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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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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.

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Good News

I’ve made no secret of the fact that Kate and I have faced serious challenges during the past 10-12 days, but we are beginning to see rays of sunshine. My conversation with Kate on Sunday afternoon was one of those. Yesterday, I continued to see a few things falling in place that will ease our burden significantly.

Yesterday morning, I received a call from the new agency with which I have been arranging additional help for this week and in the future. They confirmed that they have someone who can be with us today through Friday and then again on Sunday while they continue to locate a person for Saturday. They will be here from noon until 8:00 p.m. each day. I chose that time period because those are the hours that Kate is usually awake. She rarely gets up before noon these days and is normally in bed by 7:30 or 8:00. As with so many other things we have faced, flexibility is essential. If this schedule doesn’t work out, I’ll change it. I also contacted our existing agency to increase from four hours each visit MWF to eight.

Of course, the best news is that Kate is coming home today. I suspect that will be this afternoon. They are supposed to call me regarding a time. She will be coming home by ambulance.

When I spoke with the hospital yesterday, they said they are recommending the full plate of services for Home Health Care paid by Medicare. I don’t know that Kate will need or qualify for all of them. We will learn about that after her assessment. I spoke with a representative yesterday. He is awaiting my call to tell him when Kate is coming home.

So, how am I feeling about all this? The truth is that I am hopeful and a little sad and apprehensive about what lies ahead. I want to think that Kate’s strength will eventually improve to her pre-COVID level, but I am not confident since she had been on a steep decline in the preceding weeks. The fact that she has been bedridden for nine days is of concern as well.

I am also uneasy about her overall mobility. Will this experience be the catalyst that makes her wheelchair bound? If so, that will be a dramatic adjustment for both of us. It would obviously make if more difficult for us to get out and about. That doesn’t mean we can’t do it. I see people in wheelchairs almost everywhere we go. If others can adapt to it, we will as well. I am confident of that.

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Happy Day

When people ask about Kate, I often say that she is now at Stage 7 in her Alzheimer’s journey. I sometimes add that it is the last stage that can last for years. I feel sure my reply conveys the seriousness of this phase of the disease. For that reason, I usually add that it doesn’t mean that we don’t continue to have moments of joy. We do, and one of the interesting things to me is how often those moments are intertwined with the common symptoms of this stage. I am grateful because her life is now filled with more delusions, hallucinations, and confusion than she has experienced before. Yesterday is a good example.

Shortly after 8:00, I heard her say something and went back to the bedroom. When I reached her, she seemed wide awake but confused. That may seem a strange combination. What I mean is that she looked and sounded fully awake, but her confusion was obvious as I tried to get her up and into the bathroom.

I told her I was glad to see her and asked if she was ready to get up. She was but said, “What should I do?” I suggested she first move her feet and legs to the side of the bed. She didn’t understand what I meant, so I gently pushed them to the side. She said, “What now?” I told her to hold my right hand while I lifted her with my left. Some mornings this is difficult. She seems to be dead weight. This time she pulled my right hand, and I was able to lift her to a sitting position. It is not unusual for her to scream when I do this. She didn’t this time.

She was very uneasy getting to her feet, but we got to the bathroom without a problem. When I told her to take a seat on the toilet, she was confused and didn’t want to. That is pretty common, but this time she wanted to know why she should sit on the toilet. I gave a very simplified explanation that she couldn’t understand. Then I told her we could skip it. After I said that, she agreed to sit down. Afterwards, we washed her hands, and I gave her a toothbrush to brush her teeth. She didn’t understand what she was to do with it. I helped her get started. Then we went back to the bedroom to dress. That went smoothly.

For a very long time, Kate has responded with great interest when she sees the plants and flowers in our family room, on our patio, and the back yard. That has been less frequent in the past few weeks. It was back yesterday, and we took a few minutes to enjoy them together.

Once she was seated at the kitchen table, I gave her a glass of apple juice and her morning meds. She loved the juice (which she refers to as water) and took her pills without a protest. She actually seemed pleased I had given them to her.

The best was yet to come. I fixed her a slice of cheese toast. Kate didn’t remember having eaten it before and responded with enthusiasm. She ate it more quickly than usual, and I fixed another one. She was quite talkative while eating and after. (I may have noted in an earlier post that she seems to feel especially comfortable at the kitchen table and often wants to linger long after she has eaten. I think she likes the fact that the table is located beside a large window overlooking our neighbor’s front yard and that of another neighbor across the street. Two different sitters have commented on her wanting to stay at the table for as long as an hour after eating.)

I joined her at the table right after fixing her cheese toast. She asked my name. When I told her, she gave me her name, something she often doesn’t remember. It was one of many times during the day she didn’t remember my name or our relationship. Then she began a lengthy conversation. I wish I could tell you what she said, but her speech was so garbled that I couldn’t make any sense of it. Everything she said emanated from a delusion. I do know that she mentioned her mother and later in the conversation made references to other people (“she,” “he,” “they”) and assumed that I knew them. It was light-hearted chatter, and she laughed a lot over 30-45 minutes. I loved seeing her enjoy herself.

During all this, an album of very relaxing music was playing. “Clair de lune” caught her attention. She stopped talking and said, “Listen.” For the balance of that piece and into the next, she closed her eyes and put her hands together as though she were praying. This is not the first time she has done this. I always find it touching. The day was off to a good start. It was a very “Happy Moment” for both of us.

We finally adjourned to the family room where she wanted to rest. I took that opportunity to take my morning walk (inside the house for those of you who are new to this blog). I hadn’t walked ten minutes before she was sitting up. Then we spent a short time looking at one of her photo books before getting a takeout meal for lunch.

The sitter arrived just as we were finishing lunch. I got up from the table to get ready to leave, and the sitter took my place. It was a very natural transition. Kate was perfectly happy with Cindy as she has been since her first few visits . That makes me feel much better when Ieave.

When I returned, they were seated on the sofa looking at a photo book and having a grand time. Kate was sorry to see her go. Their relationship is everything I could have wanted and more.

The rest of the evening went well. We had a pleasant dinner with a takeout meal at home and encountered no challenges getting ready for bed. Kate had not rested at all during the day. That’s rare. As a result, she went to sleep rather quickly but awoke briefly when I got in bed. She was still happy, and so was I.

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Another Good Day with the New Sitter

In a previous update about Cindy, Kate’s new sitter, I mentioned how happy I was about the way she and Kate have connected. While it may be too early to think this is a perfect relationship, I continue to be impressed. They had another good day on Wednesday.

When Cindy arrived, Kate was delighted to see her. That made me feel good. I didn’t leave right away. When I did, Kate gave me a sad look and said, “Your leaving?” I explained that I had some errands to run and that Cindy would be with her. Cindy immediately engaged her in conversation, and I slipped away.

When I returned, the two of them were seated on the sofa looking at one of her photo books. Kate asked me to join them, and I did. After a few minutes, Cindy said she had to take care of dinner for her husband. Kate seemed just as disappointed to see her leave as she had been when I left earlier. She reached out her arms and gave Cindy a hug and said, “Will you be coming back?” She was pleased to know that she will be.

Cindy has quickly become a bright spot in our lives. When talking with Kate, I have referred to all of the sitters as your “friend” rather than “sitter” or “caregiver.” Cindy, however, is the first to come close to being one. I couldn’t be happier. Kate has needed this kind of relationship from the beginning.

The icing on the cake is my recent use of a friend who can fill in occasionally. She will help me out tomorrow and Monday, two days when our regulars are unavailable. As I may have said before, we are in better shape than ever in terms of in-home care. That’s good because there are many other things to which I need to attend.

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Follow-Up to Previous Post on In-Home Care

I closed the previous post with an expression of optimism regarding our new Monday/Wednesday sitter. That was right after both of her regular visits last week. Thursday, I got a call from the agency that our Friday sitter couldn’t make it and that Cindy, the M/W sitter, was able to come. I thought that was good since that would mean Kate would have three consecutive visits her. Although she can’t remember her sitters by name, she does sense some familiarity over time.

That visit went especially well. When Kate heard her say goodbye, she looked sad and said, “You have to go?” Cindy told her she would be back next week. Then Kate said, “I love you.” I usually refer to all the sitters as “friends” when I mention them to Kate. I am hopeful that Cindy may truly be one.

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An Update on In-Home Care

Five weeks ago I reported that the stability of my three-year arrangement of sitters for Kate had suddenly come to an end. I lost the person who came on Monday, and the person who came on Wednesday and Friday had some changes in her life and dropped Wednesday.

On top of that COVID-19 has made it hard for the agency to find replacements. That led me to contact someone we had met at our music nights at Casa Bella. She started a business providing services for seniors about a year ago. I gave her a call, and she came to my rescue on a day when I had an ophthalmologist’s appointment.

Wouldn’t you know it was also a day when Kate didn’t want to get up. As it approached time for the sitter’s arrival, I gave up and decided to let her sleep/rest. This was a time I hoped she would sleep be in bed until I returned. Our friend isn’t really in the business of providing personal care, and I didn’t want to put her in the position of getting Kate to the bathroom and dressing her. Since I knew that Kate would not remember her, I was also concerned about her waking up and not knowing who this person was.

As it turned out, Kate wanted to get up before I came home. I never got the story from our friend, but she had taken care of everything. They were chatting happily when I arrived. I regretted that both of them had been put in this spot, but they seemed to have gotten along fine. Since then, I have used the friend on two or three other occasions. It is especially nice that she does not require a minimum time. Twice she has been here an hour and a half. The agency has a four-hour minimum.

Next, the Monday/Wednesday sitter had to leave her position as a result of a back injury; however, we had a stroke of good fortune. One of the agency’s regulars had an opening for those days. Coincidentally, I discovered that I know her husband. He is an ex-banker turned farmer. For several years, he has dropped by our office in a truck loaded with fresh produce. I have also encountered him at the American Red Cross. He is one of, if not, the leading donor in our area. He is nearing his 1000th donation of blood or platelets.

The best news is that she is the best sitter we have had since I first brought in help three years ago. Having said that, I did run into one issue that seems to have been resolved. I thought she was great because she took more initiative to engage Kate in conversation and other activities. The only problem was that she seemed to move too quickly for Kate. Each of the first two times she was here, it appeared they had gotten along fine. When the sitter left, however, Kate’s eyes rolled. One of those times, she said, “What’s going on here?” On another visit, the sitter brought her iPad to play some children’s audiobooks for Kate. I suspected that was going to be overwhelming, and it was.

When I returned from another visit, Kate was asleep on the sofa. That gave me an opportunity to talk with the sitter. I told her I was very pleased that she was now our regular Monday/Wednesday sitter. Then I asked if she had heard of The Horse Whisperer? She hadn’t, and I went on to explain his approach to breaking horses by very gradually gaining their trust. She confessed that she was a little hyper but would try to approach Kate more gently to establish her relationship.

She has been back twice since then, and the visits have gone very well. Kate had rested a short time during her last visit. The rest of the time they had looked at photo books and read stories. I took it as a good sign that Kate didn’t express any concern when I left, nor did she seem to be relieved when I returned home.

I am optimistic about the future with her. Her hyper nature has a positive side. She has taken more initiative to help me with the laundry, replace bed sheets, and looks for other things to lighten my load. She also has a touch of OCD. I notice that in the way she folds clothes and makes up the bed. If she can stick with us, our in-home care will be the best ever.

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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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Azheimer’s Has Been Testing Me For The Past Two Days: Part 2

The next morning (Friday), I woke up just before 4:00 and was awake for 30-45 minutes. I made up for it by sleeping until 6:25. As I started to get up, Kate spoke to me. She was wide awake and ready to get up. I asked if I could go ahead and get to the bathroom and dressed before she got up. That was fine with her. I thought she might have gone back to sleep by the time I finished, but she still wanted to get up.

Everything went smoothly, and we were in the kitchen about 7:15. That is really early for her. I fixed breakfast for both of us. She was cheerful and loved her apple juice, blueberries, and cheese toast. It was one of those times she mentioned repeatedly how good everything was. I shared some of my scrambled eggs. She also liked them. She was talkative and didn’t know who I was, but we had a good time.

When we were through, I told her I wanted to show her something. We went to the family room where I picked up a photo book of her father’s family. We’ve looked at it a lot over the years but don’t usually get through the entire book before she wants to rest. That morning was a notable exception. She took far more interest in it than she has before, and we finished the whole album.

By this time, she was tired and wanted to rest. That’s when I got my laptop and sat in a chair across from her. We had enjoyed such a good time together that I was eager to write this post. She didn’t rest long and didn’t sleep at all before gathering three different photo books in her arms and got up from the sofa as though she were going someplace. Then her attention focused on the flowers and plants outside and inside.

Moments later we took a seat and began one of those long conversations in which she is the primary speaker. I can’t begin to summarize what she said. Much of it I didn’t understand. She talked about a child or children she was serving as a mentor. At least, that would be my interpretation. She was enthusiastic about the children and the work she was doing. I was happy to be a facilitator. As I suggested in my previous post, I was eager to write about having such a special experience, but I also hated to stop her. The conversation lasted almost forty-five minutes before I brought up the subject of lunch.

We got a takeout meal, and the good times continued until we finished our meal. I stepped away from the table to pay someone for work he had just completed on our swimming pool. When I got back to the table, the look on Kate’s face had changed dramatically. I mentioned it and asked what was troubling her. She was quiet and didn’t know what to say. Over the next ten minutes or so, she didn’t talk much. She was troubled by something, but her expression didn’t suggest the usual issues. She didn’t look like she was experiencing anxiety as she does in some moments when she doesn’t know “anything.” Neither did she look afraid. She tried several times to say something. Each time she had trouble getting it out.

We were silent a few minutes before she asked if she could tell me something. I was eager to hear and quickly agreed. She began by talking about a boy and a girl. I had a hard time making any sense of it but listened without saying anything. Several times, she said she didn’t want to hurt me. I just let her talk. As she continued, it became clear that a baby was involved in some way. I began to sense that the girl and boy had had a baby out of wedlock. From her first mention that what bothered her most was hurting me, I thought she might have had a delusion about having had an affair; however, that seemed too far-fetched. Gradually, I began to realize that the girl she was talking about was her and asked.

That began an additional conversation in which I tried to reassure her that I would forgive her and that we could continue our relationship as though it had never happened. The sitter arrived at that point. I told her we would join her shortly. We talked an additional 25 minutes before I walked Kate to the family room. We spoke with Mary a few minutes. Then I told Kate I had a few things I wanted to take care of in the kitchen (my office) and assured her I would be at home and Mary would be in the room with her.

Everything was all right for two hours before Kate walked into the kitchen looking for me. She was disturbed again. This time she wanted to talk with her mother. Like the issues I confronted the day before, I felt on the spot to say the “right” thing without knowing for sure what that was. This time I told her that her mother had died. I almost always avoid telling her because it sometimes bothers her though only momentarily. Normally, she accepts it without a problem.

It was different this time. She wasn’t hurt at all, but she adamantly refused to accept what I had said and continued to ask to call her. I reminded her that she had cared for her mother the last 5 ½ years of her life here in our house. She never believed what I said and asked to speak to her father. I reminded her that he had died 30 years ago. That didn’t fly any better than telling her about her mother.

At least, Kate decided to go in a different direction. She said she could call her parents’ church, and they would know. I told her we might have trouble reaching someone who might know about her parents. Strangely, she accepted that although she repeated her desire to call the church several other times over the next 30-45 minutes.

I brought up her brother and said we could call him. That pleased her, but I placed calls to Michigan where he and his wife are spending the summer and was unable to reach him. Then she talked about friends who might be able to help. I thought of a woman with whom she had worked when she was the church librarian. I was unable to reach her as well.

A couple of years ago, I started a 3-ring binder with information about Kate and her family. I remembered that it contained a copy of her father’s obituary. The binder was sitting on the table in front of us. I opened it and read the obituary. Kate finally accepted that her father had died. Then I went to my computer and pulled up her mother’s obituary and read it. She accepted that as well, but that led to an additional problem.

She was quiet for a moment before saying, “I have to go to Fort Worth.” That is where she was born and lived until two years after we married. She asked if I would take her. At first, I tried to discourage her, but that was a mistake. I switched gears and agreed to take her.

We got up from the sofa and went to the car for one of our regular drives “home.” I drove for 30 minutes before stopping to order a takeout pizza from a place near our house. During the drive, she calmed down and forgot all about going home or wanting to call her parents. We picked up the pizza brought it home, and the rest of the evening went well. The day’s crises were things of the past.

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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.