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Update on In-Home Care for Kate

Six years ago this coming September, I engaged in-home care for Kate. At that point, all I needed was someone to be with her while I went to the Y and ran errands. It was prior to my feeling a real need for help, but I was becoming uneasy about leaving her alone. At the time, I referred to the caregivers as sitters. All they had to do was spend time with Kate. They didn’t have to dress her, prepare meals for her, or take her places.

Looking back, I view that as the “honeymoon stage” of our in-home care. After a month or so, we settled into a routine with two different people. One came on Mondays for four hours. The other came on Wednesdays and Fridays for four hours. This went well for three years although we made a few changes in the person coming to the house on Mondays. Fortunately, we had the same person for Wednesdays and Fridays for more than three years.

Then came Covid in November 2020. Kate’s Alzheimer’s had been progressing more rapidly in the previous two years. She was in the early stages of aphasia and was developing mobility problems. Her hospitalization for eight days for Covid was traumatic for her. Since then, she has required total care.

The honeymoon with in-home care was over. Finding caregivers was also more challenging because of the pandemic. Apart from the pandemic, fewer caregivers are willing to accept people who require total care. Thus finding and keeping caregivers has been a problem since then.

It is especially difficult to find someone to work eight hours a day five days a week, but we found one person who was with us until May 2022. We were able to replace her with someone who was with us until this week when she decided to leave because of her back problems. That was a low blow to me. She was the most caring and compassionate caregiver we have had. She and Kate got along well, something I consider of paramount importance.

So, we are going through an adjustment. We have a new person who comes for eight hours a day on Monday, Tuesday, and Wednesday and another who comes on Thursday and Friday. We are now in our second week with them, and I am encouraged that they will work out. They are both good but have complementary skills. The MTW person has CNA skills that are among the best of anyone we’ve had previously and she has a caring personality. She does have a minor back problem, so we have elevated the bed another six inches, and I am playing a greater role in the heavy lifting. She also appears to be someone who is easy to work with. She has lots of ideas about how care should be provided, but she is also sensitive to the routine we have established.

Our Thursday/Friday person is very cheerful with a very warm and caring personality. She and Kate connected right away. She even stopped by to chat with Kate while we were having ice cream Saturday afternoon with one of our regular weekend caregivers.

Despite my optimism, having new people for five days a week does mean another adjustment for me. That will mean more work for me to familiarize them with our needs and priorities, but we should soon establish a new routine.

Although I wish I could count on having a regular group of caregivers for a longer period of time, we are fortunate to have had three caregivers who were with us for more than a year. At the moment, only one of them is still with us. She has been coming every other weekend for a year and seven months.

Change always requires adjustments, but it often comes with benefits. That is what I am hoping for with this one. Right now, I am optimistic that Kate’s care will match or exceed what we had before.

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Reflections on Living with Alzheimer’s: Part 2

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

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

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

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

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

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

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

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

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

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

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

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A Brief Update

Once again, I find that I am behind on another blog post. On top of my usual excuses is that I’ve had computer problems that were finally solved yesterday. During the past two weeks, my computer wouldn’t connect to our Wi-Fi network or any other one. In the meantime, I’ve been occupied with Kate (many good moments) and other personal issues like an infection in one of my toes and pain on the right side of my other foot. Those involved several doctor’s visits that have solved most of the problems.

The best news is that Kate’s improvement has continued over the past few months. That has given us more quality time together which has boosted my spirits greatly. I’ve been particularly pleased that our evenings are once again very special times. Our love for each other is more consistently evident now than in quite a long time.

I continue to be pleased with our new primary caregiver (8 hours daily from Monday through Friday). I feel less stressed now than I did a few months ago, and my blood pressure is staying at normal levels. Prior to replacing the previous primary caregiver, my blood pressure was bouncing periodically to higher levels than those to which I had been accustomed.

I feel the need to stress again that I don’t mean that her Alzheimer’s is any better than before, only that she is more comfortable and at ease, than she had been since her hospitalization with Covid almost two years ago in November 2020. That, our move a few months later, and then a stroke were all significant events that brought about dramatic changes in our lives. It hasn’t been easy. Some of those changes have been permanent, for example, Kate now requires total care with all her ADLs (activities of daily living). Our world is much smaller now; however, we continued to enjoy life and each other. And I am grateful.

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Kate is Improving. What’s Going On?

From the accounts of other caregivers and my personal experience with Kate, I am well aware that people with Alzheimer’s can change from day to day and even from moment to moment, but something different has happened with Kate in the past several months.

In a number of ways, she is better than she was a year ago. Her improvement is something I didn’t expect. She doesn’t sleep as much. She’s more cooperative when we perform our daily responsibilities (dressing and undressing her as well as transferring her in a lift from her bed to her recliner or wheelchair and back again). The other day she laughed as we picked her up from her bed. It was almost like she was enjoying a ride in an amusement park. She has even displayed some learning as we go through the various steps – for example, where to put her hands. She is also talking a little more even though most of what she says is unintelligible. She is more likely to respond to staff and residents when they speak to her. Her response is typically a smile or a facial expression, but sometimes she speaks in short phrases that are quite clear.

In addition, she conveys by her facial expressions and audible reactions that she clearly understands what we saying. The other day I told the caregiver about recent research that involved bringing dead pigs to “life.” Very quickly, she said, “Oh, God,” something I had never heard her say before.

Her stroke in February had an immediate impact on our evenings together. For weeks, she went to sleep shortly after the caregiver left. That was a low blow for me because that had been the best time of the day for us. It was a time when we had no further obligations and could simply focus on being together.

Now, she is sometimes awake one to three hours after the caregiver leaves. Our evenings are once again among the best parts of our day. I say “among” because she has good moments at other times of the day as well, particularly during the afternoon. She has never been a morning person, and she continues to sleep or rest until 11:00 when the caregiver and I get her up for the day. She rarely says a word until after lunch.

I’ve wondered why these changes have happened and see several possible explanations. The first seems obvious. She is simply recovering from her stroke. She was mostly comatose the first few days following the stroke. Since then, she has gradually reverted to a pattern of sleep that was typical before then.

She hasn’t made a complete recovery, however. Her aphasia hasn’t improved significantly nor has the damage to her right leg that she is unable to straighten. It is always bent at various degrees. In other ways, the effects of the stroke seem to be a thing of the past.

Apart from her recovery from the stroke, I believe there are two other things that may account for her recent improvement. Two major events disrupted our lives during the past year and a half. First, we both had Covid just before Thanksgiving in 2020. Kate was hospitalized for eight days. Five months later, we moved to a continuing care (life plan) retirement community. Although Kate has never shown any signs that she was aware of either of these; our daily lives changed significantly as a result of both. Now, we’ve established a new routine.

We get her up shortly after the caregiver arrives at 11:00. She eats her lunch between 11:45 and 12:30. During that time, I go out for lunch and run errands. I usually return before 3:00. That’s when we prepare for our afternoon visit to the café where Kate gets ice cream. We are there almost an hour before moving to the dining room for dinner.

Our afternoon ice cream and our dinner in the dining room are highlights of our day. They are not simply opportunities to eat. They are times when we connect with other residents and staff. That’s important for both of us. Kate receives special attention, something that many people at this stage of dementia don’t experience. When people approach us, they invariably speak to her first. They often comment about her hair and what she is wearing. When she smiles (something she does more often now), they respond with pleasure in much the same way that I do. I love seeing that and have to believe that Kate does as well.

There is one other thing that may account for these changes. We changed our primary caregiver in June. The new person is a very caring person who is with us eight hours a day Monday through Friday. Kate has developed a feeling for the new person that she hasn’t had for anyone else.

When you combine the regular attention of the caregiver who is with her eight hours a day, the personal contact she gets with other residents and staff, and the time I spend with her, she receives a lot more attention than she did before. I believe that establishing a new routine and a new caregiver plays an important role in why she seems more at ease now.

I would like to believe that her Alzheimer’s has improved, but, in that respect, she is much the same. Her memory and other rational abilities are no better than they were before; however, her intuitive ability to experience the world around her is working quite well. She doesn’t know the names of the music she hears, but she enjoys it; she doesn’t know the names of the foods she eats, but she enjoys her meals; she laughs at things she thinks are funny, and she appreciates being recognized by people around her. Our current routine provides all of these, and Kate is able to experience them intuitively even if she can’t tell you where she is, the names of the people she is around, or do many of the things she used to do. All of these things make me believe she is more at ease now because her daily life provides her with the kind of experiences she can enjoy through her intuitive ability.

Addendum

I had written this post before my brother and his wife as well as our nephew and his wife arrived for a brief visit yesterday afternoon. Prior to their arrival, I wondered if they would be able to see the Kate that I described in this post. I can’t tell you how elated I was that they caught her on a very special day. She smiled a lot and also responded to their comments and questions. We could clearly understand some of the things she said. She even said goodbye to them when they left. The night before, my brother’s wife asked if I thought Kate could understand what people say to her. I told her I had seen plenty of evidence that she can. Yesterday, she got a first-hand observation of that. It was a memorable experience for all of us.

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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.

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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.

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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.

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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.

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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.”

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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.