Posted on

A Perfect Day

I admit that I am a “glass-is-half-full” kind of person, and at least one other member of our family is the same way. That would be one of our grandsons who following our birthday dinner for Kate said, “That’s the best meal I’ve ever had.” He had a chicken sandwich. I can’t say that about any chicken sandwich I’ve ever eaten, but yesterday I enjoyed what I consider a perfect day.

I was the luncheon speaker at our Rotary club. My subject was what our lives are like in the last stage of Alzheimer’s. I’ve spoken to a lot of groups over the years, but I take each one seriously in my preparations. Over the past few weeks, I’ve thought about what I wanted to say and coupled that with notes as well as a final draft of my remarks. I set aside time yesterday morning to rehearse as well as relax before my presentation. I figured that wouldn’t be a problem because Kate generally sleeps until the time (or near the time) that our caregiver arrives.

Yesterday morning was different. Kate was awake before 8:00. Not only that, but she was in a cheerful mood. When that happens, I take advantage of it.  Instead of working on my presentation, I got in bed beside her and turned on some YouTube music. As I have done on a number of other occasions, I selected a variety of sing-along music for Seniors. We sang with the music until the caregiver arrived at 11:00.  We ended the morning on a high note that was far more important than any last-minute rehearsing.

As it turned out, the presentation was well-received. I didn’t include everything I intended, but my remarks came across as a very open and personal account of our lives. That is what I wanted most, and the audience response suggested that it was the right thing.

When I returned home, I wondered if Kate’s mood would have remained the same. I was pleased to discover that she had. In fact, we had an especially good time at the café where we got ice cream as well as during dinner. It continued for at least an hour after the caregiver left at 7 when Kate was tired and fell asleep.

It had been a remarkable day. We’ve had very few days that good in more than two years. For me, it was a perfect day, and I think Kate would agree.

Posted on

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.

Posted on

Celebrating Kate’s Birthday

Kate’s birthday was this past Saturday, but the big celebration was the previous weekend when our two children and all five of our grandchildren were here. This was an occasion when the stars were in perfect alignment. That’s saying a lot. They were traveling from three different states.

Our daughter, her husband, and both boys arrived in three cars. Our son and his family all traveled together, but they were flying. With all the issues surrounding air travel lately, you couldn’t help wondering if they might encounter a few problems. Fortunately, they didn’t.

The visit was a good one for all of us. This was the first time since June 2020 that all of us had been together. Only our children had been to our new home. Now, our grandchildren also have a good picture of what our lives are like.

The highlight was a birthday dinner on Saturday. We were in a private dining room off the main dining room. Everyone ordered from the menu. That turned out well since all were able to find something suited to their personal tastes. One of our son’s boys said, “That’s the best meal I’ve ever had.” He had the chicken sandwich.

After ordering our meal, I invited everyone to share special memories with Kate. There were twelve of us, and everyone including our caregiver spoke. Each person had unique memories. It was a very touching time. I don’t think there was a dry eye among the group when we finished. I know that sounds sad, but it was a great moment of connection with family and our love for Kate.

After dinner, our daughter and son gave Kate a gift of cookies, each of which was topped with icing and something of special significance for her. I took a video of our son, Kevin, who sat beside Kate and explained what was on each cookie. The last one was an image of the “Clasped Hands” of Elizabeth and Robert Browning. Kate’s mother had often given copies of the original to friends who were newlyweds. We have one on a table in our living room.

I can’t predict how Kate will respond to situations like this, but all of us were amazed that she rose to the occasion. She listened attentively and responded appropriately to everything Kevin said. When he was almost finished, she even said, “Thank you.” Then after Kevin said, “We love you, Mom,” she smiled and said, “I like you.” Fortunately, I took a video that captured that moment.

I am happy to say that she has continued to display similar moments. They don’t occur every day nor do they last all day. I treasure them and feel grateful.  

Posted on

Feeling Joyful This Holiday Season

The Christmas season has always been special for Kate and me. Our first date was sixty-one years ago on December 19, 1961. We celebrate that day every year. Some years we have taken trips to New York City and several places in Europe. Mostly, our celebrations have been simple. For us, that is usually going out to dinner at one of our favorite restaurants.

For the past three years, it’s been impossible for us to get away from our home without the assistance of an ambulance or wheelchair-accessible van, but that hasn’t kept us from experiencing “Happy Moments.” This year those moments have seemed especially rewarding. That’s because they have become more frequent during the past few months. We celebrated the 61st anniversary quietly as we do every day. We had ice cream in the afternoon and dinner in the dining room chatting with residents and staff in both locations. Recently, however, we have experienced several other happy moments. Here are a couple of examples that occurred in the past few days.

I returned home from lunch on Saturday and entered our apartment with my customary greeting, “Hello, I’m home.” As I approached Kate in her recliner, I could see that she was smiling. She doesn’t always respond that way when I come home, but it does occur frequently.

I walked over to her, got down on my knees, and told her how happy I was to see her and her beautiful smile. Her caregiver said she had been talking. Very quickly, I got to hear that for myself. We spent the next forty-five minutes in an animated conversation. As usual, I couldn’t understand most of what she said, but there were bits of clarity sprinkled among the gibberish.

Things were going well, and I asked Kate if she would like me to read something to her. She did, and I picked up a resolution our church had given to her when she retired after nineteen years as our volunteer librarian. She used to love listening as I read it. In the past couple of years, she’s been less interested. This time she was engaged from the first sentence to the last.

After that, she looked like she was getting tired. I thought I might perk her up if I showed her some photos I had taken on our 50th anniversary trip to the Grand Tetons and Yellowstone. We used to look at our photo books regularly, but she lost interest a few years ago. Because she was in such a good mood, I thought I might have some success. I was wrong. She wasn’t interested at all. Our happy moment had ended.

Not long after that, it was time for our afternoon trip for ice cream. She hadn’t warmed up at all when we reached the café. Several people spoke to her, but she didn’t respond. Then another resident stopped for a few minutes. As she was about to leave, she said something to Kate who responded with a smile. That was the first sign of cheerfulness we had seen since she had lost interest in the photos I had shown her.

We soon went to dinner. As usual, we were the first ones in the dining room, and several of the dining room staff dropped by to say hello. She returned to her cheerful self and remained that way until she drifted off to sleep that night.

This experience is a good example of our quickly Kate’s mood can change. It’s also an example of how Kate’s mood can be affected by the way other people relate to her. I am thinking specifically about the “kindness” and “respect” that she receives from our residents and staff. We are fortunate to live in such a supportive environment.

Yesterday was another day of cheerfulness and conversation. Once again, it began when I returned home after lunch. This time she was more animated than she had been on Saturday. We had another extended conversation.

As we left for our afternoon ice cream, we ran into a resident and a friend who was with her. After a brief conversation, the friend told Kate it was nice to see her. I don’t remember what Kate said, but she made an appropriate response to which the resident said, “That’s the first time I’ve heard her talk.”

When we reached the café, we found that a resident was playing his clarinet with a small audience of other residents who had gathered around him. Kate enjoyed the music and responded by nodding her head in rhythm with the music.

Shortly after he packed up his clarinet, a group of children arrived from a local church to sing a few Christmas carols. Kate joined right in with the singing. She loved every minute of it.

At dinner, Kate talked with her caregiver off and on during the entire meal.

Kate and I closed the day watching a Christmas special with Andrea Bocelli and his family. She remained cheerful until after I turned out the lights for the evening.

Life at this late stage of Alzheimer’s is quite different than it was in the earlier years after Kate’s diagnosis, but Kate and I still enjoy happy moments like these. They are especially welcome during this season of the year, and I am grateful.

Posted on

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.

Posted on

“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.”

Posted on

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.

Posted on

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.

Posted on

“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.

Posted on

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.