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.

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.

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?

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.

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.

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.

Growing Confusion

I can’t say that I am observing any new symptoms of Kate’s Alzheimer’s; however, I sense that she is sinking deeper into confusion. The things I report below may sound familiar to you. Just try to imagine that the way she looks and the way she says things suggest something more serious than before.

One of those things is a more consistent failure to realize she is at home. She is routinely ready to take her toothbrush and toothpaste whenever we leave the house. I think she believes we are leaving a hotel. It is becoming commonplace for her to ask where we are when she wakes up.

It also involves an increase in the frequency with which she doesn’t know I am her husband as well as the length of time it takes for her to accept that I am. As we walked from the car to the restaurant for lunch day before yesterday, she said, “Who are you?” I said, “Richard Creighton.” She said, “I know that. Who are you?” I said, “I’m your husband.” She said, “Oh.” There was no other indication of surprise, uneasiness, or enthusiasm. She got the information she wanted and accepted it. While we were eating, she said, “Are you the owner of this place?” I don’t think I have mentioned this before, but she often attributes things to me with which I have no connection. The most common one occurs when we are listening to music in the car. She often says, “Is that you singing?”

At lunch yesterday, she asked my name and then hers. Then she asked, “Who are you?” When I told her, she didn’t believe me. I decided to tell her about our first date and our courtship while I was working at the funeral home. As I recited these experiences she began recognize them. Then I told her we would celebrate our fifty-sixth anniversary next month. I don’t mean to suggest that all her memories came back. It was just enough for her to accept that we are married. Then she asked if we have children.

She is much needier now. She is comfortable with Mary, our sitter; however, when I arrived home that same afternoon, Kate was especially glad to see me. She asked where we were and wanted to get away. She was was relieved when I told her we were at home. I don’t think she feels as comfortable asking Mary where she is.

On the way to dinner that night, she told me she really needs me. She has said this many times before, but it seems different now. Her facial and vocal expressions convey a greater need than the way she used to say it.

The other night after dinner, she wanted to know what to do. This, too, is becoming more common. I told her she could work on puzzles while I watched the news. She did that for almost an hour. Then she got frustrated. I suggested she look at her “Big Sister” photo album. She did for a while but stopped when I put on a DVD of Les Miserables.

Last night as we walked along the sidewalk to Casa Bella, she said something nice that prompted me to remind her that we have been together a long time. She asked how long. I told her almost 56 years since our wedding. She gave me a funny look and said, “Whose wedding?” I repeated that it was ours. She said, “No. You shouldn’t even joke about that.” This time I didn’t try to convince her as I did earlier at lunch.

There are lots of little things that suggest her increasing dependence. One of those is wanting to hold my hand more often than in the past. She frequently says, “I don’t need to, but I feel better.” She also wants my hand to help her in and out of the car and accepts my help buckling her seat belt. During dinner last night, she repeatedly asked me if her iced tea and water was hers. This is not new, but it is more frequent now. She is unsure of what is hers and what is someone else’s. She recognizes that she makes mistakes and doesn’t want to drink one that belongs to another person.

I have been eager to celebrate the many good times we’ve had since Kate’s diagnosis. I’ve also tried to be honest about the problems we have faced. We still have many good moments, but there is no escaping what lies ahead. It saddens me deeply to watch her slowly drift away like this, but I am heartened by hearing from others about precious moments with their loved ones who are farther along on this journey than Kate. In addition, I feel a greater resolve to make the rest of her life as fulfilling as I can.

A Few Things From Yesterday

Kate woke up at 5:00 and said, “Hey.” I looked over and saw her looking at me. I asked if she needed help. She said, “Where’s the thingy?” I asked if she wanted to go to the bathroom. She did. After she got back in bed, I was wide awake and decided to stay up.

Around 8:30, I noticed on the video cam that she had gotten up. When I reached the bedroom, she was just coming out of the bedroom. She seemed awake. I asked if she was planning to get up for the day. She said she was. I asked if she was going to take a shower. She shook her head to say no. Then she said, “Do you want me to take one?” I told her it would be a good idea, that she had missed one the day before. She said, “Okay.”

After the shower, she went back to bed and slept for an hour before I woke her. She wasn’t eager to get up but did so anyway without lingering or protesting.

I took her to the hair dresser’s at 2:00. I was about to offer her my hand as she stepped onto the walkway but realized there was less than a two-inch elevation from the pavement. I said, “I was going to offer you my hand, but there’s not much of a curb here.” She took my hand and said, “That’s all right. I wouldn’t know where to go without it.”  Afterwards as we walked out, she said, “Take my hand.” I did, and she said, “I don’t really need it, but I feel more secure.”

I see signs of her need for security in other things she is doing. A good example is that she more frequently asks me what she can do when we get home. I guess it is getting harder for her to remember what her options are. That is similar to her waiting to follow me each time we get home. She never remembers where to go. With few exceptions (I can’t remember any.), she always asks me where the bathroom is.

We had about two hours to pass before leaving for dinner. We spent the first hour relaxing in the family room. She started out working on her iPad. After less than thirty minutes, she put it down, closed her eyes, and rested in her chair for another thirty minutes. I told her we had another hour before dinner and asked if she would like to go to Barnes & Noble. She hesitated. It looked like she thought I might want to go. I told her I was fine staying at home. She did as well. This is becoming more common now. For such a long time, she rarely wanted to spend much time at home. Now as she is feeling the need for rest, she is less likely to accept an opportunity to go out. It’s just one more sign of how she and our lives are changing.

We ended the day with dinner at Bonefish Grill where we had a good social experience. We ran into a man who was a very good friend and admirer of my dad. They had both been students in a writing class for several years. They struck up a friendship that lasted until Dad’s passing in 2013. It was an interesting relationship since this friend is just one year older than I am and 26 years younger than my dad.

He was with his significant other who has dementia and just moved to Knoxville from New York City. She has been quite involved with the performing arts and had a neighbor with her who operates a ballet school. The conversation broke down into one between the dancer and me and Kate and our friends. I was glad to see Kate so actively involved in conversation. I don’t know what she said, but at one point she turned to me and asked how long we had been married. Our friends had obviously asked her, and she didn’t know. We both left the restaurant feeling energized. Eating out continues to offer us such experiences.

Thoughts on Dependence, Appreciation, and Responsibility

Yesterday was another very nice day for Kate and me. It was just one of many. It was also a day when I was a little more mindful of how dependent she is. Like other days in recent months, she looked to me for guidance on things you might not expect. For example, she asked me if she should take a tube of toothpaste and her hair brush with us when we went to Panera yesterday morning. After returning from lunch she asked me where she should go to rest. I told her she could lie down on our bed or the sofa in the family room. She chose the bed.

We don’t normally think about it, but our rational thought processes guide us most of the time during a given day. We remember that we have an appointment at a specific time and understand how much time we have to prepare before leaving. We remember the rooms in our homes and where we sit when we want to relax, and where to lie down when we are tired. When people with dementia lose these abilities, they don’t know what to do next. That is where Kate finds herself much of the time. It’s hard for those of us without dementia to fully understand what this is like.

Thursday is the only day of the week we don’t have a regular place for lunch. Since she was up early, and we had gotten to Panera and had no other commitments until haircuts at 3:00, I took her to a restaurant we’ve visited only a few times. It’s almost a twenty-minute drive, but it’s a nice place and worth it occasionally. We had a very pleasant lunch. Just before we left, she asked me if I thought she should use the restroom before leaving. We decided that was a good idea, and I walked her to it. As I often do, I waited outside the door just in case she needed something. It turned out that was a good thing. When she came out, she had a paper towel in her hand and didn’t know what to do with it. She hadn’t noticed the trash container inside. I took the towel and put it in the trash. Then I noticed a roll of toilet paper on the floor. I picked it up.

As we drove away, she said, “You know, when I’m with you I feel at ease. I know I’ll be all right.” I said, “Do you feel uneasy when I’m not around.” She said, “No, I can handle myself all right. I just feel better when you are with me.” I’ve often heard her say things like “I’m glad you’re driving. I could get home by myself, but it might take me a while.” She recognizes she has a problem with tasks like these, but she also likes to think that she can really take care of herself if she had to. I am glad that is something she can hold on to.

Kate has always been appreciative, but she is becoming more so as her dependence increases. She thanks me for specific things like helping her find the bathroom or getting back to bed. She also thanks me at times when I haven’t done anything. I occasionally read several online message boards for caregivers. I realize that many caregivers don’t receive this kind of gratitude and, because of that, sometimes feel resentful. That’s not an experience I’ve had. That makes caring for Kate easier than it would otherwise be. In fact, her decline and her appreciation act together to give me a greater sense of responsibility and determination to see that her needs are met. Like other caregivers, I am guided by two broad goals – to keep her feeling safe and secure and to keep her happy. Her response to my efforts reinforces that commitment to her.

That reminds me of something else that is true for all successful marriages. Marriage involves two people working together. Kate and I are still partners. Her dependence doesn’t mean I am working alone. She’s unable to do much for herself now, but she is still doing what she can for me. She does that with her expressions of appreciation. That makes all the difference in the world. When she was first diagnosed, we said we would face this challenge together, and we are.

Thirty minutes ago, Kate got up to go to the bathroom. I went to her. She asked me where the bathroom was. I showed her. When she came out, she asked if she could go back to bed. I told she could and that I would let her know when she needed to get up for her eye doctor’s appointment at 10:30. She thanked me. As started to walk away, she said, “What is your name?” I told her. She said, “What is my name?” She said, “And what is your name?” I told her again. She said, “What is my name?” She repeated both questions one more time. She didn’t ask out of fear or anxiety. She simply wanted to know our names. She looks to me for help with things like that. I’m glad to be here for her.

Troublesome Moments

Kate does an incredible job maintaining her cheerful outlook most of the time. She does so even when she recognizes that her memory is poor and that she needs help with many of her daily activities. There have been only a handful of moments when she seemed troubled, afraid, or anxious. At least two, perhaps three, of those occurred last summer or fall. During the first two, she was able to express her feelings of concern about not knowing who she is and where she was. There have been a couple since that time when she was unable or unwilling to explain why she seemed so troubled. In each case, I focused on trying to comfort her. That worked.

She had a similar, though less intense, experience yesterday morning. At 7:30, I noticed that she had gotten out of bed and was entering the bathroom. I waited until she come out and went to her. When I reached her, I was looking for that smile I mentioned in a post yesterday. She wasn’t smiling. Instead, she looked very puzzled. I sensed this was another moment that might be an anxiety attack. I walked over to her. She said, “What now?” I put my arms around her and said, “Right now, I just want to hold you.” We held each other tightly for a moment before I suggested we go over to the bed.

At first, I thought I would help her into bed and try to comfort her as I sat beside her. I had a second thought and said, “Would you like me to get in bed with you?” She said she would like that. I took my shoes off and, fully clothed, got into bed. I asked if she could tell me what was troubling her. She said, “I don’t know.” I said, “That’s all right. The important thing is that we are together.” She agreed. Neither of us said a word for another thirty minutes before she fell asleep. Not wanting to wake her, I stayed with her another ten minutes. She opened her eyes as I started to get out of bed. I said, “I’m going to the kitchen. I’ll be there if you need me.” She smiled and closed her eyes. The crisis had passed.

This experience is another example of how well Kate’s intuitive abilities are working. It makes me think of two things. First, countering her feelings of anxiety or fear with a response that engenders comfort and security is the best approach.  Before Alzheimer’s entered our lives, I would have have asked what was troubling her, and she would have been able to give me an answer. We would have talked about it. I would have tried to think of a rational way to address the problem. In this case, she couldn’t explain what was wrong, and I have learned that it doesn’t work to try to “fix things.” I am reasonably sure that this moment was like the others. She couldn’t understand anything – who she is, where she was, or what was happening to her. Telling her she has Alzheimer’s didn’t seem like the right thing. The only thing to do was comfort her. My words were of little importance. I only had to be with her. Once again that worked.

I believe there is something else that is relevant. In another post yesterday, I mentioned that she is still able to learn some things intuitively. That seems to be happening with our relationship. She is increasingly dependent on me and is aware of it. In recent months, she has been especially appreciative of things I do. Some of this comes immediately following something specific I have done. Other times, it comes out of the blue. She says things like, “I’m glad I’m with you. I couldn’t find my way home.” She also says, “When I am with you, I feel safe.” I don’t think that arises from any special fear of others. I think she may be afraid when she doesn’t know the people around her or where she is. I’ve become a “security blanket” for her. I think that is one of the reasons she sometimes wants me to stay with her and the sitter. She is comfortable with them, but the amount of time and range of experiences she has with them can’t lead to the same feeling of security. Of course, all husbands and wives develop a certain amount of interdependence, but I am talking about a feeling that goes well beyond the way she felt before Alzheimer’s. This feeling has increased with her dependence, and, up to now, has helped to ease her anxiety and/or fear in moments like yesterday.

How long will this feeling that I can offer her security last? I hope forever. That reminds me of a quote of Maya Angelou’s that I posted recently. It seems even more appropriate to me now.

“. . . People will never forget how you made them feel.”