Not Everything Goes As Well As I would Like

My previous posts about our caregiver situation are signs that not everything goes the way I would like it. The fact that we have had 39 different caregivers since our previous Monday through Friday caregiver had to resign for health reasons is an indicator of a serious problem. Fortunately, that continues to get better. We now have someone who is with us each weekday except Tuesday. We are still looking for someone for that day.

Kate continues to have “Happy Moments” despite her having to adapt to the different ways that each new person handles the various aspects of caregiving. One of those occurred recently when I arrived home after lunch. She was glad to see me. I spent quite a while with her talking about her family. Music was playing in the background, and I started singing or humming to her. She was enjoying herself so much that I took a dozen or more videos of her. Each one is a treasure that I have enjoyed sharing with family and friends.

Later in the day and the next morning, I was reminded that more unpleasant things can also happen. Shortly after we ordered our dinner that evening, she became very agitated. At first, I thought she was responding to a pain in her right knee or leg. That is the one that was affected by the stroke she had almost two years ago. She hasn’t been able to straighten that leg since then. The caregivers and I are most sensitive to that. It makes it hard to dress and undress her as well as getting her into and out of her bed and into a chair. The problem for Kate is that she experiences moments of pain. We always know about it because she lets out a loud scream or yell. It is usually over as quickly as it comes, but this time she remained agitated, so we asked the server to prepare our meals for carryout and went back to our apartment. It wasn’t long before she was calm again, but this was unusual. It was the first time I felt the need to leave any public place because of a problem like this.

The next morning she had a panic attack. This is not the first in recent months and followed the pattern of at least two others. She seemed to be frightened. That fright was expressed in her facial expressions as well as a vocal response I couldn’t understand. She was hot, and her skin was clammy. I did what I had done before. I turned on some music that I know she likes. In this case, it was “Edelweiss. I got in bed beside her and sang along with the music. I played it several times in succession and then drifted to “True Love.” In a short time, she was calm again.

Considering everything, we have lived joyfully since her diagnosis in 2011, but we do have our “ups and downs”.

Making a Good Recovery

Most of my posts reflect a positive attitude about “Living with Alzheimer’s.” My self-perception is that I am an even-tempered person who is upbeat and calm even during life’s ups and downs; however, I have recently focused on the unusually high degree of stress I’ve experienced since the loss of Kate’s primary caregiver on November 9. Four weeks later, we had 29 different caregivers. It’s now been eight weeks, and the total number of different caregivers is 36. That is an average of almost five new caregivers a week. In addition, there have only been 11 out of 49 days when we had just one caregiver for eight hours. One weekend, we had 4 caregivers on Saturday and another 3 on Sunday. As a result, I have not been as upbeat as I usually am.

The good news is that I am making a good recovery. Part of the reason is that the number of new caregivers in a given week has declined significantly. Even more important is what I reported in my last post. One of the new caregivers has chosen to help me by volunteering to come three days a week (Monday, Wednesday, and Friday) during January and February. As I indicated in that post, that removed a major source of frustration, but there is more.

Her first day was January 1. Several weeks had passed since she had been with us, and I had forgotten how much I liked her. Yesterday was her second day, and I feel even better. She seems to be better than other caregivers we have had over the past three years. She has the basic CNA (certified nursing assistant) skills and a caring and compassionate personality that I value. She is also pleasant to have around.

To top it off, Tuesday we had another new caregiver (number 36 since November 9) who was excellent, and she will be back tomorrow. I don’t know about her long-term schedule, but it would be wonderful if she could come on Tuesday and Thursday when our Monday, Wednesday, Friday person is not available. It may not be quite as good as having one person five days a week, but it comes very close. Everything may turn out to be even better than it was before the loss of our previous person. I am hopeful.

Something New, and It’s Good

For the past two and a half years, Kate and I have followed a rigid routine. The caregiver arrives at 11:00 each morning. The first item on the agenda is to get Kate dressed and out of bed. Until recently, we put her in a recliner in a sitting position where the caregiver served her lunch. She remained in the recliner until we went out for ice cream shortly after 3:30.

While I was away, Kate often felt sleepy, and the caregivers got in the habit of setting the recliner in a reclining rather than a sitting position. I began to feel that she was spending too much of her day on her back and decided to move Kate from her bed into her wheelchair instead of the recliner. Originally, I was concerned that being in the wheelchair all day might be uncomfortable for Kate, but she accepted the change without a problem.

After we changed our primary caregiver 3-4 months ago, the new person asked if she could take Kate out of the apartment. I told her that would be fine. It turned out much better than I thought. She has responded well to the additional attention she receives. I meet them for ice cream after returning from lunch. I frequently find them talking with other residents and staff in much the same way as when I am with her. Kate herself doesn’t often say very much, but she often smiles. That lets all of us know that she is happy.

This has now become a regular part of our daily routine. I’ve always felt that even the best of our caregivers don’t give her as much attention as I would like. The new routine solves that problem. It works for everyone. Kate and the caregiver like getting out of the apartment and mingling with other residents and staff. I, too, like it because it provides Kate more stimulation than when she and the caregiver are alone in our apartment. It’s a “Win-Win-Win” situation.

This is another reminder of the importance of intuitive thought or abilities. This change did not stop the progression of her Alzheimer’s. Her rational thought or ability hasn’t improved. Her memory of people, places, and things is gone. Her aphasia means that she says very few things that we can understand.

Nevertheless, all is not lost. Her intuitive thought and ability remain. As a result, we continue to enjoy life and each other. What more could I ask at Late Stage Alzheimer’s?

Unanticipated Moments: Happy and Not-So-Happy

I couldn’t get along as well as I do if I didn’t have eight hours of care for Kate seven days a week; however, in-home care also has its stressful moments. One of those occurred Saturday when I received a call from the agency that provides our caregivers. They were letting me know that our regular weekend caregiver was on vacation and that they were having difficulty finding someone to fill in.

As it turned out, they were able to find a “floater” (a staff member who works on the grounds of our community and moves from place to place wherever needed) to come in for an hour to help me get Kate dressed and up for the day. They also had someone who would help feed Kate at dinner as well as help with getting her to bed.

Every Saturday, I meet three other guys for coffee off the grounds. I was disappointed about having to cancel, but it gave me more time to be with Kate. I decided Kate and I would make the most of the day, and that turned out to be far better than I could have imagined.

On a typical day, Kate gets breakfast right after we get her dressed and out of bed even though it is lunchtime. While she is eating, I go out for lunch. This gave us an opportunity that we had never had before – having lunch together in the dining room downstairs.

The lunch could not have gone better. We sat at the table where we eat for dinner each night so it is a familar spot for Kate. The dining room is always the quietest venue on the grounds, and Saturday lunch is not busy at all. I don’t know if that matters to Kate, but it does to me.

I fed Kate as I ate my own meal. Kate was in a cheerful mood, and the staff gave us a lot of attention since they weren’t as busy as usual. It was a very special time for both of us, and we celebrated the occasion by splitting one of my favorite desserts, a strawberry cheesecake. We spent almost two hours there.

It was a beautiful afternoon with temperatures in the low-80s, a break from the mid-90s we had had recently. It seemed like a good afternoon to go outside. We sat for another hour under the portico at the main entrance to our community. It was shady with a gentle breeze, and I used my phone to play music that Kate loves. She was fully engaged the entire time. She never stopped smiling. It was a very special moment.

We finished the day with dinner in the dining room where another caregiver met us. After dinner, the three of us returned to our apartment where we got Kate ready for bed.

Kate was tired and went to sleep right after the caregiver left, but we had had a very special day together. That’s one more thing for which I can feel grateful.

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.

“It’s a Wonderful Life”

I often run into people who ask how Kate is doing. Frequently, that is followed by asking me how I’m doing. I’m on a high right now. As many other caregivers say about their loved ones, “When Kate is happy, I’m happy,” and she’s been happy much more over the past few months. She’s been unusually happy and talkative for at least three of the past five days.

Not every moment in a day is a “Happy Moment.” That doesn’t mean that the rest of the moments are sad. In fact, she never has a sad day. When she is not happy, she seems intimidated or unsure about how she should act or what she should say. Other times, her emotional expressions are quite neutral.

Her Happy Moments are often related to the people around her and what is going on, but it is common for her to sit quietly and just smile as she looks around the room. It makes me wonder what she sees or what she is thinking that makes her so happy. When I ask, I never get an answer, but it’s good to see her happy.

It’s not just her feeling happy that affects me. It’s also what she says or does when she is happy. She has been talking more with her caregiver. I love observing their conversations. This caregiver is the only one she has responded to in this way during the entire five years we have had in-home care. As noted in earlier posts, I believe one reason for this is Kate’s general adaption to our new home in a retirement community as well as recovering from her stroke; however, I give this particular caregiver equal credit. She has made a difference in both of our lives.

The success she has had with Kate is her personality. She is kind and caring. She’s a bit “low-key” but talkative and gets along well with other residents and staff. She is not intimidating, and that makes it easy for Kate to connect with her.

Although Kate is more cheerful and talkative, there is one general pattern that remains. She is quietest in the morning. She still rarely says anything before lunch. It can be as late as 3:30 in the afternoon when we go for ice cream and sometimes as late as dinner before she is ready for any social engagement. Kate occasionally breaks this pattern and is awake and smiling early in the morning and maintains her good spirits the entire day and evening.

My being upbeat relates to the fact that, recently, she has been cheerful almost every afternoon and evening. The only difference is when the cheerfulness begins.

Our evenings continue to be our best time together. I wouldn’t describe them as “cheerful.” They are simply times when each of us is completely at ease. Once in a while, she is quite talkative. Most of the time, she is not. She is just winding down as she gets ready to go to sleep. It’s the same way for me. It is clearly the most relaxing time of our day, and it’s made even better by sharing this quiet time together – always with music. At this time of the year, it seems appropriate to say, “It’s a Wonderful Life.”

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.

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.

“Focus on the Person, Not the Dementia”

I continue to believe that the most profound information I’ve learned during Kate’s journey with Alzheimer’s came from The Dementia Handbook by Judy Cornish. She emphasizes that “all is not lost with dementia” and points out that while rational thought is lost, people with dementia continue to experience the world through their senses. That enables them to appreciate and enjoy many pleasures of life.

I have made that an essential piece of knowledge in my care for Kate, and it has provided years of joy while living with Alzheimer’s. The quote in the title above comes from one of Cornish’s posts on Twitter. It caught my attention as useful advice, and I’ve discovered numerous ways to apply it. The most typical example is when I return to the apartment after lunch or running errands.

In almost every case, I find Kate sitting quietly in her recliner with her eyes closed while the caregiver sits across from her looking at something on her phone. When I come through the door, I say, “Hello, I’m home!” She often responds with a greeting of her own and gives me a smile as I rest on my knees beside her. I tell her how glad I am to see her. She generally beams. Her whole mood changes in those few moments. It just took focusing on her and conveying how important she is to me.

Here are other examples of how it worked with Kate over the past few days.

Kate’s mornings have always been the most troublesome part of the day. Not all of them are that way, but she usually gets a slow start. That means she doesn’t talk much, and, frequently, she doesn’t want me to talk either. Sunday morning was one of those. She appeared to be bothered by something.

I went through my normal routine. I tell her how glad I am to see her and how special she is to me. On good days, that’s a real ice breaker. On other days, like Sunday, it falls flat.

I didn’t push her. I know from experience that doesn’t work. I got her morning meds and gave her something to drink. That went well. Then I played her Love Changes Everything album and got in bed beside her. I didn’t say anything for a good while and then commented on how much I liked the music. Then I told her I also liked being with her. She smiled, the first affirmation I had received that morning. She was coming around.

That led to a very nice conversation before she drifted off to sleep. She was half asleep when the caregiver arrived at noon. Sometimes that makes it easier to get her dressed and up for the day. This was not one of those times. She protested more than she has in several months.

I can’t be sure, but this may have been related to the fact that the caregiver is new. She began in January, and Kate hasn’t reached a comfort level with her. There are two problems as I see it. First, she doesn’t have as much experience as our other caregivers. Second, she is very quiet. She’s been here fewer than ten times, but she hasn’t said much to me or to Kate except when I have asked direct questions. In addition, she speaks softly and wears a mask, so Kate and I usually have to ask her to repeat herself before we know what she has said.

Given Kate’s mood, I felt that it was better that I stay home instead of going out for lunch. In fact, I remained at home the entire time the caregiver was here. That led to some good things because Kate wasn’t getting any attention from the caregiver and looked bored. I took a seat beside her while she was in her recliner and read The Velveteen Rabbit to her. She perked up right away. I followed that by reading about one of her grandfathers from one of her photobooks.

Things were going well, and I suggested we go for ice cream. While we were out, she had a delusion and hallucinations that disturbed her. Her mood shifted. We went back to the apartment. I spent some time with her while holding her hand and talking to her in a comforting way. I assured her that I would take care of several specific things that troubled her. She became less worried, but she wasn’t as cheerful as she often is at this time of day. I wondered how things would go at dinner. That is usually a good time for her, and it went well except that she wasn’t as talkative as usual.

The day picked up after the caregiver left, and Kate was in bed. She was very relaxed and happy. We talked a little about how comfortable we felt when it was just the two of us. I treasure times like that. She was tired and slept for an hour while I watched one of the NFL playoff games.

Our daughter called as she was waking, and we talked for almost forty-five minutes. Kate often has trouble with phone calls but did very well with this one. It was a beautiful end to a day of ups and downs.

It was a day that reinforced how the personal touch makes a difference in the way Kate feels. It doesn’t prevent delusions, hallucinations, or any of the other typical signs of Alzheimer’s, but it goes a long way toward relieving her anxiety or elevating her mood. That’s exactly what happened that day. Now, let’s look at another example that involves a caregiver.

One of my problems with our in-home care is that Kate doesn’t get this same kind of attention from any of her caregivers. I have accepted the fact that their training focuses heavily on things like bathing patients, dressing them, and using a lift to transfer them from bed to chair and back again along with a host of related things. Everything they do is important, and I don’t have the skill to do the things they do. On the other hand, they tend to focus on their basic skills and neglect treating Kate as a person.

That is why I feel that focusing on her as a person is my primary responsibility. As her husband, I’m in the best position to do this. I love her, and I do my best to express that love in every way that I can.

Having said that, we had an experience with a new caregiver on Monday that offers another example of the importance of having a personal connection with Kate. It also encouraged me to discover a caregiver who has the personality and skill to give Kate the attention she needs.

The new caregiver came to us for the first time one day last week. The agency had alerted me that she had not had much experience. I found that to be true, but she was more personable than most of the others, and I felt comfortable leaving for lunch. Before leaving, I put on a playlist of music I thought Kate would enjoy. I also explained to the caregiver that music had been very important to us. She told me it was important to her as well. She is active in a church choir and has written and recorded a few songs.

When I returned to the apartment, she was sitting in a chair beside Kate and the two of them had been singing along with a Peter, Paul, and Mary album. I can’t tell you how much it meant to me to see Kate singing with her. To the best of my knowledge, that has never happened with another caregiver. It made a big impression on me, and I was delighted when she was back on Monday.

That experience was a good one as well. This time they were in a conversation when I returned from lunch. I spent a little time checking email, and they continued to talk. It was truly remarkable and another great example of the difference it makes when someone is able to “Focus on the person, not the dementia.”

Sometimes What Looks Like a Bad Day (or weekend) Turns Out to Be a Winner.

As I hope my previous posts have conveyed, Kate and I have lived well with Alzheimer’s. Regular readers will also recognize that I do mention some of the challenges we face. Many of my posts describe a combination of our ups and downs. This post is one of those.

A month ago, we lost a caregiver who comes every other weekend from noon until 7:00. The agency sent a new person on Saturday two weeks ago, but she was with us only one day. The agency couldn’t find a replacement for her on Sunday but were able to get a “floater” who works on the grounds to help me get Kate up and ready for the day and another one to help me get her to bed. That meant I didn’t go out to lunch that day. The upside was my being able to take Kate for ice cream by myself. This was only the second time I have done that without a caregiver. It’s nice to have alone time with her.

Between then and this past weekend, the agency found a replacement who was prepared to work with us every other weekend. Her first day was this past Saturday. It got off to a rocky start. Like most of the other caregivers, she has another job, full-time on the night shift of a skilled nursing facility. Not surprisingly, she was tired when she got home that morning and lay down to rest. Unfortunately for us, she didn’t wake up in time to be at our place at noon. She was an hour and a half late.

She’s an experienced CNA (certified nursing assistant) and handled the basic tasks quite well. She only needed a little more experience with Kate’s situation. Like others, she didn’t show much interest in Kate herself, just the basic tasks of changing her, dressing her, etc. I did tell her that one of the things I wanted her to do was to bond with Kate and that I understood that would take some time. I also mentioned that Kate is sensitive to being ignored and sometimes expresses that when I get in a conversation with another person while I am with her. Despite this, I don’t recall her ever trying to communicate with Kate apart from the moments when she told Kate what she was about to do for her, something all CNAs learn as part of their basic skills.

When she left that night, she said she would see me the next day. Early the next morning, I received a call from the agency letting me know that she could not come and that they were looking for a replacement. They weren’t successful, so the person who called came over to help me get Kate up.

Once again, I had to skip going out to lunch. I know that seems like a little thing, but it’s a significant part of my selfcare. I go to the same restaurant Kate and I went to every Sunday for over five years. I know most of the personnel and some of the other customers who are also regulars. It’s a relaxing getaway for me.

On the other hand, it gave me an opportunity to spend more time with Kate. I looked forward to our going out for ice cream together as we had done two weeks before. Unfortunately, Kate experienced a delusion that troubled her and didn’t want to go out. I tried several times, but she refused to leave. Shortly after 3:30, I resorted to my old standby, music, to see if I could change her mood. Recently, I’ve found “Edelweiss” helpful in getting her attention and calming her. I tried once again.

We were seated side-by-side, and I leaned over and started singing. After going through it a couple of times, I played it about six or seven times on my audio system. It worked like a miracle. She was cheerful and had forgotten whatever was worrying her. More importantly, she was cheerful the rest of the day and evening. That’s not even the best part. Since our caregiver didn’t show, I was able to take her to dinner by myself. That was the first time we had been to dinner without a caregiver.  Kate was talkative. We actually engaged in conversation that had some of the elements of a normal one. She seemed to process my questions and asked me questions as well. Anyone watching from a distance would have thought we were just another married couple having a pleasant dinner and conversation.

Of course, her aphasia prevented my understanding everything she said. I am also sure that anyone who might have overheard us, would have wondered if I had any idea what Kate was talking about. For me, it was one of the most enjoyable “Happy Moments” we’ve had in a long time. The last time we had eaten together outside the apartment or our home was before Thanksgiving two years ago. So, what looked like, and could have been, a bad weekend turned out to be something special. It was an early Christmas present.