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.