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More Confusion and Confusion

Shortly after midnight last night, Kate and I had what was almost a replay of a conversation we had yesterday morning. I had gotten up to go to the bathroom. When I got back in bed, I noticed that she was awake. She said, “Where are we?” That began another conversation that lasted until 1:35. She said she didn’t know anything. As I had done the night before, I said, “That must be scary.” She said, “Very.” From there I gave her my name and hers and our relationship. I followed that by lots of the same family information I had given the last time.

Several times she said, “I don’t understand why this is happening.” I told her I didn’t either but that it had happened other times and that she improved as we talked about our lives and family. This conversation was unusual in that she was able to grasp the change in her memory (or the way she felt) as I fed her information. At one point, I asked if I was overwhelming her. She said, “No, I can tell it’s helping.” She suggested that she was remembering a few things and that made her optimistic that her memory would come back. It’s been close to a year since she had her first experience like this.

At that time, it brought about a more intense emotional response. I described it as a “panic” or “anxiety” attack. This morning’s experience was not nearly as intense, but it had an element I had not heard since last summer. She made reference to her doctor’s telling her she might get better. She said the doctor also indicated that she might not. Nonetheless, she was encouraged last night. She also talked about the support she had received from friends. This time, however, she mentioned that her memory might not come back “all the way.” I told her no matter what I would be with her to help. We both said that whatever happens, we would deal with the situation, that we were good at adapting.

The conversation ended when she said, “I think I’ll go back to sleep now.” I asked if she felt relaxed. She said she did. The crisis was over. What is lingering in my mind now is that she seems to grasp that she has something that she won’t be able to conquer. She may improve, but the problem won’t go away. Once again, her intuitive thought processes are working. She doesn’t have a name for it or understand a way to beat it, but she knows something is wrong.

Just before 9:00 this morning, I saw on the video cam that she was starting to sit up in bed. I went to her. She smiled, and I walked over to the bed and sat down beside her. I was expecting that she would be back to normal again. She wasn’t. She was just as confused as she was earlier this morning. The difference was that she wasn’t in the mood to talk about what she was experiencing. She kept saying (not in rapid succession), “I don’t know what to do.” I asked if she would like to go to the bathroom. She asked why. I told her that she usually wanted to go to the bathroom when she woke up about this time. She repeated that she didn’t know what to do. I tried the same approach that had been successful in our two previous midnight conversations. She didn’t seem to pay attention. I think she was still tired and wanted to go back to sleep. I asked if she would like to see some pictures of her family. She didn’t, but I showed her a wedding photo of our daughter and brought in the “Big Sister” album to the the cover photo. She responded with a smile when she saw it, but she wasn’t ready to look at anything else. I asked if she wanted to rest a while longer. She nodded. I asked if she would like me to stay in the room with her. She did. That’s where I am right now. She opened her eyes a few minutes ago but is asleep again. We have a 12:30 reservation for lunch. I think I’ll let her sleep until 11:00 or 11:30 before waking her unless she gets up on her own.

I don’t like all the signs I have seen over the past week or two. This isn’t a change for the better.

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Not a Cheerful Day

Yesterday was a nice day, but Kate was not in a cheerful mood. That was most obvious in her conversation. It began first thing in the morning. She didn’t give me a smile when I went in to get her up. Although she didn’t ask, I am pretty sure that she didn’t recognize me as her husband. On the other hand, she wasn’t alarmed. She was more independent. She didn’t want my help when I gave her my hand to help her from the bed. She told me she could do it herself. As I walked her to the bathroom, she changed her mind and wanted to hold my hand. Once in the bathroom, she responded to me as someone she recognizes and trusts.

We had lunch at Casa Bella with one of our associate pastors and his wife. She has always been drawn to him, but she no longer remembers him or his wife. I reminded her of how much she enjoyed his preaching and teaching. It didn’t seem to ring a bell. The lunch went well. We enjoyed being with them. Kate talked very little. I don’t believe it related to her not remembering them. I think she was just not in a talkative mood yesterday.

Her “Big Sister” photo album was the hit of the day for her. She took it with her when we went to lunch but left it in the car. We came back to the house where she spent some time looking at it before and after our appointments for haircuts and again after dinner before working on her jigsaw puzzles.

She didn’t talk much going to and from our hair appointments or lunch and dinner. Neither did she say much while we eating last night. She didn’t seem depressed at all. She enjoyed herself. There were times when I talked to her and expected a response but didn’t get it. As I think about it now, she hasn’t been very talkative over the past week or so. This comes after a few weeks when she has been. I don’t have an explanation or even a guess as to why. It’s one of those many mysteries. I do know that I like it much more when we have conversations even if they are repeats of the same ones we always have.

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Insecurity at Casa Bella

Yesterday was not a typical day. Kate seemed to be in a cheerful mood, but she was also irritable off and on throughout the day. I observed that very early when I told her I thought she should shower before getting dressed. It had been four days since her last one on Sunday. Each of the previous mornings I had encouraged her but let it go when she resisted. I did the same yesterday.

We commonly hear about anger and violence as symptoms of people with dementia. There is another school of thought that suggests that such behavior is not a direct symptom itself but a bi-product of symptoms like confusion and misperception. According to this interpretation, anger and violence are or can be natural responses to the way the brains of people with dementia work (or don’t work).

If I employ this line of thinking to what happened between Kate and me yesterday, I would say that Kate wasn’t just in a bad mood, she may have been responding to the way I told her it would be good for her to take a shower. In fact, I don’t believe I was as gentle in my suggestion as I usually am. If I had thought of a gentler way to do it, she might have willingly agreed to shower. Instead, she dug in her heals. I didn’t push her.

I told her I had her clothes for her, and she thanked me. When I started to help her dress, she was resistant. She said, “I can do that myself.” Ultimately, she had to have my help with her bra and her pants, but she was determined to be as independent as possible. As I helped her, she snapped at me. Then she felt bad and said, “I’m sorry. I shouldn’t have said that.” She clearly understood that was not typical for her. I think her reaction related to my not being gentle enough in my attempt to get her to shower.

While she went to the bathroom to brush her teeth, I went to the kitchen to get her morning meds. Shortly, I heard her call, “Daddy!” I called back from the kitchen, but she didn’t hear me. She called again. “Daddy!” I walked toward the bedroom and said, “Here I am.” This was a time when I thought it was best not to tell her that I am her husband. When I reached her, she looked a little frightened and said, “I didn’t know where you were.”

As we drove to lunch, I played some music that she likes. She didn’t talk much. When she did, it was to comment on the music. She enjoyed it. We had a pleasant lunch. It was as if the problems getting up had never happened. The afternoon also went well. We spent a couple of hours at home. She worked on her iPad a while and then rested on the sofa. After her rest, she wanted something to eat. It was ninety minutes before time to leave for opera night at Casa Bella. I took her to Panera for a bagel. We got home in time to change clothes and leave for dinner. That’s when another problem occurred.

I made a complete change of clothes and had picked out a different top for her. She didn’t want to change and snapped at me. I tried not to push her. She consented, but she wasn’t happy.

As usual, she enjoyed the evening of music. The man with whom we share a table commented several times about her enthusiasm. He and his wife got to observe an example of Kate’s memory problems when she looked at me and said, “And what is your name?” I said, “Richard.” She frowned. I knew that meant she wanted my full name and said, “Richard Creighton.” She frowned again. I said, “Richard Lee Creighton.” That was the right answer.

The biggest problem of the day occurred just before we left. I was seated across the table from her. The seat to my left was empty. I was seated with my back to the singers and moved to the empty seat and turned halfway to the right so that I could see them. When the program ended, I looked at Kate who was disconcerted. She looked at me and said, “Is that you?” It turned out that she had lost sight of me even though I was only four feet diagonally across from her. She was quite relieved to see me.

The man in the seat to my right got up, and I started to follow him out. He stopped to help his wife with her walker. The two of them were standing between Kate and me. I chatted briefly with a man at the next table. When I finished, I went around the couple to see Kate. That’s when I saw that the couple and another man who had been at our table were trying to comfort her. She had been very disturbed because she didn’t know where I was. When she saw me, she said sternly, “Don’t ever do that to me again.” I am sure the three people who were trying to soothe her were shocked that these words expressed so strongly came out of the mouth of someone they had no doubt viewed as very soft spoken.

It amazed me that she had become so anxious in such a short span of time. It couldn’t have been more than a couple of minutes. Of course, with no perception of time, it could have seemed much longer to Kate. I was standing within six feet of her the whole time, but she couldn’t see me. I apologized and told her I would never leave her. As we walked through the restaurant to leave, she continued to be a little upset. My apology must have been too light-hearted because she said, “This is no laughing matter.” By the time we got to the car, she was fine. I played several pieces of music she loved on the way home. That made her even happier. The crisis was over.

It is obvious that Kate’s insecurity is increasing and that I am her “security blanket.” I also think the events of the day illustrate how much her emotional reactions are tied directly to her perceptions of the events around her. Her rational abilities are not working well enough understand what is going on. That misunderstanding leads to insecurity that is sometimes expressed in behavior that is not typical of her.

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Feeling Insecure

The other day I said I had been involved in a series of Twitter messages about people living with dementia and their need to feel safe and secure. I had to admit that I hadn’t given a lot of thought about that. Perhaps that is because Kate has appeared to feel both safe and secure.

I am beginning to pay more attention now. Kate can take credit for initiating that interest when she periodically says “I feel safe with you.” At first, I wondered if she felt some special threat from a person or people around her. After some reading and reflection, I began to consider how uneasy one could feel without a memory. Judy Cornish, the author of The Dementia Handbook, tweets quite a few messages about the importance of safety. Her work has sensitized me even more.

Recently Kate has exhibited more signs of insecurity. Even in the past week, she has seemed particularly needy. Like everything else, this didn’t arise suddenly. For years she has wanted to follow me rather than beside me when we are out. The most common occurrence is in restaurants. She doesn’t want to follow the hostess. She wants me to do it, and she will follow me. At first, I felt a little awkward but quickly adapted. That has its own problems. She frequently falls behind or fails to see me turn and loses me. For that reason, I keep looking back to see that she is still with me.

As noted in previous posts, she started following me in the house last spring or summer. That is when she was no longer able to remember the layout of the rooms. She asks me where the bathroom is every time she needs it. That occurs even when she is seated in a chair in our bedroom that is two feet away from the bathroom. On two occasions in the past few days, she has wanted to hold my hand as we walked through the house.

In the past, she often objected to holding my hand because she saw that as a sign of dependence. Even now, she sometimes rejects my hand when offered. The more common pattern, however, is her asking to hold my hand. This began when she was walking up and down stairs or up and over curbs. Now it seems to occur in public places where she fears she might get lost. I know this because she has specifically mentioned it. Previously, she didn’t appear to be fearful of getting lost at all.

This insecurity extends to more mundane things than getting lost. At restaurants, she has periodically asked me if her glass of tea is hers. That is becoming much more routine. When Ken and Virginia were here, they got to observe that several times. She doesn’t want to do the wrong thing and wants to make sure she has the right glass.

At home, she asks, “Where do you want me?” or “Where should I go?” When I put her medicine on the table or island in the kitchen and tell her these are her pills, she forgets and asks if they are hers or if they are for today or tomorrow. After bringing her nightgown to her, she doesn’t start to put it on right away. When she is ready for bed, she asks if it is all right to put it on. She asks if she should get in bed. The list could go on and on. Once again, she doesn’t know what to do next and doesn’t want to make a mistake. She depends on me to protect her from doing the wrong thing.

I’ve also noticed signs of insecurity when I leave her with a sitter. Sometimes she asks if I can stay or go to lunch with them. Other times she asks if she can go with me. Recently, she told the sitter she would rather rest than go to lunch right then. She ended up resting the entire four hours I was gone, and she hadn’t had breakfast. I think Kate might have felt insecure going out with her. With the same sitter yesterday, it went quite well. She wasn’t the least bit bothered when I left and seemed fine when I returned. After Cindy left, however, she said felt better when I was with her.

The most dramatic example of her insecurity occurred Sunday before we were to attend a musical concert. I dropped her and a friend off at the theater while I parked the car. When I returned, I discovered that she felt sick. I decided we should leave. She didn’t want me to leave her while I went back for the car. She seemed to get better on the way home. She rested at home and never showed any further signs of a problem. I do know that she needed to go to the bathroom. Apart from that, I never noticed any other signs of illness. She was fine the next day. I think she just felt insecure with our friend whom she can’t remember.

One other little thing occurred yesterday morning. As I led her from our bedroom to the kitchen, I automatically took her hand. Often, when I do this, she resists. This time she held it firmly all the way to the kitchen. Shortly thereafter, we were on our way to Panera before going to her dermatologist. She thanked me without saying why. I thanked her and said, “I love you.” She got a sad look on her face and tears welled up in her eyes. As we turned left into the street leading to the restaurant, she grabbed my hand. The turn must have been unexpected, and she was frightened. It was less than a block to Panera, but her fright continued.

Last night at dinner she wanted me to sit on the same side of the booth with her. We have done that a number of times in the past, but this was quite unusual for her to request that. The way she asked it seemed like she would feel better if I sat closer to her than across the table.

All of these things and more have made me more mindful of how significant being safe and secure can be to someone with dementia. I need to be especially sensitive to this in the days ahead.

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A New Marker on Our Journey

This may not be a big thing for anyone else, but it is symbolic of the recent changes in our lives. As we left the car to enter Panera this morning, I said, “We’re going to get you a muffin.” Kate said, “What’s a muffin?”

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Ken’s Arrival

Like so many things, especially when it comes to airline travel, Kate’s brother, Ken, and his wife, Virginia, experienced a delay in their arrival yesterday. We were to have had dinner with them last night, but their flight didn’t get here until close to 9:00. I regretted not having that time with them but invited them to drop by our house on the way to their hotel.

They arrived at the house just after 9:30. Kate and I were in the family room when I heard them at them at the door. I got up to greet them. Kate stayed in her chair where she was working a puzzle. Ken and Virginia entered the family room ahead of me and said hello to Kate. They hugged, and she greeted them warmly. Everything seemed perfectly normal. It was a beautiful reconnection with her brother.

We talked about the day’s travel experience and laughed. They were both able to take it in stride. We caught up with their children and grandchildren. We talked a little about our courtship and a letter that her mother had sent to my mother talking about our “friendship.” There were times when Kate was confused and asked for clarification and spoke very little. Otherwise, she was enjoying the conversation along with the rest of us.

After an hour, Ken and Virginia left for their hotel. As soon as they walked out, and I had closed the door, Kate whispered to me, “Who are they, and what are they doing here?” I told her their names. She didn’t recognize them. Then I explained that Ken is her brother, and Virginia is his wife. I was floored that Kate had not realized this. She must have spent the entire time without knowing who they are.

This experience is a good illustration of a couple of things. First, it shows that even someone (me) who knows her condition best makes mistakes in judgment. I know that her memory is gone, but in many ways she still seems very normal to me. That often leads me to expect more of her than I should.

Looking back, I see that I didn’t handle the situation the way I should have. We had been sitting in the family room for over an hour without my reminding her that they were on the way and would be here soon. Of course, she forgot about our earlier conversations about their upcoming visit. I can’t remember exactly what I said when I heard them at the back door. It was probably something like, “They’re here.” That would mean nothing to Kate. In my haste to welcome them, I didn’t even walk ahead and tell Kate, “Your brother Ken and Virginia are here.”

The experience is also an example of how poor Kate’s memory (rational ability) is and how well she is able to handle a social situation through her intuitive abilities. Ken and Virginia are well-informed about Kate’s current decline. I am sure they noticed some changes since their last visit. On the whole, however, my guess is that they didn’t sense just how poor her memory is. I will be eager to get a chance to find out today.

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Confusion Yesterday Morning

Kate woke up around 7:30 yesterday morning to go to the bathroom. She seemed rather alert. I didn’t ask, but she acted as though she knew exactly who I am. I realize, however, that appearances don’t necessarily jibe with reality. She went back to bed and slept until 10:30. This time she was confused.

I asked if she was ready to get up. She said, “I don’t know.” She didn’t look disturbed or frightened. It wasn’t the way she has been when she has had anxiety attacks. I asked if I could help her. She said, “I don’t know.” No matter what I said she said “I don’t know.” Then I suggested that she take a shower and that might help to wake her up. She didn’t want to shower.

I took another tack. I told her she should get dressed, and we could go to the family room where I might be able to show her something that would help. As she was dressing, she asked my name and her own several times. When she was finished, we went to the family room where I picked up the “Big Sister” album. We spent about about twenty minutes looking through it before going to lunch. She didn’t recognize the cover photo of herself with her brother. When we opened to the first page of pictures, she didn’t recognize herself, or her parents. As she has done in the past, she didn’t recognize her father after I identified her mother who was sitting with him. Although she didn’t show any improvement in recognizing her family, she did seem more comfortable than before. Her intuitive abilities were working.

As we drove to lunch, she seemed normal, and I was beginning to think she knew who I was. When we walked from the car to the restaurant, she asked my name. Similar moments like this over the past week suggest that she is close to losing the ability to remember my name and relationship to her. I am not expecting this to happen suddenly, but it is becoming more and more difficult for her to remember my name. I know it will only get worse. I still take satisfaction that she recognizes me as someone she trusts.

Yesterday on Twitter I exchanged several message related to the important of feeling safe among those living with Alzheimer’s. I am also encouraged that she continues to say that she feels safe with me. When this first started occurring, I didn’t know what to make of it. The more I have watched her decline and the more I have read, I have come to realize how frightening it must be not to where one is, who one is with, and “who I am?” I don’t think I would feel safe either.

When we got home, we had about twenty minutes before our sitter, Mary, arrived. Kate wanted to know what she could do. I showed her the three-ring binder with a lot of personal and family information. She was interested. When I left for the Y, she and Mary were seated side by side on the sofa going through the information. I was encouraged.

When I got home Kate was resting on the sofa while Mary sat in a chair across from her. Mary said that she and Kate had spent most of the time looking through the binder and then a couple of the photo books. She said Kate had been resting about an hour.

The rest of the day was uneventful. Kate indicated she was glad I was home and wanted to know “What next?” I told her it was time for dinner. When we returned home, she worked on her iPad until time for bed. She needed my help periodically but never showed any sense of frustration.

She got to bed a little earlier than usual but was still awake when I joined her an hour later. This morning she was up at 8:30 and took a shower. She didn’t show any signs of confusion or grogginess and acted normally toward me. I had her clothes out for her, but she went back to bed where she is resting/sleeping now. We don’t have any special obligations today. I will let her sleep until 11:00 if she doesn’t get up earlier.

The big event of the day actually comes tonight. Kate’s brother, Kevin and his wife, Virginia, are flying in for a short visit. Their flight doesn’t arrive until 7:00 this evening. They are renting a car and will meet us at the restaurant where I have made dinner reservations. Kate has changed a good bit since their visit in the fall, but I am optimistic that it will go well. I will be eager for the two of them to have some time together as they did on their previous visit. We have plenty of photo books to inspire good conversation. I am looking forward to having them with us.

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Emotions

Most of the time since her diagnosis, Kate has been more sensitive to a number of things than she was in the past. For example, she was more easily frightened. I learned rather quickly to say, “Hello, I’m home.” as soon as I came in the house after being away. She has also been bothered by loud noises, especially sudden ones. Now that I have become more aware of the importance of her intuitive abilities, I am also paying more attention to her emotional responses to almost everything.

As a result, I have noticed a significant change in her emotions as she loses more of her rational abilities. She expresses her emotions in a stronger way than she used to. Here are several examples.

Since we eat out all the time, I notice this most often in restaurants. It’s not the general noise level. It’s the sudden noises that occur. The most typical example would be in a place like Panera where one of the employees comes around to pick up all the dirty dishes. He makes noise as he stacks them. The other night at Bonefish we were seated near the bar when the bartender knocked over a couple of glasses. Kate responded with a loud noise of her own. Several people at the surrounding tables took note. I told them she was all right. It could have been a time for one of my Alzheimer’s cards, but I didn’t think this situation called for that. Kate loves children, but sometimes they squeal or cry. She jumps and makes her own noise that is usually audible for those nearby. All of these things have been an issue for a long time. She is even more sensitive now, and her responses are more noticeable to others.

She is frightened by other things as well. She is very cautious when we walk up and over curbs and across streets and parking lots. One of the restaurants we frequent has a flagstone walkway leading to the restaurant. She often takes my hand and comments about how “dangerous” it is. On several occasions in a restaurant, she has mentioned how dangerous a welcome mat is. I think the big issue is her eyesight. I think she has a problem with her depth perception and thinks the shapes and colors represent different heights rather than being flat or close to it.

Other things generate more positive responses. Kate’s interest in children has increased lately. She almost always stops to say hello to the children she sees. A typical situation would be on our way in or out of a restaurant. In both cases, I usually lead the way. I look back frequently to make sure she is still with me. Often I see that she has stopped to talk with a child. She always tells the parents how adorable the child is. Like other things, this is not new except for the intensity of the emotion that she expresses.

As large a role as music has played in our lives, Kate seems to get even more pleasure now. I notice this most when we are in the car. After leaving Casa Bella the other night, I played a CD of Beethoven’s Piano Concerto No. 5. The first movement ended as we got home. On the way to lunch the next day, I played the second movement. We hadn’t heard but a few notes, and she said, “Oh, that is so beautiful.” It is beautiful, but this immediate response is something I would never have expected before. I’m not even sure that she recognized the piece. Of course, I am learning that her memory for music is far greater than I had thought. I am amazed at her recognition of so many pieces of popular music, including some lyrics, from the 50s and 60s.

I have alluded to her audible responses to music we hear at live performances like those at Casa Bella. The other night she reacted audibly to almost every song. She wasn’t loud. Only those sitting next to her or across from her could hear, but I keep wondering if this might become a problem in the future. It’s not a problem at Casa Bella since all of the people with whom we sit are aware of her Alzheimer’s. It could be a problem elsewhere.

Two other examples of her more intense emotional reactions occurred during the past week or two. One of those involved the fire at Notre Dame. The first time I mentioned it to her she had a strong reaction to the news. It looked as though tears were about to flow. Later she caught some of the TV news. By that time, she and I had talked about it several times. She never remembered from one time to the next. Each time, whether the source was the news or our conversation, she was quite moved.

Another illustration involves her parents and occurred in two different situations. When she has asked about her parents, I have never tried to hide the fact that they died some time ago. On at least two occasions recently, she has been very sad when I told her. That has led me to be more careful. When she asks where her parents are, I usually say, “In Fort Worth.” There are other times I tell her “they are gone, but they lived long and happy lives.” So far that seems to work. When she talks about them as if they are alive, I don’t tell her otherwise.

The other times she has an emotional reaction to them is when looking at one of her photo albums. In these cases, she is not sad because they are no longer alive. Her response is sign of her love for them. Sometimes she responds to me in a similar way when I tell her I love her. She gets a sad look on her face and tears well up in her eyes.

Alzheimer’s has definitely made her more emotional in her reactions. The fortunate thing is that she has not exhibited the kinds of emotional reactions that people sometimes associate with dementia. She has had moments of irritability that are unlike her, but I haven’t seen the slightest indication of anger or violent behavior. On the contrary, she frequently apologizes after she has said something that is a more irritable response than is characteristic of her.

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Growing Confusion

I can’t say that I am observing any new symptoms of Kate’s Alzheimer’s; however, I sense that she is sinking deeper into confusion. The things I report below may sound familiar to you. Just try to imagine that the way she looks and the way she says things suggest something more serious than before.

One of those things is a more consistent failure to realize she is at home. She is routinely ready to take her toothbrush and toothpaste whenever we leave the house. I think she believes we are leaving a hotel. It is becoming commonplace for her to ask where we are when she wakes up.

It also involves an increase in the frequency with which she doesn’t know I am her husband as well as the length of time it takes for her to accept that I am. As we walked from the car to the restaurant for lunch day before yesterday, she said, “Who are you?” I said, “Richard Creighton.” She said, “I know that. Who are you?” I said, “I’m your husband.” She said, “Oh.” There was no other indication of surprise, uneasiness, or enthusiasm. She got the information she wanted and accepted it. While we were eating, she said, “Are you the owner of this place?” I don’t think I have mentioned this before, but she often attributes things to me with which I have no connection. The most common one occurs when we are listening to music in the car. She often says, “Is that you singing?”

At lunch yesterday, she asked my name and then hers. Then she asked, “Who are you?” When I told her, she didn’t believe me. I decided to tell her about our first date and our courtship while I was working at the funeral home. As I recited these experiences she began recognize them. Then I told her we would celebrate our fifty-sixth anniversary next month. I don’t mean to suggest that all her memories came back. It was just enough for her to accept that we are married. Then she asked if we have children.

She is much needier now. She is comfortable with Mary, our sitter; however, when I arrived home that same afternoon, Kate was especially glad to see me. She asked where we were and wanted to get away. She was was relieved when I told her we were at home. I don’t think she feels as comfortable asking Mary where she is.

On the way to dinner that night, she told me she really needs me. She has said this many times before, but it seems different now. Her facial and vocal expressions convey a greater need than the way she used to say it.

The other night after dinner, she wanted to know what to do. This, too, is becoming more common. I told her she could work on puzzles while I watched the news. She did that for almost an hour. Then she got frustrated. I suggested she look at her “Big Sister” photo album. She did for a while but stopped when I put on a DVD of Les Miserables.

Last night as we walked along the sidewalk to Casa Bella, she said something nice that prompted me to remind her that we have been together a long time. She asked how long. I told her almost 56 years since our wedding. She gave me a funny look and said, “Whose wedding?” I repeated that it was ours. She said, “No. You shouldn’t even joke about that.” This time I didn’t try to convince her as I did earlier at lunch.

There are lots of little things that suggest her increasing dependence. One of those is wanting to hold my hand more often than in the past. She frequently says, “I don’t need to, but I feel better.” She also wants my hand to help her in and out of the car and accepts my help buckling her seat belt. During dinner last night, she repeatedly asked me if her iced tea and water was hers. This is not new, but it is more frequent now. She is unsure of what is hers and what is someone else’s. She recognizes that she makes mistakes and doesn’t want to drink one that belongs to another person.

I have been eager to celebrate the many good times we’ve had since Kate’s diagnosis. I’ve also tried to be honest about the problems we have faced. We still have many good moments, but there is no escaping what lies ahead. It saddens me deeply to watch her slowly drift away like this, but I am heartened by hearing from others about precious moments with their loved ones who are farther along on this journey than Kate. In addition, I feel a greater resolve to make the rest of her life as fulfilling as I can.

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A Few Things From Yesterday

Kate woke up at 5:00 and said, “Hey.” I looked over and saw her looking at me. I asked if she needed help. She said, “Where’s the thingy?” I asked if she wanted to go to the bathroom. She did. After she got back in bed, I was wide awake and decided to stay up.

Around 8:30, I noticed on the video cam that she had gotten up. When I reached the bedroom, she was just coming out of the bedroom. She seemed awake. I asked if she was planning to get up for the day. She said she was. I asked if she was going to take a shower. She shook her head to say no. Then she said, “Do you want me to take one?” I told her it would be a good idea, that she had missed one the day before. She said, “Okay.”

After the shower, she went back to bed and slept for an hour before I woke her. She wasn’t eager to get up but did so anyway without lingering or protesting.

I took her to the hair dresser’s at 2:00. I was about to offer her my hand as she stepped onto the walkway but realized there was less than a two-inch elevation from the pavement. I said, “I was going to offer you my hand, but there’s not much of a curb here.” She took my hand and said, “That’s all right. I wouldn’t know where to go without it.”  Afterwards as we walked out, she said, “Take my hand.” I did, and she said, “I don’t really need it, but I feel more secure.”

I see signs of her need for security in other things she is doing. A good example is that she more frequently asks me what she can do when we get home. I guess it is getting harder for her to remember what her options are. That is similar to her waiting to follow me each time we get home. She never remembers where to go. With few exceptions (I can’t remember any.), she always asks me where the bathroom is.

We had about two hours to pass before leaving for dinner. We spent the first hour relaxing in the family room. She started out working on her iPad. After less than thirty minutes, she put it down, closed her eyes, and rested in her chair for another thirty minutes. I told her we had another hour before dinner and asked if she would like to go to Barnes & Noble. She hesitated. It looked like she thought I might want to go. I told her I was fine staying at home. She did as well. This is becoming more common now. For such a long time, she rarely wanted to spend much time at home. Now as she is feeling the need for rest, she is less likely to accept an opportunity to go out. It’s just one more sign of how she and our lives are changing.

We ended the day with dinner at Bonefish Grill where we had a good social experience. We ran into a man who was a very good friend and admirer of my dad. They had both been students in a writing class for several years. They struck up a friendship that lasted until Dad’s passing in 2013. It was an interesting relationship since this friend is just one year older than I am and 26 years younger than my dad.

He was with his significant other who has dementia and just moved to Knoxville from New York City. She has been quite involved with the performing arts and had a neighbor with her who operates a ballet school. The conversation broke down into one between the dancer and me and Kate and our friends. I was glad to see Kate so actively involved in conversation. I don’t know what she said, but at one point she turned to me and asked how long we had been married. Our friends had obviously asked her, and she didn’t know. We both left the restaurant feeling energized. Eating out continues to offer us such experiences.