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Our Relationship

First, let me say that Kate had been in a good mood all day. Second, nothing in my caregiver’s toolbox works every time. On the other hand, Kate and I still work well together most of the time. Here’s an example from last night.

Kate was awake very early yesterday, just before 8:00. In fact, in the past few days, she has been awake as early as 7:00. It’s not unusual for her to do this occasionally, but she typically goes back to sleep. Not so, this time, and I took advantage of the opportunity of being together. I got the photo book I made for our recent anniversary and jumped into bed with her. We spent a good while going through it together. This was a time when she was interested. We enjoyed reminiscing about all the things we have done together. We only stopped when she began to tire. Then she rested until the caregiver arrived.

The afternoon also went well. Kate, the caregiver, and I spent over an hour relaxing on our balcony. That’s becoming a regular part of our daily routine at least until the summer heat makes it less appealing.

Although she is adjusting to our getting her out of and back into bed as well as changing her, Kate continues to protest, at least a little, most of the time.  That was true when we got her into bed after dinner. As the caregiver started to pull her slacks down, Kate responded forcefully both verbally and physically.

I responded by getting into the bed from my side. She was holding tightly to the caregiver’s arm with one hand and her pants with the other. I spoke slowly and softly and asked her to take my hands. She didn’t release her grip. As carefully as we could, the caregiver and I took her hands and put them in mine.

Then I said something like this. “Sweetheart, it’s about time for Lilly to go, and before she does, she needs to get you ready for bed. She needs our help. I know you would like to help her.” She said she did. I continued, “What we can do is just relax and let her do what she needs to do. She’ll be very gentle. She knows how to do this. I know this isn’t easy for you, but I am right here with you. You can hold my hands and squeeze them as tight as you want.”

She began to relax. Lilly did what she needed to do, Kate never protested. The two of us talked about how much we appreciated having someone to help us. When she was ready for bed, she said, “Thank you” (to Lilly). A potential problem had been averted.

This recovery wasn’t a singular event. It grows out of our longtime relationship and individual personalities. We are both conflict avoiders, and each of us likes to please the other. That has carried us a long way in our marriage, but I never imagined that it could pay such benefits in the last stage of her Alzheimer’s. Will it last forever? Obviously, I hope so, but I can’t even be sure it will happen the next time we encounter a similar situation. Still, I’m optimistic that the nature of our relationship will continue to help us face future challenges as they arise, and I know they will.

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How is Kate?

I am often asked how Kate is doing. Typically, these are situations in which I have little time to elaborate. For that reason, I’ve developed short answers that do the job. For years, I said, “She’s doing remarkably well.” During the past two years, I’ve been prone to say “She’s declining, but we still enjoy life and each other.” More recently, I’ve said, “Life is more challenging now, but we still enjoy life and each other.”

Her bout with COVID, especially her hospitalization, brought about the most abrupt changes she has experienced during the ten years since her diagnosis. Now when people ask me about her, I say, “She’s making progress but very slowly.” Here’s a fuller story.

Before we got the virus, Kate had entered the last stage of Alzheimer’s. That involved lots of delusions and hallucinations. In addition, I was concerned about her long-term mobility. It was becoming more difficult for her to get up from a seated or a prone position. For years, she had been frightened by sudden noises. I had to warn her when I was going to get ice from the ice maker. Even when I did that, she was often shocked. Along with that, she became uneasy going up and down steps. Her physician and I agreed that she would probably skip a walker and gravitate to a wheelchair because she was unlikely to be able to maneuver a walker. A week or two before she tested positive for COVID, I had to enlist the help of the owner of the Mexican restaurant where we had just finished our meal because she was afraid to step off the curb to get in the car.

A large percentage of the time, she did not know that she was in her own house. Thus, the experience of being taken from her bed to an ambulance and then to the hospital for eight days must have scared her to death. I have compared it to a person’s being kidnapped. Even though the hospital was a place for her to get help, she wasn’t in a position to grasp that. I am sure she was frightened off and on during her entire stay.

She quickly recovered from the physical effects of the virus, but she remained traumatized when she arrived home. We were able to get her up for less than an hour her first day home; however, she was too scared to get out of bed for the next seven weeks.

Today marks the sixteenth week since returning from the hospital. She has made slow, but very gradual, progress. Her physical recovery from the virus hasn’t been a problem. She never had any fever or breathing problems. She recovered quickly while in the hospital from the symptom that took her to there – weakness.

After coming home, we had Home Health for two months. Physical therapy was the primary object of their care. They discontinued service because she wasn’t responding as quickly as they had hoped. Once again, the problem wasn’t anything physical. It was, and still is emotional. She is simply frightened almost every time we try to move her in any way. That involves changing her, lifting her out of bed, putting her into her wheelchair, and putting her back in bed. During these moments, she can be quite combative. She often yells and screams at us. Sometimes she tells us to “Shut up” and “Get out of here.” On some occasions, she presses her nails into my arms and those of her caregivers.

There is one good thing. Her anger usually ceases as quickly as it comes. It is not unusual for her to apologize or thank us after each event. Frequently, however, she is very passive, non-talkative. That normally lasts a few minutes but can last as long as an hour or more.

During the first few weeks after her hospital stay, we did our best to minimize the problem because we felt we were continuing the hospital experience and didn’t want to aggravate her emotional problem. After seven weeks, we decided she needed to get out of bed if she was going to make the kind of recovery we hoped for. We noticed there were occasional times later in the afternoon when she wanted to get up and took advantage of it. At first, the caregiver (with a little help from me) lifted her from the bed to her wheel chair. We found that difficult and gravitated to using a Hoyer lift. Now, that’s the only way we get her up from her bed or a chair which we do four or five times a week. One of the things I like about this is that she and I get to eat dinner together at the table.

The lift works well, but Kate often protests at several points in the process. Each step involves maneuvering her in some way. Fortunately, once she is suspended in the air, she generally relaxes. This process is definitely less offensive to her than changing her, and we depend heavily on it.

My role in everything is to make Kate feel more comfortable. When we change her or get her ready for the lift, I get in bed and tell her what we are going to do. I also tell her that she can help by remaining calm while the caregiver does what she needs to do. When it’s time to turn Kate on her side, I ask Kate to give me a hug, and I put my arms around her. I count to three and pull Kate toward me while the caregiver pushes in the same direction. Kate usually screams or yells, but, once on her side, she is quiet. She holds me tightly and general strokes my back, and I do the same to her. Once in a while, I say, “We never imagined we would be doing this when we first married.” Despite the intended humor, this is a touching moment for me. Throughout the process the caregiver and I tell her she is doing well and thank her for helping us.

Over time, Kate has protested much less than before, but she continues to resist at least minimally most of the time. Last week she went several days with little combativeness. Then over the weekend, she gave us problems. What I hope for is that she will gradually sense that we are not going to harm her, but I am prepared to accept that she may never walk on her own again.

The best thing I can say is that she is happy most of the time, and our relationship never been stronger (except at those moments when we move her). Our evenings after the caregivers leave continue to be the best part of our day. This may not last forever, but I will always be grateful for moments like these and so many others we have shared for almost fifty-eight years.

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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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A Special Day for Kate and Me

During this season of the year, people’s thoughts are on the traditional holiday celebrations. That’s also true for Kate and me; however, December 19th is also a day we celebrate. On this day 59 years ago, we had our first date. We attended a performance of Handel’s Messiah on the campus of TCU where we were students. This began a lifetime attending many musical and theatrical performances together.

Despite remembering the date, I only recall a few other things about that night. One of those is picking her up at a neighbor’s house where she and her family were having dinner with very close friends who had known Kate since birth and were like an aunt and uncle to her.

Another was that sometime during the evening, Kate said her father wanted her to ask me a question. He wanted to know if I knew a doctor, then living in West Palm Beach, who had been a groomsman in her parents’ wedding. She was surprised when I said that I had gone to high school with two of his children, was in Key Club with one of them, and that he was my dad’s orthopedist. We were off to a good start.

We had an interesting courtship. In January, I took a job as an ambulance driver with a funeral home. That job played an integral role as our relationship became more serious. My responsibilities also included assisting with funerals. Sometimes I found a few stray flowers. When I did, I took the opportunity to drive by the campus and put a flower or two in the front seat of her car. Other times I was asked to drive to another city to bring back the body of someone who was to be buried in Fort Worth. When I did that, the funeral home would pick my meal expenses. I usually took Kate with me. I was pinching pennies at the time, and that was a good way to have a date without its costing me. (The owner of the funeral home knew I took Kate with me, and he picked up her meals as well.)

I had intended to return to Florida after graduation; however, by late March, it was clear that we were getting serious. I decided to stay in Texas. Although I didn’t realize it at the time, Kate’s mother was also noticing the signs of our budding romance. In 2013, after my dad’s death, my brother found about 100 letters I had written to my parents during my days at TCU. Among them was a letter from Kate’s mother to mine. It included the following paragraph.

I wish you could be experiencing with us all the fun and excitement of their friendship. Yesterday was the 19th and on Dec. 19th, Richard had his first date with Kate to attend the “Messiah.” So they celebrated a six-month dating anniversary with 6 lovely red roses. They have such wonderful times, and it keeps us young just watching them.

Appropriately, we became engaged on the first anniversary of our first date. Since then, December 19 has been special for us. Kate has long forgotten that, but I will always remember. Happy Anniversary, Kate. Because of you “I have been changed for good.”

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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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All’s Well That Ends Well

Morning confusion isn’t something new for Kate. She isn’t usually frightened by it, but that happened earlier this week. She was sleeping soundly at 11:00 when I went in to wake her. The look on her face is always the first sign of how she is feeling. She often smiles. Sometimes, she is quite cheerful. Sometimes, I see the look of confusion. This time, I sensed fright and said, “You look scared. Are you?” She nodded.

I launched into what has become a common routine. I try to be reassuring and say, “I can help you. You and I met at TCU and have been together ever since.” She looked doubtful that I could do anything for her. I went on to tell her that I knew a lot about her and her family. Then she said something that I’ve never heard her say before and can’t remember her exact words. She conveyed that she wasn’t able to think of anything, something that fits what I have perceived before as her mind’s being a “complete blank” though she had never been able to articulate it.

When I repeated that I would like to help her, she said, “What can I do?” I told her it would probably help if she could get up and get dressed. I went on to say that I thought she would feel better after she got up. She surprised me when she said, “You’re probably right.” I was encouraged by that, but when I asked her to give me her hand to help her, she said she couldn’t do it.

I sat down on the side of the bed and talked with her a few minutes and tried again. She wasn’t ready. I gave her a little more time but continued to sit with her. When I tried again, she was cooperative. She was very uneasy as we walked to the bathroom and had the normal confusion about what to do once we were there. As we completed each step, she seemed to be more at ease. By the time we walked into the family room on the way to the kitchen, she seemed fine. We stopped a few minutes for her to enjoy the flowers and plants and to rearrange a few things on one of the tables.

Breakfast went well. She enjoyed her food, and the music I was playing. When she finished eating, I asked if she would like for us to spend some time together in the family room. She wanted to stay at the kitchen table. I don’t think I have commented on this before, but she seems very comfortable sitting there. One of the sitters told me that once she wanted to remain there after lunch, and they stayed there for a couple of hours.

That evening she was fine when she got in bed. Two hours later when I was about to get in bed, she had that look of fright on her face and asked who I was. She wasn’t reassured after my telling her. Then I thought of The Velveteen Rabbit. She wasn’t particularly interested, but I read it anyway. Midway through the book, she was making her audible responses to the passages I read. She was fine when I finished. I said, “I love you,” and she said, “I love you, too.” Another rough edge smoothed out.

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Tender Moments

I have a Twitter friend whose wife has early onset Alzheimer’s. She is in memory care, and it is only recently that they have been able to get together. The other day he posted a video of the two of them as he read Love You Forever. As he read, she leaned over and kissed him (through her mask, of course). His tweet said, “Special moments are not always captured but this one was.”

This struck a chord with me because Kate and I have so many moments like this that go unrecorded. Sometimes I try to describe them, but my descriptions never fully convey the feelings of those moments. The past few days they seem to have been more frequent than usual.

Two days ago, I posted a tweet about one of those moments that occurred at lunch on Sunday. Only two other tables were occupied in a restaurant that seats over 200. While enjoying the quiet and comfort of having the restaurant almost all to ourselves, Kate said, “I want you to know how much I appreciate all that you do for me.” I said, “I do it because I love you.” She said, “I love you too. <pause> Who are you?” It was a very tender moment that some might have taken as sad, but it was a special time for both of us.

We had a similar, but longer, experience the next morning. Kate woke up early. I was only twenty minutes into my morning walk (inside the house for those of you who are new to this site). When I got to her bedside, she was sitting on the edge of the bed, her mind seemed to be a complete blank. She said, “What am I doing here?” I said, “This is your home. This is where you live.” It didn’t take long to tell that she didn’t know me and that she was in a deeper fog than usual; however, she wasn’t frightened as she is sometimes. She was just confused about where she was, who she was, and who I was.

I told her we had been friends in college and that I could help her. That didn’t totally reassure her, but I was able to take her to the bathroom without her having any reservations. Once there, she didn’t know what to do. I explained that she should take off her underwear and sit on the toilet. She was still a bit unsure of me and didn’t feel comfortable doing that. I was, however, able to get her to brush her teeth. She began to feel somewhat more at ease with me, and I took her back to the bedroom to get her dressed. She was a little hesitant to let me help but consented. Throughout the process she seemed to get more comfortable. Several times she asked who I was. I gave her my name and repeated that we had met in college and been together ever since.

I took her to the kitchen where I poured her a glass of apple juice, and she took her morning medicine without a problem. I also turned on a Barbra Streisand album and selected songs that I know she especially likes. She commented on how much she liked the apple juice. She seemed pretty much normal though she continued to periodically ask who I was.

I fixed her some cheese toast. She liked it and wanted more. The music was still playing when she finished eating. Streisand and Neil Diamond were singing “You Don’t Bring Me Flowers Anymore.” Kate had closed her eyes and was engrossed in the music. She even mouthed some of the words.

When the song ended, she opened her eyes. Something across the table caught her eye. She said, “This is a nice room.” (Most of the time, she doesn’t know she is in her own home and admires it as though she is visiting a friend’s house or staying in some type of commercial lodging.)

I said, “Beautiful things. Beautiful music. <pause> And beautiful feelings.” She looked at me, nodded, and repeated, “Beautiful feelings.” Then she extended her left hand to me. I put my right hand on hers. She put her right hand on mine, and I followed with my left hand on hers. We sat there quietly for 5-10 minutes without saying a word, just listening to the music.

Kate still had several small pieces of cheese toast on her plate. She asked if I could fix more and that we could share. I did. The music ended, and I put on another album that we have always liked. Then we sat quietly enjoying cheese toast and the music for another twenty minutes or so before adjourning to the family room. Before getting up, she said, “I feel better.” I said, “I do too.”

Did she know who I was? I don’t know. I doubt it. What is important is that we had shared a special moment together. As Kate’s care partner, I’ve read a good bit about caregiving. I’ve learned a lot though never enough. A number of things have seemed especially significant to me. One is the importance of living in the moment. Another is mindfulness. I think this particular experience is a good example of both. I try to take advantage of moments like this and am “mindful” of how much each of us cares for the other and that there is a limit on our time together.

The day began with a rocky start, but in a rather short period of time evolved to that tender moment. It wasn’t that I had done anything of great significance. That wasn’t necessary. I just helped her get ready for the day, served her a breakfast she enjoyed, played music I know she likes, and gave her time to feel at ease with me.

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Still Having Good Times

I hope I’ve made it clear that Kate and I face more issues to deal with than at any other time since her diagnosis. I am also happy to say what I have said before. We still enjoy life and each other. This past weekend is an excellent example.

Saturday morning she was slow to get up. That meant we didn’t get to have our regular lunch at Andriana’s. Ordinarily, that would not have been a problem. We would simply have had a late lunch; however, this time I wanted to attend a virtual memorial service for a church friend who died unexpectedly. It started at 2:00, and I knew we would be unable to get home in time.

As it turned out, Kate hadn’t quite finished her lunch when it started. I had expected to have finished eating and that she would rest while I watched the service. Instead we watched it together at the kitchen table. She had no idea who our friend was, nor was she able to follow everything that was said. That didn’t keep her from finding the service to be meaningful. She was especially moved by the music and prayers. Periodically, she reached her hand out to me. When she does this, I put one hand on top of hers. She puts her other hand on mine, and I top it off with my other hand.

I have often attended services for other church friends but haven’t been able to do so for a while because they have always conflicted with my responsibilities for Kate. Before that, I had been touched by memorial services because they made me think of a time when we would have one for her. Given that, it isn’t surprising that I found both the service and Kate’s response equally touching. It was a special time for the two of us.

Thirty minutes later, we had a Zoom call with our son Kevin. That, too, was special. Most of his calls are on the phone, and often Kate has been resting or in bed for the night. The result is that she isn’t up for a conversation. To be sure, a Zoom call is a little confusing for her. Her vision problem is part of the reason. She has a hard time seeing anyone on a Zoom call. In addition, is the fact that she can’t quite comprehend that she could be seeing someone on a call. It took a while at the beginning of the call to get her to look at the computer screen and see Kevin. Even after that, she drifted away from the screen.

The good thing is that we were able to talk comfortably. Some of the time, she and I talked to each other. I felt that was a good thing in that Kevin was able to catch a glimpse of the way we relate to each other. It was very much like it would have been if he were not on the line. It was an hour of pleasure for the two of us and, hopefully, for Kevin as well.

The rest of the afternoon and evening went well, and we have added something new to our evenings. I ‘ve been reading a bedtime story just before turning out the lights. I started with The Velveteen Rabbit, but that is a little long. I learned about Love You Forever from a Twitter friend. His wife is in memory care now and still likes it. It is much shorter, and I found that Kate likes it as well. It is short enough that I added I’ve Loved You Since Forever by Hoda Kotb who wrote it for her adopted daughter. Together the two books work out just right for a bedtime story. I plan to add a few more. It’s a nice way to end the day.

Sunday was also a good day. Kate was ready to get up at 8:30. That gave me enough time to get her breakfast, spend a little quality time with her, and let her rest before lunch. The highlight came while we were still at the kitchen table after breakfast. I’ve mentioned before that she often cleans up her plate, but I don’t believe I have said much more than that. She uses her index finger to pick up the final specks of food and put them in her mouth. There are always some things she doesn’t like. She puts those on the table or her placemat.

She did something different yesterday. She likes to arrange things and often changes the arrangement of items on her bedside table and dresser. Not too long ago I reported on her food art. That was when she spent time placing her napkin, utensils, glass, and food in various places on her plate and placement. Yesterday, she did something similar.

I made cheese toast for her using Dave’s “PowerSeed” bread. As the name suggests, it is loaded with seeds, and a lot inevitably fall on the plate or placemat. I noticed her carefully studying her plate. She was arranging the fallen seeds on her plate along with her fork and one remaining bite of cheese toast. I complimented her on her artistic eye as she continued to arrange and re-arrange. She enjoys things like this, and I enjoy seeing her entertain herself. This and other simple pleasures provide us with plenty of good times.

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Feeling Needy and Appreciative

I am sure I am not alone among caregivers in wondering how Kate perceives her own situation. I make my own interpretations based on what she says and does, but I would really like to know what she thinks and knows. One thing I do know is that she recognizes that something is wrong with her, and it often bothers her. As on other occasions, she made that very clear yesterday.

It was a day when she appeared unusually needy. All day long, she seemed to want to be with me, holding my hand and asking me what she should do about everything. It is not unusual for her to be dependent. It was simply a day of her feeling especially needy. Except for being uneasy when walking, she didn’t appear to be particularly disturbed. Even when I left her with the sitter, she seemed to accept my departure although she was disappointed and said, “Don’t stay too long.”

At dinner, she expressed her appreciation of my care for her. We were holding hands across the table. She said, “I can’t live without you.” With a concerned look on her face, she said, “I don’t know how I would get along if something happened to you.” It was a moment when I believe our thoughts were in sync. It was one of our tender moments when we convey as much or more to each other through our non-verbal expressions as the words themselves. That isn’t everything I would like to know from her, but it is very powerful. It reinforces my commitment to give her the best care I can.

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Change is Ever Present, But Some Things Remain the Same.

Much of my recent posting has focused on the changes occurring in our lives. That is true, but I don’t want to mislead you. Some of the best things are still with us. I can sum it up by saying this. Kate continues to be the same kind, thoughtful person she always was. As a result, the strength of our relationship hasn’t diminished in any way. In fact, I would say it is stronger than ever.

Last week, I watched a video lecture by David Brooks recorded during his visit to Chautauqua in 2018. A section of his talk dealt with love and referenced the following quote from Corelli’s Mandolin by Louis de Bernieres.

Love itself is what is left over when being in love is burned away. And this is both an art and a fortunate accident. Your mother and I had it. We had roots that grew toward each other underground, and when all the pretty blossoms had fallen from our branches, we found that we were part of one tree and not two.

I think this applies to our relationship as well as most other successful marriages including those of Kate’s and my parents. We had a good marriage before Alzheimer’s, and our roots “grew toward each other.” Now I have discovered that we are “part of one tree and not two.”

There are a number of reasons “Living with Alzheimer’s” has been less stressful for us than for many others. The nature of our relationship has to be one of them, and it has not deteriorated. That could change at any time. Alzheimer’s has changed our lives significantly, but I remain optimistic.

There are many illustrations of the way we have handled the trials accompanied by this disease. Let me mention several that have occurred in the past week.

One night early last week, I had just gotten out of the shower and was about to take a seat in a chair on my side of the bed. This is a relaxing time of the day for me. Kate was sitting up in bed while watching a YouTube video of Rachmaninov’s Piano Concerto No. 2. I assumed she was more engaged than usual because she was sitting up. Normally, she is lying down with her eyes closed and listening. Before I could sit down, she motioned to me to join her in bed. It was about 45 minutes before I would normally go to bed, but I got in bed.

It turned out that she was experiencing two conflicting emotions. She was enjoying the music, but it was also a moment when she was disturbed by not knowing “anything.” She wanted my hand and held it firmly as she leaned against me. I felt it was another time when talk was less important than simply being with her. Within 10-15 minutes, her anxiety was gone. We watched the entire concerto, and she wasn’t sleepy. We followed that by watching a performance of Tchaikovsky’s Piano Concerto No. 1. We were much later getting to sleep than usual but it was another case in which music and the comfort of our relationship solved a problem.

One morning two days later, she woke me around 5:00. She had apparently had a dream in which she had some obligation that morning. She wanted to know what time she had to be there. I told her I didn’t know of anything that she needed to do that morning and that she could relax. For a very brief moment, that satisfied her, but then she asked again, and again, and again. Finally, I suggested that I put on some soft music. I have a variety of music for times like this and turned on the audio. Then I put my arm around her and held her for over thirty minutes. During that time, she relaxed and forgot all about her obligation. She wasn’t asleep but at ease, and I got up for the day.

As she grows increasingly dependent, her desire to be with me seems to increase as well. The past few days she has talked about liking to be with me. On at least one of those occasions, it followed an afternoon with the sitter even though I was in the house most of the time. Before the sitter arrived today, I mentioned that I was going to the grocery store. She told me she didn’t want me to leave. I told her I wouldn’t be gone long and wasn’t going to leave right away but would be in the kitchen taking care of a few things. She accepted that, but the look on her face suggested she didn’t want to.

Yesterday morning was one of those times when she didn’t recognize me as her husband or know my name, but she asked to hold my hand. She said she didn’t really need it, but it made her feel better. She wanted to go home, so we went for a ride in the car. It wasn’t long before she said, “I don’t know how he does it.” She said a few related things, and I asked who she meant. She looked at me and said, “You.” This was far from the first time she has referred to me or herself in the third person. When we returned home, she wanted to tell me something but couldn’t express it. I’ll never know exactly what it was, but I got the impression she wanted to tell me what it feels like not to know anything. I don’t know that I would be able to express it either. I do know that she hasn’t forgotten me as a person whose company she enjoys and on whom she is very dependent.

As an aside, I think she has remembered my name and that I am her husband more often as her dependence has increased. When I got home to relieve the sitter two days ago, the sitter told me Kate had asked about “Richard” off and on the whole time I had been gone. Interestingly, while we were eating lunch today, she asked, “Where is my husband?” several times. We had been talking, but there were moments of silence. She apparently looked at me but did not recognize who I was and felt uneasy. Yes, changes are occurring, but some very important things remain the same. Our relationship, music, her photo books (especially the “Big Sister” album), and The Velveteen Rabbit are among them.