A Happy Valentine’s Day

It’s been years since Kate has been able to anticipate future events or holidays like Thanksgiving, Christmas, New Year’s, birthdays, or anniversaries. So I would never expect her to show any recognition of a holiday like Valentine’s Day, but she does have frequent “Happy Moments.” We shared two of those on Valentine’s Day.

The first occurred when I came home after lunch. As I do every time I’ve been out, I opened the door and said, “Hello, I’m home. I’m looking for Kate. Where is Kate?” As usual, she was in her wheelchair with her back to the front door. As I walked toward her, I could see her profile. She began to smile. I continued to walk closer and repeated “Where is Kate?” and finally said, “There she is! I’m so glad to see you.” I got down on my knees so that I could look directly at her and said, “I missed you while I was gone.” She beamed and started to laugh.

She was in a cheerful mood, and the two of us talked for almost an hour. I couldn’t understand most of what she said, but it is always a thrill when we have conversations like that.

This doesn’t happen every time I come home, but it does occur occasionally. It seemed to be more meaningful on Valentine’s Day and certainly more touching than any card or other gift she might have given me.

That was topped off by a romantic evening. After the caregiver was gone, and I had my shower, I got in bed with her. She was very relaxed but still talkative. We spent the rest of the evening listening to music and talking about our lives together. I reminded her about our first date and those that followed. That led to talking about our engagement, marriage, having children, and our travels. Again, I could not understand most of her words, but she appeared to be giving appropriate responses to everything I said.

It was a wonderful way for us to celebrate Valentine’s Day. At the time of her diagnosis thirteen years ago, I could not have imagined our having such moments this late in her Alzheimer’s. We are very fortunate, and I am grateful.

More Good Things

Wednesday morning, the caregiver who is with us Monday, Wednesday, Thursday, and Friday brought me more good news. She is now free on Tuesday and asked the agency to assign her to us for that day. She still needs to leave a couple of hours early on Wednesdays, but this brings closure to the most challenging period of stress I have experienced during the entire six and a half years we have had care at home for Kate. I am very happy. Not only do I have one person to handle Kate’s care for our weekdays, but she is the caregiver I have liked most since we first started home care in 2017.

That’s not all. Kate has had an unusually good week, and Friday was her best day since before she was hospitalized with Covid in November 2020. She was awake early and talkative off and on throughout the day. She was also responsive to residents who stopped to speak to her at the café downstairs while she was having her ice cream that afternoon.

For me, the highlights of the day were our times together that morning and that evening. I spent a large portion of the morning with her before the caregiver arrived at 11:00. She was cheerful and talkative. We had a good time. Our evening was a repeat of the evening I reported on in my previous post so I won’t elaborate. Moments like these are precious. I know we are very fortunate to have such experiences this late in her Alzheimer’s and wish that were true for every family “Living with Alzheimer’s.”

Good Things

Two thousand twenty-four is off to a good start. Our caregiver issue is almost solved. The first month after losing our regular Monday-Friday caregiver, we had 29 different caregivers. After ten weeks, the total is 40. That means we’ve had only 11 different caregivers in the past 6 weeks. Not only that, but the caregiver who had originally said she could work every Monday, Wednesday, and Friday had a change in her schedule that allows her to work every Thursday as well. Now, we only have to find a person to take care of Tuesday. Until then, we have different people filling in. Fortunately, most of them have been here in the past. This improvement reduces most of my stress.

More importantly, Kate has shown more improvement in recent weeks. As I have said in previous posts, this does not mean an improvement in her Alzheimer’s. It does, however, indicate that she is more at ease which is expressed in her smiles and her speech. It is still difficult to understand her, but her speech indicates that she is happy. From my perspective, that is what is most important.

I am especially pleased that our relationship remains strong. That isn’t reflected in every moment of every day. She is still very quiet on most mornings. On some mornings, she doesn’t express any recognition or interest in me. Other mornings, she does.

She expresses her feelings for me most often when I return home after being gone for a while. At other times, it is in the evening after she is in bed, and the caregiver has left. Last night was one of those.

She had already had a talkative afternoon. When we have occasions like that I generally expect that it won’t continue as we move to other activities. That was no problem last night, and we had a conversation that lasted at least an hour, perhaps a little longer. Sometimes she seems a little hyper when she is talking. This time was different. She spoke slowly and responded to what I had said. Sometimes she asked me a question, and I gave an answer that I hoped would be appropriate for the question she had asked.

During our conversation, she smiled a lot and laughed a good bit as well. It is hard for me to put our feelings into words. The best I can do is to say that we were both perfectly at ease and engaged in a conversation that meant a lot to each of us. I might say it was a beautiful bond of love that transcended her inability to say much that I could understand. I could almost imagine that it was one of those early days when we were dating. It was like each of us was enthralled by what the other was saying. She was still in late-stage Alzheimer’s that requires total care for all of her activities of daily living. For those moments, however, neither of us was mindful of that. We were, and still are, a couple in love, and Alzheimer’s has not been able to take that away from us.

Moments like this will not last forever. For now, we will enjoy every Happy Moment that comes our way.

My Best Christmas Gift

As we approach the end of this Christmas season and the beginning of a new year, I am feeling grateful for many things. Most of all, I am grateful that Kate is still with me and that we continue to experience “Happy Moments” together. They come and go as she experiences different moods throughout the day, but I come to expect them at some point every day. Christmas Day was like that.

She was still asleep when the caregiver arrived at 11:00. After getting her up and ready for our Christmas buffet at 1:00, she was still quiet. She remained that way for the balance of the day. I call this her “neutral” time because she expresses little emotion.

I have also grown accustomed to very nice evenings with her after the caregiver leaves at 7:00. I wasn’t sure that night would be one of them, but I got in bed with her right after my shower and turned on a YouTube video of “Christmas in Vienna” from 2008. We attended that very concert. That led me to reminisce with Kate, and I extended that to include many other experiences we have had during the Christmas season as well as other special times throughout our marriage.

As I talked, Kate perked up and began to smile. This continued for almost an hour until it was time to call it a day. She never said a word during this time, but her facial expressions conveyed her happiness and her love. Most of the day hadn’t been that special, but it ended beautifully. Her smile, facial expressions, and holding her hand made all the difference. It was a beautiful way to end another Christmas Day together. That was my best Christmas gift.

Two nights later and again last night, we had very similar evenings. I know moments like these may seem trivial, but they mean the world to me at this stage of her Alzheimer’s. They are part of why I say Kate is my greatest source of stress relief.

An Extraordinary Day

Once in a while, I highlight unusually positive experiences that I call “Happy Moments.” I use the word “moments” to emphasize that the experience is not usually long-lasting although it can occur over several hours.

On a typical day, Kate doesn’t express much emotion until the afternoon. She rarely says a word until after 2:00. This past Friday was very different. It began about eight o’clock in the morning and lasted until she fell asleep around 8:30 that night. It was a day filled with “Happy Moments.”

Kate generally sleeps late. Sometimes, she is asleep when the caregiver arrives at 11:00. Recently, however, she has waked up as early as 7:00. At 8:15 Friday morning, I checked on her. As I approached the bed, I could see that her eyes were open. I have a little routine that I follow each day when I see that she is awake. I say, “I think I see Kate. Yes, it is Kate. She’s my Texas gal. I’m so glad to see you.” Then I remind her that we started dating in our senior year of college, fell in love, and became engaged a year later. I go on to tell her that we’ve been married sixty years, and have two children, and five grandchildren.

Sometimes, but not always, she smiles. That day she smiled and started talking. She has aphasia, so I couldn’t understand much of what she said, but, as usual, I tried to play the role of facilitator saying things like, “Really?” “Tell me more.” “That’s interesting.” From that point, I got beside her in bed, and we began to talk. She dosed a few times, but we talked on and off until the caregiver arrived at 11:00.

A new person was filling in for our usual caregiver, so I wasn’t sure how Kate might respond to her, but she was fine as I left for lunch. While I was gone, the caregiver walked Kate around the hallways in her wheelchair and stopped to visit with residents in a couple of places. I learned later that she had been smiling and talking with other residents who had stopped to say hello.

Friday afternoon I had coffee with a longtime friend. When I arrived home, I went directly to the café where the caregiver had taken Kate for ice cream. I walked up behind Kate. As I looked around to see her face, she gave me a big smile. That happens frequently but not always. When it does, it warms my heart.

From there, we went to dinner in the community dining room where she always receives a lot of attention from the staff and other residents. She remained cheerful and talkative the entire meal. I can’t tell how long moments like these will last, and this time I was in for a surprise. She remained the way she had been all day until I turned out the lights around 8:30. It was an extraordinary day, unlike any I have seen before. I treasure moments like these.

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.

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.

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.

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.

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.