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Treats for the Caregiver

Those of you who are regular followers of this blog know well the role that eating out has played in our lives. When sheltering began in March, that became a thing of the past. In late May, restaurants reopened with capacity limited to 50% occupancy and often with reduced serving hours. Kate and I began to eat out again, two or three nights a week and lunch on Sunday. That was still a far cry from eating out for lunch and dinner seven days of the week, but it was a significant relief from being completely homebound.

For us, the primary benefit of this habit was keeping us socially active, something that is often a problem for people “Living with Alzheimer’s.” We had developed quite a social network that went beyond the friends and acquaintances we encountered. We also developed friendships with servers, owners, and managers. They have been priceless members of our “team” of supporters.

When Kate and I tested positive for COVID, our routine changed dramatically. Kate, of course, has been in bed most of the time since she returned from the hospital nine weeks ago. Although we have caregivers seven days a week from about noon until 7:00, I’ve only eaten out a few times since then. That was because the caregivers come around lunch and leave around dinner, and those are times when I have been helping with the meals for Kate.

This past Wednesday I did something different. I took a late lunch and went to one of our favorite restaurants. Until March, we had lunch there every Tuesday for more than six years. When I arrived, I asked if the young lady who had served us most often was on duty. She was, but her tables were already full. I told the hostess, who was new and didn’t know me, that would be all right.

After being seated at a table with another server, I discovered that the server I had asked about was taking care of the table next to me. When she saw me, she stopped at my table. We talked briefly, and I explained why we hadn’t been there the past couple of months. To me, that brief exchange was energizing.

Not long after that, the shift manager noticed me and came over to the table to say hello. It wasn’t long before he asked if he could take a seat. That began an almost hour-long conversation. He’s an interesting man who came to the US from Romania. By chance, Kate and I had met his wife and daughter at the restaurant several years ago. His wife is Puerto Rican and a major in the Air Force. I was fascinated with his story of how they met and how they juggle their lives around their different careers as well as the cultural differences between them.

It turned out to be an enriching break from my daily routine as a caregiver. I had recognized before we got the virus that experiences like this were becoming less  important for Kate than for me. The benefit I receive from social contacts is more valuable at this stage of her Alzheimer’s.

I will say, however, that I am not dependent on eating out to satisfy my need for social engagement. I keep up with several college friends and a former professor by phone and email. I have a list of others with whom I often have lengthy phone calls. I have continued my longstanding involvement with our local United Way as well as the foundation for our largest health system, our local symphony orchestra, and Rotary. I am also a member of a men’s coffee club that is a local support group meeting via Zoom twice a month.

I am not as socially involved as I used to be, but interpersonal relationships still play a significant role in keeping me going. Even little things make a difference. Yesterday, I took care of a small responsibility as a member of the only church committee on which I continue to serve. It’s the birthday committee. Each of us calls 8-10 people a month on their birthdays. I’ve done this for 5-6 years and occasionally think about passing it along to someone else, but it’s another pleasant social experience. I think I’ll stick with it.

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Update on Kate’s Recovery from COVID

It’s been nine weeks since Kate and I experienced the first signs of COVID and almost eight weeks since she returned home from the hospital. Kate’s recovery has been gradual, but steady. The biggest breakthrough was getting her out of bed. In my last post, I reported that we had been able to get her up three days in a row. We added another three days to make it a total of six straight days.

Things are going well. Kate’s transfer from her bed to the wheelchair to the toilet and back to the wheelchair is easier than before. With one exception, she has enjoyed spending the day in her recliner in the family room.

We haven’t, however, been able to fully conquer her fear as we make the transfers. She is also frightened when we push her in the wheelchair. We have to move very slowly and watch her hands and arms closely as we go through doorways or past anything that she can grab. She holds tightly to anything within her reach. She also attempts to stop the chair’s movement with her feet. I’ve found it easier if we slowly pull her backwards.

Despite our best efforts, the only rewarding aspect for Kate is relaxing in her recliner. It does avoid changing her in bed, but the transfers are almost as unpleasant for her. That has caused me to think seriously about the cost/benefit ratio of forcing her to get out of bed. It is better for her caregivers and me, but is it a sufficient benefit to her?

On her 80th birthday, I really wanted her up. She wasn’t as cheerful as on other mornings and not eager to get out of bed. With my permission, the physical therapist and the caregiver got her up anyway. As it turned out, she didn’t appear to enjoy the afternoon as much as she has on previous days.

The next day the physical therapist came again. Kate was tired. We put our heads together and decided to be satisfied with the success we had achieved in the preceding days. We let her rest.

Saturday and Sunday we got her up again. It went pretty well Saturday. Sunday was another thing. She really didn’t want to get up, but we went ahead. She was angry with both of us, not just the caregiver. I left for lunch shortly after we had put her in the recliner. She wasn’t speaking to either of us. It is not unusual for her to need as much as an hour or more to recover from changing or just getting her out of bed, but her bitterness seemed more severe this time. Fortunately, she had recovered by the time I returned home, and we had our usual good evening together.

I felt bad about pushing her too hard and would like to avoid creating the same result again. I discussed this with the caregiver who was here yesterday. We decided to give her a break and get her up only if she seemed willing. As she has done on a few other occasions, she expressed an interest at one point but changed her mind when it came down to doing it. We accepted that. She had a good day and was much easier to change in bed. I think it was good for her to have a break. She’s making progress. We’ll get her up another day.

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More Victories

Numerous times during Kate’s recovery I have said that she is making progress “though gradually” or “slower than I would like.” That doesn’t mean that we don’t have moments or days with giant steps forward. I reported on one of those almost two weeks ago when I described the first time we were able to get her out of bed, to the bathroom, and to the table for dinner. That was a major victory, and it occurred as a result of her own desire to get up.

I think all of us (home health, the daily caregivers, and I) felt that was a confirmation that we were doing the right thing by not having forced her. We had been acting on the knowledge that her hospitalization had traumatized her so much that we didn’t want to add further trauma to her life. I believe we made the right decision.

A number of times since then, she has said she wanted to get up, but she got cold feet when we tried to help her. Three times she wanted to get out of bed after the caregivers had gone. I was relieved that she backed out because I wasn’t sure I would be able to get her back in bed by myself.

At the same time, she was beginning to adapt to our changing her. That was good because that is the most difficult issue we have faced, but it was still an unpleasant experience. Even the caregivers recognized it would be almost impossible for them to do it without my help. We began to believe her life and ours would be improved if we could just get her out of bed.

Late last week, I decided we should be more assertive with her. I may have been motivated by a couple of experiences with Kate’s physical therapist. I had talked with her about the importance of getting her up. She said she could get Kate up if I would give her permission to physically pull her up against her will. I told her I thought we should try. With the two of us pulling her, we helped her sit up on the side of the bed. She protested verbally and physically, but the process occurred quickly. She settled down almost as fast. We repeated this when she was here last week.

The caregiver who was on duty the first time we got her out of bed was on duty Saturday. Soon after she arrived, we talked about another attempt. This time I told her I wanted us to be more assertive, that I felt getting her out of bed wouldn’t be any more traumatic than changing her in bed.

Kate’s best time of the day is usually later in the day. She was asleep until noon, so we decided to give her time to have lunch and then see if we could get her into her wheelchair. For several days, I had talked with Kate about getting her up. She felt that would be all right.  Of course, that was easy to say because there was no immediate threat. We took that same approach Saturday, and she expressed interest. I can’t say it was easy or that she didn’t protest, but we were able to pull her to a sitting position on the side of the bed and then to the wheelchair. From there we went to the bathroom and helped her on to the toilet. She was frightened and fought when we lifted her from the wheelchair to the toilet and back, but overall it went well. She spent the rest of the day in her recliner in the family room. When it was time for dinner, we took her to the table where we ate dinner together for the first time in weeks. It was a very good day.

Yesterday, the same caregiver was here. Kate was awake at 11:00 and had her morning meds and some yogurt before the caregiver arrived. She was also in a very good mood that lasted the entire day. We got her up, to the bathroom, to her recliner, and later to the table for dinner. It was a day in which she was filled with delusions. She was very talkative but also very happy. The caregiver and I were also happy.

The icing on the cake occurred today when a different caregiver was here. I told her about the weekend. We decided to try again and had another success. Lunch was especially fun. It was the first time she had come to the table for lunch since before she contracted the virus. That’s six or seven weeks. Our Monday/Wednesday caregiver is from France and enjoys making French Toast and French Omelets. Kate had a little of both today. She fed herself and even told the caregiver the meal was “wonderful.” Later in the meal, I asked if she liked it. She gave me a very loud and enthusiastic “Yes!”

I will say that it was a bit more difficult getting her out of bed today. I don’t believe we gave her enough time to thoroughly wake up, but we succeeded anyway.

Looking back, I feel that we did the right thing earlier by not forcing her out of bed. She was too fragile from her hospital experience. Gradually she was improving. It was clear there were times she wanted to get up but was too frightened to do so. I feel she reached the point at which she needed to be pushed to save her from an experience that was more traumatizing. I am glad we decided to change our approach. She has enjoyed being up. As I close this post, I can hear her happily talking with her caregiver.

She has been up three days in a row. That makes me believe it should get easier in the future. I can’t tell you how good it is to see this leap forward.

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Feeling Grateful in the New Year

Over the past year, I’ve experienced a number of different emotions, most of the them related directly or indirectly to the progression of Kate’s Alzheimer’s, but some, like COVID, have occurred for other reasons. The feeling I have right now is a sense of gratitude. Kate and I have been on the receiving end of the goodness of people throughout the past year. That has been especially so during our personal experience with the virus and its aftereffects.

It marked the first time I felt a critical and immediate need for help, and everyone responded in ways that exceeded my expectations. Much of that came from family and friends who have given me encouragement via phone calls, cards, and email. I’ve been particularly impressed with our healthcare professionals. They have played an enormous role since the middle of November when we tested positive.

I’ve always felt good about the geriatric practice with which Kate’s physician is associated. I kept her doctor, nurse, and social worker busy responding to my questions. They went out of their way to address the various issues we have faced, and I continue to rely heavily on them.

Although unable to be with Kate in the hospital, I had several phone conversations with her nurses and doctors each day. They were responsive to all my inquiries and gave me a sense that they were giving Kate the very best care. They were also sensitive to my own needs.

It was only after Kate’s return home that I had direct contact with anyone. They include the Home Health personnel (nurses, physical therapists, and a social worker). I’ve had confidence in each one. They are all experienced in their respective areas and possess the sensitivity one expects from someone who has chosen a career caring for others.

My closest contact, however, has been with the caregivers who have been here every day since Kate’s return home. Watching and working with them closely has confirmed what I thought when Kate entered the hospital; I was facing a caregiving task that I couldn’t handle by myself.

I like every person our two agencies have provided. We’ve had seven or eight new caregivers. Only one person was with us before. Their training and experience have enabled them to address all of Kate’s needs. I’ve learned a lot from them. When you add their compassionate care to their clinical strengths, they are an excellent team.

I should make a special point concerning how hard they work, not just for us but for the others they serve when they are not here. I believe all but one of them works at least one other job in addition to their work with the agency that provides them to us. It is not unusual for the Monday and Wednesday caregiver to come to us after working all night and/or leaving us for another all-nighter.

I was especially impressed with someone who was here last week. She has undergone open heart surgery, has MS, and has had a brain tumor. She has four different jobs. In addition, she has two children, one who is in college. Despite the difficulties she has faced, she is very upbeat and grateful. I’m sure she is an inspiration to everyone who knows her.

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A Glass Half-Full or Half-Empty? Reflecting on Our Present Relationship

In a few days, it will have been six weeks since I watched Kate taken by ambulance to the hospital. The last words I heard her utter were, “Help! Someone, help!” That was a dark moment for me. I thought to myself, “I hope this is not the last image I have of her.”

Much (most?) of the time before getting the virus she didn’t remember my name or that I am her husband. With few exceptions, however, she has always recognized me as someone familiar and a person she likes and trusts. I couldn’t help wondering if she would recognize me at all when she came home. I feared she wouldn’t.

That fear ceased quickly when she immediately broke out in a big smile when she saw me. She was much better than I expected, and I was relieved. This shift in my emotions reminded me of the countless times I have responded positively or negatively to how Kate feels. As I have said before, when Kate is happy, I am happy.

It’s been over four weeks since she returned home, and she is still in bed, but she is making progress. Not everything is the way I would like it to be, but I tend to be a “glass is half-full” kind of person. As Kate has declined the past few years, I have tended to focus on our “Happy Moments.” That has been especially true since her return from the hospital.

One aspect of her recovery that I have enjoyed involves her feelings for me. She has been more psychologically dependent on me than ever before. She doesn’t express her feelings a lot in what she says, but she likes to hold my hand and squeeze it or rub it when we are in bed at night. She also depends on me for security each time the caregiver changes her.

She still retains some of her rational ability that I had thought was virtually gone. When I tell her the caregiver needs to change her, I immediately see the apprehension on her face. It is clear that she has an idea, though perhaps vague, of what is in store even though the caregivers and I attempt to make the process as non-threatening as possible. I get in bed beside her and very softly and slowly explain that the caregiver will be very gentle and that I will be “right here with you.” I also tell her that we will need to help the caregiver and tell her to hold my hands and that she can squeeze them as hard as she wants, and she does.

Gradually, she is becoming more relaxed. A few times, she has been totally passive except for the moments we have to turn her. She resists, but we turn her quickly. Then she is fine. If I put my arms around her and ask her to hug me, she seems to feel more secure and holds me tightly. I take this as another sign of the security she feels with me.

Kate isn’t the only one who dislikes this experience. The caregivers and I feel the same way. If she can learn to accept this more easily, we will have eliminated the only serious negatives that occur in a day. Of course, the best thing would be for her to agree to get up from the bed. Then we might be able to take her to the toilet. That would really simplify our lives, and we are working on that. One of her caregivers and I got her to sit up on the side of the bed once last week, something the physical therapist was also able to do that week. Slowly, but surely, we may succeed in getting her on her feet.

The worst part of her COVID experience occurred because she is in the last stage of her Alzheimer’s. She has never been able to grasp what has been going on since being taken by ambulance to the hospital. Even her return home has been quite different that it was when she left. Between the two agencies providing caregivers and the Home Health staff, I suspect it is impossible for her to recognize any of them. The result is reflected in her feelings toward me. I am her primary source of comfort and security.

Increasingly, the caregivers are getting to see her kind nature. I find it touching that she often thanks the caregiver after changing her even though she protests vigorously both physically and verbally. On a couple of occasions when we were embraced while the caregiver completed her work, she spoke tearfully in my ear and said, “I’m sorry. I’m sorry.” I find that heartbreaking.

On Saturday, the caregiver was ready to turn her from her side to her back. She stopped when she saw that Kate had nestled her head on my shoulder and stroked my arm. That same night after the caregiver had left, she did the same thing as we were watching The Wizard of Oz.

These are not only signs of her recovery, but they are also an indication of her affection for me. She has always been appreciative of my care, but the events of the past few weeks have elevated that feeling significantly. That strengthens my determination to do the best I can to make her secure and happy.

I am optimistic that she will continue to make progress. In the meantime, I am sustained by the strength of our relationship and more than grateful to have a glass that is half-full. I fully recognize that at this stage of her Alzheimer’s, my glass will never be completely full.

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Our Own Christmas Story

Very early in the pandemic, I learned the following expression concerning our plight. “We may be in the same storm, but we are not in the same boat.” That struck a chord with me. I believe it holds for just about every obstacle we encounter in life. I definitely believe it applies to people’s experience with Alzheimer’s. Our situations are very diverse. Some people’s experience is like being in a “leaky canoe” while others may be like traveling on an “ocean liner. As regular readers know, Kate and I have been fortunate to face her Alzheimer’s as if we were in a battleship safe from the harsh storms that sink smaller boats.

With that in mind, you might ask what this year’s Christmas was like for us. Judging by the number of Christmas cards, phone calls as well as the flowers and goodies we received, quite a few people may have thought the most fitting piece of Christmas music for us would be “In the Bleak Midwinter.” (One of my all-time favorites, by the way.) Had I thought about it, I might have felt the same way. Kate is in the last stage of Alzheimer’s and bedridden for four weeks related to her recent experience with COVID. Not only that, but we were going to celebrate the day alone except for Kate’s caregiver. As it turned out, we had a joy-filled day.

As usual, I was up early, had breakfast and took a 60-minute walk. I had a relaxing morning before going to wake Kate about 11:15. Her eyes were open when I got to her bedside, and she greeted me with a big smile, just the kind of beginning I like. I took care of her morning meds. Then I served her breakfast in bed. Of course, that isn’t exactly special when you have been in bed for a month as she has, but she still loves her food. Now that I am crushing her pills, even that is a pleasant event for her. I always put it in yogurt or apple sauce. I don’t even tell her she is taking medicine. I just say, “I’ve got a treat for you.”

When the caregiver arrived, it was time to change her. Neither Kate nor the caregivers and I like to face this. She is no longer as combative as she was the first couple of weeks, but it is still something she dislikes and resists. Yesterday was also a day to change the sheet as well, so we did it all at the same time. That is something that is especially disturbing for Kate, but it went relatively smoothly.

The afternoon went very well. Kate was quite talkative even though that involved a lot of delusions. I sat up in bed with her almost the entire time while we watched several Christmas musical programs on YouTube. During one of them, I pointed out that all the musicians in the orchestra were wearing Santa caps. Kate didn’t know what I was talking about, so I put on my own that I wear each year when ringing the Salvation Army bells.

After the caregiver left, we had our Christmas dinner. The meal itself was quite good. I arranged for it through a caterer we have used since near the beginning of the pandemic, usually on a Friday night. Her menu for Christmas was a generous portion of beef tenderloin accompanied by sweet potatoes gratin, twice-baked potato, and green beans. The dessert was an assortment of goodies including fudge, baklava, chocolate mint brownies, and Christmas cookies. We indulged ourselves but still have some leftovers for another meal tonight.

We had a good meal, and both of us enjoyed every bite. The setting itself was nothing to write home about. Kate, of course, was in bed. I stood by the bed and fed her while eating my dinner between her bites. In some ways, one might compare the glamour of the situation to the Parker family’s Chinese dinner in A Christmas Story. The big difference was that Kate and I were having a good time.

After dinner, we watched a portion of It’s a Wonderful Life. Kate was engaged as I tried to explain what was going on; however, I decided to move on to something else and scrolled through the TV schedule. I saw that The Wizard of Oz had just started and turned to that. As I had done with the previous movie, I explained what was happening throughout. She was so engaged that she didn’t want to stop when I first said it was time for us to go to bed. We ended up watching over half of it before calling it a night.

What could have been a depressing way to spend our Christmas Day turned out to be one I will remember fondly. We were together and very happy.

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Delusions, COVID, and Recovery

Like many others with dementia, Kate has experienced delusions. They became more frequent over the past year. With the arrival of the pandemic and sheltering, they increased significantly. I attribute this to the fact that her life was less stimulating. I tried to compensate by entertaining her more at home, but we were still more sedentary than before. As a result, she started taking breaks to rest. Upon waking, she often experienced delusions. By the time she and I had our personal experience with COVID, they occurred during a significant portion of each day.

Once she had the virus, however, they disappeared. Overall, she was simply weak and didn’t talk much. It’s been four weeks since she came home from the hospital. She was gradually recovering but still wasn’t having any delusions. That changed last week when she experienced her first one since contracting the virus. They have become more common since. Night before last, she spent about forty-five minutes talking to me about a delusion that involved a group of people who were with us. As happened so much in the past, she thought we were in a hotel or lodge and had plans to do something with the others the next day.

This has caused me to have an unusual feeling. I had always interpreted the delusions as a sign of her decline from Alzheimer’s. Suddenly, I found myself viewing them as a sign of her recovery, not to her pre-Alzheimer’s self but to the way she was before getting COVID. It might seem strange, but I am happy to see this change. It is far better than the way she had been under the influence of the emotional and and psychological impact of the disease.

Her delusions represent signs that the effects of COVID are diminishing. She is also talking more and expressing more signs of happiness. These are encouraging signs. I just wish her recovery were faster.

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Making Progress, But Not Out of the Woods

I am encouraged by the progress that Kate has made in the past week. One of the areas in which she has improved significantly is eating. She is now eating more “regular” meals and in greater quantities than she did the two weeks before. We went from one scrambled egg to two in addition to yogurt in the morning (actually close to noon). We had been relying heavily on soups for lunch and dinner. Now, we are getting her the same takeout meals that I get, and she is enjoying every bite.

Just as important to her caregivers and me is that she is protesting much less when changed. That doesn’t mean she likes it, far from it. She still tries to push us away from her, but her screaming and yelling has almost disappeared. It only comes at the moment we move her. For example, once moved to her side, she is quiet. It still helps that I am almost always with her. I continue to hold her hands to which she holds tightly. Two or three times I have put my arm around her and asked her to give me a hug while the caregiver pushes her over with one hand on her thigh and the other in the middle of her back. That way Kate turns very easily and we continue hugging each other until the caregiver finishes.

I must admit to a touch of sadness when I see her submit to us like this. She doesn’t like what is being done to her but has just given in. I wouldn’t like it either. It doesn’t take a long time, perhaps 10-15 minutes. Yesterday, however, the caregiver bathed her and also changed the sheets. The whole process took almost an hour. I think Kate and the caregiver may have handled it better than I did.

We are making the most of the Christmas season. As I did last year, I called on the woman who attends to our shrubbery to decorate the inside of the house using the decorations Kate has collected over the years. In addition, we have tuned in to YouTube much more than we have before. Yesterday, for example, we played Christmas music on the TV in our bedroom from noon until 8:00 last night. One of our caregivers also found a more beautiful fireplace video that shows a large portion of a nicely decorated seating area of a lodge with a large tree and a grand fireplace. I don’t know that Kate likes it any better than the one I had found before, but I do.

Our daughter, Jesse, was in town Saturday through Tuesday morning. It was a good visit for all of us. She felt Kate was much better than she had expected. She also had time to get acquainted with the caregivers who were here during that time. She was impressed with them and felt I was in good hands.

We had an especially touching moment on Sunday night when she joined us as I read The Velveteen Rabbit. I don’t believe I had known the book is a favorite of Jesse’s. As I read, Kate took Jesse’s hand in her right hand and mine in her left. She squeezed them periodically as I read. She still doesn’t talk a lot, but she is feeling and expressing her emotions.

Over the past week (until last night), we’ve had other wonderful evenings after the caregiver leaves. Kate has been relaxed and enjoyed the Christmas music and an almost nightly reading of The Velveteen Rabbit. Two nights I also read Love You Forever.

Not everything has gone the way I would like, but I think that is natural for someone who has experienced the kind of trauma she faced. The most significant thing is that she still has not gotten out of bed. We have talked about it, and last week, the physical therapist was able to get her sitting up for a few seconds. She came again on Tuesday, and Kate was too lethargic. That wasn’t too long after the caregiver had changed her. It sometimes takes her a while to recover. She is coming today, and we will try again.

As I mentioned above, our nights have gone very well until last night. She was a little upset when we changed her, but she seemed cheerful afterward. After the caregiver left, we watched a band concert in San Antonio in which our youngest grandson was playing. Her mood changed during that time, and she didn’t talk to me the rest of the evening. I even read The Velveteen Rabbit and didn’t get much response at all. When I reached the end, I thanked her for letting me read it and that I like the story. I was hoping to get her to say the same thing, something she almost always does. This time, she was silent.

This morning around 9:30, I noticed that she was running her fingers through her hair and went to see if she was awake. She was, but she didn’t speak to me at all. I went back to the kitchen and mixed her morning meds with yogurt and took it to her. She took it easily. Then I brought her some mandarin oranges. She ate a good serving of those. I took the dish back to the kitchen, and when I returned, she was asleep and still is at 11:30. I hope when we wake her shortly that she will greet us with a smile.

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Making a Recovery and Two Very “Happy Moments”

Kate is still a long way from a full recovery from COVID, but I’ve been encouraged by her progress over the past two days. Although she is still not out of bed, she is somewhat more accepting of the efforts of the caregivers to change her and move her in any way. Changing her is one thing with which I am still helping. We have found that my getting in bed with her and asking her to hold my hands seems to give her added security. Except for the actual move to her side and back again, she has been calm.

I will say, however, that changing her and the mattress pads (chucks) is no easy task even with my help. I continue to be struck by the little things that the caregivers know to get the job done. I would not have believed that they could change the bed sheets while Kate is lying on them if I hadn’t seen it for myself. Were it not for Kate’s strong resistance to being moved, it would be even easier.

She is eating more now, and her “plumbing” is working as it should. It took two attempts, but Senokot did the trick. In addition, crushing her meds has made pill time a breeze.

We are still dealing with a problem that occurred while she was in the hospital. I wasn’t with her during that time, but the reports of her behavior and what I have observed at home with all the new caregivers tell me that she has been traumatized by not having any idea of who these people are and why they are “pushing her around” so much.

That leads me to tell you about two very “Happy Moments” we had last night and the night before. For years now, our evenings together have been the most predictably good times of the entire day. I’ve always attributed that to the relaxed nature of our activities after dinner and ending when we go to sleep; however, the contrast between our days and nights has never been as great as it has been since she came home from the hospital. It was quite dramatic the past two nights.

During both afternoons, I played YouTube videos of Christmas music. Several of them were full concerts. Two nights ago we watched “Christmas in Vienna 2018”. That brought back a pleasant memory of December 2008 when Kate and I were in Vienna and attended a live performance of this annual Christmas program. I think Kate enjoyed the video as much as I did. She was happy, and so was I.

Last night, I watched the evening news after dinner while Kate rested. Then I got in bed with her and turned on YouTube again. Kate was exactly like her old self. She was fully at ease, and we were able to talk periodically, generally about our relationship and how good it was to be together. Last night, she introduced this conversation by saying, “I’m so glad you are here.” I interpreted that as a response to all the time she has spent with the caregivers during the day. I think it also makes a difference that she has had at least five or six new caregivers and only one who has cared for her in the past. She has been with us for over three years. Both nights, I ended our evening by reading (you guessed it) The Velveteen Rabbit. She was especially moved by it last night and expressed her pleasure throughout.

Before reading the book, I went back to YouTube and turned on a fireplace video. I’m not sure what motivated me to do that. I know that I had learned about them years ago, but it never seemed like something we might enjoy. It may have been the Christmas music we had enjoyed so much combined with Kate’s joyful mood. It was very much like a Christmas evening we might have had long before Alzheimer’s.

When I finished reading, I decided not to turn off the “fireplace,” and we watched the fire and listened to my favorite album of Christmas music sung by Chanticleer. Kate loved the fire. It actually created a slight glow in the room with the lights out. We talked another 15-20 minutes before calling it an evening, but they were special moments.

Moments like these are encouraging to me. They remind me of something that has been true over the entire course of Kate’s Alzheimer’s. She has gradually lost more and more of her abilities over time. That has been especially true in the past 6-8 months. With each loss, however, we’ve experienced moments like the past two nights. We don’t know, and have never known, exactly what lies ahead of us, but I am optimistic that we will continue to have moments like these. I might even try the YouTube Fireplace again. You can’t have too many tools in your toolbox.

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Always a Few Glitches. You have to Expect That.

I think a lot about how the world is and how we think about it. Right now, I am feeling very grateful. Kate has been home from the hospital just over a week, and the past two days she has shown significant signs of recovery. She may not return to exactly the way she was before COVID; however, if we can get her on her feet again, she might be pretty close. She was able to eat and drink successfully if not in the same quantities as before. She was also more cooperative when moved from her back to her side and when we changed her. I have found it helps a lot for me to lie beside her in bed and hold both of her hands while the caregiver takes care of these things. She seems to find some sense of security in that.

I’m also grateful for the numerous people who have sought to make my life less stressful during the past two weeks or so. These interactions have included Kate’s doctor’s office (a great geriatric practice), the hospital’s doctors and nurses, the Home Health agency personnel (especially their nurse and the physical therapist who did an initial assessment), our church, the friends and family who have called, written, or dropped off a meal, three different servers at restaurants we have frequented over the past few years (one of whom brought us a Thanksgiving dinner) as well as a host of Twitter friends who have expressed their concern and support including one who phoned me twice from New York and the AlzAuthors management team who in addition to their emails and Twitter messages of support gave me a gift certificate for Panera. My experiences with each one have reinforced something I already believed in – the basic goodness of people. I’m a rather self-confident and self-reliant person who has been lucky not to have needed such acts of kindness before now, and it has made quite an impression on me. I think I will be “paying it forward” for a long time to come.

In the midst of this largess of support, a few glitches have occurred. Both of the agencies who have had to work quickly to provide the help I had requested made mistakes on the schedule I had asked for – 8 hours a day starting at noon and ending at 8:00. One agency provided help between 1:00 and 7:00, the other between 11:00 and 7:00. In both instances, it wasn’t a misunderstanding. Those were the hours they were able to work out with their CNAs. I called one of them to say that on Monday I have a Rotary meeting at 12:30 and would like someone at noon. They corrected that right away. I talked with the other agency about their schedule of 11:00-7:00. I wasn’t rigid about the schedule I had requested and agreed to try theirs to see how it worked.

The next issue wasn’t anyone’s fault. The caregiver that had been coming on Monday and Wednesday and was my favorite declined to return after the first day because she has a back problem. She felt moving or changing Kate was going to be a problem. I was disappointed, but I could hardly blame her.

The day after I received that news I was eagerly awaiting a visit by the physical therapist at the Home Health agency who was to train me on the Hoyer lift. It turned out there had been a communication problem between the social worker at Kate’s doctor’s office and someone at the Home Health agency. The social worker at that same agency was scheduled to come to the house late that afternoon. She simply got tied up with other cases that day. I was assured that she would come late the next afternoon. It was 6:30 before she arrived, and she was here close to an hour and a half. It became obvious to me that she takes a lot of time learning about her clients’ situations and needs. She liked her, and I never said a word about her not coming the day before.

The following day I received a call from my other in-home care agency letting me know that the CNA who was to be with us that day was sick, and they hadn’t been able to find a replacement on such short notice. Before I could feel any disappointment, the person who called asked about the most important things I wanted to the caregiver to do that day. I told her it was changing Kate, getting her on her side, feeding her lunch, and changing her again late in the day and giving her dinner. She said she would come over and take care of those things for me. I thought that was going beyond the call of duty but accepted her offer. It turned out that although she works as the scheduler in the office, she is also a CNA and very skillfully handled her responsibilities with Kate. I was liked her too.

Given the stress I had been under, I might have been upset (frustrated? disturbed? angry?) by any one or a combination of these glitches, but I didn’t feel that way. I was simply too moved by how much everyone was working to make my life easier that I couldn’t be upset. There will always be bumps in the road. These won’t be the last ones.  It’s important to keep them in perspective even when we are stressed.