Not Quite Herself Yesterday

When I got home yesterday afternoon, I was eager to see how things had gone with the sitter. Kate seemed so disoriented that I hated to leave her. I left a DVD of Les Miserables for Mary to use if they wanted to watch it. They did watch it, at least Mary did. She said that Kate watched a while and then took a nap. They had just returned to the family room from our bedroom before I arrived. Mary said that Kate seemed to enjoy it before deciding to rest.

After Mary left, Kate said she was glad to see me and then asked my name and her name. Then she asked if we had children. When I said yes, she wanted me to tell her about them. We continued the discussion as we drove to dinner. I mentioned something about our grandchildren. When I told her their ages, she was floored.

We Apart from asking questions about us and our family, she was rather subdued today. She didn’t say much at dinner nor after we got home. The DVD of Les Miserables was still in the player, so I backed it up and played the last fifteen minutes for her. She continued working on her iPad without showing much emotion. I have tried to be very upbeat with her, and she has responded momentarily. It didn’t last, however.

Forgetting Les Miserables

We went to Panera for lunch today. In the car, Kate asked my name. After telling her, I mentioned Jesse. She said, “Who?” I said, “Jesse is our daughter.” She said, “What’s her name again?” I told her. Then I told her the names of her husband and their sons. At lunch, she asked my name at least three or four times. She asked her father’s name and her own.

I told her that this afternoon I was going to meet with our insurance man who is retiring and wanted me to meet the man is taking his practice. I also mentioned a dental appointment after that. Then I told her that Mary would be staying with her and that I had set up the DVD player for them to play Les Miserables if they wanted to. She looked puzzled and asked the name again. When I told her, I was the one who was surprised. She didn’t remember the musical at all. She said she would try it but didn’t express any enthusiasm. It was hard to believe we have watched it so much over the past seven or eight weeks. It seems like her memory is getting worse each day.

Predicting the Future and Planning Ahead

Among the news dominating the airways today is Hurricane Florence as it approaches the East Coast of the U.S. It reminds me that at some time or other all of us find ourselves attempting to predict the future and consider our options. Of course, some things are easier to predict than others. Predicting the path of a hurricane has improved decidedly over the years; however, a lot of the things that you and I try to predict are much less reliable.

That leads me to comment on my own expectations for the future with respect to Kate’s Alzheimer’s as well as how I will respond to it. First, I’d like to say that I have recognized the importance of living in the moment with Kate. Just about everything we do is geared toward making the most of our time together. I am satisfied that it has worked to our benefit.

On the other hand, I tend to be a planner. I believe in the value of making preparations for the future. For me, that has meant understanding the various options available to us depending on Kate’s situation. Since Kate and I played a significant role in caring for my mother, who had an undiagnosed form of dementia, and Kate’s mother, who had vascular dementia, I have been painfully aware of where the journey ends. I am also well-acquainted and experienced with the variety of care options that are available to us during the progression of her illness.

As far as knowing if and when we might need to exercise one or more of these options, I’ve been far from omniscient. My mother died about four years after her doctor (actually, the social worker) told us she had dementia. My dad and I knew it sometime before then. If I had known then what I know now, I would have approached the doctor earlier. I suppose I was like most people. I just thought she was experiencing normal memory loss that accompanies aging. Besides that, I didn’t recognize ways in which Dad and I might be proactive in making Mom’s life easier. Looking back, I think Dad intuitively did the right things. He kept her actively engaged. Even near the end of her life, he usually took her with him when he went out. Of course, he had little option since he would never accept our getting help.

Kate’s mother died six or seven years after a stroke that led to her vascular dementia. For almost that entire period of time, she received in-home round-the-clock care, a year or two in her home in Fort Worth and almost five and a half years in our home in Knoxville.

Based on these two experiences, I never would have guessed that Kate and I would be able to enjoy ourselves so much at this stage of her illness. My approach as always has been to continue to do all that we can for as long as we can. At each stage, I have tried to look ahead to be prepared. Along the way I’ve asked myself the following questions. How long can we live a normal life?

How long will we be able to travel?

What will happen to our annual trips to Chautauqua?

When will I have to seek in-home care?

Will I be able to keep her at home as her mother did for her father? As my father did for my mother? As we did for Kate’s mother? If so, when will need 24/7 care and for how long?

Will I need to consider either or both of us moving to a care facility of some type? Independent living? Assisted living? Skilled nursing? A continuous care facility?

Shortly after the diagnosis, I thought that in 5-7 years we would be unable to have much pleasure. Within a couple of months, Kate and I both realized that we were living just as we were before. For the most part, that continued for another year or two. I realize now that this varies from one person or family to another. We have been more fortunate than I expected the entire way.

As far back as 2014, I thought our international travel was over. We traveled to New Zealand for three weeks. In May 2015, we took a trip to Switzerland for a similar period of time. That trip convinced me that was our last trip of that nature. It was simply getting too difficult for me to manage her and to handle the travel arrangements as well. In the Fall 2015, I made initial plans for a Mediterranean cruise from Barcelona to Amsterdam for May 2016. I could cancel without a penalty until the end of February. As Christmas approached, I began to question the viability of those plans. I decided to take a one-week cruise to the Caribbean in January 2016 just to see how well she (and I) got along. That experience convinced me to cancel our May cruise. Kate simply didn’t enjoy it as much as I had hoped. I think everything was too unfamiliar for her. It was simply too confusing.

Spending a week at Chautauqua during the summer was one of our favorite things. In 2016, for the first time we spent three weeks there. I was anticipating that as our last time there. I was wrong. I decided to try one more time. We went back in 2017 for a one-week stay. We enjoyed ourselves, but I was convinced that we would not be back. This time I was right.

Making the decision to engage in-home care was a big step. I never felt that I really wanted it from an emotional standpoint. I did, however, believe it was important to seek help if I wanted to care for Kate at home for the entire journey. This past Friday we completed our first year with a sitter. Once again, my guesses regarding the future were not accurate. That is probably a year or two later than I might have guessed after her diagnosis. We began with a schedule of three days a week for four hours each visit. That is still our schedule. I’ve moved slowly on increasing in-home care. I am grateful that we have been able to enjoy many pleasures a good bit longer than I expected, but I see more dramatic changes ahead. That is raising new questions about the future.

I suspect that this fall or winter I will add additional time. I haven’t been particularly good at predicting the future. I hope it won’t be necessary for a while longer.  I’ll say more about that and the possibilities for long-term care in Part 2.

I love it when things go well with the sitter.

Recently, Kate has indicated that she likes being with me and that she feels “safe” with me. I suspect that she means something more than safe. I think she is expressing her dependence on me. She feels secure with me because she can ask me anything. I don’t  believe she feels the same way with our sitters. Several times lately, she has given me a scowl as I left her with them. She has been very careful not to convey this to the sitters themselves, at least when I am there.

Yesterday, when I got back from Rotary and a meeting at the Y, I found Kate and Anita sitting on the sofa in the family room going through one of her family photo books. This one focused on her mother’s family. While I was bringing in some things from the store and looking at our mail, the two of them continued for another ten minutes. They both seemed to be happy. That really made me feel good.

A little later at Barnes & Noble, Kate was working on her iPad when she needed help with several of her puzzles. This was far from the first time, but the specific problems suggest how difficult they are getting. She gave up on two of them and let me finish them for her. On another, she had only three pieces to complete the puzzle and was stumped. This is a 16-piece puzzle, so the pieces are large. One of the pieces was a corner. I showed her the piece and explained that it had two flat sides and would have to go in one of the corners. Then I showed her the three corners that were already filled and pointed to the empty space at the bottom right corner. I told her the piece would go in that spot. She didn’t understand. I put it in for her.

Next, I showed her the empty adjoining spaces and the two pieces that would go there. She couldn’t tell which one went where. This must be getting frustrating for her. I do hope that she doesn’t have to give up her puzzles.

It wasn’t long before she asked my name. I told her. She started to repeat it. Then she said, “Tell me again.” I told her. Within minutes, she asked again. I told her. She asked again. I told her again. Then she said, “And I am?”

We went straight from Barnes & Noble to Chalupas for dinner. Then we came back home. She went to brush her teeth. When she didn’t come into the family room, I looked for her. I found her in the hallway. I said, “There you are. I was looking for you.” She said, “Where do you want me?” I told her our bedroom and that she might want to get ready for bed. She asked me to get her something to wear. When I got back to her room, I found that she had been in bed in the guest room next to our bedroom. It was obvious that she had gotten confused about where she was to go.

At dinner, she told me she was tired and not likely to last long. She was right. She called it a night just before 9:00. Before she got to sleep, I walked into the bedroom humming something. She laughed and said, “You’re cute.” Then she said, “What’s your name?” And then, “What’s my name?” A few minutes later she said, “Where are we?”

It was a nice day, but I really wish she didn’t have to go through this.

Kate and Conversation

Over the past couple of months, Kate has been far more talkative than at any time since the first year or two after her diagnosis. We discontinued her Trazadone in late May or early June. I think that might account for the change. It doesn’t help to fret, but it makes me wonder if we should have done this a lot earlier. It’s been a long time, but I remember times when she was so tired that she kept her eyes closed when we were at restaurants waiting for our food. I used to feel a little embarrassed about what others looking at the two of us might be thinking. Did they think I had hurt her in some way? She often looked so sad. That might have been avoided if I had connected it to her medication.

Talking a lot more is not the only change. As her memory has declined, she has had less to talk about. When the two of us talk, we stick largely to how we feel about our life together as well as our families. She speaks frequently about her mother and expresses very positive feelings but very few details about her. She also feels that we are very fortunate people. Again, she can remember few details. She most often mentions how fortunate we are to have been happily married for so long and to be so proud of our children. I fill in the facts on all of these things. I tell her about her mother and father, the things we have done, and what our children are doing.

Increasingly, she is asking more questions. That was especially true yesterday. At lunch at Applebee’s, she looked at me and asked, “Are you my father or my husband?” I told her I was her husband. Then she said, “I was afraid of that.” (Yesterday was also a day when she teased me a lot.) A minute later, she asked, “What is your name?” I told her and moments later, she asked again. That was followed by “Where are we?”

Questions about our family and names of places dominate her questions, but she also asks more surprising questions. For example, shortly after asking where we were, she asked how many Applebee’s there are. That didn’t surprise me. She has asked quite a few times before though not enough for me to remember. I always pull out my phone and get the answer. It isn’t limited to Applebee’s. As you might expect, she also asks about the number of Paneras and other franchises. One time she wondered how many times we had driven on the street that leads to our neighborhood. I did some quick calculations and came up with a “guesstimate” of 40,000. She’s asked a similar question about the main road that leads from town to our house. I haven’t calculated that one.

I find it interesting that she retains some interest in news events. That occurs when I am either watching the news on TV or on the radio in the car. She picks up something that is said and doesn’t understand it. In those cases, she wants me to explain. I always try but am often unsuccessful. Those conversations frequently end when she says, “Why don’t you tell me about it later when I’m more alert.”

On the way home from lunch, she asked, “Where is our house?” I told her Knoxville, but she wanted to where in Knoxville. I gave her the name of a hospital that is near the house. That worked. Once home, she stopped in the kitchen and said, “I’ll follow you.” That is always a sign that she doesn’t know where to go.

After dinner, we spent some time in the family room relaxing. She worked on her iPad and periodically looked out on the dense growth of trees on our neighbor’s property behind our house. She loves that view. At that point last night, she may have still thought we were staying someplace other than our home as she had earlier.

After I took a shower, she came back to our bedroom where I turned on a DVD of Sound of Music that we had started earlier in the week. I thought that she might immediately take an interest, but she was more interested in her jigsaw puzzles. That led me to see if she would react differently to Les Miserables. I didn’t say a word to her. I just took out Sound of Music and inserted Les Miserables. As soon as the music came on she looked up. Shortly thereafter, she put way her iPad and devoted her attention to the music.

I was hoping to turn it off before 9:30 so that she could get to bed. When I mentioned that to her, she said she wanted to watch a little more. At 10:00, I stopped it and suggested that she get ready for bed. She agreed even though she would have continued watching for a good while. This was the seventh time we have watched it recently. Her response was as enthusiastic as it was the first time.

We were in bed around 10:15. I was the one who was ready to go to sleep. She was in a talkative mood. She talked a lot about how fortunate we had been as a couple. Although she has forgotten a lot of details, she does remember some important things. For example, she mentioned the fact that her parents and my parents had long and happy marriages. Her parents and mine really were devoted to each other. She said, as she has many times before, “The most important thing is that we have had a good marriage, and we are proud of our children.” That is interesting in that earlier in the day I had said something about our children. She said, “I have children?” The last time I glanced at the clock it was 11:00. She was still going but slowing down. I don’t remember much after that.

Although she has been more talkative with me, she is less talkative in groups. Except for greeting people when we get to Casa Bella for their music nights, she talks very little. I would have to say that it can be a challenge. We often sit with three couples. All three of the men are talkers. I don’t think, however, it is just that. She simply doesn’t remember enough things that people are talking about to make a comment. When people ask her direct questions, she usually looks to me to provide the answer.

After Dinner Last Night

Kate had gone to brush her teeth after returning home from dinner last night. I took the clothes out of the dryer. In a minute, I heard her call to me. When I reached her, she was in the bathroom and said, “I like this place where we’re staying. It’s so spacious and attractive.” I said, “Yes, it is.” I didn’t say anything about its being our home.

A little bit later she took a seat in the family room. She looked out to the back yard and said, “This is a nice place. Look at the trees. They’re so beautiful.” I agreed, of course. Once again, I didn’t say anything to suggest that she was confused.

Before going to bed, Kate went to a bathroom off the guest room next to our bedroom. She seemed to take an unusually long time. Then I heard her call my name. When I answered, she said, “Where are you?” I said, “In our bedroom.” She said something that made me realize that she didn’t know where that was.  I said, “I’m right here.” Then I walked to the hallway where she was standing. It wasn’t until she saw me that she knew where to go. I wonder how long she had been looking for me.

Increasing Difficulty Dressing

I checked on Kate at 8:45 this morning. She had just gotten up. In her arms she had gathered the clothes I put out for her. She was headed to take a shower. I asked if she would like to use the one in our bathroom. She said it didn’t matter, so I suggested she use ours. I got everything ready for her.

A little later I checked on her again. She had showered and was starting to get dressed. I looked in the bathroom and discovered she had used the two towels I put out for her. In addition, however, she had gotten into two drawers of other towels. She had tossed at least three different hand towels on the floor, only one of which appeared to have been used. In addition, she had pulled out another bath mat that was on the floor along with several wash cloths. She continued to dress while I took care of the bathroom.

After another 45 minutes, I checked, and she was still not dressed. She had misplaced several things and was searching for them. This is becoming common. Although I have each item laid out so that she can see each one, she seems to pick up one thing and put it someplace else. The items are usually thrown someplace so that it they can be hard to find. That is particular hard when something like black socks are thrown on our dark blue rug. It can be difficult to find them.

We are in one of those in between stages. She is already accepting my help in picking out her clothes, but she still likes to dress herself. I can understand that. I think I would be the same way. I am trying to let her do just that but checking on her periodically so that I can find the things she has misplaced. I suspect that is a major reason it takes her so long to dress. I know that some of that time is trying to identify the front from the back of her top and pants and then to put them on correctly, but some of it has to be trying to locate the things I had put out for her. We are, of course, moving toward the time that I will play a major role in her dressing. At the rate we are going, that won’t be long. In the meantime, we’ll stick with what we are doing now. I want her to retain as much independence as she can.

One of Those Sad Moments

At lunch today, I said something to Kate about her mother. Then she said something that suggested that her mother was still alive. I said, “Your mother passed away.” She looked shocked, and I said, “Yes, she died in 2005, and you can feel good about the way you took care of her the last years of her life.” Then I said, “You were a very faithful daughter.” She said, “I’m her daughter?” She looked very sad, and her eyes filled with tears. I gave her the whole story of how she had made arrangements for her mother to move to Knoxville to live with us. I talked about a conversation we had one night that led to her contacting a friend about an agency that had provided in-home care for her husband who had recently died. I also told her that the caregiver who was in the house to greet her when her mother arrived was holding one hand when her mother died and that Kate and I were holding her mother’s other hand. She seemed to be comforted by this.

This was the first time she has ever given any sign of not remembering her mother’s death, so it caught me off guard. It raises the question I have read others talking about. Should I have told her the truth? In this case, I didn’t have time to consider the best way to respond. I believe I did the right thing. I suspect that she will forget again sometime, but I expect that she will remember most of the time, at least for a while. If she were further along, I would probably let the subject slide by without saying anything at all.

Regardless of what was or wasn’t right about the way I handled the situation, it was sad to see the memory of her mother’s death slipping away as well as the sadness she experienced when I told her.

Kate and Humor

Although Kate enjoys humor, she’s never been a kidder. I grew up with a dad who lived his whole life as a kidder. The week before his 100th birthday and two weeks before he died, a young staff member at his nursing facility asked what advice he had for someone who wanted to live as long as he had. He answered, “Don’t die.” He was a light-hearted guy who saw humor in just about everything. He was even a “cut-up” in the emergency room where we made any number of visits. I tend to be a more moderate version of him. That may be having an impact on Kate right now. I find that she teases me a lot as her Alzheimer’s progresses. Not being a kidder by nature, it often fails to come across as humor though I recognize it as such. I’ve had a few examples of that already today.

Out of the blue at lunch, she said, “Those are the ugliest glasses I have ever seen.” That’s the first time I recall her saying anything about my glasses. Usually, she comments about my nose. That has been something of a family joke. Dad had a moderately bulbous nose that seemed to be more pronounced as he got older. I inherited his nose and have been kidded about that before.

Kate also frequently says, “I’m glad I married you even though you’re not handsome.” As we were driving home from lunch, she said, “I think husbands should be handsome, and wives should be beautiful.” Then she added, “I compromised a little in your case.”

I tend to be careful about running a red light and often stop the moment the caution light appears. Kate has always thought I overdo that. Today, I went through a caution light when I could have easily stopped. I said, “I should have stopped. I could have.” She said, “You shouldn’t worry about it. You’re a good guy.” Then she said, “Who are you?” She wasn’t kidding this time. I told her, and she said, “Who am I?”

That leads to something else she kids me about, my last name – Creighton. She likes her maiden name (Franklin) better. She often expresses this preference when I tell her my name. She passed up that opportunity today. In fact, a few minutes later, she said, “I think it’s a good thing that women take their husband’s names.” I asked her why. That put her on the spot. She didn’t say anything for a moment or two. I could tell she was thinking. Then she gave me an explanation that seemed not to make any sense at all. I said, “So you don’t think it would have been good for me to take your name?” It became clear that I was going too far. She said, “Let’s not talk about this right now. This is getting silly.”

We’re back home now, and she is resting on the sofa across from me in the family room. I have a Chris Botti album on the sound system. It’s a beautiful day though warmer than I would like. It looks like we’ll have a peaceful afternoon.

More Surprises This Morning

I got home from my morning walk at 8:00 and went to the pool to meditate. When I came into the house, I noticed that Kate had gotten up. I went back to our bathroom where I had everything prepared for her shower but found that she had not used our shower. I decided to let her get ready at her own pace and went back to the kitchen. Just before 8:45, I went back to check on her. She was walking into the family room dressed for the day. I was quite surprised for two reasons. First, She rarely gets up before 9:00 and recently been sleeping until after 10:00, often after 10:30. Second, it usually take her an hour and a half to get ready. I didn’t see any signs that she had taken a shower. That, too, is very unusual.

As she walked toward me, she held up a pair of socks and said, “I have extra socks.” We both walked to the kitchen where I had put her morning meds. Then she said, “Underwear.” When she wants or needs something she often just uses a single word, so I asked if she needed underwear. She did. That told me she had forgotten where she keeps her underwear. I got it and brought it back to her.

When she finished her meds, I was in the bedroom and heard her call my name. Once again, she was able to remember my name when she needed something. When I got to the kitchen, she held up the pair of socks she was carrying a few minutes earlier and said, “Look what I found.” I asked what she was going to do with them. She said she didn’t know. I asked if she would like me to put them in her sock drawer. She said she did, and I took them back to her room.

On the way to Panera, I said something and could tell that she preferred that I not talk. I said, “I’m not going to say another word.” She said, “We’ll see. You can’t help yourself.” When I didn’t say anything else, she said, “What do you know?” She obviously remembers that I am a talker.

When we turned into the parking lot at Panera, she said, “Surprise, surprise.” It was clear that she recognized where we were. Just before we got out of the car, she teased me about something. I expressed surprise. She smiled and said, “I guess I’ve been married to you too long.” Aha, she remembered that we are married.

We had arrived before 9:00. While we were seated at our table, she said, “Panera.” Then she beamed. She was proud to have remembered. Since she hadn’t gotten to bed any earlier last night, I figured that we might not stay there too long. About 10:00, she said she wanted to go. Then she looked at her iPad and asked, “Is this theirs or ours?” I told her it was hers. We got our things together and came home where she worked on her iPad a while and then rested about thirty minutes. We left for lunch a short time after that.

On the way to lunch, she asked me at least three times where we were. When we were ready to return home, she wanted to use the ladies room. Even though it is very close to where we sit, I have learned that it is best to walk with her. While she was in the restroom, I chatted with our server. I told her that Kate had been making a lot of changes in the past few weeks. She was surprised. She said, she couldn’t tell any difference at all. When Kate came out of the restroom, she had no idea where to look for me. Fortunately, I stayed within ten feet of the restrooms. I saw her puzzled look and walked over to her, and we left. On the way home, she again asked where we were. Right now her primary questions seem to be “What is your name?” and “Where are we?” Those must be the two most important things she needs to know. I can understand that. What is hard for me to understand is what it must be like not to know the name of the person with whom I have the closest relationship or the name of the city I am in.