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First Day With the New Sitter

Yesterday was Kate’s first day with Marilyn. She’s the interim sitter while Anita is out. Having interviewed her last week and spending time with her at lunch, I felt comfortable leaving Kate with her. It turned out that we got to Panera a little later than I wanted, so I called Marilyn and asked her to meet us there. Just before she arrived, I reminded Kate that it was my day for Rotary and that someone new be with her while I was gone. A few minutes later, Marilyn arrived. I re-introduced Kate to her. When I did, Kate said, “I really don’t need anyone, but it’s nice to have company.” I took that as a positive sign even though she was making her point about not needing anyone. It is likely she was doing that more for the sitter than for me.

When I got home, they were in our family room. Kate was resting on the sofa. Over the past several months, she has frequently been resting when I arrived. I have also discovered from the sitters that they have not been spending as much time at Panera as they had before. Had this occurred earlier, I might have thought it was a result of some embarrassment to be out with a sitter. She has never shown any concern about that.

I am speculating that it may relate to her increasing dependence on me. It’s not just that she lets me do more things for her. It’s that she periodically tells me that she “feels safe” with me. The first time she said this I didn’t attach much significance to the word “safe.” Since it comes up occasionally, I’m thinking she really feels more secure when I am with her outside the house. That is when she would be most puzzled by her surroundings. At Panera yesterday, I walked her to the restroom because she was unsure how to get there. If she is unsure there, I can only imagine what it must be like other places. That insecurity, of course, may extent to her feelings when she is with the sitter at home. I know that the sitters have told me that she asks when I will be home.

Last night, she got in bed shortly after 7:30. I was a little surprised because the sitter said she had rested most of the time I was gone. I took a phone call from our son and went into the family room so that I wouldn’t disturb her. After his call, I went back to the bedroom to get ready for my shower. She was still awake and asked if I were coming to bed. I told her it was a little early for me to go to bed and that I would be close by in my chair right beside the bed. After my shower, she asked again about my coming to bed. I got into bed with her. She was very calm, but she was relieved that I had come to bed and said, “I’m glad you’re here. I feel safe when I am with you.” That was just the beginning. She talked for a good while. It was like many other conversations in which she talked about how fortunate we are. She never gets very specific because her memory won’t allow that, but she clearly retains her feelings about her family, our marriage, and our children.

Looking back, she had been in a good, but calm, mood earlier before Marilyn arrived. I wonder if she might have felt insecure because I wasn’t there. That might have led her to think about her memory loss and inability to do so many things. I know that she was quieter at dinner, but she didn’t really look depressed. I’m not going to speculate too much. This is something I may never understand. I will, however, be looking for any patterns that may be developing.

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A Surprise

For quite a few years, I have walked in the morning. Over the past three weeks, I haven’t walked at all. That’s because I have a pinched nerve in my left hip. I decided it was best to take it easy for a while, and it seems to be helping. That may have turned out to be a good thing this morning because Kate was up before 8:00.

I was in the family room when I heard something in the bedroom that made me think she was up. When I entered the hallway to our bedroom, I saw her walking toward me. She seemed concerned but not in a panic and said, “I was looking for you. I couldn’t find you.” I said something to console her. Then she tried to make light of the situation saying, “Oh, it’s all right. I just didn’t know where you were.”

Then she asked, “Where do I go now?” I asked her if she had gone to the bathroom. She said she had. Then I asked if she would like to take a shower. She did. I told her to come with me and took her to our bathroom. As I was turning on the shower, she said, “I looked all over for you. I didn’t know where you were.” Once again, I made an attempt at consoling her, and she said, “It wasn’t anything. I was all right.”

I left it at that, but this was an experience I have thought about before. Normally, I leave for my walk around 6:00. I can be back at the house between 7:00 and 7:15. I’ve thought about the possibility that she would get up and not find me. I didn’t worry much because she never leaves the back of the house until she has showered and dressed. In addition, she rarely wakes up before 9:00, and it has recently been after 10:00 and sometimes much later. Just in case she should get up before my return, I have always left a sign that says, “Richard is Walking. Back Home Soon.” I left it on the threshold of the doorway from the kitchen to the laundry room. That is a place she would easily see it.

All along, I have been prepared to give up the morning walk when I felt less confident that Kate would be all right if she found I was not home. Today’s experience was the first sign. It was fortuitous that it should happen when the pinched nerve had caused me to take a breather from walking.

The question now is what I do next. One thought is that I will not leave her in the morning. Another is that this change will probably lead me to increase the sitter time; however, I am not ready for that. I hope I can postpone that until sometime after the new year.

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Another First

When I turn off the main road into the shopping center where Panera is located, Kate often says something like, “Surprise. Surprise.” or “I know where you’re going.” Not so this morning. Instead, she said, “Where are we going?” Thinking that she would soon catch on, I said, “I think I’ll let you guess.” As we got closer, I asked, “Do recognize anything now?” She didn’t answer. When I pulled into a parking space, she said, “Panera.” I said, “You got it.” She said, “Well, I saw the sign.” This is a little thing, but it’s another sign that the connections with familiar places are weakening.

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Little Things, Greater Dependence

I continue to notice little things that illustrate Kate’s increasing dependence on me. One of those involves help with her clothes. I think that occurs because she is increasingly unsure of which rooms are which and where things are kept. For example, over the past week or so, she seems to have presumed that I would get her night gown for her at bedtime. She has also been wearing the clothes I put out for her. There have been a couple of times when she hasn’t noticed the clothes. I’ve asked if I could help. She says, “Clothes.” Then I show them to her. She has also started asking me which bathroom to use. I have started walking her part of the way and showing her where o go from there.

She more frequently calls for me in the house. Last night, after she had brushed her teeth in the guest bathroom next to our bedroom, I heard her call, “Richard, where are you?” I told her I was in our bedroom and asked, “Where are you?” She said, “I’m lost.” I met her in the hallway, and we came back to our bedroom. She wasn’t panicked at all. She just didn’t know where I was or how to get there. An interesting side note is that she is able to recall my name in situations like this. I hope that will continue. It seems like it would be frightening not to know where she is or how to call me for help.

Something else that is not new but happening more frequently occurs in restaurants. She picks up the menu, hands it to me, and says, “Order for me.” I find this especially interesting since I have been ordering for her for several years.

Brushing her teeth is another place I see changes. She brushes frequently. I try to keep toothbrushes and toothpaste in all of the bathrooms because she uses all of them. Most of the time she leaves them on the counter, but sometimes she puts either or both in a drawer or takes them to another bathroom. This makes it hard for her to know where she can find them. In our own bathroom, I’ve kept her toothbrush and toothpaste in a drawer. She usually puts the toothpaste in the drawer but puts her toothbrush on the drawer handle. Until the last week or so, I put it back in the drawer each time I entered the bathroom. Now, I leave it so that she can find it easily. In addition, I am starting to leave the toothpaste on the counter. We are both adapting.

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Kate’s memory is fading quickly.

There is no way that I can measure the speed at which Kate’s recent decline in memory has occurred. I only know that she has changed more in the past two months than I can recall for any period since her diagnosis. It is no wonder that she has periodic attacks of anxiety. It’s harder to understand why she hasn’t had more.

Her sense of direction has always been poor, but her difficulty knowing where to go in the house has surprised me. I hadn’t really thought about this before. I guess I assumed she would be on autopilot in the house forever. To some extent, she still is. Yesterday, for example, she said, “Where is the bathroom?” I told her I would show her and walked her toward our bedroom. As we were leaving the family room, she turned and went into the guest bathroom. That is the one she has used most often. She must have recognized where she was the moment she walked out of the family room.

Earlier today at Panera, I asked someone I know at a nearby table to watch her a minute while I went next door to make an appointment for Kate to get her nails done. When I came back, she said, “What’s my name?” I gave her the full name, and she asked me to repeat it.

She got along well yesterday. I don’t mean that her memory was any better. I mean that she isn’t showing any sign of unusual worry or concern over her memory. I sat in the waiting area of the nail salon while she is finishing up. She  handled herself well with the person taking care of her. When I left her, there was a brief moment when she seemed to be concerned that I was leaving her. I told her I would be next door at Panera. On the whole, it is still amazing how well she gets along in brief social encounters.

Last night, we went to Casa Bella for Broadway night. We had another good evening, but it was a very challenging one for Kate. We sat at a larger table, and the entire crowd was noisy. There was absolutely no way that she could keep up with the conversation. At first, she tried. That required her asking others or me to repeat things just said. It didn’t take long before she just bowed out of the conversation.

When we got home, she walked to our bedroom without any problem. In a few minutes, I went to the bedroom. No lights were on. She was standing in the middle of the bedroom. She asked where she should go. I told her she could stay right there in the bedroom and that I would get a night gown for her. She went through the usual challenge of getting her clothes off and putting on her gown. Sequencing is a problem for those with dementia. Getting dressed or undressed involves sequencing. Now that I’m watching and helping her dress, I am getting a better understanding of this issue. I am beginning to help by telling her what to do at each step (take off your shoes, your socks, etc.).

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Another Difficult Moment

About 7:45 this morning, I went to the bedroom to check on Kate. I don’t know why. Knowing that she sleeps much later than that, I usually don’t check on her before 9:00 or 9:30. I am so glad I did. As I walked in, I could hear her whimpering. She has never been one to cry until the past few months during when she has experienced anxiety attacks and two recent moments when she was very sentimental. Those experiences immediately made me think about her anxiety over her memory loss. I am sure I was right.

I got in bed and held her. I asked what was wrong. At first, she didn’t say anything. She just continued to cry. She often has trouble expressing her feelings. I continued to hold her. A few minutes passed. Her cry became more than a whimper. I said, “You sound like you’re afraid. Are you afraid?” She held her head up and nodded. I said, “Life can be hard, can’t it?” Then I asked “What are you afraid of?” She said, “Losing you.” I said, “You could never lose me, I will always be with you.” Another few minutes passed. She continued to cry softly. Then she said, “I don’t even know who I am.” I told her and then told her about her parents and our children.

I have a wireless audio system that I can control with my phone. I pulled the phone out of my pocket and turned on an album of Russian sacred music. It is very peaceful. She said she liked it. I continued to hold her, and she slowly began to stop crying. Several times she said, “I don’t want to lose you.”

After a while, she said she would like to lie in bed a while. I told her I would get my computer and sit in my chair next to the bed. She rested another 45 minutes. Then she got up. She looked a little confused, but she wasn’t crying. I hope that she has already forgotten what had happened. I just wish I could keep this from happening again.

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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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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.