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Another Unusual Incident

Kate and I went to opera night at Casa Bella this  past Thursday night. I approach each of these evenings with both anticipation and a small measure of concern. These nights (6:00 to 8:30) have played a significant role in our therapy for almost six years. There have only been a couple of nights when Kate didn’t enjoy herself as much as usual. Those have been within the past few months and have related to changes in our seating arrangement and sometimes being part of a larger group. Now I sit beside her. That allows me to help her more easily, especially in whispering to her when she has questions.

If I had thought much about it, I would not have been concerned at all. After all, it is the Christmas season. That meant we had a generous supply of music for the season including a “sing-a-long” with “The Twelve Days of Christmas.” The crowd was caught up in the spirit of the season, and so we were.

We engaged in a little more conversation after the program ended. The result was our getting home a little later than usual. I was eager to help Kate prepare for bed and to take my shower. That shouldn’t have been a problem, but I didn’t anticipate what was about to occur.

I got Kate to the bathroom to brush her teeth, and she got caught up in the process. She always works hard to clean between her teeth even though I haven’t been unable to find anything. (I sympathize with her since I have a space between two of my teeth that seem to have nothing between but bothers me nonetheless. My dental hygienist believes it is where a crown meets the real tooth.) She took more time than usual, at least twenty minutes. She wanted me to watch what she was doing in case she wasn’t doing it the right way. This involved my watching her go from tooth to tooth using her fingernail like dental floss.

When she finished, she washed her face and arms. That wasn’t unusual except that wanted me to watch carefully. She wanted me to know exactly what she was doing. She put great emphasis on the upper portion of her forehead where her hair begins. During this process, she continually pointed her fingers toward me so that I could see what she was getting out. She sometimes refers to “them” as “thingies.” I’ve never been able to see anything but acknowledge that I have seen them.

When she got to the bed, it was time to work on the toes. She runs her fingers up and down between each toe and can repeat this process several times. That night was one of those times. Then she wanted me to do it. I complied. When she got in bed, she began to pull her hair. Several times I started to step away from the bed. Each time, she called me back saying, “I want you to see this.” This incident was not unique except for the duration. I finally got to shower almost an hour and a half after getting home. She seems to be getting more obsessed about pulling her hair, picking her teeth with her fingernail, and cleaning between her toes. I wonder how far this can go.

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Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.

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Decline, Sadness, and Dependency

Yesterday I saw the following tweet from another caregiver, Jennifer Fink, who has a podcast called “Fading Memories.”

Watching Mom decline & lose the person she was is a constant source of low grade grief. That’s why support is crucial for #caregivers. I get a lot of advice & inspiration from my #podcase guests. I hope sharing that helps all of you.

I wrote a reply in which I agreed that the hardest part of caregiving for me is just that, watching Kate’s decline. I went on to say that I have been sustained by the knowledge that she needs me. That has been especially true the past two days.

On Wednesday, Kate was especially warm and friendly to our sitter when she arrived. It appeared that she thought Cindy was a long-time friend whom she hadn’t seen in a while. Kate was lying on the sofa and got up to give her a big hug. I chatted with them a few minutes before leaving and was happy to see that didn’t seem disturbed when I left.

When I got home, the situation was different. I heard the two of them talking as I walked in. Cindy said, “There he is.” Kate had been asking about me. She beamed when she saw me but wasn’t very emotional; however, after Cindy left, she told me how glad she was that I was back and that she feels better when we’re together. This is not unusual. She has expressed this feeling many times, but now I sense a deeper recognition on her part that she is very dependent on me.

Yesterday afternoon, we went for haircuts. I helped her out of the car and was holding her hand as she stepped out. In a second she looked afraid like she was lost. I said, “Are you all right?” She said, “I looked around and didn’t see anybody I knew and didn’t know where you were.” She was almost in tears but made a quick recovery as she realized I was with her. It surprised me because it happened so suddenly, and I was holding her hand the whole time.

After finishing with Kate, the stylist walked Kate to the front where I was waiting. I got up to meet her. She hadn’t seen me yet and was peering all around looking for me. When she saw me, she broke down in tears. I walked to her and gave her a hug as she cried. Then, talking to the stylist, she said, “I wouldn’t want to live without him.” (I don’t know that I mentioned it before, but sometimes I sit in a chair next to her as she gets her hair done because she has been uneasy.)

Something that is a bit more typical occurred this morning. As I was finishing breakfast, I heard her say something. I got to the room as she started to sit up in bed. She wanted to go to the bathroom, but first she said, “Where am I?” This began a twenty-minute period during which she asked that or “Why am I here?” multiple times. When she asks, I always tell her the truth even though she has difficulty believing it. I feel that telling her something else could be just as problematic. I am going to think of a way to redirect her attention. That may be the best way to handle this.

I ended up showing her a picture of her mother and taking her to the family room to see if anything would jog her memory. She liked what I showed her, but it didn’t make her feel any better. She asked what she “should do now.” I told her she could go back to bed. That was exactly what she wanted to do. I asked if he would feel better if I brought my things to the room and stayed in the room with her. She said, “Oh, yes. Thank you.” I put on an album of cello adagios, and she has fallen asleep.

Often there is little I can say to comfort her. I think just being with her and talking in a comforting tone of voice works better than anything else.

These experiences have an impact on me as well. They remind me that I am her “security blanket.” I think of that as a challenge, something to live up to, and that overrides any sadness I might feel.

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Feelings of Insecurity and Appreciation

Yesterday was another of those days when I noticed more signs of Kate’s decline. She was especially dependent and cooperative in getting up and dressing. She was so cooperative that she was dressed and ready for the sitter in half the time or less. That turned out to be good because it enabled us to make a quick trip to Applebee’s for a gift card that the sitter uses to pay for Kate’s meal each Monday.

It was also a morning when she didn’t recognize me as her husband. She didn’t act surprised when I told her. She also didn’t remember her family. As we left the bedroom, I gave her the usual tour of the family photos in the hallway. We also looked at a few other pictures in the family room. As we went to the car, she became teary and thanked me for helping her. She tried to say more, but the words wouldn’t come to her. She suggested that I could say them better. I don’t remember exactly what I said, but it was something like, “You want me to know how much you appreciate my help.” She nodded. She started to cry, and we stood a moment in the garage hugging each other. These moments are not unusual. They are times when our hugs communicate our strong feelings for each other, but I always wonder what else they might say. I know that on my part they say, “I know our time is running out. I want you to know that I love you and will care for you all the way.” Is she thinking about the seriousness of her own condition? That she is worried? That she is losing her ability to express her feelings? That she is afraid of the future? I just don’t know.

When Cindy arrived, I told Kate that the two of them would be going to lunch and that I was going to Rotary. She didn’t look uneasy about that, but she did say, “Why can’t we go to lunch together?” Then she gave me a look that suggested she thought I was deserting her. I walked over and gave her a hug and said, “I love you.” She said, “I love you too.”

After getting home, we spent a few minutes looking at one of her photo books. It wasn’t long, however, before she said she was tired and wanted to rest. I left the sofa to her and took a seat in a chair across from her. I put on an album of Barbra Streisand favorites. In a little while, I heard her whimpering. I told her that if I had known the music would make her sad, I would have played something else. She said, “No, I like it.” She wanted me to come back to the sofa and sit with her. We sat there enjoying the music for another fifteen minutes until it was time for dinner.

Today is starting the same way.  While working on this post at 8:00 this morning, I saw that she was sitting up in bed. I went back to her. She seemed to recognize me, but nothing was said to make me sure. I know that she was quite comfortable with me. I said, “I bet you wanted to go to the bathroom.” She said, “Where is it?” I said, “I’ll show you.” I helped her up. She didn’t try to assert her independence. She extended her hands for me to assist her. She continued to hold my hand on the way to the bathroom. She said, “You know, I am sure glad you’re here.” I told her I was glad too.

When she finished washing her hands (arms and face) and brushing her teeth, she looked around for a towel but didn’t see it. I took it from the towel rack beside her and handed it to her. She said, “I’m glad I have you. You always seem to know what to do and what to say.” Then she said, “What do I do now?” I told her it was still early and that she could go back to bed. She asked me to show her where to go and asked me to take her hand.

After she had gotten into bed, I told her I would be in the kitchen and to call me if she needed anything else. She appeared to be uneasy about that and asked where the kitchen was. I asked if she would like me to stay with her. She said she would, so I went to the kitchen and brought my laptop. When I got back, she said, “It means a lot to me that you’re here.” I said, “I think we were meant to be together.” She said, “Me, too.” She followed that with, “What’s your name?” I told her, and then she asked her name. A few minutes later, she asked my name again and where we were.

It could be another day of insecurity, but based on previous experience, she could be quite different when she finally gets up. I am getting a better appreciation of what I have heard from other caregivers about the difficulty predicting what comes next.

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An Example of Eyesight Problems and Dependence

The other day I commented on my concern about Kate’s eyesight. At Casa Bella the other night we experienced another example of the problem. In this case, it illustrates the impact it can have on her and also her dependence on me.

The room had been rearranged to accommodate the needs of the various sized groups. The table for our group was set up for nine. That immediately caused me to wonder how Kate would adapt to a larger group. More people at the table means it is more difficult for her to understand the conversation. That makes the whole dining experience less comfortable for her.

I have always seated Kate on the side of the table that would give her the best view of the musicians. This time, however, her side was close to the back wall of the room, and she would have been in the middle with two people on either side of her. I decided it would be easier for her to get in if she took the side with her back to the musicians. The way the table was positioned I thought she could easily turn to see them as they performed.

Of course, there was no problem during the first hour before the music started. We were able to order and eat our meal while conversing at the same time. Once the music started, Kate turned her attention to the musicians. It wasn’t long before I noticed that she had a worried look on her face. She began to look around the room in all directions. I realized that she had lost sight of me and was concerned. She turned to the man beside her and said, “Have you seen my husband?” He didn’t hear her, so he didn’t respond. I reached my hand across the table and touched her arm. She looked across the table but didn’t recognize me. I grasped her hand. She looked more closely. Then she realized it was me. She heaved a great sigh of relief. I don’t know that anyone else observed her, but she was very noticeably disturbed when she didn’t see me and equally relieved when she finally did. This was another occasion when I felt like I will soon need to change our seating arrangement. I am going to try to hold off a little longer while I consider what is best for Kate. At the moment I still think a table for two would be best in the long run.

Right now there is something else I am thinking about. Casa Bella is preparing to celebrate its eightieth anniversary. They are planning a kickoff dinner in September and have made arrangements with the city to block off the street in front of the restaurant for a special Italian dinner. There won’t be any seating in the restaurant itself. I have made reservations, but I am concerned that being in such a large crowd might be overwhelming for her. I imagine they will have musical entertainment, but it won’t be like the more intimate venue inside the restaurant. I have avoided situations like this for more than a year. On the other hand, we feel close to the owners of the restaurant and the people we have met at the regular music nights. I hate to miss this event.

Apart from Kate’s uneasiness because she didn’t see me, we had a great night. Kate thoroughly enjoyed the music even more than she has at a few other recent music nights. I was happy about that.

As the situation at Casa Bella illustrates, her dependence on me is increasing significantly. It is obvious in a variety of situations. One is in her expressions of relief when I come home after the sitter has been here. I also see it around the house when she doesn’t know where I am and doesn’t remember the various rooms where I might be. Yesterday, for the first time, she thought I might be leaving her in the house alone. She had gotten up early again and taken a shower. Then she got back in bed. I told her I would get her up when it was time for lunch but to call me if she needed me. She looked scared and said, “You’re not going to leave me alone, are you?” I said, “I would never leave you alone. I will be in the kitchen.” She was greatly relieved.

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Kate’s Dependence on Me

As Kate has moves from one stage of her Alzheimer’s to another, there is never a clean break in her behavior. It is always a gradual process in which she gradually begins to stop doing things she did before or starts doing things that she didn’t do before. I do, however, have moments when I recognize that the change has become a fundamental shift from the way the was before to a new state. That is the way I feel about her present state of dependence on me.

She continues to assert her independence at times when I help her with daily activities like getting out of bed, helping her dress, holding her hand as she goes up or down stairs, and a host of other little things. The difference now is that they often take me by surprise because they are so much less frequent than in the past. The present norm is that I assist her with almost everything. Yesterday was a good example.

It was Wednesday, another afternoon for the sitter. I always feel under more pressure on those days because I want to let Kate sleep as long as I can but also give her as much time as possible so that we can get to lunch and return home in time to meet the sitter. Generally, she needs about forty-five minutes to an hour to get ready if she doesn’t take a shower. As I reported previously, she didn’t get up at all before I left on Monday. That has occurred only two or three times in the past, but it is hard for me to be sure when to wake her.

Yesterday, I wanted to leave for lunch about 11:30. With that in mind, I started playing some soft music about 10:30. At 10:45, I went in to wake her. I found she was awake but still resting happily. I could tell by the smile on her face that she was in a good mood. I sat down on the bed, and we chatted a few minutes. I told her I would like to take her to lunch and asked if she would like that. She smiled and said she did, but she was still very relaxed though I wouldn’t say groggy or confused. I changed the music to the musical Annie. She likes that, and it’s very upbeat and cheerful. I left to get her clothes.

When I returned, she hadn’t moved. I told her gently it was time to get up and she extended her hand for me to help her sit up. Then she said, “What now?” (She often needs me to tell her step-by-step what to do.) I suggested she go to the bathroom and that I would show her where it was. I helped her out of bed and led her there. She wasn’t sure what to do when she reached the door. I pointed to the toilet and said, “Toilet first.” When she was finished, she said, “What now?” I told her to wash her hands and brush her teeth. She has forgotten that she has a soap dispenser and how to use it. I asked her to put her hand under the nozzle. She didn’t understand. I showed her with my hand. She still didn’t understand. I took her hand and held it, gave her some soap, and told her to put her hands under the faucet and rub them together. She is also forgetting about using her toothbrush. Sometimes she just puts toothpaste on her finger and rubs in on her teeth. I picked up her toothbrush, put toothpaste on it, ran in under the faucet and gave it to her. I won’t go through the routine for dressing, but it is very similar. I guide and help her step by step. The only time she made any effort to assert her independence was while she was dressing, and that was minimal.

Her dependence is also expressed in her feelings about me. She needs me. When I returned home in the afternoon, she was lying awake on the sofa. Mary was seated in a chair across from her. When she saw me, she smiled and started to sit up. She said, “You’re one of my favorite people.” I went over and helped her to her feet. Mary said goodbye and turned to leave. Kate called to her and asked her to wait a minute. Mary turned around, and Kate put her hand on my shoulder and said, “He’s a nice man. A really nice man.” I don’t know if she recognized me as her husband at that moment, but she does sense that I am important to her. This goes along with her other comments about feeling “safe” with me.

As soon as Mary left, she wanted to know what we were going to do. I told her we would go to dinner. Before leaving, she looked at several family photos on top of our entertainment center. I walked over and looked along with her. Then she said, “Will you take me home?” She continues to think we are in someone else’s home. It isn’t constant. We talk about our home and things she likes, but she moves back and forth between knowing it’s our home and thinking it’s not. It is a challenge for me to know exactly what to say at any given moment. Sometimes I play along. Sometimes I don’t. For example, she was disappointed when we got home from dinner. She had wanted to go “home.” In that case, I told it was our home, and I would show her some of the things she likes about it. She didn’t say anything, but she didn’t mention any dissatisfaction once she was inside.

Another sign of her dependence is how much she needs my help staying occupied. That is something that has a greater impact on my personal time. Last night is another good example. Our general after dinner routine is for me to watch the evening news while she works on her iPad. As I have noted previously, it is getting harder to her to work her puzzles. She needs my help. Last night and several other nights recently, I have gone back and forth between my chair and hers to help her. That makes it a challenge to watch the news. After doing that several times last night, she put her iPad down and sat there looking somewhat frustrated. I suggested that we look at one of her photo books. We sat on the sofa and went through most of the “Big Sister” album. She was interested, but it was unusually difficult for her to recognize or remember “key players” – her, her brother, her mother, and her father. Even in photos that were side by side, she found it difficult to identify her brother and her father. She did better recognizing herself and her mother, but far from consistently. I tried to explain that the book focused on her and her brother and that if she just guessed who the boy was in a picture, she would be right if she said her brother. She could never have grasped that. As a consequence, I had to identify the people in almost every picture. Before we finished, I went to take my shower while she continued going through the album. She still seems to derive pleasure from looking at the pictures even though she doesn’t know who the people are. I am grateful for that but can’t help wondering how long it will last. I have always made an effort to go through the albums with her. It is something we both enjoy, but it is also nice for her to be able to enjoy them by herself.

My feeling about Kate’s increasing dependence is much the same as it has always been. Some of it makes caring for her easier, but it comes at a price. I would like her to be as independent as she can for as long as she can. She likes to be independent. I think that is true for most of us. It is sad to see her having to depend on me so heavily.

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Signs of Greater Dependence

When I went in to wake Kate yesterday, I saw that her eyes were open. I spoke to her. At first, she didn’t express any emotion. I walked closer and told her good morning. She smiled. I was glad to see that. We were off to a good start. Her smile soon turned to a look of puzzlement. It was the look that meant she was confused. I sat down on the bed. I said, “You look like you’re wondering where you are.” She didn’t say anything. I proceeded to give her my name and hers. She said, “Where are we?” I told her we were in our bedroom and told her to look around the room, that she might see something familiar. She glanced but didn’t give me any sign that she saw anything she recognized.

I talked with her a few minutes and then suggested that she get up so that I could take her to lunch. Getting up from the bed or a chair is beginning to be more difficult. As I helped her up, she screamed. She felt a pain in her right knee. That is the one with the arthritis. This was the first time she has felt any pain in a year; however, this was different than before. This time it was short-lived. Once she was on her feet, the pain subsided, and she didn’t complain of any pain after that. I took her to the bathroom to use the toilet and brush her teeth.

I showed her the toilet, but as often happens, she didn’t recognize it. I asked her to take a seat. Then she said, “That’s it.” She washed her hands and then started to brush her teeth. I went to the kitchen to take care of a few things. It wasn’t long before I heard our housekeeper tell her that I was in the kitchen. I walked into the family room where the two of them were standing. When she saw me, her eyes brightened, and she had the biggest smile you can imagine. She said, “There he is.” I walked toward her, and she almost ran to me. She reached her arms out to me and we embraced. Then she gave a great sigh of relief. I said, “So Linda told you where I was?” She said, “She did?” Then she looked at Linda, tears filled her eyes. She thanked her and gave her a big hug. To me, this is one more striking example of her increasing dependence on me. There have been times in the past few years when I lost her for a period of time, once for three hours in Niagara-on-the-Lake, Ontario. She wasn’t bothered at all. I was the one who was panicked. This time we were not more than fifty feet apart (though she couldn’t understand that) in our own house, and our separation was only minutes.

It also seems to me that she is more responsive to my suggestions. For example, she hasn’t been as slow to respond when I tell here it is getting to be bedtime. She is also decidedly more accepting of my help in dressing and holding her hand when we are walking to and from the car.

I can’t help wondering what comes next?

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Morning Incident

I continue to celebrate the fact that Kate and I have gotten along so well, but that is not to say everything is all right. As she sinks further into the depths of Alzheimer’s, she has become much more insecure and dependent on me. I have mentioned several times when she has experienced attacks of anxiety or panic. Something similar, though less intense, occurred yesterday morning.

Watching the video cam, I noticed her turning over in bed. I thought she might want to get up for the bathroom. For a short time thereafter, she didn’t move or make a sound. Then she said something that sounded like “Hey.” I headed to the bedroom. From the door, I saw that she was awake and looked relaxed. She didn’t say anything. I walked over and sat down on the bed. She looked uneasy. I said, “You didn’t know where I was.” She nodded, and tears welled up in her eyes as though she was about to cry. I said, “You probably didn’t know what to do.” She nodded again, and I said, “You don’t have to worry. I am always here. I would never leave you alone.” I talked with her a few minutes. She felt secure again. Then I asked if she would like to get up or rest a little longer. She wanted to rest. I asked if she would like me to bring my computer into the bedroom and stay with her. She did. In a few minutes, she was sound asleep.

This was a little problem. It was not intense, and it lasted only a short time. Had I not gone in when I did, she might have become more worried, at least for a longer time. It’s a good reminder of how important it is to be with her and to be observant. It is also a sign of her insecurity. I don’t find that surprising. If I didn’t have any memory, I would be frightened as well.

Follow-up

I remained in the room with her until it was time for me to get her up for lunch. She took a shower and then got back in bed. It took me three tries over thirty minutes to get her up again. I was careful not to push her. When she finally got up, she wasn’t smiling. I asked if she were upset with me. She indicated that she was. When I asked why, she said, “I don’t know.”

I helped her get dressed, and she seemed fine when we left for lunch. She was definitely not as cheerful as she was yesterday, but we had a nice time.

The rest of the day went well. We relaxed at home until time for dinner. She did not nap at all. That is very unusual. She worked on her iPad. After dinner, we watched our granddaughter’s high school graduation online from Texas. She received her diploma early. Then I took my shower and prepared for bed. To my amazement, Kate continued to watch for another hour even though she didn’t know anyone. I went in to bring her to bed. She said she wanted to sleep on the sofa where she was sitting watching the graduation. I encouraged her to come to bed, and she finally consented.

I don’t know what was going on in her brain, but she wasn’t as happy as she was the day before. Once in bed, she was very relaxed and seemed fine. I can’t help wondering what she will be like this morning.

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Another Example of Kate’s Insecurity

Over the past couple of months I have felt much better when leaving Kate with a sitter. There have been one or two occasions when she asked if I couldn’t stay with them, but it didn’t sound like she was doing so as a result of any insecurity. It was more like she just wanted me to share in their time together.

This past Friday Kate was asleep on the sofa in the family room when I left. I started to wake her to say goodbye but didn’t. When I walked into the kitchen on returning home, I heard Mary say, “There he is.” I walked into the family room. Kate was sitting on the sofa. She stood up and said, “Thank God you’re here!” (That’s not something she would typically say.) I walked over to her, and she extended her arms to me, and we hugged. I told her I was sorry I hadn’t said goodbye. She said, “I was all right. I just didn’t know where you were.”

She was obviously relieved to see me. I’m not sure that Mary remembered where I was going. Even if she did, Kate’s memory doesn’t last more than a few seconds. She would never have remembered. On a few other occasions, Mary has mentioned Kate’s asking where I was, but this was the clearest indication of the intensity of her insecurity when she doesn’t where I am. I’m not ready to believe that this will become a pattern for the future, but I will be more alert to that possibility.

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Feeling Insecure

The other day I said I had been involved in a series of Twitter messages about people living with dementia and their need to feel safe and secure. I had to admit that I hadn’t given a lot of thought about that. Perhaps that is because Kate has appeared to feel both safe and secure.

I am beginning to pay more attention now. Kate can take credit for initiating that interest when she periodically says “I feel safe with you.” At first, I wondered if she felt some special threat from a person or people around her. After some reading and reflection, I began to consider how uneasy one could feel without a memory. Judy Cornish, the author of The Dementia Handbook, tweets quite a few messages about the importance of safety. Her work has sensitized me even more.

Recently Kate has exhibited more signs of insecurity. Even in the past week, she has seemed particularly needy. Like everything else, this didn’t arise suddenly. For years she has wanted to follow me rather than beside me when we are out. The most common occurrence is in restaurants. She doesn’t want to follow the hostess. She wants me to do it, and she will follow me. At first, I felt a little awkward but quickly adapted. That has its own problems. She frequently falls behind or fails to see me turn and loses me. For that reason, I keep looking back to see that she is still with me.

As noted in previous posts, she started following me in the house last spring or summer. That is when she was no longer able to remember the layout of the rooms. She asks me where the bathroom is every time she needs it. That occurs even when she is seated in a chair in our bedroom that is two feet away from the bathroom. On two occasions in the past few days, she has wanted to hold my hand as we walked through the house.

In the past, she often objected to holding my hand because she saw that as a sign of dependence. Even now, she sometimes rejects my hand when offered. The more common pattern, however, is her asking to hold my hand. This began when she was walking up and down stairs or up and over curbs. Now it seems to occur in public places where she fears she might get lost. I know this because she has specifically mentioned it. Previously, she didn’t appear to be fearful of getting lost at all.

This insecurity extends to more mundane things than getting lost. At restaurants, she has periodically asked me if her glass of tea is hers. That is becoming much more routine. When Ken and Virginia were here, they got to observe that several times. She doesn’t want to do the wrong thing and wants to make sure she has the right glass.

At home, she asks, “Where do you want me?” or “Where should I go?” When I put her medicine on the table or island in the kitchen and tell her these are her pills, she forgets and asks if they are hers or if they are for today or tomorrow. After bringing her nightgown to her, she doesn’t start to put it on right away. When she is ready for bed, she asks if it is all right to put it on. She asks if she should get in bed. The list could go on and on. Once again, she doesn’t know what to do next and doesn’t want to make a mistake. She depends on me to protect her from doing the wrong thing.

I’ve also noticed signs of insecurity when I leave her with a sitter. Sometimes she asks if I can stay or go to lunch with them. Other times she asks if she can go with me. Recently, she told the sitter she would rather rest than go to lunch right then. She ended up resting the entire four hours I was gone, and she hadn’t had breakfast. I think Kate might have felt insecure going out with her. With the same sitter yesterday, it went quite well. She wasn’t the least bit bothered when I left and seemed fine when I returned. After Cindy left, however, she said felt better when I was with her.

The most dramatic example of her insecurity occurred Sunday before we were to attend a musical concert. I dropped her and a friend off at the theater while I parked the car. When I returned, I discovered that she felt sick. I decided we should leave. She didn’t want me to leave her while I went back for the car. She seemed to get better on the way home. She rested at home and never showed any further signs of a problem. I do know that she needed to go to the bathroom. Apart from that, I never noticed any other signs of illness. She was fine the next day. I think she just felt insecure with our friend whom she can’t remember.

One other little thing occurred yesterday morning. As I led her from our bedroom to the kitchen, I automatically took her hand. Often, when I do this, she resists. This time she held it firmly all the way to the kitchen. Shortly thereafter, we were on our way to Panera before going to her dermatologist. She thanked me without saying why. I thanked her and said, “I love you.” She got a sad look on her face and tears welled up in her eyes. As we turned left into the street leading to the restaurant, she grabbed my hand. The turn must have been unexpected, and she was frightened. It was less than a block to Panera, but her fright continued.

Last night at dinner she wanted me to sit on the same side of the booth with her. We have done that a number of times in the past, but this was quite unusual for her to request that. The way she asked it seemed like she would feel better if I sat closer to her than across the table.

All of these things and more have made me more mindful of how significant being safe and secure can be to someone with dementia. I need to be especially sensitive to this in the days ahead.