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Kate’s Connection With A Caregiver

I know I sound like a broken record, but I want to add another Happy Moment to this blog. We don’t experience such moments 24/7; however, Kate has gradually improved during the past year. She continues to surprise me with her cheerfulness, smiles, and overall good humor.

I wondered how it would go when I learned that our previous M-F caregiver was going to fill in for our new caregiver one day this past week. It turned out beautifully and began the moment she arrived. When Kate saw her and heard her voice, she burst into one of her biggest smiles. It was obvious that she remembered her.

I’ve written before about this caregiver. She was especially attentive to Kate, and they bonded. Almost a year ago, I nominated her for “Employee of the Month,” an honor she received in March. That put her in contention for “Employee of the Year” among the winners of the other eleven months. She won that award as well. I was very disappointed to lose her, but she was having back problems and also wanted a change in her schedule that didn’t match our needs.

The day went very well, but the “Grand Finale” occurred after we returned to our apartment following dinner. Kate and the caregiver began what was at least a 15-minute conversation. For someone with aphasia who rarely speaks that is remarkable. She was perfectly comfortable and talked as much or more than the caregiver. It warmed my heart to be an observer.

Nothing has happened that could match that since then, but the past few days have also been good ones. Three days in a row Kate woke up with a smile, and yesterday she was also talking. This is not typical. That’s another change that has occurred more often in recent months. My explanation for the changes she has made in the past year has occurred because she feels more at ease. She receives a good bit of reinforcement from everyone, which makes her even more at ease. It also makes me very happy.

Addendum

At the time I uploaded this post yesterday morning, the first sentence in my closing paragraph was true; however, I couldn’t anticipate what would happen yesterday afternoon. When I returned from lunch, I found her especially cheerful and talkative. She and I talked steadily for almost an hour before we went out for her daily ice cream and dinner. She was less talkative during these times, but the situation was less conducive to conversation. When we came back to the apartment, we continued to talk. That lasted until she was in bed for the night. I took thirty-four short videos (mostly 20-45 seconds) during our conversations. It was an amazing experience.

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Managing Stress

Because Kate and I have lived joyfully while “Living with Alzheimer’s, one might think that stress is not an issue for me. That would be wrong. The only time I have been relatively free of stress was in the first few years after her diagnosis. At that time, the key stressor was juggling my responsibilities between Kate and my dad who was in skilled nursing. Since then, stress has gradually increased.

Since Kate’s diagnosis 12 ½ years ago, I’ve learned a number of things about stress and how to deal with it. One of those is that it is impossible to avoid. It’s a natural part of caring for someone with dementia. The best I can do is to find ways to manage it.

In the early days, that was easy. Shortly after Kate’s diagnosis, we decided that we would enjoy life and each other for as long as possible. That simple decision led to our binging on the things we had enjoyed throughout our marriage – movies, theater, musical events, eating out, and travel. Pleasure was a central part of our lives and helped both of us minimize stress.

As Kate’s Alzheimer’s progressed, I needed to spend more time with her and felt less comfortable leaving her alone. At the same time, stress was increasing. That led to my engaging in-home care three years after her diagnosis. For a little more than three years, we had help four hours a day for three days a week. That gave me time to run errands and get to the YMCA for exercise.

The past two and a half years, she has required total care. That resulted in my increasing our in-home care to eight hours a day seven days a week. Despite that, my responsibilities increased significantly, and that was accompanied by more stress. Fortunately, I’ve been able to manage it pretty well,

I put a high priority on a healthy lifestyle. Except for my days in graduate school and the first few years I taught, my adult life has involved exercise. Since Kate’s diagnosis, I have needed it more. I used to work out at the YMCA three mornings a week. I stopped when I felt I could no longer leave Kate alone in the morning. That is when I took up walking every day. After our move to a life plan retirement community, I replaced walking for workouts in our wellness center downstairs. I get up between 4:30 and 5:00 five days a week and do stretching exercises for 25-30 minutes before going to the wellness center. I ride the seated elliptical for fifty minutes averaging a little over eight miles a day.

I have also taken up deep breathing. I do that periodically each day including the time I am exercising. I’ve made a number of other lifestyle changes that are helpful. One of those is to avoid rushing. I realized that I was rushing to get to the gym as well as going about my daily household chores like fixing breakfast, washing, folding, and putting away laundry. That doesn’t make much sense now that I am retired. I deliberately began to slow down as I go about my daily routine. In addition, I take breaks during the day and have reduced my emailing, activity on social media, and writing blog posts  

I pay attention to my diet. I maintain a high-protein, low-carb diet with an abundance of fish, vegetables, and recently, nuts and fruit. Sleep is also important to me. Fortunately, Kate sleeps through the night. That enables me to get between 7 and 7 ½ hours sleep.

By far the most effective way I have found to deal with stress is to be as socially active as I can. I do this in a variety of ways.

I follow a daily schedule that includes contact with other people than Kate and our caregivers. That is a lot easier now that we are in a retirement community. Three days a week, I eat lunch in a café downstairs. I don’t think I have eaten alone more than once or twice since we moved here. The other four days of the week I eat off the grounds. One of those days is with my Rotary club. The other three days, I eat alone; however, I eat in restaurants where I have eaten for several years and know some of the staff, and I frequently run into friends.

Our afternoon and evening routine includes 30-40 minutes at a café on the grounds where Kate has ice cream. It is also a time to run into other residents, and most of them stop to chat for a few minutes. In addition, we eat dinner in the dining room five nights a week and in a café downstairs the other two nights. These provide additional opportunities for Kate and me to engage in additional contact with residents and staff. That is good for both of us.

Part of my weekly routine is getting together with friends for coffee. Every Friday, I meet a friend who worked for me ten years before using his computer skills to launch out on his own. We have kept up ever since he left. I meet with another group every Saturday. All three were neighbors before our move two and a half years ago. One of them recently moved to our retirement community.

I stay in contact by phone and/or email with longtime friends and family. This includes my undergraduate sociology professor and mentor who turns 101 in September. I also stay in touch with four other college friends as well as three grammar school friends.

I maintain relationships with several organizations with which I have been involved for many years. Those include the United Way, Rotary, our church, our local symphony orchestra, and a local health foundation.

Apart from these social connections, I participate in three different caregiver support groups. One of those is a group for husbands taking care of their wives with dementia. Another is a mixed group of husbands and wives who are caring for a spouse with dementia. The third group is a group of husbands and wives caring for spouses with any illness that requires regular care. The first group meets twice a month. The other two meet once a month.

Of course, the most important stress-relieving relationship I have is with Kate. Some readers may be surprised that I can say that at this late stage of her Alzheimer’s. To be sure, we don’t relate in many of the ways we could before Alzheimer’s entered our lives, but not a day goes by without our having “Happy Moments.” They serve as the best stress reducer I can find. I savor every “Happy Moment” I have with her. I can’t eliminate stress, but I have a lot of things that help me manage it as effectively as possible. I am grateful.

Addendum

I thought I had finished this post yesterday morning, but since then I have had three different experiences I would like to add. Each one involves a “Happy Moment” with Kate. The first occurred yesterday just before leaving for lunch. She was smiling, and I told her what a beautiful smile she has. Then I said, “And you are beautiful. I love you.” The expression on her face changed immediately as she almost broke into tears. I can’t say precisely what that meant, but to me, it was very touching to see her so moved.

The second one occurred after I got home. I walked over to her and kneeled beside her chair. I told her how happy I was to see her and how much I missed her while I was gone. She gave me a smile and whispered, “I love you.” That is a rare event. More typically, she expresses her feelings with her facial expressions as she did before I left.

The third occurred this morning. She was awake early and in a cheerful mood and talking. That doesn’t happen very often. She is usually very subdued and rarely speaks until the afternoon. On days like today, I sit up in bed beside her and enjoy being with her. We had a good conversation even though I couldn’t understand a word she said. The important thing was that we were connecting. It was a very special moment.

Each of these is a good example of the kinds of “Happy Moments” we experience on a daily basis. They don’t happen all day, but they occur often enough that they boost my spirits knowing that our relationship still means a lot to both of us.

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Update on In-Home Care for Kate

Six years ago this coming September, I engaged in-home care for Kate. At that point, all I needed was someone to be with her while I went to the Y and ran errands. It was prior to my feeling a real need for help, but I was becoming uneasy about leaving her alone. At the time, I referred to the caregivers as sitters. All they had to do was spend time with Kate. They didn’t have to dress her, prepare meals for her, or take her places.

Looking back, I view that as the “honeymoon stage” of our in-home care. After a month or so, we settled into a routine with two different people. One came on Mondays for four hours. The other came on Wednesdays and Fridays for four hours. This went well for three years although we made a few changes in the person coming to the house on Mondays. Fortunately, we had the same person for Wednesdays and Fridays for more than three years.

Then came Covid in November 2020. Kate’s Alzheimer’s had been progressing more rapidly in the previous two years. She was in the early stages of aphasia and was developing mobility problems. Her hospitalization for eight days for Covid was traumatic for her. Since then, she has required total care.

The honeymoon with in-home care was over. Finding caregivers was also more challenging because of the pandemic. Apart from the pandemic, fewer caregivers are willing to accept people who require total care. Thus finding and keeping caregivers has been a problem since then.

It is especially difficult to find someone to work eight hours a day five days a week, but we found one person who was with us until May 2022. We were able to replace her with someone who was with us until this week when she decided to leave because of her back problems. That was a low blow to me. She was the most caring and compassionate caregiver we have had. She and Kate got along well, something I consider of paramount importance.

So, we are going through an adjustment. We have a new person who comes for eight hours a day on Monday, Tuesday, and Wednesday and another who comes on Thursday and Friday. We are now in our second week with them, and I am encouraged that they will work out. They are both good but have complementary skills. The MTW person has CNA skills that are among the best of anyone we’ve had previously and she has a caring personality. She does have a minor back problem, so we have elevated the bed another six inches, and I am playing a greater role in the heavy lifting. She also appears to be someone who is easy to work with. She has lots of ideas about how care should be provided, but she is also sensitive to the routine we have established.

Our Thursday/Friday person is very cheerful with a very warm and caring personality. She and Kate connected right away. She even stopped by to chat with Kate while we were having ice cream Saturday afternoon with one of our regular weekend caregivers.

Despite my optimism, having new people for five days a week does mean another adjustment for me. That will mean more work for me to familiarize them with our needs and priorities, but we should soon establish a new routine.

Although I wish I could count on having a regular group of caregivers for a longer period of time, we are fortunate to have had three caregivers who were with us for more than a year. At the moment, only one of them is still with us. She has been coming every other weekend for a year and seven months.

Change always requires adjustments, but it often comes with benefits. That is what I am hoping for with this one. Right now, I am optimistic that Kate’s care will match or exceed what we had before.

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My Thoughts on Giving Advice

In two recent posts, I discussed some of the many reasons that Kate and I have lived well while “Living with Alzheimer’s.” Many of them were unrelated to anything specific we have intentionally done. Some of them, however, were deliberate choices we made that turned out to be very beneficial. As a result, some people might think I would jump at the chance to give advice to others, but such is not the case. Let me explain.

Long before Kate’s diagnosis, I learned that many caregivers are annoyed by the advice they receive from friends and family. That occurs most often because the person giving the advice doesn’t fully understand the situation of the person receiving it. There’s a saying that is common among the community of dementia caregivers. “If you’ve had one experience with dementia, you’ve had one experience with dementia.” The point is that each case of dementia has its own unique characteristics; therefore, what works in one situation may not work in another.

When people give advice, they usually believe that what worked for them will work for others. They do this without fully understanding that the circumstances of the person receiving the advice may be (and often is) quite different from their own.

My earliest personal encounter with this occurred after we brought Kate’s mother into our home with 24/7 in-home care. Kate was annoyed when an acquaintance periodically encouraged her to put her mother in a skilled nursing facility. That might have been a good suggestion for some people, but not for us. For a variety of reasons, we believed that in-home care was the best option for her mother and for us. I still believe that. Since then, I’ve heard other caregivers talk about their irritation with similar unwanted advice.

As a result, I try to avoid giving advice. There is one notable exception. That is based on what I learned from Judy Cornish, author of Dementia Handbook and Dementia with Dignity. Her approach to dementia caregiving emphasizes an important distinction between rational and intuitive thought. In her view, all is not lost with dementia. Although people with dementia lose their rational thought, they retain their intuitive thought which relies on direct experience with the world via our senses.

That means that even as memory declines, people with dementia can continue to enjoy many aspects of life. For Kate and me, that has involved music, movies, theater, dining out, and social connections. With Kate at late-stage Alzheimer’s, we can’t pursue these interests in the same way that we did during earlier stages. For example, she lost the ability to use her computer which allowed her to connect with family and friends and work on photobooks of family photos. She also lost her ability to use her iPad. She had used it to work jigsaw puzzles for hours a day. We gave up travel. We gave up eating out. As I often say, our world today is much smaller than it used to be, but we can still enjoy life and each other. That’s because we continue to find activities that she can appreciate via her intuitive thought. That includes music which has been an important source of entertainment throughout our marriage.

My primary advice to others who confront the diagnosis of dementia is to accept the fact that rational thinking will become weaker and weaker and focus on what loved ones with dementia can do and appreciate. When you think about it, most of the things we enjoy, whether we have dementia or not, relate to intuitive not rational thought. We don’t derive most of our pleasure from our knowledge of things like the names of current political figures or how to multiply or divide 1,396 by 3. Most of our pleasure comes from eating our favorite foods, listening to music, watching movies or TV, time with good friends, etc. A person with dementia can enjoy all of these things even years after their diagnosis.

I’d like to emphasize one other thing that people with dementia can appreciate via their intuitive thought, and that is LOVE. Love can play a role in lifting anyone’s spirits, but it can be especially helpful with people who have dementia. Their loss of rational thought can easily lead to a lower sense of self-worth. People respond differently to them because they are often unsure of what to do or say. The result is that people with dementia are often ignored, and their sense of self-worth is weakened.

For that reason, I believe caregivers should do everything they can to make sure their loved ones know that they are loved – that they matter. This is easier said than done. Caregivers often find themselves so occupied by routine responsibilities of caregiving (that their own rational thought tells them are important) that they overlook the most important thing they can do – making loved ones feel they are loved.

One reason I feel comfortable giving this advice is that it does not require that other caregivers do the same things that Kate and I have done. When we decided to enjoy life and each other for as long as we were able, we looked to things that had always given us pleasure – music, movies, theater, eating out, travel, and time with friends and family. We were lucky that both of us enjoyed all of these things. That doesn’t happen with every couple, but I do hope that other couples and families might be able to find their own ways to enjoy life and each other. It is certainly worth trying.

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Reflections on Living with Alzheimer’s: Part 1

Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?

There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.

Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.

There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.

Pre-Diagnosis

  • Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
  • Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
  • We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
  • We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
  • For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
  • There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.

This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.

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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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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A Brief Update

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

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

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

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

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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.

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Our Lives at Stage 7 of Alzheimer’s

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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