of getting the diagnosis. Prior to that, we had a strong relationship. We enjoyed life and each other, but at that moment, I knew our lives were about to change radically. Every moment we had together became precious. I wanted our children to have the same experience. On the third anniversary of her diagnosis (January 21, 2014), I arranged a conference call with Jesse and Kevin to break the news.

As I had hoped, they have taken advantage of that knowledge. They’ve been able to follow the progression of Kate’s dementia and enjoy many special moments with her. Although they both live out of state, they have kept up with frequent phone calls and periodic visits. In addition, I’ve been able to share other details of our lives via this blog.

I found the benefits were not only for them but for Kate and me as well. It was still early in our journey. My stress was minimal. I didn’t need much support. With the passage of time, Kate has declined, and the responsibilities as her caregiver have introduced significantly more stress. That has made the relationship with our children even more important.

I’ve read about other families’ experiences with Alzheimer’s and the problems that can also arise. It’s not unusual to hear about conflicts that occur when aging parents and their children feel differently about things like driving, whether to engage outside help or move to a place where they have better access to care for existing or potential health issues. Even before Kate’s diagnosis, I wanted our children to be partners in this last stage of our lives. Letting them know about Kate was an important step in that direction.

Six years later, I feel that was definitely the right decision. Their calls and visits have brought us closer together. They are well-informed of the ups and downs in our lives. They know about any health issues that arise. They know the strengths and weaknesses of our various caregivers and how in-home care is working out. When I thought it was time to make a move to a continuing care retirement community (or life plan community), I let them know what I was thinking and asked for their thoughts.

Jesse and Kevin also feel free to ask me questions about things I may not have mentioned. On a recent phone call, Jesse asked if I had thought about whether I would move or stay in our current place after Kate’s death. I told her that I had and would plan to remain here. I explained that I wouldn’t want to buy another house nor would I want to leave the support I find here.

While Kevin was here, he asked if I had noticed any changes in my driving as I had aged. I mentioned that I am more easily distracted than in the past. I have to be more careful when I use the controls for the audio system and temperature. When I don’t, it is easy for me to drift to the right or left. I also mentioned my only interest in getting a new car would be to have the new safety features like the blind spot alert. He saw an example of that when I started to change lanes and the driver of a car about to pass us honked his horn.

They have been very supportive of my role as caregiver for their mother, and I have been receptive to their thoughts. As a gerontologist, Kevin has a special interest. That has also led to my asking him questions about his own perspective based on his professional experience with other seniors. Thus far, we haven’t had any conflicts, and I don’t expect any because of the nature of our relationship.

Kevin’s recent visit and Jesse’s visit a few weeks before that came at a time of transition from one caregiver to another. They had an opportunity to see firsthand how things were going. My stress is greater now. Along with that, my blood pressure has been somewhat higher than usual. I’ve found myself getting behind on many things. Sometimes I fail to look at my calendar. That leads to missing appointments. I don’t respond as quickly to emails; and if you are a regular reader of this blog, you know that I don’t post as frequently. In fact, I began this post a couple of days after Keven left. That was almost two weeks ago.

During Kevin’s visit, I relaxed more. He and I went out for lunch several times and had good conversations. In a way, it was like taking a vacation. Since then, I’ve felt more at ease, and my blood pressure has been normal. That seems to confirm my belief that stress was affecting me. It also boosts my confidence that I can find ways to minimize its impact.

The impact of our family goes beyond our relationship with our children. Kate and I both have brothers and spouses that live out of state. Because of that and the pandemic, we have had less personal contact, but they stay in touch by phone and have been very supportive.

Interpersonal relationships with family, friends, colleagues and even strangers have always been important to me, but the support from our family has been especially significant. I am grateful.

Covid Still Affects Our Lives

During the early stages of the pandemic, people talked about getting back to normal. By now, all of us are getting accustomed to making further adjustments to our lifestyle. That may be especially true for those us living in retirement communities. Kate and I have enjoyed the many benefits of community living, but the potential for the spread of Covid results in quite a few changes over time. Significant changes were in effect before our move fourteen months ago. They have continued off and on since then. The latest was last week.

For a year, menu service had been discontinued and replaced with a buffet. As the threat of infection had decreased, the rules had loosened. One of the most welcomed changes was returning to menu service in the dining room. We were informed last Thursday that our regular menu had been temporarily discontinued and replaced once again with a daily buffet. The decision was based on an increase in positive tests for residents and the food service staff.

Kate and I had Covid two weeks before Thanksgiving in 2020. Since that time, we have had our vaccinations and boosters and avoided any potential infections. This didn’t prevent our being among those affected. No, we didn’t test positive, but we were in contact with a member of the food service staff who did. As a result, we were “semi-quarantined.” That meant that we could go outside our apartment, but we had to wear a mask. All large-group activities were canceled. More significantly, we couldn’t eat in any of the dining facilities. We returned to carry-out meals.

In the scheme of things, this was a minor change, but our primary social engagement is in the afternoon when we get ice cream and have our evening meal in the dining room. The policy here is that one must remain as isolated as possible for a period of ten days after contact with someone who tests positive. As it turned out, we didn’t learn about the contact until four days later. That meant we had a shorter period of isolation and are now back to our regular routine except that, like all residents, we will continue to have buffet meals rather than ordering off the menu. That isn’t a problem for us. The meals are generally good. The downside is that the food is not as hot as it is when we order from a menu.

We weren’t cooped up for long. After eight days, we were still symptom-free. And we reinstated our routine afternoon trip for ice cream as well as evening meal in the dining room. The temporary removal from social engagement made me more appreciative of the benefits we have of living in a community like this. In addition, the benefits are not just for Kate, but for me as well, probably more so.

Selfcare (With a Lot of Help From Others)

Despite the challenges and low moments while “Living with Alzheimer’s,” I’m upbeat most of the time. That is only because I have lots of help. Most of that involves my contact with other people. I have remained as socially active as I could since Kate’s diagnosis eleven and a half years ago. Since our move to a retirement community a little over a year ago that has increased. The activities of the past ten days are a good example.

I’ve always been a creature of habit and have a routine for each day of the week. Most of those involve engagement with other people. That begins on Monday with my weekly Rotary lunch. I’ve been a member since 1983, and it’s good to connect with people I have known for quite a few years. I also eat out (outside the grounds of our retirement community) for lunch on three other days of the week. Every Tuesday and Sunday, I eat lunch at two different restaurants at which Kate and I ate regularly for eight or nine years before the pandemic in March 2020. Since she has been unable to get out, I go alone; however, I know the managers and staff, and I am usually served by the person who has served us/me for years. Since our move, I have found a new spot for my Saturday lunch. As a regular, I’ve gotten acquainted with the owner, my server, and a few others who work in the kitchen.

The other three days of the week I have lunch in the café downstairs in our building. It’s a very friendly community. We’ve lived here just over a year, and I’ve eaten alone fewer than five times. On the way in, I usually see someone who is already seated and join them for lunch. If I start out alone, someone joins me.

Some days I find myself in more conversation than expected. One of those occurred last Thursday. In advance, I had invited a couple to join me. We were seated only a few minutes when someone else asked to join us. When we finished, I went down to the main dining room to return a cloth napkin that Kate had brought back to the apartment the night before. As I entered, I saw another couple who had just been seated for their lunch. They asked me to join them. When I told them I had just eaten, they said, “Why don’t you have a cup of coffee with us?” I accepted their invitation. We spent the next hour in conversation.

Every afternoon at 3:30, the caregiver and I take Kate to another café on the grounds for ice cream. The seating is beside the main hallway that links all the buildings, eating venues, meeting rooms, a gift shop, and a hair salon. We spend an hour there and have conversations with residents and staff as they go from one place to another. I think this is good for Kate and know it’s good for me.

At 4:30, we go directly from having ice cream to dinner. That’s yet another time for social contact. That begins with the staff since there aren’t that many other residents who eat as early as we do. Everyone on the staff knows all of the residents. They treat us very well. During any given meal, we may have as many as 5-10 different staff drop by our table to say hello and often chat for a few minutes. As other residents arrive, some of them stop by our table. As we leave, we stop at several tables to do the same for others who arrived after we did.

That’s the daily routine, but there are also many other impromptu encounters. This past Sunday, the server had just brought my coffee when a couple I know was seated at a nearby table. They asked me to join them as they have done on a couple of other occasions. It had been a while since I had seen them, so I accepted. All three of us are big talkers, and we spent the next hour and a half talking and eating.

There are always other unanticipated events that keep me going. Two of those occurred during the past two weeks. One of those involved a new caregiver. She replaced one who was quite good with the basic CNA (Certified Nurse Assistant) skills but not so good with “Tender Loving Care.” Our new caregiver is adequate with the basic skills and very good with TLC. The second day she was with us I walked into the living room where Kate was looking at the caregiver and smiling. They were holding hands. That never happened with the previous caregiver. I was elated.

As you would expect, how Kate is feeling has the greatest impact on how I feel. Her Alzheimer’s, Covid, and stroke have left her less upbeat than she was before. She rarely says a word until mid-afternoon; however, some days she is more cheerful than others. She’s had a number of days like that during the past two weeks.

I shouldn’t close without mentioning the support I get from those who read this blog as well as my followers on Twitter. You have often given me words of encouragement at moments when I needed them most.

It is true that I am not as active in the local community as I used to be, and I don’t participate in many of the events on the grounds of our retirement community. Nevertheless, the things I outlined above boost my spirits considerably. I’m living well and grateful for that. I know of many caregivers who are not so fortunate.

Our 59th Anniversary

Kate and I celebrated our 59th wedding anniversary on May 31 last week. We gave up giving presents to each other many years ago. We concentrate on sharing special experiences together. That has often involved travel. Alzheimer’s ended that, but we always seem to find other ways to celebrate by being together. This anniversary week brought us an abundance of joyful moments.

It was highlighted by several particular events. One of those happened a week ago Saturday afternoon. I had just returned from lunch. Kate was resting in her recliner. I pulled up a chair beside her and started playing some of our favorite songs. For almost an hour, we held hands as we listened to the music. She closed her eyes, smiled, and ran her fingers over my hand. We forgot all that is going on in the world around us and enjoyed the music and being together.

Another happened on the following Tuesday, the day of our anniversary. I’ve looked forward to this for some time and have reminded Kate frequently over the past few weeks. She couldn’t remember, of course, but I hoped that my reminders might ring a bell when I wished her a Happy Anniversary. It was National Smile Day, and she smiled all day long. She was awake early, more alert, and more talkative. The following day was similar, so the day after she needed to rest and did so pretty much all day. She bounced back the next day.

Another thing made the week an especially good one. We had a new caregiver (Regina) Monday through Thursday. She had been with us one other time for just a couple of hours, and I had been impressed with the way she related to Kate. She sang and talked with her. That was most unusual. We’ve had only two or three others that I know have taken the time to connect with her.

Last week, she was here for four 8-hour days. At first, it looked like Kate was a little unsure of her, but on the third day, I got a surprise. I had been working on my computer in another room when I took a break to check on her. Regina had pulled up a chair beside Kate’s recliner, and they were holding hands. She told me that Kate had initiated the contact. It was a beautiful thing to see. Kate seemed perfectly comfortable with her. It reminded me of the way she relates to me.

There were more good times throughout the weekend. Kate had an especially joyful experience with music on Saturday. We had just returned to the apartment after an early dinner. I turned on one of her favorite albums by the Susquehanna Chorale. It includes songs like ”Loch Lomond,” “Danny Boy,” “Shenandoah,” ”Swing Low, Sweet Chariot,” and “Deep River.” She attempted to mouth the words of the songs and moved her head with the rhythm of the music. She was deeply moved by the music. I took pictures of her response along with several videos that I passed along to our family. It’s hard for me to express how wonderful it is for me to see her so happy. Music continues to be a powerful source of pleasure and therapy for both of us.

My expectations for our anniversary celebration were not high, but it was a week punctuated with joyful moments. “Living with Alzheimer’s” is not easy, but moments like those we experienced last week lift our spirits and sustain us during more challenging times. I am very grateful.

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.

Another Bump in the Road

It’s been three months and one week since Kate’s stroke. She has made a good recovery except for her speech and her right leg, but Friday, we hit another bump in the road. She had a TIA. Just before leaving for lunch, I walked over to Kate to tell her goodbye. The caregiver, who was feeding her, told me that she wasn’t eating. It didn’t appear to me that anything was out of the ordinary. Sometimes she rejects a bite of food or a drink but takes it if offered to her again. I told the caregiver to try again, and I left.

When I returned, I went directly to Kate who was in her recliner. She smiled at me, and I took her hand. She tried to talk to me, but I couldn’t understand her. That’s not unusual, especially since her stroke. Then, I noticed that her mouth was drooping slightly. As she talked, the droop went away. I immediately thought that she might have had a TIA. I called her doctor and told him about it. I also conveyed that it appeared that she was all right now.

Since she seemed to have recovered, we went downstairs for ice cream. She was quiet but she ate all her ice cream. While we were there, I asked the caregiver to tell me more about what happened as I was leaving. She told me that Kate didn’t eat her lunch and that she had fallen asleep. I probed a little and discovered that what she observed was very similar to what I had observed when she had her stroke. She just drifted off, and that lasted about 10 minutes. When I heard that, I felt sure she had had a TIA and was beginning to recover when I got home.

We also went to dinner in the dining room. During that time, she began to get sleepy and didn’t finish her dinner. We bought her back to the apartment and put her to bed. She went to sleep right away, slept through the night, and most of the day Saturday. She ate all her lunch and dinner. That was a good sign. She went back to sleep shortly after dinner, but she awoke for about an hour before I called it a night. She didn’t say a word during that time, but she held my hand and stroked my arm with her other hand. That was a good way to end the day.

Sunday was another day of recovery. She was awake early but went back to sleep a few minutes later. The caregiver arrived at noon, and I went to lunch. When I returned, the caregiver had gotten Kate up and dressed and in her recliner. She was quiet but not asleep. We got our afternoon ice cream and dinner without any problem.

She went to sleep quickly when we put her to bed but woke up less than an hour later. We spent the rest of the evening watching music videos on YouTube. She never said a word, but she gave me a big smile, the first one since Friday. She also held my hand and stroked my arm. Obviously, she can communicate her feelings without words. That makes me feel good.

She’s awake early this morning. I am beside her in bed finishing up this post. I’m not ready to predict what, if any, lasting effects she will have, but I am hopeful that she is going to make a good recovery. She is very resilient.