Covid Still Affects Our Lives

During the early stages of the pandemic, people talked about getting back to normal. By now, all of us are getting accustomed to making further adjustments to our lifestyle. That may be especially true for those us living in retirement communities. Kate and I have enjoyed the many benefits of community living, but the potential for the spread of Covid results in quite a few changes over time. Significant changes were in effect before our move fourteen months ago. They have continued off and on since then. The latest was last week.

For a year, menu service had been discontinued and replaced with a buffet. As the threat of infection had decreased, the rules had loosened. One of the most welcomed changes was returning to menu service in the dining room. We were informed last Thursday that our regular menu had been temporarily discontinued and replaced once again with a daily buffet. The decision was based on an increase in positive tests for residents and the food service staff.

Kate and I had Covid two weeks before Thanksgiving in 2020. Since that time, we have had our vaccinations and boosters and avoided any potential infections. This didn’t prevent our being among those affected. No, we didn’t test positive, but we were in contact with a member of the food service staff who did. As a result, we were “semi-quarantined.” That meant that we could go outside our apartment, but we had to wear a mask. All large-group activities were canceled. More significantly, we couldn’t eat in any of the dining facilities. We returned to carry-out meals.

In the scheme of things, this was a minor change, but our primary social engagement is in the afternoon when we get ice cream and have our evening meal in the dining room. The policy here is that one must remain as isolated as possible for a period of ten days after contact with someone who tests positive. As it turned out, we didn’t learn about the contact until four days later. That meant we had a shorter period of isolation and are now back to our regular routine except that, like all residents, we will continue to have buffet meals rather than ordering off the menu. That isn’t a problem for us. The meals are generally good. The downside is that the food is not as hot as it is when we order from a menu.

We weren’t cooped up for long. After eight days, we were still symptom-free. And we reinstated our routine afternoon trip for ice cream as well as evening meal in the dining room. The temporary removal from social engagement made me more appreciative of the benefits we have of living in a community like this. In addition, the benefits are not just for Kate, but for me as well, probably more so.

Our Lives at Stage 7 of Alzheimer’s

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sad Moments Accompany Happy Moments During Kate’s Recovery

Kate’s stroke occurred just over a month ago, and we are beginning to get a better idea of its more enduring effects. Her doctor is encouraged and thinks she may regain 80% of the abilities she had before. I think she has accomplished close to that right now. Almost every day, we see signs of improvement, so I’m not ready to say she has peaked.

After the first four days when she slept, we have gotten her out of bed every day except one or two. We only missed one week taking her to dinner in the dining room. We also added the afternoon visit to the café where she gets ice cream.

On the other hand, she is not like she used to be. That is reflected in several ways. Her energy level is much lower now. She has always been slow to get going in the morning, but she is sometimes like that until close to dinner though it is more typical that she perks up around three or four in the afternoon. Along with that, she seems to have more moments that trouble her on and off during the day.

She doesn’t talk as much. Previously, she would talk periodically during the day and even at night while she was sleeping. Since the stroke, she has had only a couple of moments like that. One of those occurred at dinner the other night. The caregiver and I were excited to see that. When she speaks, she often does so in a whisper that makes it hard to hear her. In addition, much of what she says is unintelligible.

In some ways, these changes are relatively minor. We were seeing signs of them before the stroke; however, the changes are more severe now.  It makes me think of our visits with Ellen, Kate’s best friend, whose stroke left her with aphasia. We made monthly visits with her, and it became very difficult to understand her. Aphasia also requires much more of the person speaking. In Ellen’s case, she could acknowledge hearing what you said and partially convey what she wanted to say. Kate remains silent much of the time. I miss hearing her voice.

For a long time, our evenings have been the best part of the day. Now, she is very tired when we put her in bed and frequently sleeps through until the morning. I continue to play music videos on YouTube with the hope that she might wake up and enjoy them with me. Sometimes that happens, but, more often than not, it doesn’t.

Finally, she has more moments when she doesn’t appear to know me or feel comfortable with me. She just looks perplexed. I interpret these moments as times when she doesn’t know where she is, who she is with, or who she is.

I’ve always known this was coming, but it’s been doing so gradually. The stroke has brought about a more abrupt downturn.

Let me close on a positive note. We still experience Happy Moments. They are just fewer in number and shorter in duration. When they occur, they are very special and lift my spirits tremendously.

Kate is Making Progress, But Life is Not the Same.

As I’ve said before, I’m encouraged by the progress Kate has made since her stroke almost three weeks ago. She is awake more. She’s beginning to use her right arm again. Her eyes no longer appear to be frozen to the left. We have taken her to the dining room seven times, and Wednesday we took her for ice cream, (As it turned out, the freezer was down, so there was no ice cream, but she ate a muffin.) I’m amazed at how well she is doing. I also recognize that recovery is a process. She is likely to improve even more in the days or weeks ahead.

Nevertheless, Kate’s stroke is having a significant impact on us. Like her original Alzheimer’s diagnosis and her hospital experience with COVID, it is another challenge in our journey, “Living with Alzheimer’s.”

Several signs suggest the stroke might push her several steps further along this road. One is that she is less emotionally expressive than before. This is most noticeable when we are getting her dressed and in and out of bed. That makes it easier for the caregiver, but Kate has lost a little spark that we respected. In many ways, it seemed appropriate for her to protest.

She is also more neutral in her verbal and facial expressions. She smiles, but her big smiles occur less often. The good news is that she has another smile with her lips closed that I find endearing.

You’ve heard me say many times that she often awakes in the morning without knowing where she is, what she is supposed to do, and even who she is. That experience still occurs, but it seems that she’s more placid in her response rather than being puzzled or afraid.

Along with these things, there are more times when she doesn’t know who I am although she almost always senses she can trust me or does so within a reasonably short time.

I’m particularly concerned about her speech. Although her aphasia made it hard for her to communicate, we were able to converse. It is much harder now, not because I can’t understand what she says. It’s largely because she speaks so little, even when asked a simple question like “Would you like something to drink.” I have a litany of things I say to her about our dating, marriage, children, grandchildren, and travel. They often bring smiles and comments. That isn’t as true now.

I’m very happy to say that we continue to have our Happy Moments. A couple of mornings ago, she was awake early, and I took advantage of that opportunity to spend more time with her. I put on some music I thought she would like, but she didn’t show much interest. I shifted gears to see if I could perk up her spirits.

I put on an album of 100 children’s songs that I had downloaded several years ago when she was disturbed about something after waking from a nap. It saved us that day, and we sang together for at least thirty minutes. She quickly forgot about whatever had disturbed her. I’ve used that album periodically since then, but it had been a long time. I discovered it still works.

It was different this time because she doesn’t speak much. She tried, however, by mouthing the words. She’s good at following the rhythm. It didn’t take her long before I could see expressions of happiness on her face. She got a special kick out of “If You’re Happy and You Know It.” I stood at her bedside singing, clapping, stomping, and saying “Amen” when called for.

That night we had another Happy Moment. We’ve always had great evenings, but the stroke has made those different. Sometimes, she goes to sleep right after the caregiver leaves. Often, she doesn’t wake until the next morning. That particular night she woke up after an hour or so, and I turned to YouTube and selected a series of songs that I know she likes. I caught her at a good time. For over an hour, we held hands and enjoyed the music. Off and on, I talked to her about our marriage and children. She didn’t say much, but she said a lot with her facial expressions.

Yesterday afternoon, I didn’t have any special plans except a brief visit to the grocery store. I spent the extra time with Kate even though the caregiver was here. I pulled up a chair beside her recliner and talked with her. At first, she wasn’t in the mood for conversation. As I spoke, she loosened up a bit. We spent almost two hours together. She dozed off and on, and I did most of the talking, but she was very responsive with her smiles and facial expressions. We both had a great time.

The other day when we were out, the woman in the apartment next to us stopped to visit for a few minutes. She spoke to Kate who didn’t respond. Our neighbor commented that she missed her smile. Me, too, but they haven’t disappeared altogether. And moments like those described above give me an emotional boost and hope that we’ll have more of those to come in the days ahead.

Making Progress and Speculating on the Future

It’s been a little over a week since Kate’s stroke. Although it was a mild one, it has made its presence felt. Clearly, she is making progress. The first four days she was asleep. Her doctor had told us to expect that. On Monday, she was awake almost all day with a few short rests in between. Between Friday and Monday, she was more alert and made a little effort to speak.  Tuesday was more of a day of rest.

She has continued to eat and drink well, and she hasn’t lost her smile. Music also retains its appeal. She often moves her body (feet, hands, or head) to the rhythm. and attempts to mouth the words.

I contacted her doctor on Monday and asked when we might get her out of bed. He said to use our best judgment. He also indicated that getting her out of bed would be good for her. The next day we got her into her recliner for the afternoon. That went very well. She rested most of that time, but it was good to see her dressed and out of bed.

Yesterday was an especially good day. Our regular caregiver had a doctor’s appointment, so we had two different people come in, each for two hours. The first was very experienced, and we were able to get Kate up and dressed and in her recliner. The second one was a person who had been with us two times before. She has a special touch with her clients. She immediately pulled up a chair beside Kate’s recliner and started talking to her. I made a trip to the grocery store. When I returned, I was surprised to see she was still sitting by her, and they were actually having a conversation. Most of what Kate said was unintelligible, but the caregiver was able to converse anyway. It reminded me of the way she and I converse.

When our regular caregiver arrived to take her place, we decided it was time to try taking Kate to dinner in the dining room. We agreed that if we encountered any problem along the way, we would come back to the apartment. It turned out that wasn’t necessary. We had brief conversations with other residents as we entered and left the dining room as well as at our table during the meal. Everyone spoke to Kate, and she responded remarkably well.

Despite how well she is doing, I can’t help wondering about the long-term consequences. The stroke affected her right arm and leg. She also has a slight droop on the right side of her mouth that has an effect on her speech. Initially, her right arm was totally limp. She can now move her arm a little although she strongly favors her left. I am hopeful that she will continue to improve.

I am less optimistic about her speech. She was already experiencing aphasia as a result of her Alzheimer’s. The stroke itself has had its own impact. Although she sometimes says a few words very clearly, her speech is more garbled now. She also speaks far less than she did before the stroke.

What is most important to me is that the Kate I’ve always known shines through it all. On Saturday, I was sitting up in bed beside her while we played music videos on YouTube. She was moving her head to the music of an Irish instrumental group. I leaned over and told her I loved her. Then I said, “You’re the greatest. You’re my Kate.” She smiled and said, “Yes, I am.” After five days with little attempt at speaking, those were three beautiful words to me.

About seven o’clock on Valentine’s morning, I noticed her eyes were open. I walked to her bedside and took her hand. She pulled my hand to her lips and kissed it. Yesterday afternoon, I told her I loved her and said, “I’d like to give you a kiss.” She puckered up, and I did.

Regardless of what happens in the days ahead, I think, “Our Love is Here to Stay.”

Settling in Part 3: My Adjustment

Eleven weeks ago, Kate and I moved into our new home (apartment) in a local life plan retirement community often called a continuing care retirement community. In two previous posts, I described the changes in our in-home care and Kate’s adjustment to the move. Today’s post deals with how I am doing. With one exception, I can say that my report is just as positive as the others. Let’s deal with the positive first.

Shortly after moving in, I went through a period of disorientation. All of my routines were disrupted. It was a little like starting from scratch – new grocery store, new pharmacy, new part of town, new apartment and a bit of confusion over where various things had been put by the movers, as well as a temporary cessation in my daily exercise. Within 2-3 weeks, I was recovering from that and am now quite comfortable.

At the same time, I found our new environment very much to my liking. After months of preparation for the move, it was a relief to be settled into a new home. That likely would have happened no matter where we had moved, but there are several aspects of this community that I find especially appealing.

We’re in a new building that opened the end of February, and I like our particular apartment. I had had a little concern about living in a place one-third the size of our previous home; however, I had always liked the floor plan. Everything is very efficiently arranged. We have two bedrooms on either side of a large open area containing the kitchen, living area, and dining area. We also have a 16-foot balcony overlooking a courtyard below. It felt right the very afternoon we moved in. Now that we have been here a while, I find that it suits our life style quite well. I haven’t missed the space we left behind at all.

Apart from the apartment itself, there are other things that are more important to me. Some of them are things people generally expect from from life plan communities. They simplify life. I am relieved of almost all the personal responsibilities required in our previous homes. Not having to hire help with cleaning, repairs, or the wide arrange of maintenance issues was never a great chore, but it is nice to leave that behind.

Among the big benefits is availability of daily meals. I still fix my morning breakfast and like it that way. I value my morning routine that had been somewhat disrupted right after the move. For a short time, I continued to fix a simple lunch but gravitated to going downstairs to the salad, soup, and sandwich bar. I eat there every day but Wednesday and Sunday when I go to restaurants I have frequented for lunch for more than five years.

Kate and I do not eat lunch together. That’s because she doesn’t usually wake up before noon and isn’t ready to eat until 1:00 or shortly thereafter. At night, I bring in meals from the dining room. Kate and I eat together in the apartment. I like that.

Speaking of meals, living here has also been accompanied by a change in my eating habits. I eat more soup and vegetables than I ever have before. That relates directly to the way they are prepared. Most of the soups are quite good, and the vegetables are nicely-cooked. I’m especially fond of their broccoli and asparagus. For years, I have enjoyed salads, and the salad bar downstairs offers a wide variety of ingredients to make salads to suit my particular preferences.

Although our balcony doesn’t provide as beautiful a view as we had at our home, we have taken greater advantage of it than the patio we had. We spend some time there with the caregiver almost every day. Now that it is hotter, we are eating early. Then we go to the balcony until time for the caregiver to leave. It has provided more relaxing moments than I expected. By the way, I am writing this post on the balcony enjoying a gentle breeze (from our ceiling fan) and a light rain.

Our new routine also involves other relaxing moments as well. At the top of the list would be taking Kate around the interior of the buildings. It gives her a change as well as an opportunity to meet other residents and staff. Several times, we have gone to the ice cream shop. The ice cream is good, and we have spent as long as 45 minutes relaxing while encountering other residents.

That leads me to say what I believe is the most important benefit of living here. It provides significant opportunities for social activity and interaction. As my closest friends know, I’m a bit gregarious. Despite Kate’s Alzheimer’s and the pandemic’s lessening my social contact, I never felt isolated as do so many people in my situation. A lot of that was because we ate out for all lunches and dinners for at least eight years. I also remained in contact with people via email and telephone and continued to serve on committees at church and several community organizations.

The move, however, has substantially increased my daily social contacts, and I am thriving. It’s hard to walk out of the apartment at any time of day without bumping into someone and engaging in a brief conversation. One of our caregivers has joked with me about how long it takes me to run down to the dining room to pick up our dinner because I get into multiple conversations along the way.

So, what is the one exception to how positive my experience has been? Here it is, and it has nothing to do with the move itself. Several weeks before the move, I began to experience a rash on my back and other parts of my body. My dermatologist took a biopsy and found that I have eczema. She gave me a prescription for prednisone and a cream that helped but did not eliminate the problem. She recommended changing the detergent used to wash our clothes, the soap I used for bathing, and hand lotion. In addition, I started using an over-the-counter cream to replace the prescription that had expired.

The rash subsided somewhat but flared up in the past week. For the first time, it hit my face around my eyes as well as spots on the right and left sides of my neck. The itching isn’t pleasant, but I have been more annoyed by the places around my eyes. I feel awkward when I leave the apartment. I find myself explaining the problem everywhere I go. The good news is that the dermatologist gave me a new prescription that seems to be working. We have also scheduled an allergy test in an effort to determine what is causing the problem.

Other than that, life is good, and I am adjusting quite well.

Addendum to Previous Post: Another Breakthrough

Right after writing my previous post, we added another success to those I mentioned. For the first time since Thanksgiving (seven months), we gave Kate a shower.  Prior to that we had only given her bed baths.

The amazing thing is how well it went. It had been a day of ups and downs. She was awake early and not talkative but relaxed and in a good mood. I spent a good bit of time with her prior to the caregiver’s arrival. The first thing Adrienne does is to ask how Kate is doing. I told her it looked like a good day, but she was a bit slow in getting going.

I left for lunch. When I returned, Kate was in her recliner, but she wasn’t happy. I made an unsuccessful attempt to change that. I decided to do what Adrienne had already done, not bother her for a while. An hour and a half before dinner, I suggested we go out to the balcony. Kate said she didn’t want to go, but I reminded her how much we liked it. Then Adrienne and I took her. She was sullen the entire time.

On Monday, Adrienne and I had talked about the possibility of showering her on Tuesday. When the time came, her mood led me to table those plans. We decided to wait until she was in a better humor. That happened more quickly than either of us could have imagined.

Everything changed at dinner. She almost always enjoys her meals, but she was especially enthusiastic this time. She was on a high. I talked with Adrienne about going ahead with the shower, but I indicated I didn’t want to push her. She agreed.

I walked over to Kate and very calmly told her I thought that she might like to get a shower before getting ready for bed. I was prepared to say a lot more to encourage her, but she responded favorably. Adrienne and I went into action quickly but without rushing her. I changed into my gym shorts and warmed up the water for her. We transferred her from her wheelchair to her shower chair (that had never been used), and into the shower we went.

It went swimmingly well. Kate didn’t make even the slightest protest. At one point, she even lifted her arms, looked at Adrienne and said, “Over here” to get her to spray the water. Everything went well for all three of us. Adrienne and I are eager to try it again. We’re on a roll but not naïve about how quickly moods can change. This particular experience illustrates that beautifully.

Settling In Part 2: Kate’s Adjustment

In “Settling In Part 1,” I outlined the positive changes we’ve experienced with in-home care since our move. During the same time, there have been similar improvements in Kate’s behavior. She is much less frightened than she was when she came home from the hospital at Thanksgiving. That makes the experience of tending to her needs less disruptive for her. As a result, it is easier for her caregivers and me.

The biggest problems we’ve faced involve some of the basic things we have to do to care for her. That is mostly the process of changing her as well as getting her in and out of bed, her wheelchair and her recliner. As she has become more familiar with the process she has become less frightened and more cooperative. It’s not something she likes at all, but she is more accepting.

From the beginning, I’ve played an active role in these activities because her first response is to fight back with her hands. As one might expect, she has been particularly bothered by being changed. My part is mostly to calm her. In the gentlest voice I can muster, I tell her what is about to happen and that we need to help the caregiver by relaxing. I ask her to hold my hands tightly. That was tough for her at first, but in the past couple of weeks she has gotten much better. She seems to find security in holding my hands.

There’s a tendency to think that someone in the last stage of Alzheimer’s can’t learn at all, but we have seen signs that she can. This does not occur through her rational, but her intuitive ability. It’s not because she understands and remembers what we have told her to do. It is simply through experience that she is beginning to learn. One example involves our use of a lift to get her in and out of her bed as well as her wheelchair and recliner. She is learning where she needs to put her hands. That’s not only beneficial from a safety standpoint, but it keeps her from grabbing and holding on to something (like the arms of her wheelchair or recliner) that makes lifting more difficult for us.

She surprised me over the weekend when I took her on a tour around the other buildings. She told me to “watch out” as we approached an area where the tile floor ended and a carpeted section began. She has learned from experience that changes like these mean “bumps,” and she doesn’t like even small ones.

We’ve also been able to make important changes in her daily routine. We get her up daily, if not for the entire afternoon, for dinner. We relax on the balcony almost every day. Recently, she has been out of the apartment five or six times. Each time I have introduced her to other residents. Over the weekend, I took her out twice without the caregiver. One of those days, we stopped by our coffee shop for ice cream. I don’t know the full benefit of these outings and encounters, but I believe it’s good for her. It gives her a better feeling for everyday life, and I plan to keep it up.

I’ve also been pleased with recent efforts to read to her and to look through her photo books. Both of these have been of less interest to her in the past few months. I’ve had success with The Velveteen Rabbit in the past two weeks as well as at least one look through the photo book I gave her for our recent anniversary.

She still wakes up between 11:00 and noon, but she is occasionally wide awake much earlier. That allows me to get her morning meds earlier as well as getting her something to drink and a snack before the caregiver arrives. This is not a frequent occurrence, but it happens more often than in the past. The bonus is that several times I have gotten in bed beside her and read to her, looked at a photo book with her, or just worked on my laptop while she rested. It has been good to have that extra time with her without the caregiver’s being around.

We have two other goals: to get her hair done in the salon downstairs and to give her a shower. We may try the shower this week.

I should add that I attribute much of Kate’s improvement to the consistency we have with out in-home care. I am especially grateful to Adrienne, the caregiver who is with us 10 out of every 14 days. She has played a major role in the establishment of a regular routine.

There are two things that I don’t expect to improve. One is her Alzheimer’s. The other is her mobility. I don’t believe she will walk again although her recent progress has encouraged me to think about attempting it. That’s something I won’t pursue without the help of a physical therapist.

All in all, Kate seems more relaxed and happy. Her quality of life has gotten much better, and that means it has for me as well. We’re making progress.

Accepting Each Day As It Comes

“It’s a day to celebrate although I don’t know what lies ahead.” That’s a quote from my previous post in which I talked about our 58th anniversary and that Kate had given me the perfect gift the day before. As it turned out, the actual anniversary wasn’t exactly the way I would have liked although it ended well.

Unlike the day before, she slept late and wasn’t in a particularly good mood when she awoke. I decided not to wait until later to give her the anniversary card and photo book I had prepared. She is almost always more cheerful in the afternoon.

In my eagerness, I didn’t wait long enough. When I told her it was our anniversary and read her card, she didn’t show any emotion at all. It seemed like she knew I wanted her to be excited, and she was going to show me I couldn’t do it. I gave her the photo book with 95 pages of pictures of people and places that had been special to us the past 58 years. It was clear after showing her the cover and first couple of photos that I was facing a losing battle. I made a wise decision to try again later.

The opportunity came as we ate dinner. She enjoyed her food, and she became more cheerful. When she finished her ice cream, the caregiver went to the bedroom to get things ready for the night. I picked up the photo book and showed it to her. She took to it right away. It was too much to go through all of it, but she liked what she saw. She was cheerful and loving for the rest of the night.

Yesterday was a very good day. For the third time since we moved six weeks ago, the caregiver and I took her out of the apartment. For the second time, we walked through the park across from our building. We followed that by relaxing on our balcony until time for dinner. She enjoyed the day.

Of course, I would have liked the day of our anniversary to have been like the day before and the day after, but I had little or no control over that. By this time, however, I’ve learned the value of accepting each day as it comes. That doesn’t mean I simply give up and let it go. I always try to make things better. Sometimes I succeed; sometimes I don’t. I try not to push her. That only makes things worse. If I just back away for a little while, she often comes around naturally. One thing is sure. I know that the bumps in the road are going to occur, and I am encouraged with the knowledge that we’re also going to have more “Happy Moments.” I wonder what’s in store for today.

Reflections on Leaving Our Home

Two years ago this month, I took a big step and made a down payment on an apartment in a local continuing care retirement community (CCRC). I was motivated to do this for at least two reasons. First of all, Kate and I cared for our parents for twenty-four years. We didn’t mind that. We would do it all over again if faced with the same situations; however, we wanted to make sure our children’s responsibilities for our care would be minimal. I don’t recall that we talked about a specific way to do that, but I felt that we needed to plan for an easy transition to the last chapter of our lives. Neither of us wanted to put them in the often awkward position of letting us know that it was time to give up driving or to move out of our home. Living in some type of senior living facility was always an option. I didn’t establish a specific time frame for a move or assume that we would have to move at all. I approached life a step at a time and was prepared to make changes as I thought needed before our children would feel the need to step in.

That leads to the second reason for my decision. Kate was approaching the last stage of Alzheimer’s. I was handling things with minimal help, four hours of paid help three afternoons a week. She had become totally dependent on me, and I began to wonder what would happen to her if something happened to me. That was the catalyst that led me to explore a CCRC. We have several local options, and, in the past, I had visited at least four of them. I’ve known quite a few people who lived or had lived in the one I chose. It was one of two that were located in places I felt would be convenient for us. I knew the marketing director and that they were about to begin construction on a new building for independent living. I made an appointment with him. Two weeks later, I gave him our down payment.

I haven’t waivered in my decision since that time. As time passed, Kate declined, and the pandemic hit us. At least one of my good friends has asked several times if I were eager to make the move. The answer was and still is that I am not eager, but I believe it’s the right decision. It provides access to all the options we might need in the future. That includes assisted living, memory care, skilled nursing, and rehab. In addition, the doctor who established the geriatric practice with which Kate’s doctor is affiliated has opened a practice on the grounds in the building next door to ours. Yes, he makes house calls as well. I haven’t made the change for Kate just yet, but her doctor and I have talked about it. She actually suggested that as a good possibility. I intend to explore it further once we move in.

Having made that decision two years ago, I’ve learned a couple of things. One is that two years is not a long time. It passed quickly. Had I been eager to move, I’m sure I would have thought the day would never come. That doesn’t mean that I have any regrets about my original decision. I don’t. I also believe I made it at the right time. I didn’t want to move when it might have been disturbing for Kate. Her decline during that time has been significant. I don’t expect her adjustment will be difficult although I feel equally sure she will notice some difference in her environment.

The second thing I’ve learned is that a move like this is stressful. I’ve had an abundance of help. In addition to Kate’s caregivers and the woman who cleans our house, I engaged three other people to assist me with different aspects of the move. One is the decorator Kate has worked with about thirty years. She helped me decide on the furnishings to take with us. I know someone else whose business is assisting seniors who want to downsize. She is handling all aspects of the physical move itself. The third is a woman who has cared for the plants in our yard, on the patio, and front porch. She has also taken care of our holiday decorations. She and I have been worked together 6-8 months getting rid of things in our closets, cabinets, and attic.

Despite this assistance, I have found it impossible to turn over everything to them. There are just many decisions I need to make myself. In fact, I view this move, possibly our last one, as a continual process of decisions regarding what is important in life. Numerous times, I have looked at boxes of “things” we have accumulated over the years and thought a person in the ministry could preach a year’s worth of sermons about them. Most of them are of little value to me now. I’ve discovered they are also of little value to our children or anyone else.

That said, I’ve found that what matters most are intangibles. Uppermost in my mind are the memories that I will take with me. Recently, our weather has been perfect for getting outside. Kate, her caregiver, and I have spent time as much time as we can on our patio enjoying the spring flowers and watching the new growth of leaves on the forest of trees behind our house. It’s been a therapeutic break from the preparations of moving and brought back memories of the good times we’ve had here. I especially remember special celebrations like my parents’ 65th and 70th anniversaries, my dad’s 100th birthday and those leading up to it starting with his 90th. There were also grandchildren’s visits and the time spent in and around the pool. I would also include the almost 5 ½ years Kate’s mother spent with us with 24/7 care provided by 6-7 caregivers who became part of our family. But most of all, I think of the good times with Kate before and after her diagnosis, and it is all but certain we will have more of them during the next week that we are here. I will leave with a sense of satisfaction and gratitude for these memories and many more.

The other day I thought about the move my parents made from their home to live close to us. My dad was the same age I am now, nearing 81. They had lived in South Florida much longer than we have lived here. The move was stressful for him. My mom was in the early stage of dementia. He did his best to see that she got acquainted with people. One of the first things he did was join a local senior center. He became active in Kiwanis and a seniors writing group. He loved his computer and kept up an active email correspondence with friends from the past and many new ones. He adapted very well and lived to be 100. I’m optimistic that I’ll do the same.