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Kate’s Last Pedicure

Kate has always enjoyed manicures and pedicures, and I have periodically taken her for both since her diagnosis. Now, however, she no long remembers the procedures and the little things she is supposed to do. The last couple of times I have stayed with her the whole time just in case she needed my help. It has worked out, but her insecurity on the previous visit made me more cautious. I made an appointment yesterday afternoon.

When we entered the salon, a different person was at the reception desk, so I pulled out one of my Alzheimer’s cards and slipped it to her. Although that was in advance of any problems, it turned out to be a good thing. I walked her back to the chair to help her get seated. Existing customers were in the seats on either side of her. It turned out getting in the chair was an ordeal. That was partially due to the fact that she had to go up a high step to get into it. The other part involves her eyesight and difficulty understanding directions. She apparently couldn’t see or didn’t recognize the chair itself. Despite my efforts to direct her by putting my hand on the seat of the chair and trying to get her to face it, she struggled to understand what we were asking. I should add that the woman who was to give her the pedicure and the woman sitting in the chair to her right were also trying to instruct and guide her. Although we were all trying to help, I suspect we added a measure of confusion. During this process, Kate let out a scream that was easily heard throughout the salon. All eyes were on her. That was just the beginning.

As luck would have it, the woman next to her was a retired nurse and very understanding. She introduced herself and explained the procedures Kate experienced. That began with the warm water running into the tub at her feet. She was frightened at first. The nurse had a very soothing voice that put Kate at ease at least as much as she could in what had to be a strange situation for her. I thought that at some point she would have some sense of familiarity with the process, but that never happened.

I brought Kate’s iPad to her chair; however, I put it down on a step to her side in our effort to get her seated. She didn’t realize it was there. It wasn’t long before she wanted it. The nurse gave her a magazine. I realized she was looking for her iPad and went over and gave it to her. I think the nurse was surprised that she was able to work an iPad. I wasn’t in a position to explain that she has only minimal capability to work her puzzles and that, with some difficulty. It didn’t take long for her to see that for herself. Kate finished one puzzle but didn’t know how to get to the next one. As usual, she made her way into the store. The nurse looked over at me and said she didn’t know how to help her. I intervened and showed her.

We had been there quite a while, when I noticed that Kate and the nurse were talking. The nurse mouthed that she was looking for her “mother.” I am sure she was looking for me and just said mother. She frequently mixes gender and relationships. The nurse showed Kate where I was sitting. She waved to me, and I waved back. A little later, the nurse called me again. This time Kate had taken her feet out of the tub of water. The nurse explained that the water was to soften the skin on the bottom of her feet so that they could smooth it out. Kate didn’t understand. I went to her and explained that she needed to put her feet back in the tub. She did, but it was only a minute or two before the attendant began her work.

That was when the “fun” started. Not knowing what was to come, Kate screamed again and responded audibly while the attendant rubbed the bottom of her heal. I went back to her and helped to calm her and then went back to my seat. In a few minutes, it was time for the other foot. Once again, she was surprised by the experience. I stayed with her for a while. When she was calm again, I took my seat in the waiting area that was about twenty feet across the room and clearly visible to Kate who waved to me periodically.

Finally, it was time to leave. It turned out that getting out of the chair and descending the step was a bigger problem than getting in. Anticipating that she would need my help, I was in place when she was ready. The first problem was standing up from a sitting position. That has become increasingly difficult at home and restaurants. This was a little more frightening for her because the chair was elevated so far off the floor. Kate is very insecure about going down curbs and stairs. To her this must have seemed like jumping off a cliff. All this was accompanied by a variety of audible sounds. As with other moments during the process, all eyes were on Kate.

As we walked out the door, Kate said, “Let’s get out of here.” I think most of the other people in the salon thought of their personal experience as a treat. Far from it for Kate. In the car, I apologized for putting her in this situation and mentioned that we might go back for a manicure sometime. She quickly said, “I don’t ever want to go back there.”

The personnel and the nurse next to Kate were very understanding. I don’t know how the others took it. I only gave my Alzheimer’s cards to the receptionist and the nurse. In my haste to leave, I didn’t think to give one to the woman on the other side of Kate and ask her to pass it around. I wish that I had because I did notice soft laughter among the group. I admit that from their vantage point, it was funny, but it was a sad moment for me. It’s been almost two months since I had to discontinue her bi-weekly massages. Now the mani-pedis. I wonder what is next.

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Thoughts about Anticipatory Grief

Just about everyone has some awareness of grief that occurs after death of a family member or friend. Much has been written about it, but most of us don’t think of anticipatory grief that occurs before death. There seems to be agreement that not everyone experiences this kind of grief, and I imagine that is a difficult issue to measure. It’s something many people have never thought about, and, thus, are not likely to recognize or say they are experiencing or have experienced it.

As you might expect, I am in touch with a lot of caregivers of people with dementia. Anticipatory grief is a topic that comes up periodically. It is easy to see how the concept would be relevant for this group because of the lengthy span of time between diagnosis and death. Many people view the diagnosis as a “death sentence.” Since there is no current cure for the disease, I understand this thinking. My personal preference, however, has been to focus on the positive side and concentrate on the value of the remaining time that Kate and I have to enjoy life and each other. Having said that, I must admit that the diagnosis did serve as a wake-up call that life does not go on forever. We know this anyway, but the diagnosis of dementia is usually a significant signal that death is sooner than we had expected.

Lynne Eldridge, M.D. (https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855) talks about the nature of anticipatory grief, and, like most authorities, is careful to acknowledge that “everyone grieves differently.” She suggests that such grief can be like a roller coaster ride with all its ups and downs. It’s not constant. With that in mind, she identifies the following symptoms one might experience.

  • Sadness and tearfulness
  • Fear of death itself and the changes that will accompany it
  • Irritability and anger
  • Loneliness
  • A desire to talk
  • Anxiety,
  • Guilt
  • Intense concern for the person dying
  • Rehearsal of the death – visualizing what your life will be like
  • Physical problems – sleep and memory, and
  • Fear of loss, compassion, and concern among children facing death of a parent

Recently, I have wondered if I’m experiencing this grief and, if not, if and when will it occur. This has led me to think about the symptoms listed above as well as the degree to which I experience them. Here are my thoughts.

I quickly eliminated the following signs: irritability and anger, loneliness, desire to talk, and guilt. I may a bit more irritable because I often feel more rushed than usual. If so, it is minimal, and I don’t feel lonely or guilty at all. I do like to talk, but that was true long before Kate was diagnosed.

I experience each of the remaining symptoms to a greater or lesser degree. Here is how I would rank them in terms of their intensity.

I often feel sadness and occasionally experience tearfulness, especially at services for friends who have died. There have also been a number of moments when I choked up while talking with someone about Kate. This has been true since her diagnosis. As her Alzheimer’s has progressed, I have felt sadness each time we did something that was or I thought would be the last time. That includes our international travel as well as trips to New York City, Chautauqua, and our children’s homes. In addition, my eyes often fill with tears during my happy/sad moments with Kate. One that comes to mind is when she asked, “Would you consider marrying me?” during a conversation at a local restaurant about a year ago, but there have been many others.

The sadness I am talking about is not lasting. It is momentary, but I have sensed a greater degree of sadness recently that relates directly to Kate’s decline over the past few weeks (months?). I have experienced hospice with three of our parents, and my current feelings are more like those except for the clearer reality of impending death associated with their situations. With Kate, I also continue to have uplifting experiences that prevent the sadness from being a problem. Nonetheless, there is a real difference in the way I feel now. I think that relates to some of the other symptoms listed above.

I don’t think the word “fear” best describes my feelings, but I don’t want to face what lies ahead for us. When the time comes, I am sure I will handle the situation as I have done in the past. I think the word “anxiety” is a better word than “fear” to describe my feelings. This seems like a very natural response for a spouse whose loved one is entering this stage.

I often think about life after Kate’s passing. I don’t know how someone in my position could avoid that. This will be the most dramatic change of my life since we married, and it’s a permanent one. At the same time, I know many people, including my father, who adapted well after the loss of a spouse. I believe that I, too, will adapt.

I wake up more often at night and have difficulty getting back to sleep. I also sense that my memory has been affected by the demands of caregiving. To date, neither of these has been a serious problem. I’m not sure what to expect in the future.

When I think of each one of these symptoms, I would say none comes close to the feeling of sadness in terms of intensity. There is no denying, however, that I experience anticipatory grief. The question is “How will I handle it?” I am optimistic, but I also believe it won’t be easy.

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Creating Happy Moments

As I have mentioned before, I have two primary goals in caring for Kate: To keep her safe and to keep her happy. For the most part neither of those goals has been especially challenging. I am, however, finding it more difficult to keep her happy. I think that is only natural with the progression of Alzheimer’s. In the early stages, Kate could easily entertain herself. Apart from the routine activities in which we were involved together or those with her friends, she had three different things she did on her own. The one that occupied the largest portion of her time was her yard. Weather permitting, she sometimes spent as long as five or six hours in a day tending to her plants and shrubs. As the shrubbery began to die from her excessive pruning (“pulling leaves”), she gave up working in the yard two or three ago.

She also edited photos on her computer for what she intended to be a photo book of our family. Although she wanted to include a good bit of text to provide a fuller account of our lives, she never wrote anything. Instead, she would often say to me when we were talking about our lives together, “Remember that. That goes in the book.” Though less frequent now, she still says that occasionally. Originally, she spent as much or more time on the computer as she did in the yard, but it became increasingly difficult for her to operate. That dropped out of her life about four or five years ago.

That left her with her iPad on which she works jigsaw puzzles. In recent years, she has spent up to seven or eight hours a day on that. Now she is encountering much more difficulty. I fear that ability will soon be gone. That requires me to spend more time entertaining her. Yesterday was a good example.

When she woke up, she was not as warm and friendly as she sometimes is. She joked with me, but it grew out of a feeling I had rushed heer and took on a more serious, than humorous, tone. I often joke with her, but I back off in situations like that. My joking tends to exacerbate the problem. Knowing that we would soon leave for lunch, I didn’t say much. I simply responded to her needs in getting dressed. I knew I could depend on the car ride of about twenty minutes and could play music all the way to lunch.  We didn’t talk much at all in the car. When we did, it involved references to the music. Once we were at the restaurant, she was fine.

When we returned home, she wanted to work on her iPad. I joined her in the family room and put on some music she would enjoy. After an hour or so, she asked for my help. As soon as I started to help, it was clear that she was more confused than usual. It wasn’t that she had pressed the wrong button. Somehow she thought she was supposed to spell someone’s name and couldn’t do it because there were only scattered puzzle pieces on the screen. She didn’t see any letters. I tried to explain, but she didn’t understand. She kept talking as though there was another person in the house (a woman). She thought her name was Carol. When I couldn’t help, I suggested that she take a break from her puzzles and look at one of her photo albums. It wasn’t long before she was engaged with the photos in the Big Sister album.

We did that for a little while, but I was on my knees beside her chair and got tired. I suggested we move to the sofa where I could sit next to her. She enjoys looking at her albums by herself, but she seems to appreciate them more when I do it with her. That is because I am able to identify all the people and situations. I fill in lots of information she couldn’t remember on her own. It was a happy moment for both of us, and we went through the entire 140 pages.

We had a similar experience after dinner. On several occasions lately, I have played the soundtrack from the movie Annie. It’s an album that we both enjoy. That prompted me to look for the movie on YouTube. I found it, and we watched a portion of it a couple of nights ago. Last night, I turned it on again. Kate was interested but started working puzzles on her iPad. It wasn’t long before she needed my help. She was having a similar problem to the one she had earlier in the afternoon. She didn’t now what to do with the scattered puzzle pieces. When I pulled up a new puzzle, she was worried that she might “mess things up.” I felt sad for her since she obviously recognized that she does mess things up. I assured her she wouldn’t create a problem but decided once again to take a break from the iPad and look at another photo album.

The one I chose was a book focusing on her father’s family. It is a book that we have looked at many times and contains information starting with her grandparents. Because she was already confused, I decided not to read everything. I simply gave her an abbreviated version of the text. I told her about her grandparents moving to Texas with their families, getting married, having children and ultimately moving to Fort Worth where Kate was born. She hadn’t remembered a thing about this album. She thanked me profusely for telling her and said she had never known these things before. As we went through the album, she told me she wanted me to remember that “for the book.” She looked at me very seriously and said, “I want you to help me with this. I want it to be very good. Don’t let me mess it up.” I told her I would, but, of course, I know that she will never be able to create the book she has wanted to make for so long. My heart went out to her when she expressed her fear that she might mess up the book if she did it on her own. Even at this late stage in her Alzheimer’s, she knows she has a problem.

The video had been playing all the time we were looking at the pictures. Although she was excited about looking at more photos, she was beginning to tire. Then one of the songs in Annie caught her attention. We both started watching, and I began to give her a commentary on what we were seeing. That seemed to help her understand what was going on, and she enjoyed the rest of the movie.

Thus, we ended the day on a happy note. It was a day that was punctuated by ups and downs in Kate’s mood, but each time I was able to lift her up with the aid of music, photos, and a video. It reminds me again of how fortunate Kate and I are. I think about the people living with Alzheimer’s who aren’t entertained all day, who have caregivers that have other responsibilities that prevent the kind of continuous care that Kate receives. I also think about the people with dementia who don’t respond to such entertainment in the same way that Kate does. It has to be so hard for their caregivers.

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Signs of Greater Dependence

When I went in to wake Kate yesterday, I saw that her eyes were open. I spoke to her. At first, she didn’t express any emotion. I walked closer and told her good morning. She smiled. I was glad to see that. We were off to a good start. Her smile soon turned to a look of puzzlement. It was the look that meant she was confused. I sat down on the bed. I said, “You look like you’re wondering where you are.” She didn’t say anything. I proceeded to give her my name and hers. She said, “Where are we?” I told her we were in our bedroom and told her to look around the room, that she might see something familiar. She glanced but didn’t give me any sign that she saw anything she recognized.

I talked with her a few minutes and then suggested that she get up so that I could take her to lunch. Getting up from the bed or a chair is beginning to be more difficult. As I helped her up, she screamed. She felt a pain in her right knee. That is the one with the arthritis. This was the first time she has felt any pain in a year; however, this was different than before. This time it was short-lived. Once she was on her feet, the pain subsided, and she didn’t complain of any pain after that. I took her to the bathroom to use the toilet and brush her teeth.

I showed her the toilet, but as often happens, she didn’t recognize it. I asked her to take a seat. Then she said, “That’s it.” She washed her hands and then started to brush her teeth. I went to the kitchen to take care of a few things. It wasn’t long before I heard our housekeeper tell her that I was in the kitchen. I walked into the family room where the two of them were standing. When she saw me, her eyes brightened, and she had the biggest smile you can imagine. She said, “There he is.” I walked toward her, and she almost ran to me. She reached her arms out to me and we embraced. Then she gave a great sigh of relief. I said, “So Linda told you where I was?” She said, “She did?” Then she looked at Linda, tears filled her eyes. She thanked her and gave her a big hug. To me, this is one more striking example of her increasing dependence on me. There have been times in the past few years when I lost her for a period of time, once for three hours in Niagara-on-the-Lake, Ontario. She wasn’t bothered at all. I was the one who was panicked. This time we were not more than fifty feet apart (though she couldn’t understand that) in our own house, and our separation was only minutes.

It also seems to me that she is more responsive to my suggestions. For example, she hasn’t been as slow to respond when I tell here it is getting to be bedtime. She is also decidedly more accepting of my help in dressing and holding her hand when we are walking to and from the car.

I can’t help wondering what comes next?

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Fading Away

These days I see unexpected changes in Kate’s behavior and mood. In some cases, they are new things. More typically, they are things I have observed before. The difference is that they are becoming more frequent. At dinner last night, we had a conversation about our children and the good times we had had during our marriage. Moments later, she didn’t know my name or that I am her husband. Again, this is not something entirely new. It’s the abruptness with she moves from clarity to confusion.

Last night, I saw a message from a man who felt his wife was fading away. I can relate to that. I have had this sense for years. Now it feels like the end is so much closer, and it is.

The other day before leaving the house for the hair salon, she went to the bathroom. When she came out, she said, “I’ll never do that again.” I don’t know what she was talking about, but she was wiping her hands. Fifteen minutes later at the salon, she asked me if they had a restroom. I told her they did, and she wanted me to take her. She looked a little frightened as we walked through the salon. When I opened the door for her, she said, “You better come with me.” Once inside, she spent her time washing her hands and her arms, taking much longer than I would have thought necessary. I didn’t see why she wanted me with her. I know she has had other experiences when she didn’t know what to do in a restroom. One time she tried to exit through a locked door to a supply room. In that case, our server helped her get to the correct door. Another time she locked herself in and couldn’t unlock the door. The experience at the salon made me suspect she was feeling particularly insecure. It also appears there was some connection with her statement at home that she would “never do that again” and her washing her hands and arms at the salon. Did she accidentally put something on her hands at home that she still needed to get off? I have no idea. I don’t know of anything (like a household cleanser) in the bathroom at home. It’s another mystery.

I see signs of change at home and everywhere we go. She sometimes forgets where her toothpaste and toothbrush are even though I now keep them on the counter in the bathroom where they are quite visible.

At lunch yesterday, I mentioned that we would have pizza last night. She didn’t recognize “pizza.” I gave her a description, and she still had no idea what I was talking about. She picked up a slice of a black olive that was with her meal. She said, “I like this.” I told her it was an olive. That didn’t mean anything to her.

Her dependence on me continues to increase. At lunch, I said something about someone who had died. In a moment, and with a look of concern, she said, “What would happen to me if something happened to you?” I reminded her that my dad had lived to 100 and suggested I might do the same. Her question, however, had a tone of greater concern that deserved a more serious reply. I reminded her that our son is in the elder care business and was quite familiar with all the resources and issues related to seniors. I told her he would step in and care for her and that would mean she would probably move to Texas to be near him. She gave a sigh of relief and said she felt better knowing that. That is just another sign of her awareness of her dependency.

She has always been appreciative of the things I do for her, but she has moments when her expressions are more excessive than before. When we left the hair salon the other day, she said, “You’re a nice guy, a really nice guy, and I mean that.” In the car she said, “You are the best man I know.” Near the house, she said, “Do you know who is most important?” I said, “Who?” She said, “You are.” This was one of those happy/sad moments. I am happy that she feels more secure with me, but I am sad for her to experience the insecurity that makes her need me.

At home we looked through a portion of the “Big Sister” album. She got tired and wanted to rest. While resting on the sofa, she asked, “Where are we right now?” I told her we were in our very own house. She said, “The inside?” She really is fading away now. I don’t know what she will be like in the next few months.

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Something New

About 7:30 yesterday morning, I noticed on the video cam that Kate was sitting up in bed. She had stern look on her face. I asked if she wanted to go to the bathroom. She said no. I said, “What would you like to do? I would be glad to help.” She motioned me to sit in the chair beside the bed and said, “You start.” I said, “Start what?” She said quite firmly, “You know.” I told her I really didn’t and that maybe she had just had a dream about something. She was emphatic that she wasn’t dreaming. Again, she told me “to start.” I told her I wasn’t sure what she wanted me to say. She said, “Then why are you here?” That led me to take another approach. I told her my name and her name. Then I proceeded to tell her about our meeting and our courtship at TCU. I gave her a synopsis of our getting married, going to graduate school, jobs, having children, and the places we had lived right to the present. As I talked, she started smiling. Her mood began to change. When I got to the end of my story, I said, “We’ve been happily married for fifty-six years, and I love you very much.” She smiled and said, “I love you too.”

I gave her a hug and asked what she would like to do now. She said, “I don’t know.” I told her it was just 8:00 and that she usually liked to sleep a little longer. She told me that is what she wanted to do. I pulled back the cover, and she got back in bed. She slept until 10:00 when she got up for good. She was in a good mood and expressed no confusion at all. She was ready to go early enough that we were able to spend some time at Panera before going to lunch. I will never know what caused her to be irritated with me when she first woke up. I just hope it doesn’t happen again. If it does, I will probably take the same approach, that is, just talk about things that get her to think about the good times we have had.

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Morning Confusion, But a Good Recovery

I’ve talked before about the way happy and sad moments are often intertwined. That was true for the way our day started yesterday. About 7:45, I saw on the video cam that Kate was sitting up in bed. I went to check on her. She wanted to go to the bathroom. She was very groggy and confused. I walked her to the bathroom. Like the day before, she was unsure of herself. Even when I showed her the toilet, she was unsure that was it. This was not the first time. I’m not sure whether it is the fault of her eyesight or her memory that prevents her immediately recognizing the toilet.

When she had finished, she said, “What now?” On some days she resists taking a shower. I took advantage of her dependence on me for direction and told her I thought it would be good to take one. I knew it was unusually early for her to get up, and she would want to get back in bed after showering. That is exactly what happened. I got her up in time get to lunch and back before the sitter arrived.

She was still confused and asked my name, and I told her. Then she asked her own name. I told her. It wouldn’t stick, however. She asked the same questions another four or five times before I got her dressed.

Fortunately, it was a day when we had plenty of time to have lunch before the sitter’s arrival. As we walked into the family room, she took a few minutes to admire her plants. She almost always stops just before the door to our kitchen to say hello and goodbye to Pepper, the ceramic cat that lies on the floor near the fireplace. She did so yesterday. This time she also looked at a photo of our son, Kevin, when he was about ten. She was especially taken with it and asked if she could take it with us. I told her she could. I asked if she knew who he was. She didn’t. When we reached the restaurant, she asked if she could take it inside. I told her that would be fine. She took it along with her and kept it in front of her during the entire meal. By the end of our lunch, she seemed to be back to normal.

She was tired when we returned to the house. She was resting on the sofa when Mary arrived. I told her I was leaving to donate platelets and that Mary was there if she needed anything. She told me goodbye and greeted Mary but didn’t get up. When I came home, the two of them were talking. It was another good experience with the sitter.

She wanted to rest again after Mary left. She rested about forty-five minutes. Then she said, “Would you add one other thing to what I had written? Tell him where we live.” I said, “I will.” I didn’t ask who. I am sure it was another instance of her thinking about something and believing it was a conversation we were having.

At dinner, Kate was confused about what to do with her napkin. First, she asked our server what she should do. The server didn’t understand what she wanted. I placed the knife and fork for her. Then I told her to put the napkin in her lap. She could not understand that. It may have been that she didn’t recognize the word “lap.” She is forgetting more words these days. For example, she didn’t know the word “pickle” at lunch and never remembers “gelato” even though we have it twice a week. At any rate, I got up and placed the napkin in her lap. By the time I got back to my chair, she had already put it back on the table and asked, “Is this all right?” I told her it was.

Normally, when we get home from dinner, we sit in stay in the family room a while before going to our bedroom. Last night, Kate was tired, so we skipped the family room. I watched a little of the evening news and then took a shower. I turned on YouTube videos of Sierra Boggess at one of the BBC’s PROMS concerts. When I finished my shower, I saw her sitting in her chair enraptured by the music. She was smiling with her eyes closed and her head moving in sync with the music. She watched the videos a while longer and then wanted to go to bed.

When I got in bed an hour later, she was almost asleep. I moved over close to her. We chatted a couple of minutes.

Kate:              “Who are you?”

Richard:        “Do you mean my name or my relationship with you?”

Kate:              “Both.”

Richard:        “First, tell me if I seem to be someone familiar to you?”

Kate:              “Yes, very familiar.”

Then I told her my name and that I was her husband. She didn’t display any surprise as she sometimes does. It wasn’t long before we were asleep.

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The Day After

Following the “Very Good Day” day before yesterday, we were back to what I might call the new normal. It’s probably more accurate to say there is simply less predictability in our daily lives than there used to be. The expression “remarkably well” continues to be a good summary, but Kate is definitely not the same as she was even six or eight weeks ago.

I was encouraged when I went in to wake her. As the day before, she was already awake and gave me a nice smile. She was fine until I tried to help her out of bed. She wanted to do it without my assistance. I backed off, but the damage was done. From that point until nearly the time we left the house for lunch, she seemed both irritated with me and afraid. It wasn’t that she was afraid of me. I think it was a case of fear from not knowing where she was, who I was, who she was, or what she should do. She held on to me as we walked to the bathroom. When we got there, she didn’t know what to do. I pointed to the toilet and said, “Why don’t you go to the bathroom first. Then you can wash your hands and brush your teeth. That was too much information. I know better than to do that, but it was too late to take it back. That didn’t set well with her. She was not only irritated but confused. When she was ready, she said, “I don’t know what to do. Just tell me.” I put toothpaste on her toothbrush and handed it to her. She dropped the toothbrush in the sink, and the toothpaste came off. I told it came off and would get her some more. The same thing happened a second time. She felt I had rushed her and strongly expressed her irritation with me. Then she apologized for the way she had spoken to me and started to cry. I tried to calm her and was mostly successful, but it wasn’t until we were on the way to lunch that her emotion subsided.

The rest of the day went well. We had a nice time at lunch,, during the balance of the afternoon, and at dinner. Then on the way home from dinner last night, Kate said, “Where do you live?” I said, “Right here in Knoxville. I’m taking you home right now. You can spend the night with me.” She answered, “You mean the three of us.” I said, “Who is the third?” She gave me a look of irritation and said, “You know who.” I didn’t pursue it any further. I’ve learned that I never get an answer when she says that.

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A Very Good Day

In many ways, yesterday was just an ordinary day. I got Kate up in time for the sitter who arrived at noon. I went to my Rotary meeting, to the Y, and the grocery store before getting back home to relieve the Cindy. Kate and I relaxed in the family room for an hour and then went to dinner and returned home. We received a phone call from our daughter and ended the day. So why do I think it was “a very good day?” Let me tell you.

We were off to a good start when I went to wake Kate shortly after 11:00. She was already awake and gave me a smile that said, “Everything is all right. I’m just enjoying resting.” I sat down on the bed and we talked a few minutes before telling her it was time to get up. She wasn’t eager, but when I explained that I was going to Rotary and Cindy would take her to lunch, she agreed to get up. She was in a good mood and, other than needing me to guide her to the bathroom, she gave no sign of her normal early morning confusion.

She dressed slowly, but promptly, and was ready before Cindy arrived. I was leading her to the kitchen for her morning meds when she wanted to stop and admire the flowers in our family room and the ones on the patio. I enjoy watching her experience such joy. We started toward the kitchen, she stopped and said hello to the ceramic cat that has been a “pet” for quite a few years. He is now resting in front of a cabinet beside the fireplace as we walk to the kitchen. Then she noticed, as she almost always does, pictures of her father, our son, and me when I was about twelve. She loves looking at them, and her pleasure increases when I tell her “who we are.”

When Cindy arrived, Kate gave her a hug and showed no signs of concern about my leaving. They were sitting in the family room when I got back. I was glad that it did not appear that Kate had taken a nap as she often does. Even though she often naps after lunch, I sometimes feel that she uses that as a way to escape the sitter. This time they were talking. I also saw that she had the three-ring binder memory book on the table next to her. She had been looking at it.

One of the highlights of the day came after Cindy left. Most of the time, Kate is ready for us to leave the house as soon as I get home. Recently, that has been changing. Yesterday Kate gave me no indication that she was ready to go out. I turned on some music that I know she likes and sat down with my laptop to check my email. After a few minutes, I looked over at her. She had closed her eyes. Each hand was flat against the other as if in prayer. I have observed this on several other occasions. She continued to enjoy the music for about forty-five minutes. She periodically opened her eyes. She also released her hands off and on depending on the particular song that was playing. Her facial expressions and her hands worked in harmony with specific segments of the songs. Sometimes she was smiling. Other times, she was teary. She was enjoying herself so much that we went to dinner thirty minutes later than usual.

Another highlight occurred after we returned home from dinner. We received a phone call from our daughter who had just returned from a trip to England and France with her seventeen-year-old twin boys. It was their first trip, and she was excited to tell us about it. Kate said only a few words but listened intently to Jesse as she recounted their experiences.

When I reflect on our day, I have to say it was good day. Looking back, I don’t recall a single time she asked my name, or hers, or where we were or anything like that. It was a day when she was not talkative but at ease and seemed to know me and her surroundings. She might not have, but I like to think that she did.

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More Signs of Change

I notice lots of little things that suggest Kate’s brain is undergoing more significant changes. If they were isolated things, I wouldn’t think much about it. It’s the accumulation of so many in a relatively short period of time that strikes me most. Consider the following things that have occurred over the past few days.

On the way home from dinner a few nights ago, she said, “My house or yours?” I said, “Yours.” I didn’t explore this any further, but this was something new. She often doesn’t recognize I am her husband or recognize our house, but I’ve never heard her refer to her house or mine. What was she thinking that prompted this? I don’t know. That’s true for many of the things she says or does.

Walking to the car after dinner last night, she said, “I wouldn’t want to have their job.” I asked who she was talking about. She said, “You know those people with the ‘stuffies.’” She knew that wasn’t the right word but couldn’t think of the word she wanted. She counts on me to know what she means. As usual, I just indicated I understood and agreed with her.

She was up early yesterday. I think she must have had a dream because she was worried about having to be some place. I assured her that she didn’t have any obligations and could go back to bed.

While she was resting on the sofa that afternoon, she said, “Do I have to go some place? A meeting or something?” She seemed quite concerned. I told her she didn’t have anything on her schedule. A few minutes later, she opened her eyes and pointed in the direction of the door to the kitchen and asked, “What’s in there?” I mentioned several things. They were not what she meant and seemed frustrated that I didn’t immediately recognize what she was talking about. I told her the kitchen was on the other side of the doorway and the laundry room to the right of that. Nothing I said gave her the answer she wanted, and she gave up asking.

She has also been talking in her sleep more than usual. She doesn’t say much. Often it is like a simple statement or answer to a question that someone in her dream has asked.

Her intuitive abilities seem to be in overdrive sometimes, but that is a good thing. It usually means she is deriving pleasure from things around her– flowers, plants, and trees in particular. Some of her aesthetic interests are a little strange, but they, too, provide pleasure. She takes greater interest in tidiness and the arrangements of things than in the past. She is often careful about the way she places her flatware, glass and napkin on the table at restaurants. Yesterday as we walked through the laundry room to the garage, she noticed a washcloth I had put out to dry. She liked the way it looked. A few weeks ago, she asked me to take a picture of the cloth napkin she had used at a restaurant. She had just dropped it on the table and thought it looked a little like a sculpture. Although I wouldn’t have thought about it until she said so, I agreed with her and took the photo. At her request, I take more pictures these days.

For years, she has not wanted to stay anyplace, including home, for more than a couple of hours. That was a main reason we started going to the café at Barnes & Noble in the afternoon. Now we usually chooses to stay at home most afternoons. On the other hand, sometimes in the morning she says, “Let’s get out of here.” I assume that is a time when she thinks we are staying at some other place than our home.

I believe the primary reason for wanting to spend more time at home relates to her resting more. She seems more tired these days. I notice, however, that it is not necessarily sleep that she needs. Yesterday, for example, she rested two hours or more with her eyes open and running her fingers through her hair. She often spends almost that amount of time doing the same thing after going to bed at night.

Something of greater significance to me is that she seems to be using her iPad somewhat less than in the past. I believe that relates directly to her feeling tired and frustrated with the difficulty she has working her puzzles. I attribute both being tired and frustrated to the changes going on in her brain. At the same time, she may be spending more time with her family photo books. She is occasionally confused when her photo books don’t work the same way as the puzzles on her iPad. She touches a photo and expects it to scatter into puzzle pieces. When it doesn’t, she doesn’t know what to do.

Despite these changes, Kate and I had a nice day yesterday. We didn’t do a lot, but we enjoyed our time together.