Posted on

Living Joyfully During the Holiday Season

The Christmas season has always been special for Kate and me. We had our first date on December 19, 1961. Exactly one year later we became engaged. Since then we have celebrated the season in many ways. Like most people, much of that involved time with family, but we have also made December trips to places like New York City, London, Paris, Vienna, London, and several locations in Germany.

Life is very different now. We gave up international travel in 2015 and travel to our children’s homes in 2018. Since then, we have celebrated the season at home. Now that Kate is in the last stage of Alzheimer’s and requires total care for all of her daily activities, we don’t get out except within the halls of our retirement community.

Despite these changes, we are living joyfully this Christmas. Living in our retirement community has provided us with a considerable amount of social contact and special events of the season; however, sharing the season with Kate has made this a Very Merry Christmas for me.

By now, most of you know that music has played a major role in our lives, so it should not surprise you that we have binged on holiday music day and night the past few weeks. More importantly, Kate seems to have risen to the occasion. She has been unusually cheerful and talkative, especially in the past two weeks. For example, almost every day in the past week, she has given me a smile when I greeted her in the morning. That is significant because her mornings are the time of day she is least likely to smile or talk.

Her afternoons, especially after 3:30, are her best time of day, but they have been even better this week. Our regular caregiver was out a few days, and we had several others filling in. I might have thought this would have a negative effect on her, but it hasn’t. She has been just as cheerful with them and other residents.

Our evenings are often special. Three nights ago was a good example. Kate was unusually talkative and spent the better part of an hour talking to me. She was trying to tell me about some experience she had had. As she talked, she laughed at a number of things she said. Of course, none of what she said had actually occurred, and I wasn’t able to understand most of what she said; however, she was happy. I was too.

Yesterday was the sixty-third anniversary of our first date. We didn’t go out for dinner. We ate in the dining room of our retirement community as we do every night, but we were together. Nothing could be better than that. We are, indeed, living joyfully this Christmas season.

Posted on

Living in the Moment

During most of my adult life, I’ve heard people talk about ‘Living in the Moment.” I always felt that Kate and I had done just that throughout our marriage. Then she was diagnosed with Alzheimer’s. Suddenly, living in the moment took on a new meaning. I felt an intense desire to make the most of the time we had left.

One of my first efforts to spend more time with her was to change my lunch routine. That was easy. I was already transitioning into retirement and coming home after lunch. I started leaving the office earlier, and we began eating lunch together every day. Little did I know that it was our first step toward binging on eating out for lunch and dinner every day until the pandemic in March 2020.

Eating out was not the only thing we binged on. We also attended many movies as well as musical and theatrical events. We were together a lot, but I did get out to go to the Y, run errands and meet friends for coffee.

With the progression of her disease, I began to feel uncomfortable leaving her alone. That led me to bring in caregivers four hours daily on Monday, Wednesday, and Friday.

This turned out to be harder for me than for Kate. I didn’t like being away from her that long, and I always came home before the caregiver was supposed to leave. We continued that schedule until she was hospitalized with Covid in 2020. That is when I arranged for care eight hours a day seven days a week.

To a degree, I have adapted to being away from her. Even with help, the stress of caregiving is much greater than before, and I enjoy going out to lunch three days a week; nevertheless, I still want to be with her as much as possible. As a result, I am away no more than three hours of every 8-hour shift. That means I am with her twenty-one hours a day.

I have often talked about our Happy Moments. During the past year, we have begun to have more of those.  That’s because Kate is now waking up earlier in the morning than she has in the past three or four years. That has cut into my time to take care of my daily tasks, but it also gives us more quality time together. I’ve welcomed that and make the most of it. I am with her as much as I can during those mornings.

When I’m doing my daily chores like folding and putting up laundry, I do that in the bedroom so that I can be with her. Other times, I get my laptop and sit up in bed with her while I check email, and work on other things like new blog posts. Every morning I do deep breathing exercises. When she is awake, I do them sitting up in bed beside her or in a chair beside the bed.

On mornings when she is especially alert, we sit up in bed close to each other and just enjoy being together. Since Kate has no memories of the past, I remind her of other special moments in our lives. They include our dating, falling in love, getting married, moving to new places, having children, making new friends, and traveling. We often watch music videos on YouTube. These are very special moments for both of us. We are indeed “Living in the Moment.”

Posted on

Mornings with Kate

Kate has never been a morning person and Alzheimer’s, Covid, and a stroke have made mornings the most difficult part of her day. I call this her neutral time. It’s a time when she is neither happy nor sad, but that seems to be changing.

Over the past year or so, she has experienced more “Happy Moments” in the morning. During the past few weeks, they have occurred even more frequently, and now I spend more of my morning time with her. We watch music videos on YouTube, and I often talk to her about the many moments we have shared during our marriage. She rarely speaks, but her facial expressions communicate that she enjoys hearing what I tell her.

These are also times when it is clear that our relationship remains strong. We like being together. Each of us retains the love that began during our senior year in college. Like so many other aspects of our lives, I don’t know how long we will have these moments. I do know that we were in the same position at the time of her diagnosis 13 ½ years ago. We simply decided to enjoy life and each other for as long as possible. That has served us well. I think we’ll stick with it.

Posted on

Our Life at Stage 7 Alzheimer’s

It’s been a month since my last post. This break is by far the longest I have had over the course of Kate’s Alzheimer’s. Most of those breaks have been in recent years. I attribute much of that to the fact that our lives have become more routine since Kate has required total care. That began after her hospitalization with Covid in November 2020. Her activities and behavior are more similar from day to day than they were before. That gives me less to talk about.

However, more than our routine life keeps me from writing as much. My life is much busier now than it used to be. Except for 2-3 hours a day when I go to lunch, run errands, meet friends, and attend activities in our retirement community, I am with Kate. Some of that time involves actual care but much of it is simply enjoying my time with her.

The most important thing that has happened since the first of the year is that Kate has steadily shown improvement. She has enjoyed many “Happy Moments” over the past few weeks. I have come to expect at least some of those every day.

Kate’s behavior regularly reminds us that she understands much of what other people say. Sometimes, her smiles and laughter suggest that she is enjoying the conversation around her. She knows far more than most of us are aware.

One of the changes that has occurred is her mood in the morning. Beginning during what I would call the middle stage of her Alzheimer’s, she often awoke confused or frightened. Over the years, the fright seemed to diminish, but she awoke in what I call her “neutral” state or mood. During that time she doesn’t smile, talk, or respond to what is said to her.

During the past five to seven months, Kate has begun to smile and talk far more in the morning. That has changed my schedule and is another reason I don’t write as many new posts. Now, I spend more of my morning time with her. I am writing this post sitting up in bed beside her. She has been in and out of sleep, in a happy mood, and talking a little. I just looked over at her. Her eyes were closed, but she had a big smile on her face. I leaned down and put my head on her shoulder, and she chuckled. That is a typical response when I express any form of affection. I love these moments, and we have many of them.

It has been 13 ½ years since her diagnosis and 18-20 years since we noticed the first signs of her Alzheimer’s. I am mindful that these moments won’t last forever, and I feel a strong desire to spend as much time as I can with her. We still enjoy life and each other. How fortunate we are.

Posted on

An Amazing Afternoon

As I have noted previously, Kate was hospitalized with Covid for eight days in November 2020. Prior to that, she was in the early stage of aphasia and also showed signs of losing her mobility. Her hospital experience exacerbated each of these symptoms. Five months later, we moved to a continuing care retirement facility. Although she never cognitively recognized the move, our lives were very different. A year later, she had a stroke.

Since that time, we haven’t had any other “bumps” in the road, and Kate has improved in noticeable ways. That has been especially true during the current year. This past week we experienced another “Happy Moment” for her and everyone she encountered.

It began at a reception following an afternoon concert.  One of the residents of our retirement community came over to talk to us. During the conversation, Kate surprised us by speaking to her. As usual, what she said was unintelligible, but it was great to see and hear her talking.

When that resident moved on, another resident approached Kate and asked her a question. This is the same resident I mentioned several posts ago who a few weeks ago had engaged in an extended conversation with Kate. We were especially pleased because this resident stops to visit with us almost every day when we go for ice cream. She is always seeking a smile or some audible response. Typically, Kate neither smiles nor talks to her. This time she received plenty of both.

From there, we went to the café down the hall where we got Kate’s ice cream. It wasn’t long before that same resident dropped by. Once again, Kate responded beautifully. They must have talked at least 20-30 minutes.

While they talked, another resident sitting at a nearby table was astonished. She said, “I’ve never heard her talk before.” She was so fascinated that she dropped what she was doing and just listened.

Three other residents were sitting across the room. They had heard what was going on and were listening as well. When the resident talking with Kate left, I invited them to come over to our table. They gladly accepted my invitation. That continued until it was time for our dinner. Altogether, Kate was involved in conversation almost two hours.

It was not only that everyone was amazed that she was talking. She also appeared to grasp what was being said to her.

During the past few days, Kate has continued to be especially cheerful and talkative. This isn’t true every moment of the day but definitely more often than usual.

Posted on

An Unusually Happy Moment

In my first post of the year, I said we were off to a good start. That was because we had just gotten a replacement for our previous Monday through Friday caregiver who left us for health issues of her own. Three months have passed since our new caregiver has been with us. She has made our lives much better; however, Kate has also gotten along very well during the first three months of the year. My previous posts have been filled with the “Happy Moments” we have shared this year. During the past week, we have had more of those.

One of those occurred last Wednesday. As I was returning home from lunch, I caught the tail end of an unusually Happy Moment. Kate and the caregiver were at the café in our retirement community where we go for ice cream each afternoon. When I approached them, I saw Kate and the caregiver with another resident sitting right in front of and facing Kate who was smiling. They were having a conversation.

What made this an especially rare moment is that the resident drops by almost every afternoon when we are having ice cream. Each time, she is looking for a smile or verbal response from Kate. That rarely happens. This time she hit the jackpot.

Of course, the resident could understand almost nothing that Kate was saying. Like me, she was simply enjoying the fact that Kate was so cheerful and talkative.

Later, I was surprised to learn that Kate had spoken several words or short sentences that were understandable. Here is one that our caregiver told me.

Resident: “I think Richard likes you.”

Kate: “Yes. He takes care of me.”

Since then, Kate has had several other days when she was especially cheerful and talkative.

I can’t explain why she is having so many more of these experiences, but they make everyone happy as well. I do know that when she is like this, she receives a lot of reinforcement from the people around her. That is certainly true for her caregivers and me, and we celebrate every Happy Moment.

Posted on

Let the Good Times Roll

Two months ago, I wrote a post recognizing the 13th anniversary of Kate’s Alzheimer’s diagnosis. Since that time I have added five new posts. Each one has celebrated “Happy Moments” with Kate. This is another one.

Kate has continued to make significant progress. Not concerning her Alzheimer’s, but she has more “Happy Moments” than when we moved to our retirement community three years ago. I haven’t kept score, but since January I don’t think a day has passed when she hasn’t been very cheerful at least part of each day. Let me remind you that this doesn’t mean she has Happy Moments all day long. Her mornings are still the quietest part of her day. Of course, she sleeps a good bit of the time before the caregiver arrives at 11:00; however, she has been waking earlier and is often smiling.

Her Monday through Friday caregiver and I have also been struck by the fact that she is saying more words that we can clearly understand. I keep a record of them as they occur. Here are a few from last week.

After I returned from lunch

Richard: It’s about time for us to go for ice cream.

Kate: That’s good.

After dinner that night

Richard: We’re going to have a nice night together.

Kate: I love it.

Just before leaving the dining room

Server: Goodbye. See you tomorrow.

Kate: I’m glad you’re here.

In apartment

Richard: I like all the pictures I see of you.

Kate: I thank you.

Getting Kate ready for bed

Kate: Coughing

Caregiver: Are you OK?

Kate: I strangled.

You may think of these as insignificant, but for someone who rarely says a clear word, it is very special.

I attribute much of her recent progress to her recovery from her stroke two years ago. Since then, we haven’t had any bumps in the road. In addition, she continues to receive a good bit of attention from the residents and staff at our retirement community. I, too, give her a lot of attention. I am only away from her about three hours a day. That comes when I am out for lunch, meeting friends for coffee, and/or running errands. In addition, I smother her with love from first thing in the morning until we turn the lights out each night.

Almost two weeks have passed since I began this post. Since then several everyday non-caregiving responsibilities have gotten in my way. During that time, Kate has experienced numerous Happy Moments. It should go without saying that has meant many Happy Moments for me. It has been an amazing time.

I know these moments won’t last forever; however, right now, I’m savoring every one of them.

Posted on

Happy Days

It’s been five weeks since the 13th anniversary of Kate’s diagnosis, and I haven’t had anything but good news to report. I’m happy to say that she continues to surprise me with her “Happy Moments.” They have been more frequent in the past two weeks. That is especially true when she and I are alone or with the caregiver, but she has also shared her cheerfulness with residents and staff.

I’ve been taking more videos because she has been talking more. Despite her aphasia, she appears to be communicating appropriately. I also continue to jot down things she says that are clearly understood. Here are a few of those from the past couple of weeks.

While having ice cream on Saturday afternoon, I said, “I didn’t have lunch today.” She said, “Why?” At Dinner that night, the caregiver said, “I had a cough.” Kate said, “What did you say?”

At dinner last Thursday, I said, “You’re entertaining us tonight.” She said, “That’s great!” As we neared the end of dinner, I said to the caregiver, “She really cleaned her plate.” Kate immediately said, “Yes!” A little later, she and the caregiver were waiting for me at the elevator. Kate said to her, “What are we going to do now?” Later in our apartment, I said, “You make me happy.” She said, “Yes, I know.”

Earlier this month, the Seekers were on YouTube singing “I’ll Never Find Another You.” I turned to Kate and said, “I’ll never find another Kate.” She said, “That’s wonderful.” These words may seem trivial to some people, but they don’t occur often; therefore, they are very special to me.

Kate has been saying things like this more often than in the past couple of years. Perhaps, the brain itself is repairing the damage from her stroke on February 7, 2022. Whatever the reason, I enjoy every word she speaks even when I can’t understand them. I just love hearing her voice.

Addendum

2024-03-04

The Happy Moments Continue

For the record, I would like to report that Kate’s “Happy Moments” have continued throughout the week since this post was written. As always, I want to emphasize that this doesn’t mean that they occur all day every day. She is usually in what I call her “neutral mood” in the morning. She tends to perk up in the afternoon, but this past week, she was unusually cheerful several mornings .

I am not naïve. I know that these good times will pass, but I have no idea when. It could be tomorrow or much later. In the meantime, I celebrate every “Happy Moment” she has.

Posted on

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.”

Posted on

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.