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Thirty-four Years of Caregiving

Thirty-four years ago this past Saturday, November 11, 1989, Kate’s father had a massive stroke. It had been preceded by several TIAs, but his stroke had a major impact on his life and the lives of his family.

Until that time, Kate and I hadn’t given much thought to caregiving for our parents. We were empty nesters focusing on making the most of our time together while completing the remaining years before retirement. We never stopped doing that; however, we took on a new role as caregivers.

It began with her father’s stroke. He died four months later. During and after that, we found that her mother also needed care. Several years later, she experienced a stroke as well and developed vascular dementia. Ultimately, we brought her to live with us for 5 ½ years with 24/7 in-home care before she died in 2005.

In the mid-90s, my parents moved to live near us. I didn’t know at the time, but my mother had an undiagnosed form of dementia. She died in 2002, but my father had a significant other who developed vascular dementia. We helped him take care of her until her death in 2009. That same year, my father had a stroke, and in 2011, Kate was diagnosed with Alzheimers.

My father died in 2013. Since then, I have been able to give my full attention to Kate who is in the last stage of Alzheimer’s.

Caregiving always comes with a variety of challenges, but it can also have its rewards. The most important reward for me has been the opportunity to walk with loved ones through the last chapter of their lives. They did a lot for me, it has been rewarding to be able to do something in return.

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Something New, and It’s Good

For the past two and a half years, Kate and I have followed a rigid routine. The caregiver arrives at 11:00 each morning. The first item on the agenda is to get Kate dressed and out of bed. Until recently, we put her in a recliner in a sitting position where the caregiver served her lunch. She remained in the recliner until we went out for ice cream shortly after 3:30.

While I was away, Kate often felt sleepy, and the caregivers got in the habit of setting the recliner in a reclining rather than a sitting position. I began to feel that she was spending too much of her day on her back and decided to move Kate from her bed into her wheelchair instead of the recliner. Originally, I was concerned that being in the wheelchair all day might be uncomfortable for Kate, but she accepted the change without a problem.

After we changed our primary caregiver 3-4 months ago, the new person asked if she could take Kate out of the apartment. I told her that would be fine. It turned out much better than I thought. She has responded well to the additional attention she receives. I meet them for ice cream after returning from lunch. I frequently find them talking with other residents and staff in much the same way as when I am with her. Kate herself doesn’t often say very much, but she often smiles. That lets all of us know that she is happy.

This has now become a regular part of our daily routine. I’ve always felt that even the best of our caregivers don’t give her as much attention as I would like. The new routine solves that problem. It works for everyone. Kate and the caregiver like getting out of the apartment and mingling with other residents and staff. I, too, like it because it provides Kate more stimulation than when she and the caregiver are alone in our apartment. It’s a “Win-Win-Win” situation.

This is another reminder of the importance of intuitive thought or abilities. This change did not stop the progression of her Alzheimer’s. Her rational thought or ability hasn’t improved. Her memory of people, places, and things is gone. Her aphasia means that she says very few things that we can understand.

Nevertheless, all is not lost. Her intuitive thought and ability remain. As a result, we continue to enjoy life and each other. What more could I ask at Late Stage Alzheimer’s?

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Update on Kate’s Aphasia

I can’t pinpoint a time when Kate’s aphasia began, but I wrote a post in September 2019 about her loss of words and difficulty explaining things. Over the past four years, her aphasia has progressed considerably. Her stroke almost two years ago also had an effect on her speech. For a good while after the stroke, she didn’t speak at all. Since then, she has gradually improved. Over the weekend, I compared two videos. One was taken three months before her stroke and the other one Saturday night. The change is striking. Two years ago, she was able to speak much more clearly than now.

Today, she speaks very little. Most of the time when she encounters residents and staff, she doesn’t say a word at all. That is also true for her time with her caregivers and with me; however, she surprises us almost every day with words that we can clearly understand. For example, last week while the housekeeper was cleaning our apartment, she hit something that sounded a little like a knock on the door. Kate was lying in bed adjacent to the room where the housekeeper was working. Without any hesitation, she said, “Just a minute.”

Because such clarity of speech is rare, I jot down some of the things she says. Here are a few examples.

September 30 (In the Dining Room)

Server:          “How are you tonight?”

Kate:             “What about you?”

A few minutes later

A resident at another table tapped on the table.

Kate:             “Come in!

September 26

At Café for Ice Cream

Caregiver:     “Would you like some water?”

Kate:             ”Yes, please.”

When finished:

Kate:            “Thank you.”

September 21

Putting Kate to Bed

Richard:        “I’m going to be with you all night.”

Kate:             “Really?”

Richard:        “Yes.”

Kate:             “Great!”

September 8 (After getting Kate to bed)

Richard:        “I love you so much.”

Kate:             “I know you do.”

August 30 (After the podiatrist finished trimming her toenails)

Kate:             “Good job.”

August 28

Richard:        “I’m going to take my shower. Then we can have an evening to ourselves.”

Kate:             ”I like it.

August 17 (At dinner, Caregiver feeding her)

Waiting for the next bite of food

Kate:             “I’m ready.”

August 2     

In apartment after dinner

Kate:             “Are you going to stay home?”

August 2

After going to bed

Richard:        “You’re a beautiful gal, Kate.”

Kate:             “You, too.

August 1

Shortly after getting her in bed. I notice that her eyes are open, and she is smiling.

Richard:        “I’m right here where I like to be.”

Kate:             “Great. You’ll be here?”

July 18         

Daughter of caregiver stops to say hello while Kate is having ice cream downstairs

Daughter:      “I’ll see you later.”

Kate:             “Really?”

Kate looks at me and says: “She’s so nice.”

In dining room

Kate:             “I love it.”

Caregiver      “What do you love?”

Kate:             “I can’t tell you.”

Of course, my personal favorite occurred a week ago. She woke up early one morning and was talkative. I took several videos, but I didn’t understand anything she said in the first few. By chance, however, at the end of the last one, she said three words that I couldn’t mistake, “I love you.”

Note that these snippets are very short statements. There are times, however, when she is talkative. When that happens, there are a few clear words mixed with gibberish. Regardless, I treasure everything she says. I am grateful just to hear her voice.

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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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Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

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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.

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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.

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“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.”

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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.