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Reaction to My Leaving Her with the Sitter

Sometimes there are dramatic moments that one can recall as a point when life changed. The moment Kate’s doctor delivered the news of her diagnosis was one of those. It was mid-day on January 21, 2011, exactly one week after Kate’s 70th birthday. That was a clear marker in our lives. Most other changes are less defined. They just creep up on you. That has been the pattern for Kate and me the past 7 years and 8 months.

Although our changes have been very gradual, I frequently wonder if we are entering a new phase when I notice any difference in Kate’s normal pattern. The changes in her sleeping late in the spring made me think that a signal of an important change. Of course, I couldn’t be sure at the time. Looking back, it appears I was right. Since then, Kate’s changes in memory and confusion have increased more significantly than at any other time since her diagnosis.

One of those changes has been her behavior in connection with the sitters. For months, she happily greeted them. That made me feel good as I left her. Over the past few months, I’ve noticed less enthusiasm when the sitter arrives. On several occasions, Kate has asked if she could go with me. She seemed disappointed when she couldn’t. Along with that reaction, there have been some occasions when she and the sitter didn’t go to Panera. She is also spending more time resting while the sitter is here.

During this same period of time, she was growing more dependent on me. I have mentioned several times, once in the last day or two, that Kate has told me she likes being with me, that she feels safe with me. She hasn’t said this around the time the sitter has been here, but I have always wondered if there might be a connection. An experience yesterday strengthened that suspicion.

We arrived at Panera for lunch a little later than I had wanted and called the sitter to meet us there rather than at home. A few minutes before Mary arrived, I reminded Kate that I would be going in a few minutes and that Mary would take her home. She gave me a big frown. I said, “Do you feel like I am deserting you?” She said sternly, “Yes, and I don’t like it.” All of a sudden I felt like a parent leaving her young child on the first day of school.

When I got home, Kate was resting on the sofa in the family room with the sitter who was watching TV. I walked the sitter to the car and asked if they had stayed long at Panera. She told me they stayed “a little while.” She said Kate had wanted to go back home where she rested for a while. Then she got up several times and returned to the family room. She worked on the iPad a little but also rested a good bit.

In our conversation, I suggested that if this happens again that she might take her back to Panera. She seemed a little surprised. I told her it is not uncommon for us to go back more than once in a day or to Barnes & Noble. I also told her that Kate gets bored staying at home for long stretches and that we are rarely home for more than 2-3 hours in a day. I will convey this to our other sitter the next time she is here. I am hoping to work with the sitters to address the issue. I feel that is a better direction than reducing the sitters’ time.

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Waking Up This Morning

Kate was sleeping soundly when I woke her this morning. I put on some music, but she continued to sleep, so I went into the room and sat down on the bed beside her. She opened her eyes but didn’t say anything. I asked if she would like me to take her to lunch. She nodded. I sat there a few moments. Then we had the following conversation.

KATE:  “What’s your name?”

RICHARD: “Richard Creighton.”

KATE: “Richard Creighton.” (pause) “Say it again.”

RICHARD:  “Richard Creighton.”

KATE:  “Richard Creighton.” (pause) “Who are you?”

RICHARD: “I’m your husband.”

After another moment or two:

KATE:  “Where am I?”

RICHARD:  “At home in your bed.”

KATE:  “Where’s my home?”

RICHARD:  “Knoxville, Tennessee.”

Shortly after that, she got up and is now taking her shower.

I relate this incident to convey just how much of her memory she has lost in the past few months. There is something else. I am amazed at how well she adapts to having so little memory. Except for several attacks of anxiety mentioned in other posts, I haven’t noticed any display of anguish. That doesn’t mean I haven’t observed anything else that might be a symptom of her concern. Day before yesterday, she was quiet most of the time I was with her (until bedtime when she was talkative). When she has her quiet moments, I wonder what she is thinking. Is she thinking about herself and what she can’t remember? Is she wondering what is the matter with her? I suspect so. She is very perceptive and insightful. I am still surprised when she makes comments about me that are very much on target. She can’t remember my name. Sometimes she doesn’t recall that I am her husband, but she has a good grasp of who I am in terms of personality. She knows my OCD tendencies. She has always been a good observer of her own qualities. That makes me think that she may be suffering more inside than she lets on.

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People Make a Difference

I have often mentioned the importance of our eating out as a way of minimizing the social isolation that is often a side effect of a diagnosis of Alzheimer’s. That and our regular visits to Panera and Barnes & Noble go along way to keep us socially active. The beauty of these social encounters is that they are not lengthy ones that place any special demands on Kate. One might think of them as very superficial and unimportant, but I have found them of significant value. Yesterday, we had three that were especially nice.

The first occurred at Panera. As Kate was getting something from the drink dispenser, I put our things down at the table where we often sit. I was opening Kate’s iPad and the jigsaw puzzle app when I noticed a young woman with her laptop at another table. We exchanged “good morning” greetings. Then she told me that she had seen us a number of other times and was struck by what a loving couple we seemed to be. She had noticed my setting up Kate’s iPad, getting her a muffin, and helping her coming in and out of the restaurant. I thanked her and I told her that Kate and I have been married 55 years and about her Alzheimer’s. I hadn’t remembered seeing her before. It was a short encounter, but I was touched by her words and the way she expressed them. She probably doesn’t think did anything of importance. For me, it was an great way to start our day.

The second experience was having dinner with a couple with whom we have shared a table on several occasions at Casa Bella’s Broadway nights. They called on Monday and asked us to have dinner with them last night. Kate, of course, could not remember them, but I told her she would recognize them. Several times, before meeting them she had me repeat their names and try to remember them. It was impossible. It’s one of those times I try to imagine what it must be like for her, not remembering the names of anyone around her. It turned out to be a good evening. They are very easy to talk with, and Kate was not put on the spot in any way. They had remembered Kate’s drinking iced tea and brought her a box of tea to take home with her. We had a good time. I don’t believe they invited us thinking that they were doing something special for us. It was just a simple invitation for dinner, but it’s just one more uplifting social encounter.

We bumped into someone who stopped us on the way out. She had remembered me from my visits with Dad when he was in a nursing home. Her father sat at the table next to him. We often chatted, especially with her little boy. We talked with her family and her for about ten minutes. It turns out I have another connection to the woman’s husband. I had worked with his mother when her company was a client of mine quite a few years ago now. It’s been five years since I had seen her. She said her father, who was a good bit younger than my dad, is still there. It was another unanticipated encounter that was meaningful to me. Kate had not known the woman, so I know it didn’t mean much to her, but she enjoyed seeing her son. Children always brighten her day.

Once we were home, we watched a little of South Pacific. It was interesting to see that Kate was familiar with all of the music and some of the words. It was another good day and one that illustrates the power of both people and music.

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More on Insecurity

It was just two days ago that Kate got up and was worried because she couldn’t find me. I had been in the kitchen, and she hadn’t done a lot of looking. She was still in the back of the house when I found her. What was important was that I hadn’t seen her react this way before. Although I haven’t walked for three weeks because of a pinched nerve, I decided the days of my morning walk are over. I also wondered how soon it would be before I saw other signs of her insecurity. I didn’t wait long.

This morning I left the door open from the family room into the hallway where our bedroom is located. I have been closing it for years so that I might not disturb her while she was sleeping. I thought leaving the door open would help her find me the next time she is looking.

When I checked on her about 9:00, she was just getting out of the shower. I left her with the clothes I had laid out for her last night. A little after 9:30, she walked into the family room. She was wearing the pants I had put out for her but with her night gown instead of the top I had put out for her. She said, “Oh, there you are. I couldn’t find you.” Unlike the other morning when she seemed a little worried but still calm, she was definitely more concerned and said, “Don’t ever do that to me again.” When I told her I wouldn’t ever leave her, she said, “Promise? Promise?”

When I was assured she was all right, I went to the bedroom to get her top. I gave her it to her, and she asked (using hand signals) if she should take off her gown. I told her she should. Once she had the top on, we were off to Panera.
From there, we went to lunch. As we walked along side the restaurant, I walked ahead of her. That is has been her preference for years. That seems to be the most comfortable way for her to know where she should go, just follow Richard. I was about 8 feet ahead of her when I heard her call my name. I don’t ever recall her doing that before (that is, while following me). I stopped to let her catch up. Then I turned around. When I reached the corner where we would turn toward the entrance, she called again rather sternly. I stopped and waited for her. I was going to do that anyway. I have learned the hard way that she loses me when I turn left or right. I don’t recall exactly what she said, but she almost seemed frightened. I apologized, and told me she needed me to stay with her.

There have been several times over the past few years that I have lost her. Each time was when we were traveling, and each time she was very calm during and after the time she was missing. Now she is expressing a degree of fear of being lost, and not just in “foreign territory” but right here at home. The changes seem to be occurring with greater frequency all the time.

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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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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.

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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.

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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.

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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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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.