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A Good Day, But Not Without Confusion

At 7:45 yesterday morning, I heard Kate make a sound and went to the bedroom. She was awake and smiled at me when I entered the room. I sat down on the bed beside her. She was wide awake, not at all groggy. She was also in a cheerful mood. It was a great way to begin the day.

I assumed that she just wanted to get up to go to the bathroom, but I soon discovered that she was ready to start the day. As I helped her dress, she wanted to do as much as she could and said, “I’m smart you know.” That began a conversation in which she said that women are as smart as men. She questioned whether I believed that. I told her I did. She said, “Good. You gave the right answer.” She said, “Someday women are going to be doing the same things as men.” I told her there were already changes being made. I told her about the enrollment numbers of women in college and in several different fields like medicine, law, and business. She was surprised and pleased. This was not the first time she has brought up the topic of the roles of men and women and specifically the discrimination women have faced. It comes up periodically.

We got ready leisurely and arrived at Panera at 9:00. As we walked in, we stopped to talk with several friends who regularly come for coffee and conversation after morning mass. Because we don’t get to Panera very often, it was especially nice to visit with them. Kate was unusually chatty and funny. One of the men said something about himself. A woman seated a couple of seats from him quickly contradicted him. Kate said, “You must be his wife.” Then he said something to which Kate had a funny comeback. I wish I could remember what it was. It was the kind of thing you might expect from someone who jokes frequently. It was clever and so quick. We all laughed. It was especially funny coming from Kate since it was something unexpected. She didn’t sound at all like someone with dementia.

After an hour, she was ready for home. That didn’t surprise me. She had missed at least two hours of her normal sleep by getting up so early. I also expected she would rest when we returned home. That proved to be correct.

It was a day for the sitter and my day for the Y and to have coffee with my friend, Mark Harrington. We arrived home from lunch a few minutes before Mary arrived. She came in and greeted Kate while I brushed my teeth and got myself ready to leave.  When I told Kate I was leaving, she said, “You’re leaving?” This is now a common question, but she doesn’t seem as concerned as she often does. I told her I would be back. I left with a good feeling.

Upon my return home, Mary was seated in the family room. I usually expect to see Kate resting on the sofa, but she wasn’t in the room at all. Mary called to Kate to let her know I was home. She was in the back of the house. I assumed she had been resting in one of the other bedrooms, but Mary said that she had been up a while and had been walking through all the rooms in the house. She told me that she had also gone outside on the patio. Then Kate walked into the room and said, “Isn’t this a great room?” I recognized right away what was going on. For well over a year she has often thought our house belongs to somebody else and that we have been staying here. For most of the past two or three days, however, that sense has been almost constant. Her going from room to room yesterday reminded me of the one-hour “tour” she and I took of the house about a year ago when she didn’t recognize it as our home. We went to dinner right after Mary left. As we pulled out of the garage, Kate said, “Is this the first time you’ve been to my school?”

She did a little better on her iPad last night but still had problems. She didn’t get into the store as much because she asked for my help before hitting the button that takes her there. Although I spent as much time helping her, I felt better because she didn’t experience the frustration that she had the previous night. I am better able to take the demands on me to help her than I am to see her discouraged.

It was also a day when I felt she recognized me as her husband. I could be wrong. I never asked, but she never said anything to make me think she didn’t. On the way to lunch, she said, “I like you. I like being with you. I even love you.” She called me by name once in the afternoon. She also expressed her appreciation to me for being patient with her. This reminds me of something she said at lunch the other day. She had torn a paper napkin into three pieces and placed her glass of tea on one, her knife and fork on another, and her bread plate on the third. I said, “It looks like you’re all ready for your meal.” She said, “Thank you for being so understanding of all the funny little things I do.” I wonder, “Does she recognize these things really are unusual?” I would love to know all that is going on in her brain.

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Confusion and Frustration

Yesterday was unusual in that the day began without a lot of apparent confusion. I mean that she was happy from the start and didn’t ask my name or hers or where we were the entire day. On the other hand, she experienced a good bit of confusion and frustration late in the day.

As often happens, she asked what she could do when we got home from lunch. I gave her the usual options of working on her iPad or looking at her photo books. She chose the iPad and walked over to the sofa. She asked if she could lie down. I told her that would be fine. Then she wanted to know if she could take off her shoes. Again, I told her that was fine.

This was about 2:00. She spent a little over two hours resting. I believe she was awake most of the time. At least once, it looked like she was asleep. Shortly after 4:00, she looked over at me. I asked if she would like to go out for ice cream. I was sure she would say yes, but she said no. She wanted to continue resting.

After another ten minutes, I asked if she would like for us to look through one of her photo books together. She liked that, and we spent the next forty-five minutes looking at the album of her mother’s family. This time was different. She was really working to remember who each person was as well as all the accompanying information as if she were preparing for a test. Since she was unable to remember any of these things for even a few seconds, she kept asking me to repeat what I had just told her. We spent a good ten minutes just trying to learn the names of the four members of her mother’s family whose picture was on the cover. I think we only got to move forward because I flipped to the opening page, and she focused on it. Despite the trouble she was having, we went through the entire book before I suggested we go to dinner.

After dinner, she usually wants to remain in the family room for an hour or so before going to our bedroom. Not so last night. She wanted to go directly to the bedroom where she began to work on her iPad.

She quickly ran into problems. Usually the most common problem is her getting into the store when she wants to get a new puzzle. She has a hard time remembering that all she has to do is touch one of the puzzles that are pictured. Instead, she touches a button in the top right-hand corner of the screen. That takes her to the store. This happened several times, but the bigger problem was simply figuring out how to put the pieces in their proper places.

We both became frustrated when I couldn’t explain that some pieces have a flat side that goes next to the edge that defines the area where the pieces should be placed. I was never able to get her to understand. When I tried to show her the line that makes a frame around the space where the pieces are to go, she simply couldn’t see it. This is another instance in which her vision is a major part of the problem. It was more than that, however. She couldn’t grasp that the flat side of a puzzle piece must go along the edge of the frame/border. Finally, I suggested she look at one of her photo books.

I went to the family room and brought back the “Big Sister” album. It has always been a winner. Kate’s interest begins with the cover photo. She recognized the two children as her and her brother Ken. I thought we might be off to a good start except that she didn’t comment on their smiles. They are normally the major drawing point for her.

She looked at the picture a moment. Then she asked me what she was supposed to do with it (the photo album). I said, “Just open it and look at the pictures.” She said, “How do you do that?” (She occasionally gets confused about books or magazines. She thinks they work like her iPad. Sometimes she is confused about opening her iPad as well.) I opened the book. She asked, “What do I do now?” I said, “This is a book of family photos. You just look at them and then turn the page to get other pictures.” She said, “Show me how.” I knelt down beside her chair and asked her to look at the pictures on that page. She looked, but she had a blank stare on her face. I couldn’t detect any sign of recognition or interest. It was as though all she could see was a page with a bunch of stuff on it, something I understand is a common experience for someone with dementia.

She wanted my help, and I proceeded to express the comments that she usually make when she has looked at the album on previous occasions. I was careful to talk about the smiles or the photos where there were no smiles. I identified each of the people in the pictures. As we focused on each picture, she kept wanting to touch the picture the way she touches the screen of her iPad. She couldn’t understand that the pleasure she could get from the photos was just looking at them. I tried to help her for about ten minutes before she said she was tired and suggested she might be able to understand better in the morning.

I helped her get ready for bed and put on a Barbra Streisand album that she likes. I left the room for a few minutes. When I returned, she said something about the woman. I would have thought that she was talking about Streisand because she often asks who is singing, but it sounded like she was talking about a woman who was in the house. I asked her what woman she was talking about. It was Streisand after all. She told me she had been talking to her. It is not unusual for her to ask me if I am the one singing when she hears a man’s voice. I guess she thought Streisand was in the room with her. I didn’t try to get her to explain any further.

The experiences of the day were further evidence (as though I needed it) that Kate is on a steeper decline than in the past. I was quite troubled by her difficulty with her puzzles and the photo book. These have been two great sources of entertainment for her. I am sure that working on the iPad will be a thing of the past in the upcoming weeks or months. I hope I am wrong. I am more optimistic about the photo books. As she uses the iPad less, she may experience less confusion about what to do with her photo books. In addition, I expect her interest in family will continue a long time to come.

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Another Interesting Conversation

After dinner two nights ago, Kate took a seat with her iPad in the family room while I watered a few plants on the patio. When I came back in, she had closed the iPad and was leafing through a magazine. She looked disturbed, and I asked her about it.

She said she didn’t want to talk about it then, but she was facing a decision. I asked if she could just tell me what the decision was. She said she wasn’t ready but that she would like to talk with me later. I held back a moment. She continued to sit in her chair with her head to one side and resting on her hand. She was very absorbed in thought.

I tried very carefully not to push her, but I repeated how much I would like to be of help. Again, I asked if she could just tell me what kind of decision she was trying to make. Gradually, she started talking. She began by saying, “I really want to help people.” That led her story to unfold, but not in an orderly fashion nor could I understand everything.

I quickly realized that she had imagined having an experience with someone. She told me she “knows” a woman who is trying to help children showing signs of getting into trouble. I wasn’t at all surprised about the expression of her desire to help people, but I was impressed with the thinking she was doing about the problem of helping the woman and the children and how to address it most effectively. She said it was not an easy thing to do and would require a lot of coordination. She wanted us to think about people we could bring in to assist in the planning and implementation of the program. She was also concerned about the time frame. She said there is a lot of planning that needs to be done before taking any action; however, she felt that there could be a danger of not acting as quickly as we need to. We (she) talked about twenty minutes before she seemed to slow up. I told her she seemed to have a grasp of the situation and the challenges she would face. I suggested that she might think overnight on what we had discussed and just relax a while before going to bed. She agreed, and that ended the conversation. As I suspected at the time, it seemed to be forgotten yesterday if it wasn’t before she was asleep that night.

The experience made me think of something that has crossed my mind before. She recognizes how little she is able to do on her own. Occasionally, she says something that indicates a desire to do more to be useful rather than just working on her iPad. Sometimes she helps me with little things like making up the bed. It would be a far cry from launching the kind of program she talked about the other night, but I could enlist her help with other things like the laundry and other household chores. I have often thought of some type of volunteer work, but most of those opportunities require someone that can be counted on to be consistent in showing up. That could be a problem. I’m going to continue thinking about possibilities.

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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.