Posted on

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.

Posted on

Confusion in the Morning

Kate was getting dressed when I went to check on her at 10:30 this morning. She asked my name. I told her, and she said, “I knew that. I just couldn’t remember. What’s your name again?” I told her again. She said, “Oh, you’re a nice guy.” Then I said something about our being married. She said, “We’re married? How did that happen?”

She sat down in the family room to take her morning meds. I heard her call my name. (She still does pretty well recalling my name when she needs something. I suspect it is a conditioned response. It occurs without thinking.) She had noticed a TCU magazine on the table and asked if she could take it with us. A minute or two later, she had forgotten asking me. She asked, “Is this ours or theirs?” She may have been thinking we were in a hotel. I told her it was ours. She said, “So I can take it with us?”

As we were leaving for lunch, she decided to use the bathroom. She pointed to the door beside her and asked, “Is this a bathroom?” I confirmed her suspicion. It’s just another indication of how the house is becoming less familiar to her.

Posted on

A Nice Way to End One Month and Begin Another

Good Morning. I hope it is as pleasant a morning for you as it is here. The sun is shining brightly, and the temperature is a little bit cooler. Sometimes days when you don’t do anything special turn out to be especially good. That was certainly true for us yesterday. I was pleased that Kate was up early. So early, in fact, that we beat the group of Catholics who come to Panera after mass. We spent an unusually long time at Panera. We were there 2 ½ hours. Not only that, but we spent the entire afternoon at home after returning from lunch. That was almost 4 ½ hours. It’s hard for me to remember a time when we spent more than 3 hours at home in one stretch (during the day, of course). It would have been when Kate used to work in the yard. During that period of time, she could easily spend as long as 4 or 5 hours working outside. That hasn’t happened in at least two years.

During our time at home, Kate worked continuously on her iPad. She does have more problems working puzzles now than in the past, but she feels comfortable asking for my help. Her biggest problem is accidentally getting into the puzzle store to buy more puzzles. The creators of the app she uses make it very easy to buy more puzzles. I do that once in a while to make sure she has a good supply, but it doesn’t mean a lot to Kate. She has her favorite puzzles and works them over and over, often repeating a puzzle immediately after completing it.

For a long time, I thought it was just completing the puzzles that was appealing to her. Recently, however, she comments a lot on the beauty of the colors. She has one puzzle in particular that she frequently points out to me. She likes the colors and the kitten in the middle of a bouquet of flowers.

Apart from getting herself into the puzzle store, the second biggest problem is her eyesight. She often loses puzzle pieces when they are on top of pieces that are already in place. I admit that sometimes the patterns make it challenging, but it is mostly her eyesight that is a problem. I often move the pieces she can’t see to the side where they are clearly visible. I’m going to buy her some reading glasses and see if that helps. She’s had plenty of them in the past, but they get lost or broken rather quickly.

There are also two other possible reasons she doesn’t see well. One of those is her cataracts. In discussions with her ophthalmologist, we have decided not to have surgery. That’s true at least for now, but the likelihood of surgery decreases as her Alzheimer’s progresses.

The other reason involves dementia itself. I don’t fully understand but people with dementia often don’t notice things that the rest of us would see easily. One of the best examples is that Kate often doesn’t notice her iPad that is in a bright red case. I bought that case to make it easy to find. She often looks right over it. It’s not that her eyesight is that poor. She has 20/60 vision. That would make reading a problem and also identifying the right puzzle piece, but not seeing larger objects lets me know there is something else going on.

Kate is awake but not up yet. I expect she will be soon. We have a new sitter coming today. She is filling in for Anita who had minor surgery last week. I’m not sure when she will be back, but I feel good about Marilyn. While she is here, I will get to Rotary and then to a United Way meeting. I’m hoping for another good day and believe it is likely to happen.

Posted on

A Conversation at Panera

Kate’s being up so early this morning meant that that we also got to Panera early. I think this was the fourth day in a row that she was in a particularly good mood. She clearly recognized where we were as we drove up to the restaurant. When I gave her my hand to help her up the curb to the sidewalk, she didn’t want it. Then she quickly changed her mind, saying, “I didn’t really need it, but it helps.”

As usual, I got her situated at our table and went to the counter to order our drinks and her muffin. When I returned with the muffin, she noticed that I didn’t have anything at my place and wondered why. I explained that I had already eaten an omelet at home. She teased me a little saying, “You just had to have something healthy, didn’t you?” What was striking about this is that, except for lunch, I have only gotten something to eat two or three times in all the years we have been going there. This was the first time she has said anything.

For thirty minutes or so, she worked on her iPad while I worked on my earlier post. Then, I think I said something about her mother. I know that she asked her mother’s name. I told her. Kate said, “She was quite a woman.” and I said, “Your mother would be proud of you. Then she said, “Do you think so?” I said, “I know so.”

I proceeded to tell her one of the things that I knew her mother admired about her, the 19 years she served as the volunteer librarian at our church. As I have done a couple of other times recently, I told her about her work a little like telling a story. She was surprised to know she had served so long. I explained that she had the perfect combination of training, personal experience, and personality for the position and that no one filling that position had had each of those qualities. I told her how well-acquainted she became with the parents and children as well as the teachers and other church members. I also told her about the many people she had helped to find materials for some special purpose. My mention of specific things she had done, jogged her memory a bit. That led to her adding other things she remembered from those 19 years. It was a beautiful conversation, and I loved seeing how good she felt about the contribution she had made. The library really had become a vital place under her direction, and her mother really would have been proud.

Our conversation caused me to reflect a moment. Could memory loss affect my self-esteem? I always try to imagine what it must be like not to have a memory. I do know that Kate has said a few things over the past year that suggest many other people have something about which they can be proud and that she doesn’t. It is easy for me to imagine that if I had forgotten everything about myself, I wouldn’t be able to think of anything that makes me special. I might feel somewhat inferior to other people. This is an aspect of the disease I hadn’t thought about before. Kate hasn’t forgotten everything about herself, but she remembers less and less all the time. I try to bolster her ego in every way I can, but I plan to be more sensitive to this issue in the future. I want her to remember what makes her special.

Posted on

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.

Posted on

An Example the Strength of Feelings

Yesterday at my Friday afternoon coffee with Mark Harrington, I said something about Kate’s weakening memory for names. He said, “I’ll bet she still remembers some feelings.” I told him I had seen signs that he is right including her feeling about me as well as other family members and friends. Then I said, “I am sure she would not remember your name if she saw you, but she would probably think you are brilliant.” This morning he dropped by the house to pick up tickets to tonight’s symphony concert. I was outside when he arrived and chatted with him briefly. In a few minutes, Kate came outside. She walked over to Mark and gave him a warm greeting. We talked another few minutes. Then as he was getting in his car, Kate said, “You’re a good guy. You’re brilliant.”

He drove away. Kate and I turned around to walk back in the house, and she said, “What’s his name?” I said, “Mark.” She asked, “What’s his last name?” I said, “Harrington.” She said, “Oh, he’s brilliant.”

When Kate was diagnosed, I had no sense of things like this. They are things I have learned along the way, some by experience but many from things I have read. Either way, I think it is very important for all of us who care for someone with dementia to understand this. It means that even as some abilities diminish over time, others remain in place for a long time.

In our particular case, I am especially glad that Kate’s enjoyment of music doesn’t appear to have lessened at all. In fact, I think it is stronger now than ever before. I wonder if that might not be a direct result of losing some of her other abilities. It could be like someone’s losing her sense of sight but strengthening her sense of hearing. The important thing is to remember that a diagnosis of dementia doesn’t mean all is lost. If it did, our lives would have been very different.

Posted on

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.

Posted on

A Happy End to the Day

After returning home from dinner, we relaxed about an hour in the family room. Then we went to the bedroom where I played the last hour of Les Miserables. Shortly after sitting down in her chair, Kate asked (hand signals, of course,) if she could use her iPad. I told her that would be fine. I was curious to see if she would put it down when the music started. She didn’t immediately, but it wasn’t long before it grabbed her. That was it for the iPad. For the next hour, she gave her full attention to the music. As she has done in the past, she made frequent comments about the beauty of the music and the quality of the acting. For those of you who may not have seen this 25th anniversary concert, I should remind you that this is different from the stage production. It does not have the elaborate sets, and the singers do not act in the way they would on stage. All of the lead singers stand in front of a microphone as they would do in a typical concert. They do, however, use facial gestures as they would in the stage production, and they are always in role, even when they wait for the applause after each song.

At dinner last night, Kate told me that she was going to “crash” early. It didn’t happen. When Les Miz was over, she was so keyed up that it took a while for both of us to go to sleep. I had been up since 5:15 yesterday morning, so I was ready for bed. She was in one of her talkative moods. To me it is fascinating how much she is moved by this musical. I don’t think it is just the music. I believe it is this particular production that is so spectacular. At any rate, we turned off the lights and got in bed. Kate talked for a long time before dosing off. She talked about all the usual things – the beauty of the music itself, how wonderful that we could share things like this together, what a good marriage we have had, the wonderful things we have done together, our parents, and our children. In a way, it was almost like a child’s bedtime prayer, an expression of gratitude for everything we have done together. I wanted to sleep, but I wouldn’t trade anything for seeing her enthusiasm.

Posted on

A Surreal Conversation

Kate and I just returned from dinner where we had the most (only) surreal conversation of our 55-year marriage. On a number of occasions, I have said that I wished I could remember the exact details of our conversations. That was never truer than right now. It began as we were backing out of our garage. She commented on “this whole area” where we live. I asked if she meant the house or the neighborhood. She said everything. Then she added, “I would like to live here if we move back.” Those last two words were the clincher for me. I knew that she thought we were in her home town of Fort Worth. I didn’t correct her. As we drove down the street, she commented on the trees and specific houses that she liked. Then she asked if she had “lived here before.” I started to tell her she lived here now. Instead, I said, “Yes.” She said, “On the way home, I want you to show me which house.” Before we arrived at the restaurant, she asked where we were. This time I told her Knoxville, Tennessee. She repeated “Tennessee” and said she liked it.

Once we were seated at the restaurant and placed our order, she said something else that made me believe that we were in Fort Worth. There was a pause in our conversation. Then she said, “Who is my mother?” After I told her, we began a conversation much like one I described earlier this week. She said, “Tell me about her. What was she like?” I shifted into my storyteller role and told her about her mother’s being from Michigan and that her father and mother had met there one summer when he had traveled there with his mother. I talked about her mother’s family and her parents’ courtship that led to their marriage and making their home in Fort Worth. My story was punctuated by her expressions of surprise at everything I said. That was very unusual. Typically, when I tell her things like this, she displays some sense of recognition. The only part of the story that struck a chord was when I talked about how well-liked and respected her mother was. I mentioned that her mother had come to Fort Worth as a stranger but was welcomed into the family, and she loved them back.

Then she redirected the conversation. First she said, “And they (her family) welcomed you into the family too.” Then she shifted gears again saying, “I want to thank you for being so understanding. You never rush me.” I do think I am pretty understanding. I also know that I try not to rush her. On the other hand, I know that she feels I rush her more than occasionally. I recognize, however, that when we are not in one of those “rushing” moments, she is very generous with her compliments. This was one of those times. I would like to say that my modesty prevents my telling you other things she said, but, alas, it’s my memory that’s the culprit. I do recall that immediately after saying such good things about me, she said, “What’s your name?”

From there, she found herself struggling for the right words. She asked the name of the university located here. I thought she might be thinking of TCU, but I told her the truth and said, “the University of Tennessee.” It turned out that I was right, but she accepted my answer without question. There were moments when she was slipping back and forth between thinking we were in Texas and then Tennessee. For me, it was like being in someone else’s dream. She moved so seamlessly from reality to imagination. It was surreal, and it lasted so long.

Later, as we turned into our drive, I asked if she recognized our house. She didn’t. This was the only time that I have been aware that she failed to recognize and say something about how much she liked it. There have been times when she thought it was a former house or a house in Fort Worth, but she has always recognized it before.

After our conversation, I might have expected her to want my help in directing her where to go when we got inside. This time, however, she walked straight to the bathroom to brush her teeth. After that, she didn’t say or do anything that suggested any confusion. She seemed perfectly normal.

Posted on

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.