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A Few Moments Ago at Panera

KATE: What’s your name?
RICHARD: Richard Creighton.
KATE: Your full name.
RICHARD: Richard Lee Creighton.
KATE: Richard . . . (Trying to think of the middle name)
RICHARD: It begins with an ‘’L.”
KATE: (No response. Still thinking.)
RICHARD: Lee.
KATE: Richard Lee Creighton. That’s not so hard. (Puzzled look on her face.)
RICHARD: Not too hard.
KATE: What’s my name?

I can’t imagine what it must be like to work so hard day in and day out to know something as important to her as her husband’s name as well as her own. Fortunately, this is one of the times that she doesn’t seem very frustrated or disturbed about not remembering though her puzzled look suggests a bit of concern.

Just as I was about to upload this to my blog, she asked again.

KATE: What’s your name?”
RICHARD: Richard Lee Creighton
KATE: I knew that. (But meaning, “I just couldn’t call it at that moment.)

One of the clues that convey the importance of my name to her is that all this time she has been diligently (it appears) working on her jigsaw puzzles. Then out of the blue, she looks across the table at me and says, “What’s your name?” It is obviously on her mind a lot. She wants to get it right.

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The Rest of the Day

In my previous post, I said that Kate had slept late yesterday. Here is the rest of the story. Mary arrived right on time at 1:00. I told her that Kate was still asleep but would probably be up soon. Then I left for Panera to get a bite to eat before going to the Y. During lunch, I began to feel bad that Kate would wake up to find that I wasn’t there. I decided to go back home, wake her, tell her I was leaving for the Y, and that Mary would be with her. That made me feel better, but I realize that she probably forgot that pretty quickly. That was a few minutes before 2:00.

I took a short spin on the stationary bike at the Y and then went to Starbucks to meet my friend, Mark Harrington. We get together almost every Friday after I leave the Y. At 4:00, I got a call from Mary. She said they were at Panera and wanted to know what Kate usually ate.

I got home just before 5:00. Kate and Mary were in the family room. Everything was fine though I did notice a large stack of towels that Mary had put on the dryer. She had apparently picked them off the floor after Kate’s shower. When I went back to our bathroom I noticed two cabinet drawers were open. That’s where I keep our hand towels and wash clothes. There were none in either drawer. I did see one wash cloth and hand towel that appeared to have been used and thrown on the counter. In addition, I found a pair of my underwear and wondered how it had gotten there. Later, I noticed that the drawer where I keep my underwear was open. Underwear was missing. This morning as I was checking each bathroom for things I needed to wash I found another pair.

I’ll never know exactly what motivated her, but I think she was looking for her things and couldn’t remember where they are kept. Her memory of the various rooms in the house and the location of things within them is getting weaker. This can only get worse. It calls on me to be more aware of the time she gets up so that I can guide her where to go and where to find things. I had hoped that putting out her clothes on the chair beside her side of the bed would solve this, but she seems to forget and/or not see them when she gets up. It is also possible that she sees them, goes to take her shower, and forgets that her clothes were out.

Normally, we go out to a nearby pizza place on Friday. Sometimes we go shortly after I get back home. Other times it is as late as 6:00. It’s a popular place, and I try to beat the crowd. I thought about Kate’s having had breakfast/lunch after 4:00 and thought we might need to eat a little later than usual. Then I thought about the times she is ready to eat the next meal as early as an hour or two after the previous one. My next thought was “Why don’t we do something different tonight?” We have a very nice Italian restaurant not too far from us, but we don’t eat there often. I made reservations at 6:00, and we had a really good dinner. It was a nice change from our Friday night routine.

When we got home, I watched a little of the news while Kate worked on her iPad. Because Kate had slept so late, I thought she would have trouble going to sleep. I was wrong. I played a portion of our DVD of Fiddler on the Roof. She enjoyed it but was tired. She went to bed about her normal time. It had been a very short day for her, but she never realized it.

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Sleep Takes Over This Morning

I shouldn’t be surprised that Kate is sleeping late this morning. After all, she got up at 6:00 yesterday morning and didn’t rest at all during the day. This is a day for the sitter. I wanted her to get up so that we could have lunch together before Mary arrives. At 10:00, I put on some soft music to gently wake her. When she hadn’t shown any sign of life at 10:30, I turned up the volume a bit. At 10:45, I sat down on the bed beside her and rubbed her shoulder. She opened her eyes and quickly shut them. I stayed with her a few minutes and told her I would love to take her to lunch. She gave me a little smile. In another minute, she was frowning. I decided to let her sleep some more, but I left the music up. About ten minutes later, she came into the family room looking a bit confused. I asked if I could help her. She said, “What do I do now?” I told her she could take a shower. I walked her into the bedroom and showed her the clothes that she had picked out last night. Then she said, “I want to go back to bed.” I told her that would be fine. That is where she is right now. I’ll just let her sleep. Mary will be able to take her to lunch when she arrives.

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An Interesting and Very Nice Day

Despite the fact that Kate was up at 6:00 yesterday, she was in a very good mood all day. In that respect, she was nothing like she was the day before. In fact, except for a little normal confusion immediately after getting up, she displayed relatively few of the obvious signs of her Alzheimer’s the way she has done in the past. She did ask my name once or twice at Panera but not once the rest of the day. In addition, she also mentioned our grandson, Brian, by name in an afternoon conversation without my saying anything to prompt her. She didn’t asked me where we are or the names of anyone else. She did ask me the name of the restaurant where we had lunch two or three times while we were there.

Of greater significance, is that we had a very good conversation when we got home after lunch. This is one of those times I wish I had a better memory. I would love to tell you exactly what she said. I’ll do the best I can to capture the moment.

As we drove up to our house, she said, “I remember this place.” I couldn’t be sure of what she meant. Right before this, she was talking about Madison. Did she think this was our place in Madison or simply that she recognized the house we live in now. Once in the house my uncertainty continued. She said something similar about the family room when we walked inside.

She was especially drawn to the back of the house and the trees on the property of the neighbor who live behind us. We sat down in the family room. Each of us had an iPad, but she continued to talk. I wanted to listen and support the conversation. She talked about our years in Madison when I was a graduate student. She commented about it’s having had a great impact on both of us. She said it was a time when we both grew up. Much of what she said comes from things I have said to her in the past, though not recently.

As in most other conversations, she talked about our marriage and how fortunate we have been, but there was something very different. In recent conversations, she has sounded like a nervous talker, just chattering away. This time she was so very normal and thoughtful as she spoke. There was no sign of concern or worry or fear about her memory loss. In many respects, she seemed quite normal. There was one difference that has become more common recently. The struggles with finding the right words to communicate what she wants to say. Often she says, “You know what I mean.” In most cases, she hasn’t told me enough for me to know. I find myself guessing what it was she wanted to say. More than half the time I guess after a few attempts. Other times, I don’t. Then she either drops the point she wanted to make or she goes on with the larger message she is talking about.

I found the conversation to be as rewarding as I found other recent ones to be sad. It was a good reminder that changes are not usually abrupt. They are gradual. They begin with something that happens on a single occasion and gradually become more commonplace.

We ended the day at Casa Bella for jazz night. We both enjoyed ourselves though as on other occasions, Kate was very quiet. There were six of us at our table, and four of us are talkers. Kate and one other woman tend to be on the quiet side.

I would love to see another day like that today.

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Off to an Early Start

I’ve spoken a lot about Kate’s sleeping late over the past few months, so I should let you know that she was up at 6:00 this morning. That itself is not unusual. She often gets up between 5:00 and 7:00 to go to the bathroom and then back to bed. Today was different. I saw her getting ready to shower. I told her what time it was and that she could go back to sleep if she wanted. She indicated she was ready to get up. I got her towels and clothes ready for her and left her. She was ready for Panera before 7:30.

We surprised everybody at Panera. We had never arrived so early. We even beat the group from the Catholic Church who stop by for coffee and pastries after mass each day. The two people working the front counter commented on our early arrival, and one of the managers came to our table to say she had missed us lately. We have seen several others we know. It was like “old home week.”

Being so early led to a humorous moment. About 9:00 (an hour and a half after our arrival), Kate gave me a look that I recognized as “I think it’s time to go.” We got things together and said goodbye to our Catholic friends. When we got outside, Kate said, “Now we can get some lunch.” I told her it would be a while before lunch and asked if she would like another muffin. She said she would. We turned around before getting into the car and took our place at the table we had just left. Our friends at the “Catholic table” chuckled and welcomed us back. They all know about Kate, and are very understanding.

When we came back in, I set up Kate’s iPad while Kate went over to get a drink. I noticed that she was a little unsure about what to do and asked if she would like me to get her drink. She said she would. Then she asked me where I wanted her to sit. At that moment, we were standing beside our table with her iPad opened to her puzzle. She rarely sees it without my pointing it out to her.

A little later we received a phone call from our daughter. That, of course, was a bright spot in our morning. Before going back to our table, Kate responded to a woman seated near us. It was someone whose husband had been a friend of my dad’s. Both of them died five years ago. It had been that long since we had seen her. We had a nice conversation with at her table. When we were through, Kate asked for my help in getting back to our table that is about 12-15 feet away.

It is now 10:45. It looks like we will be here until we leave for lunch. I’m not sure about Kate, but it’s been a very nice morning for me. I think it’s been good for her. Although she doesn’t talk as much as I do, I think she benefits from the stimulation of being with people. All the encounters are pleasant ones as well. I think it’s good for both of us.

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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.

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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.

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A Very Sad Moment

I just went into our bedroom to wake up Kate. She opened her eyes right away. The soft music I turned on about fifteen minutes before must have worked. I sat down on the side of the bed and told her good morning. She looked up at me and didn’t say anything. I said, “I love you.” When I did, tears welled up in her eyes. She had a very sad look on her face. As I have noted before, she is not one to cry. She held back her tears but didn’t say anything. Then she said, “What’s your name?” I rubbed her back for a few minutes and then told her I would always be here to take care of her. She said, “That’s good.” I told her I would like to take her to lunch. After a few minutes, I helped her up and showed her the clothes I had picked out for her. Then she went to the shower.

I can’t be sure what brought on the tears or the anxiety last night. Her tears followed my saying that I love her. I wonder if my expression of love and her not knowing my name hit her in some way. It hasn’t done that before. I don’t believe she remembers that she has Alzheimer’s. I know, however, that she recognizes the changes that are taking place. She has expressed that concern before. I believe that is causing her anguish. She knows she is losing touch with the world around her and wants it to stop.

It is ironic that when I was at Rotary on Monday, one of the members asked me how Kate was doing. I told her. Then she said, “At least she is not aware.” I quickly said, “Oh, no. She does know, not that it is Alzheimer’s, but she knows she is losing her memory.” I must admit that I thought by this time she would just drift away without realizing she has a problem. That’s another of my expectations that was wrong.

As I have mentioned many times, the most difficult part of this journey is the sadness I  experience at moments like this. It is very painful knowing that she is troubled. I don’t look forward to the next part of this journey when she won’t have the same recogition, but I hate to see her suffer now.

The sitter is coming this afternoon. I have a meeting at 1:15, a dental appointment at 2:00, and another meeting at 3:15. It’s going to be harder than usual for me to leave her. I think I will set up the DVD of Les Miserables so that Mary can play it for her while I am gone.

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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.

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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.