Life Continues to Go Well

Three months ago, I reported that Kate had improved during the previous few months. The improvement was not with her Alzheimer’s. She was simply more at ease than she had been. She was awake more. She smiled more, She talked more and responded more frequently to residents and staff. At the time, I suggested that one reason for the change was that she has recovered from the stroke she had in February. I also indicated my belief that she was adapting to the new routine we have established here in our retirement community as well as the attention she receives from residents and staff. A month later, I said she had continued to get along well and wondered how long this would last.

It has now been a year and a year and seven months since our move and nine months since her stroke. I am happy to say that the bubble has not burst. She still requires total care with all of her daily activities; nevertheless, we still enjoy life and each other.

Kate has continued to improve. She is awake more. She has been waking up earlier in the morning, sometimes before 7:00 a.m. She usually goes back to sleep a little while later, but on a few occasions has remained awake all day. She is also less likely to go to sleep shortly after the caregiver leaves at 7:00 each night. The result of these changes is that we have more time together.

When she sleeps until the caregiver arrives at 11:00, I spend my time in the kitchen, living room, or office. When she awakes early, she is still slow to be ready for conversation, but I often get my laptop and sit up in bed beside her. As you would expect, I also accompany that with music we both enjoy. Very little talking occurs. Kate rarely says anything until after noon, but each of us knows the other is right there. We take pleasure in being together.

Our evenings remain the best part of our day. Kate is usually awake another hour or two before she goes to sleep. For several months after her stroke, she was asleep from the time we put her in bed until 11:00 or later the next morning. Sometimes she is talkative. Often she is not. In either case, she seems very much at ease. Relaxing music is also an important part of our time together.

Coincidentally, she was quite talkative last night. We talked for over an hour. As usual, her aphasia greatly affected our conversation. I can’t understand most of what she says although I can sense when she asks a question or other things she tries to communicate. Last night she spoke some words very clearly. She also expresses humor. She did that last night. She would say something and then burst out in laughter. I laughed with her and served as the facilitator to keep the conversation going.

This morning she was awake before 7:00. Not only that, she was talkative. After a while, she relaxed but never went back to sleep. I finished the rest of this post while sitting up in bed beside her. We watched and listened to Khatia Buniatishvili play Rachmaninoff’s Piano Concerto No. 2 until the caregiver arrived.

It is still impossible to predict how she will be in a particular situation. That seems to be governed by her Alzheimer’s. It’s like a little switch that clicks on and off when you least expect it. The residents and staff seem to accept this pattern with understanding. They are excited when Kate responds with a smile or an audible reply to what they have said, and they accept when she does not do either. In that respect, they are just like me.

I no longer wonder how long this good period will last. I simply enjoy the Happy Moments when they come. I have a sense the good times may continue a while longer along, but I realize that changes can occur at any time. In the meantime, life is good.

The Importance of Family for Kate and Me

During the early years of Kate’s Alzheimer’s, I read an article that dealt with the value of caregivers having “a team.” The author meant a team of professionals, especially medical, legal, and financial. I’ve taken that seriously and extended that to a large percentage of the people I encounter every day. That includes all of our friends and acquaintances as well as servers in restaurants and strangers that offer gestures of kindness. Our team has grown significantly since we moved to a continuing-care retirement community a little over a year and a half ago. Both the residents and staff have played a vital role in our lives.

Although all of our family members live out of state, they, too, have played a key role on our team. Most of our contact involves email and phone calls, but they also visit us.

Initially, Kate didn’t want to tell anyone about her diagnosis. As time passed, I realized the value of knowing about her Alzheimer’s. The moment the doctor gave us the test results, the two of us began to make the most of whatever time remained for us. More than we had done previously, we began to focus on enjoying every minute together. It has paid great dividends and is still doing so twelve years later.

I wanted our children to have the same benefit, so I finally told them. I’ve never regretted it. Telling them was the catalyst that opened the door to something I had long believed was an important parental responsibility – to include children as partners in the last chapters of our lives. From that day to the present, I’ve kept them fully informed of the ups and downs we experience. They have responded in kind. They call frequently to see how we are doing, and their visits give them a personal glimpse of our lives. Had I not told them and kept them up to date, I would have missed out on having the most important members of my team.

I was prompted to comment on their contributions because both of our children paid us a recent visit. It was a particularly nice one. They have been here a number of times and are beginning to know other residents and staff. They have a much clearer appreciation of the benefits we receive here. They supported our move from the moment I mentioned that I was thinking about it. They are also happy and, perhaps, relieved that we live in a place that provides so much support. They don’t have to worry about us as much as they might have if we were still living in our home.

Most importantly, they enjoyed their time with Kate. They were here for several days which gave them an opportunity to observe her special moments and see some of the same qualities they recall from childhood.

We don’t know exactly what challenges lie ahead of us, but I am most appreciative of the support we have from our family. That is one more reason “Living with Alzheimer’s” has been easier for us than it is for many other couples, and I am very grateful.

“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.

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.

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.

An Amazing Day

Twelve weeks ago today, Kate suffered a mild stroke. I’m glad to say that she continues to recover although her speech has not returned to its pre-stroke level. She doesn’t speak much at all. When she does, it is not usually intelligible. Most of her speech is in stock phrases or words like “Fine, how are you?” or “Yes, I am.” Sometimes she speaks words in a whisper. That is especially true when we sing together. She really just mouths the words.

Not every day is alike. That has been true during the past three or four years as she moved to the late stages of Alzheimer’s. Throughout this time, I have written about many of our good days. This past Saturday was one of those. It was exciting for me, our caregiver, and the residents and staff who had contact with her.

Let me put that in perspective. Three years ago, I might have said it was a great day. That would probably have related to how cheerful she had been. She can no longer do many of the things she could do then; however, within the context of our lives now, yesterday was truly amazing. It wasn’t that she was just cheerful. She was more alert. Most importantly, she seemed at ease.

It started out much like other mornings. She was awake early but didn’t say a word and went back to sleep. I took my morning walk in the living room. When I finished, I noticed her eyes were open. I thought she might be “up” for the day, but she was tired and rested until the caregiver came shortly afternoon when I left for lunch.

When I returned home, Kate was in her recliner. I walked over and got on my knees beside her. She was alert and gave me a big smile. For the next thirty minutes, I talked to her. I told her how much I liked her smile and that everyone else does as well. I reminded her of our college days, our first date, and some of the experiences we had had during our marriage. She didn’t say much, but it was more than I have heard in months. She made it clear that she understood what I was saying. The caregiver and I were excited.

We went downstairs for our afternoon ice cream and ran into several residents who spoke to her. Each time, she responded with a smile and a word or two. The residents seemed excited as well. She continued to respond to both staff and residents at dinner. Some of them had never heard her speak.

After the caregiver left that night, we had the best evening we’ve had since before her stroke. We have been watching music videos on YouTube for four or five years now, so I’m always looking for new ones. I don’t know what prompted me, but I did a search for TCU’s school song, our alma mater. I found multiple variations sung at football games, a student jazz group, a chorus of music students, and the university band. We lay in bed singing along with them. We had a good time, and Kate laughed a good bit.

When I felt it was time to move on, I brought up a 2012 BBC PROMS concert that was a two-hour performance of Broadway music. We have watched it a number of times before, but Kate was especially attentive that night. For much of that time, my head was on her shoulder, and we held hands. It was a perfect end to an amazing day.

More Special Moments

I don’t want to sound like the proverbial “broken record,” but Kate continues to be happy and to provide me with special moments. Knowing that this may not always be the case in the future, I guess I want to make a point of how well things are going right now.

Yesterday was a very good day. Kate was awake early, just before 8:00, and I spent the morning with her. When I returned from Rotary, she was still cheerful and talkative. She was glad to see me, and we talked a lot between then and our afternoon ice cream break.

It was after dinner when the first special moment occurred. It was the birthday of one of her childhood friends from Texas. I suggested we call her. Kate doesn’t usually express much interest in phone calls, but she thought it was a good idea. With most phone calls, she doesn’t say much. I’m always prepared to do what I can to prompt her and did some of that yesterday. The big surprise was how well she did. Not everything she said was understandable or made sense, but she was able to express her feelings toward her friend and convey how much she enjoyed talking with her.

That had gone so well that I decided to call one of her other childhood friends. She wasn’t home, so we left a message. I began the message by telling her that we were sorry to miss her and would try to call another time. Then I talked to Kate about her friend and gave her several prompts like, “I’m sorry we didn’t get to speak with her. That would have been nice, wouldn’t it?” To which she replied, “Wonderful.” It wasn’t a lengthy message, but once again, Kate rose to the occasion. I feel sure her friend will want to keep that message for a long time.

I couldn’t stop then. I recalled that a cousin of hers had recently asked me to call anytime Kate was up to it. This seemed like a great time, and it was. We talked for 10 minutes, and Kate was an active participant. By this time, what she said was more rooted in delusions, but I know her cousin understood and appreciated every word. It was a great conversation for all three of us.

After that call, we still had time before we needed to get Kate ready for bed, so I put on the album that mesmerized her when I played it a few weeks ago. It had the same effect this time. It was a very touching moment for both of us. She sang along with the music. That involved mostly whispering her own approximations of the lyrics but in sync with the rhythm of each song. We held hands for most of that time and, at one point, she took my hand and held it tightly in both of hers. Although much is lost with Alzheimer’s, both of us enjoy keeping romance alive. I am grateful.

The Good Times Continue

I’m far from predicting what the future holds for us in 2022, but I know that 2021 ended well and that the first two weeks of the new year have been filled with good times. I don’t mean every moment is the way I would want, but I am amazed at how comfortable Kate has become. The best way I can approach an understanding of the change is to resort to the most important lesson I’ve learned while “Living with Alzheimer’s.” It’s something I picked up from The Dementia Handbook by Judy Cornish. She maintains that all is not lost with dementia. People living with dementia lose their rational thought processes or abilities, but they retain their intuitive thought or abilities. Rational thought involves our ability to remember names, places, events, and processes (how to do things). Intuitive thought involves our ability to experience the world directly through our senses.

People with dementia can still appreciate what they see, hear, taste, touch, or smell. Our senses open the door to many everyday pleasures. We’re at the end of a year of major changes in our lives (COVID and moving from our home to a retirement community), I believe Kate has grown accustomed to the daily routine of our lives. She senses that the things that frightened her before aren’t so bad at all.

This is apparent in two ways. First, she no longer experiences fright or anger when we bathe her, change her, dress her, or get her out of bed and into her recliner or wheelchair. Increasingly, she accepts the bumps that occur when we push her wheelchair over thresholds or minor changes in levels of the surfaces of floors in the hallways of our buildings.

Second, she is more comfortable with other residents and staff we meet when we leave the apartment. She is more likely to respond to them when they greet her or ask how she is doing. The caregivers and I were stunned at first but are getting used to hearing her say, “Fine, how are you?” One afternoon this week a resident passed by while we were getting ice cream. Kate was facing me with her back to him when I said, “Hi, Richard.” Kate, who doesn’t know him at all, said, “How ya doing, Richard?”

Shortly after that, another resident stopped and talked with us. At one point, she said she was thinking about going somewhere. Kate, who I thought was not listening to our conversation, said, “Let’s go right now.”

Mornings represent the greatest challenge for Kate. The toughest days are those when her mind is blank. She doesn’t know who she is, who I am, where she is, or what she is supposed to do. Fortunately, those don’t occur every morning. More typically, she is simply not fully awake. At these times, she may or may not remember my name or relationship. Most days, she doesn’t want to talk much.

In the same way (via her senses) she has learned over the past year that she doesn’t need to be afraid of everything, each day she also gradually seems to feel more comfortable with her surroundings and the people she is with. She is almost always at ease when it’s time for ice cream around 3:30. She enjoys her dinner and is usually quite comfortable and happy.

The evening is still the best time of the day for us. It’s just the two of us. Kate is often tired after the caregiver leaves around 6:30 and sometimes rests for as long as an hour. That’s my time to watch the news and take my shower. She’s usually awake after that, and we watch YouTube videos until time to turn out the lights. It’s a very special time for us. It’s a moment in the day when each of us expresses our love for the other. It’s not stretching at all to say it’s romantic.

So, I continue to feel good as we begin the new year. Of course, I don’t have any idea of what lies ahead, but I’m satisfied that we have made the most of our time together while “Living with Alzheimer’s.” I expect we’ll continue to do that regardless of what happens.

A Late, but Welcomed, Christmas Present from Kate

It’s no secret to those who know me that music has been of great importance to Kate and me while “Living with Alzheimer’s.” As always, we have loved enjoyed Christmas music throughout the holidays.

Last night after dinner, I decided it was time to play some of our non-seasonal favorites. What followed was almost a full hour during which Kate was almost mesmerized by the music. In no time, she was smiling, mouthing the words, and moving her head and hands in time with the music. She was much more animated than she has ever been in the past. We only stopped because it was time to get her ready for bed before the caregiver left.

Her caregiver and I were amazed, and I was enjoying it so much that I didn’t think about taking a video. Fortunately, the caregiver motioned me to do just that. I took a number of videos that will be a precious memory of these moments.

After the caregiver left, there was a bonus. We continued to enjoy music and conversation in bed. We’ve had a “Very Merry Christmas.”