Posted on

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.

Posted on

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.

Posted on

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.

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

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

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

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.

Posted on

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.).

Posted on

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.

Posted on

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.