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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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Celebrating Kate’s Birthday

Kate’s birthday was this past Saturday, but the big celebration was the previous weekend when our two children and all five of our grandchildren were here. This was an occasion when the stars were in perfect alignment. That’s saying a lot. They were traveling from three different states.

Our daughter, her husband, and both boys arrived in three cars. Our son and his family all traveled together, but they were flying. With all the issues surrounding air travel lately, you couldn’t help wondering if they might encounter a few problems. Fortunately, they didn’t.

The visit was a good one for all of us. This was the first time since June 2020 that all of us had been together. Only our children had been to our new home. Now, our grandchildren also have a good picture of what our lives are like.

The highlight was a birthday dinner on Saturday. We were in a private dining room off the main dining room. Everyone ordered from the menu. That turned out well since all were able to find something suited to their personal tastes. One of our son’s boys said, “That’s the best meal I’ve ever had.” He had the chicken sandwich.

After ordering our meal, I invited everyone to share special memories with Kate. There were twelve of us, and everyone including our caregiver spoke. Each person had unique memories. It was a very touching time. I don’t think there was a dry eye among the group when we finished. I know that sounds sad, but it was a great moment of connection with family and our love for Kate.

After dinner, our daughter and son gave Kate a gift of cookies, each of which was topped with icing and something of special significance for her. I took a video of our son, Kevin, who sat beside Kate and explained what was on each cookie. The last one was an image of the “Clasped Hands” of Elizabeth and Robert Browning. Kate’s mother had often given copies of the original to friends who were newlyweds. We have one on a table in our living room.

I can’t predict how Kate will respond to situations like this, but all of us were amazed that she rose to the occasion. She listened attentively and responded appropriately to everything Kevin said. When he was almost finished, she even said, “Thank you.” Then after Kevin said, “We love you, Mom,” she smiled and said, “I like you.” Fortunately, I took a video that captured that moment.

I am happy to say that she has continued to display similar moments. They don’t occur every day nor do they last all day. I treasure them and feel grateful.  

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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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The Importance of Family Relationships

I’m grateful for the many ways in which “Living with Alzheimer’s” has been easier for us than it is for many others. One of those that I don’t often talk about is our family relationships. Two weeks ago, our son, Kevin, came for a visit which prompts me to correct that.

In our initial conversations after her diagnosis, Kate and I discussed when we should tell our children and our friends. She was firm in her desire not to tell anyone until much later. For some time, I felt that knowing the diagnosis led me to make the most of the remaining quality time we would have. I still believe that was the most important benefit of getting the diagnosis. Prior to that, we had a strong relationship. We enjoyed life and each other, but at that moment, I knew our lives were about to change radically. Every moment we had together became precious. I wanted our children to have the same experience. On the third anniversary of her diagnosis (January 21, 2014), I arranged a conference call with Jesse and Kevin to break the news.

As I had hoped, they have taken advantage of that knowledge. They’ve been able to follow the progression of Kate’s dementia and enjoy many special moments with her. Although they both live out of state, they have kept up with frequent phone calls and periodic visits. In addition, I’ve been able to share other details of our lives via this blog.

I found the benefits were not only for them but for Kate and me as well. It was still early in our journey. My stress was minimal. I didn’t need much support. With the passage of time, Kate has declined, and the responsibilities as her caregiver have introduced significantly more stress. That has made the relationship with our children even more important.

I’ve read about other families’ experiences with Alzheimer’s and the problems that can also arise. It’s not unusual to hear about conflicts that occur when aging parents and their children feel differently about things like driving, whether to engage outside help or move to a place where they have better access to care for existing or potential health issues. Even before Kate’s diagnosis, I wanted our children to be partners in this last stage of our lives. Letting them know about Kate was an important step in that direction.

Six years later, I feel that was definitely the right decision. Their calls and visits have brought us closer together. They are well-informed of the ups and downs in our lives. They know about any health issues that arise. They know the strengths and weaknesses of our various caregivers and how in-home care is working out. When I thought it was time to make a move to a continuing care retirement community (or life plan community), I let them know what I was thinking and asked for their thoughts.

Jesse and Kevin also feel free to ask me questions about things I may not have mentioned. On a recent phone call, Jesse asked if I had thought about whether I would move or stay in our current place after Kate’s death. I told her that I had and would plan to remain here. I explained that I wouldn’t want to buy another house nor would I want to leave the support I find here.

While Kevin was here, he asked if I had noticed any changes in my driving as I had aged. I mentioned that I am more easily distracted than in the past. I have to be more careful when I use the controls for the audio system and temperature. When I don’t, it is easy for me to drift to the right or left. I also mentioned my only interest in getting a new car would be to have the new safety features like the blind spot alert. He saw an example of that when I started to change lanes and the driver of a car about to pass us honked his horn.

They have been very supportive of my role as caregiver for their mother, and I have been receptive to their thoughts. As a gerontologist, Kevin has a special interest. That has also led to my asking him questions about his own perspective based on his professional experience with other seniors. Thus far, we haven’t had any conflicts, and I don’t expect any because of the nature of our relationship.

Kevin’s recent visit and Jesse’s visit a few weeks before that came at a time of transition from one caregiver to another. They had an opportunity to see firsthand how things were going. My stress is greater now. Along with that, my blood pressure has been somewhat higher than usual. I’ve found myself getting behind on many things. Sometimes I fail to look at my calendar. That leads to missing appointments. I don’t respond as quickly to emails; and if you are a regular reader of this blog, you know that I don’t post as frequently. In fact, I began this post a couple of days after Keven left. That was almost two weeks ago.

During Kevin’s visit, I relaxed more. He and I went out for lunch several times and had good conversations. In a way, it was like taking a vacation. Since then, I’ve felt more at ease, and my blood pressure has been normal. That seems to confirm my belief that stress was affecting me. It also boosts my confidence that I can find ways to minimize its impact.

The impact of our family goes beyond our relationship with our children. Kate and I both have brothers and spouses that live out of state. Because of that and the pandemic, we have had less personal contact, but they stay in touch by phone and have been very supportive.

Interpersonal relationships with family, friends, colleagues and even strangers have always been important to me, but the support from our family has been especially significant. I am grateful.

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Special Moments With Family

Although Kate is generally happy, her mood varies more at this stage of her Alzheimer’s than it has in the past. Sometimes, like Monday, she’s in an especially good mood. I treasure those moments as a gift from her.

She was awake before 7:00 that day and remained awake until going to bed that night. I took a short break for breakfast, but I didn’t take my morning walk, check email, or read the paper. I was engrossed by her happiness and wanted to enjoy every minute of it.

After her morning meds and something to eat, I got in bed beside her and turned on a mix of YouTube videos of highlights from concerts by Andre Rieu, his orchestra, singers, and dancers. Watching videos like this has been the centerpiece of our evening activity following dinner for at least the past five years.

During the past year or so, she’s been much less attentive to the videos themselves but continued to enjoy the music. I attribute this to the difficulty she has in knowing where to focus her eyes. She has the same problem when I show her pictures in an album or on the TV. Several times lately, I’ve been encouraged when I played YouTube videos of puppies doing cute things and discovered that they caught her attention at least for a moment. On Monday, as we watched together, she was engaged with both the music and the videos themselves. More than that, she was enthusiastic and expressed her pleasure repeatedly for almost three hours until the caregiver arrived, and I went to my Rotary meeting.

I was especially pleased that our son, Kevin, was with us and got to partake of most of the morning. He came for a visit last Thursday. The visit itself was special in that Kate’s brother, Ken, and his wife, Virginia, as well as our daughter, Jesse, were also with us. I was somewhat like a parent during this time, hoping that all of them would get a good understanding of how Kate is doing and why I say that we continue to enjoy life and each other. I am satisfied they did.

Monday morning stands out, but there were other moments over the weekend that were also special. Among them was a moment when I read Kate a resolution that our church had adopted in recognition of her service as the church librarian for 19 years. It’s been years since she has been able to remember this. When I remind her of her service, she usually recalls it with pride. It pleased her to hear me read this gift of appreciation from the church.

On Sunday, Jesse had a her own special moment when she got in bed with Kate and took a video of a brief conversation between the two of them. It was as special for her as Monday’s experience was for me.

Sunday afternoon, Kate and I shared another special moment when I handed her a stuffed bear that Ken’s wife had made for her. She didn’t say a word; they weren’t needed. She held the bear tightly in her arms and against her face for a full 15-20 minutes. It was a touching moment that I was able to capture on video.

The past few days with family went very well. Every one of us clearly recognized Kate’s decline, but we were all able to accept her as she is and convey our love for her. I think she would say that was the most special gift we could offer.

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Good Things

Our daughter and son were in town this past weekend to celebrate Kate’s 80th birthday. It’s always nice to have them, but this weekend was very special. Most importantly, Kate enjoyed herself. Saturday, the day of her celebration, she was out of bed all afternoon and through dinner. She joined in with the singing of Happy Birthday and gobbled up her cake and ice cream.

Beyond that Jesse, Kevin, and I had more opportunity to talk among ourselves than we usually do. That gave me a chance to update them on our situation as well as for them to see for themselves how we are doing. I consider them as partners in our lives as seniors. Since we are moving to a continuing care retirement community in April, the two of them looked around the house for things they might like to have. All-in-all it was one of the best family times we’ve ever had, and I think they felt the same way.

Jesse left on Sunday, but Kevin didn’t fly out until Monday afternoon. That gave the two of us a chance to have lunch together before dropping him off at the airport. He has been coming for a long weekend two or three times a year since 2014, and this was the first time we have had a meal together without Kate. It was another good opportunity for us to have a leisurely chat.

Starting with the weekend and extending through Wednesday, Kate had a string of six consecutive good days. That doesn’t mean we were able to get her out of bed each day. It means that she enjoyed herself more than usual. We’re experimenting with a new routine. We don’t try to get her out of bed too soon after she wakes up and has her breakfast/lunch. We have found that she is more likely to express a desire to get up later in the day. We’re trying to take advantage of that inclination, and it seems to be working. If she isn’t interested, we accept that and wait until another day.

Once again, I like to emphasize that even at this late stage of Kate’s Alzheimer’s, she and I are still having good times together.

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Ken and Virginia’s Visit

Today is the last day we have with Kate’s brother and his wife. The visit has gone well. We have focused on being together. Except a short drive through the continuing care retirement community that we will be moving to next year, we haven’t done anything special apart from eating out. I was interested in learning more about Ken and Virginia’s move to a similar community this past November. They seem to have adapted well. In their case, it involved a change of cities. They are now closer to family. We have had time for conversation.

I was especially pleased when Kate and Ken had an hour or so to look through a book he had recently given her. It contains a large collection of photos of their hometown of Fort Worth. Virginia and I adjourned to the living room, so we couldn’t hear their conversation. The fact that they spent so much time was a good sign that Kate enjoyed it. This was right after returning home from lunch yesterday. That is a time she normally rests. They finally stopped because she was tired. Ken mentioned that she also began cry as he read and told her about several of the photos. One involved the deaths of a basketball team many years ago.

It helps that Virginia and Ken are sensitive to Kate’s need to rest and have gone back to their hotel an hour or two each day. They understand that she has to work hard to keep up with a group. We have followed our daily routine though she has gotten to bed later at night. I think it is good for her to have a little extra stimulation. I feel very strongly that she and Ken should make the most of this visit. The next one is likely to be very different.

The only concern I have had is maintaining Kate’s involvement in our conversation. Virginia and I are the talkers in the group, and we have dominated. There is a certain inevitability to this. The nature of the conversation has to be rather limited for Kate. I also recognize that she is approaching a time when it won’t be possible for her to join in a conversation no matter what the rest of us do; however, I don’t want her to feel excluded from the group.

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What makes for a good day?

It is far from unusual for me to say that Kate and I have had a good day, but what are the elements that make it so? Number one on the list is Kate’s happiness. My contact with other caregivers suggests that I am not unique. Whether caring for someone or just living with someone who is perfectly healthy, one’s happiness is vitally linked to the feelings of the person you love. Fortunately, Kate is typically happy.

There are a number of other things lead me to say we’ve had a good day, and they all play a role in Kate’s happiness. They include my not having to wake her, getting up early enough to make a trip to Panera and return home for a rest before going to lunch, having a rest after lunch, and having time for other pleasures like looking at photo books, reading, social interaction with friends/family, and events like our music nights at Casa Bella.

That is exactly what happened yesterday. Kate woke up on her own before 8:30. She was in a cheerful mood, and we were at Panera about shortly before 9:30. She was tired from getting up early and ready to go home at 10:00. She rested for an hour. Then I told her I would like to take her to lunch. She thought that sounded like a good idea. We went to one of our favorite lunch places and came back for another rest for about an hour and a half.

When her rest was over, I suggested we look at her “Big Sister Album.” While we were going through it, Ken and Virginia arrived. The flew in from Texas for a long weekend visit. It was our first time to see them in a while. We enjoyed visiting with them and then went to Casa Bella for Broadway Night. It was an excellent program featuring music from the 1940s. We were familiar with every song. To top it off the singers and accompanist were quite good. We don’t normally pack in this much in a single day, but it was all done at a leisurely pace. It was a good day.

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Reflecting on our Son’s Visit

Since I first informed our son, Kevin, and our daughter, Jesse, of Kate’s diagnosis five years ago, Kevin has made a point of visiting us for long weekends several times a year. I am sure that he has benefitted by making the most of his time with Kate. It has also given me a lift and provided Kate with much pleasure as well.

During his recent visits, her memory of him has faded. That means she hasn’t had the pleasure that accompanies the anticipation of his coming. She does, however, enjoy his presence and connects with him as though she recognizes him as her son in the same way that she relates to me when she doesn’t remember that I’m her husband. She is very at ease with him.

During each visit there are special moments. Their time together on the afternoon of his arrival was one of those. They spent about two hours looking through one of her family photo books. It was the kind of experience I had hoped might occur after I informed both children about Kate’s diagnosis five years ago. I went to the grocery store when they first started. When I returned home, I let them continue this personal time to themselves but joined them a little later.

Of course, life isn’t a constant stream of such moments. Our lives consist of many routine activities that, by themselves, don’t mean anything special. When they are shared with people you love, however,  they are special in their own way. Kevin’s visit was a good example of that. He was here for his high school class reunion, so that was a highlight for him. His time with us, however, was spent going through our activities of daily living.

As Kate’s care partner and Kevin’s father, I am glad that he was able to catch a glimpse of what our lives are like. Since he lives almost 1200 miles from us, it’s hard to know what is really going on. He actively reads this blog, but I felt even that might not fully convey what living with Alzheimer’s means for us.

You might ask why this matters to me. It goes back to the time when my father was caring for my mother who had dementia. The last eight years of my mom’s life, my parents lived right here in town. I was with them a lot, but I didn’t know as much as I should have. I have only realized that as I have cared for Kate. Dad never shared much about his life as a caregiver or Mom’s as a person with dementia. I want our children to have a better understanding of our lives. That was a major factor in my starting the journal that eventually became this blog.

In addition, our son is a care manager. His whole career has involved caregiving. It seems appropriate that he should be fully informed about his parents’ situation. Not surprisingly, he has taken a genuine interest in staying in touch as Kate’s Alzheimer’s has progressed.

Although not in a career that deals specifically with caregiving, our daughter, Jesse, works a lot with seniors and takes a great interest in their lives. I also want her to know about us.

That said, Kevin’s visit was an especially good one because he got to see a very representative snapshot of how Kate is doing and the way in which I care for her. During past visits, her symptoms were much less noticeable. She has changed significantly since he was last here in March. He saw how much her memory has faded. He also was here when she didn’t want to get up in the morning and her desire to rest in the afternoon. What is more important to me is that he could tell how much we still enjoy life and each other.

Because Kate slept late while he was here, he and I had an opportunity to talk about our mutual observations. I am often concerned that my blog posts don’t adequately express what our lives are like. I was pleased to hear him say that he thought there was a pretty good match between what he had read and what he observed for himself.

Since his career is in eldercare, I was eager to hear how he thought our own experience compares to that of other couples living with Alzheimer’s or another form of dementia. My personal impression is that we have been exceedingly fortunate compared to most others. He confirmed my impression.

We were also able to talk about the future. We discussed my plans for a move to a continuing care retirement community in another year and a half. I also told him my own desire to work closely with him as well as Jesse as I get older. My exposure to the caregiving memoirs of children caring for the parents has sensitized me to the problems that can arise. In particular, parents often share very little about things their children will need to know when the parents require help. I would like our relationship to be a smooth one with as few surprises as possible.

Considering all these things, Kevin’s visit was a very good one. His attentiveness both in phone calls and visits has strengthened our relationship and set the stage for a bright future.

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Three Days in a Row with More Confusion Than Usual

After getting up early and taking a shower, Kate went back to bed yesterday morning. As she had done the day before, she got back in bed after her shower and didn’t want to get up. I was going to my Rotary meeting, and Kevin was taking Kate to lunch as he has done on other visits.

Although she seemed to recognize me when she got up the first time, she didn’t when I tried to get her up later. She asked who I was, and I told her my name and that I was her husband. She didn’t believe me. As I usually do, I backed away from trying to convince her. I decided to focus on getting her dressed. We immediately ran into a problem. She was still undressed following her shower and was uneasy about letting someone she didn’t know help her with her clothes. I didn’t push but continued to talk with her. She asked about her clothes several times. I told her I had them right there on the bed and would help her get dressed. She finally consented. As she was dressing, I told her that Kevin was here and would be taking her to lunch. She didn’t know who Kevin was. I explained, but I wasn’t successful. I told her she would recognize him when she saw him.

As it turned out, I was right. At least she acted as though she “knew” him. That didn’t mean she remembered his name or that he was her son. She did, however, greet him happily. Then for a few minutes she gave her attention to the flowers inside and outside. She followed that by asking his name. Then she commented on his voice. She said, “You sound like a nice guy. I don’t know why I say that. I just sense it.”

We went into the kitchen where I had put out her morning meds. While she was taking them, she asked again about Kevin. I told her that he was our son. She found that hard to believe and asked Kevin. He confirmed what I had said, but she was still skeptical.

When we got to my office where I was meeting a colleague, Marianne, I told Kate I would be going to Rotary and she would be going to lunch with Kevin. She said, “Why don’t you go along with us?” I told her I could have invited her to attend my Rotary meeting but thought she might not enjoy it. She agreed, but she still looked like I was deserting her.

After lunch, we met back at the office and then went home where she rested until it was time to take Kevin to the airport for his flight home. From there we went directly to dinner. Once we were home, she wanted to rest again. She rested until 8:00 when I suggested we get ready for bed. I got the impression that her memory of me as her husband was “on again” “off again” for the rest of the evening, but she wasn’t like she was during the morning. She clearly was quite comfortable with me and showed complete trust in me though she had been suspicious in the morning. I don’t think I observed anything that I hadn’t seen before; however, the depth of her confusion seemed greater than I have noticed before. I think she was quite confused much of the day but still functioning pretty well. She even surprised me on the way home from dinner when she made an observation about the two of us. She said, “When you say silly things, I don’t get mad at you. I know you are just trying to be funny.” She may not know my name or our relationship, but she has a keen insight into my personality. She “knows” me.