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Another Slow Start and Strong Finish

Because we were going to Nashville yesterday to visit our friend, Ellen, I wanted to get Kate up a little earlier and hoped that would be possible given that she went to bed earlier the night before. That wasn’t to be. It took over an hour to get her out of bed. She was very tired, but I didn’t rush her. She never got upset with me. Nor did she give me any strange looks as though she didn’t recognize me. Close to the time she got up she said, “Where am I?” I told her she was in her bedroom at her house in Knoxville.” She said, “Who are you?” I said, “I’ll bet I don’t look like a stranger.” She said, “No.” Then I told her that I am her husband. She didn’t express surprise or any other emotion. Then she asked, “What’s your name?” After I told her, she said, “What’s my name?” I told her. Again, she asked, “Where am I?” Then, “What’s your name?” She asked me to repeat my name slowly. Over the course of the next 10-15 minutes, she repeated these questions several times.

She wanted my help getting out of bed. She also wanted me to tell her what she should do. I suggested that she go to the bathroom and then get dressed. That gave her too much information. I led her to the bathroom. After using the toilet, she wanted to know  what she should do. I told her she should brush her teeth. When she was finished, I helped her with her clothes. She still likes to do as much as she can, but she also likes me to help, especially determining the front and back of her pants and top. She also gets her feet stuck in the pant legs. I get the bottom of the pant legs over her feet. Then she is fine.

After she was dressed, she began to appear normal. We had a quick lunch at Panera and left for Nashville where we had a good visit with Ellen. She was surprised and glad to see us. I am sure that her daughter had told her we were coming. She just can’t remember. That is one of the few signs I can see of her memory problems. She is always surprised to see us. I also notice it in other things like her not remembering the names of her grandchildren. During our last visit, I noticed some signs of confusion. This time she seemed more confused. I was surprised, however, that I was able to understand more of what she said this time than the last. It could be that her ability to speak goes through ups and downs in the same way that Kate’s memory does.

We were with Ellen a full two hours. We don’t often stay that long, and it didn’t seem long at all. I didn’t play as much music as our two previous times, but it was just as meaningful as before. I played a series of YouTube videos of Renee Fleming. At one point, Kate reached out and took Ellen’s hand, and they shed a few tears as they enjoyed the music. I love seeing each of them express such enjoyment. I sometimes wonder how long we will be able to keep up these visits. Both of them are declining, but I don’t see anything yet that will prevent our continuing to come. I hope that’s so.

We stopped for dinner on the way home. It was a restaurant that is a cut above most of the ones we frequent, but it seemed like a good way to celebrate such a nice afternoon. It made for another nice moment for Kate and me. We got home late, so I’ll be interested in seeing when Kate gets up this morning. I checked on her a few minutes ago. She had gotten up to go to the bathroom and then went the guest room and got into bed. When I asked if she wanted to rest a little longer, she smiled and said she did. I didn’t see any sign of confusion, and she seemed both cheerful and relaxed.

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Another Early Start

This time last week I had assumed Kate would continue getting up late, but I was wrong – at least for the past four or five days. This morning I checked on her at 8:30 and discovered she was already in the shower. I put her clothes where she would see them when she walked out of the bedroom and started making a few preparations for the Trick-or-Treaters tonight. About fifteen minutes later, I heard her call my name. When I reached her, I found that she wanted help fastening her bra. This is clearly becoming a new morning custom. She also wanted help identifying the front and back of her pants so that she could put them on the right way. That is the only help I gave her this morning apart from selecting and putting out her clothes.

We arrived at Panera shortly after 9:00. I suspect we will stay here for another hour or so and then go back to the house before going to lunch. I much prefer this schedule because we get to spend some time together. It also means I don’t have to rush her to get ready for lunch and return home for the sitter who arrives at 1:00. Getting up early lets us enjoy a more relaxed morning. I tend to think that is good for Kate, but it really is good for both of us. We’re off to a good start. And, I didn’t mention that she is in a cheerful mood as she has been for at least five days in a row.

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Increasing Dependence

I suspect becoming dependent on others is something most of us want to avoid. I find this is true among most of the seniors I know. Yet there is a certain inevitability if we live long enough. Alzheimer’s has been the big factor in Kate’s dependence on me. She got along reasonably well until she stopped driving. Since that occurred following an accident, she never fought losing her car. She was bothered, however, by her dependence on me to get her from place to place. Even though she was getting out, I think she felt tethered to the house. That may account for why she still doesn’t like to stay around the house for extended periods of time. She likes to be out, and I have enabled her to do that.

Of course, there are some things we are glad to let others do for us. Kate has never shown any concern about my taking care of meals or the laundry. Neither has she been bothered my role in giving instructions to our housekeeper. One surprising area in which she has not asserted her independence is shopping for clothes. I can’t remember the last time she expressed an interest or need to buy new clothes. At first, I would initiate a shopping trip. She found it confusing to look through so many different options. Sometimes she bought things that she never wore. Gradually, I started shopping without her. Now I buy everything online. It is easier for me. The only problem I’ve had is getting the right fit. It seems we have settled into the right sizes. That is working well.

I think that retaining independence is even more important when it comes to the many everyday tasks in which we are involved. That is especially true for those of a personal nature like getting dressed, bathing, and using the toilet. Kate has often asserted her independence in these areas. For a long time she resisted taking my hand when going up or down stairs or curbs or getting in and out of the car. Now she is inconsistent. Sometimes she welcomes my hand. Often she asks for it. I am accustomed to her saying, “Hand” as we approach a curb.

Right now we are going through a transition to her becoming substantially more dependent. Until the past six months or so, she has resisted my involvement with her clothes. By that I mean selecting or helping her select what she wears. We are now coming close to my picking out everything she wears. She seems to appreciate this. I think it’s a little like shopping. There are so many options that she gets confused.

The latest change that has occurred in the past week or ten days is her asking for and/or accepting my help with dressing. It is only in the past few days that she has asked my help fastening her bra. That looks like something I will be doing a lot of from here on out. For weeks or months, she has asked my help in determining which is the front and which is the back of her pants. Now she is asking me to help putting them on. The same is true for her tops, and yesterday, she gave me her socks to put on for her.

She has always been a little slow to wake up in the morning. That is even truer now. She often seems very confused. This morning I checked on her and discovered that she was awake but still in bed. I asked if she wanted to rest a little more or get up. She wanted to get up. She looked like she didn’t know what to do. I suggested she take her shower. She asked where. I told her in our bathroom. Again, she asked where. I pointed to it. Then she asked me to help her up. Once she was up she took my hand and wanted me to walk her to the bathroom. When we got to the bathroom, she said, “What now?” I told her to take off her gown, and I would start the shower.

At moments like these, she is almost completely dependent, but once she got in the shower, she got along all right. I should say until she got out. Then she wanted my help getting dressed. She still has some ambivalence about my help. Sometimes she will say, “I don’t really need your help, but I feel more comfortable (with it).” She often says the same thing when taking my hand going up and down curbs. As you can tell, we are entering a new stage that is different for both of us. We are both adapting.

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A Nice Day, But More Confusion

Right after we sat down for lunch yesterday, Kate said, “Who are you?” I told her, and she asked, “What’s my name?” Then she asked, “Are we related?” I said, “Yes, we’re married.” She looked at me in disbelief and said, “Married?” This led into questions about children. When I mentioned our having a daughter, she was equally shocked. She looked so puzzled that I was afraid to say too much. I thought that might be more disturbing than helpful. Most of the time we have this kind of conversation she simply accepts what I say. This was one of several times she seemed disturbed about not remembering.

We returned to the house after lunch. We had about an hour before her appointment for a massage. I thought she might work on her iPad during that time, but she was tired. She sat down in a chair with her iPad but immediately closed her eyes and went to sleep. That is something else that is not typical. She often rests but rarely goes to sleep, especially sitting in a chair. She usually moves to our sofa or to our bed.

We came back to the house after her massage. As we turned on to the road leading to our neighborhood, she said, “I used to live around here.” When we approached our house, she pointed to it. I said, “Does that look familiar?” She said, “Our house.” She said this in a way that made me think she knew it is where we live now. I pulled into the garage, and she saw her collection of Dr. Pepper signs and knick knacks. She said, “Oh, I remember these. I think I used to live here.” Once we were inside, she commented on the family room and said something about having lived here in the past. I told her it was where we live right now. She expressed some surprise but not the kind of disbelief she had shown in our lunch conversation.

I gave the iPad to her, and she took a seat in the family room. Instead of working on her iPad, she picked up her Big Sister photo book. She spent about ten minutes looking at it when she received a phone call from Meg Wright, a longtime friend from Dallas. She was a bridesmaid in our wedding. I had shown Kate the picture just before she called. That turned out to be a good opening for their conversation. She handled herself beautifully. She was very natural. If I hadn’t known better, I would have thought she was perfectly normal.

When she ended her phone call, she picked up the photo book again and spent another twenty minutes going through it. I have heard other people talk about the value of a memory book, but I am getting a better appreciation now. Going through multiple photographs of various family members jars her memory in a way that is much more powerful than my telling her about her father, mother and other members of her family. Once again, it reinforces the impact that her intuitive qualities have. I saw no sign of puzzlement as she leafed through the pages. She continues to identify specific pictures that she especially likes. They aren’t random choices. She keeps noting the same ones. She really connects with them.

We topped off the day with dinner at Casa Bella. This is the second week they are featuring music from Les Miserables. Since we had attended a performance last week, we ate in a separate dining room than where the music performed. We had a good meal, but I did find it sad that she is completely forgetting all of our memories of the years we have eaten there. She asked me the name of the restaurant, but the look on her face told me there was no recognition. During the meal, however, she did say, “I remember being here before.” When she asked about dessert, I told her we were going to have the Amaretto cheesecake. We’ve eaten this dessert 90% of the times we eaten there. She didn’t recall it, but she did love it.

When we got home, she picked up her iPad and took a seat in the family room. She continued working on it for over an hour before I told her it was time to get ready for bed. Earlier she had said she was very tired and wanted to get to bed early; however, she was so engaged with her puzzles that there is no telling how long she would have continued.

I got her a night gown and told her it was time to put it on. She took it and went to the bathroom next to our bedroom. I was working on this blog post when I realized it had been a while since she had left the room. I called to her. She responded but I didn’t see her. The lights were on in the bathroom and the room where she keeps her clothes. It was dark in the guest room. That’s where I found her. She was in bed under the covers wearing her clothes including her shoes and socks . Her gown was beside her on the bed. I told her I would like to have her join me in our bedroom. She got up, and we walked through the guest bath to the hallway to our room. She said, “I’ll follow you.” At that point, we were about 10-12 feet from the doorway to our bedroom. Even that close, she was unable to recognize where she was.

Once in the bedroom, I told her step by step what to do. She did, however, put on her gown without my help. She is sometimes unable to do that. That reminds me that this morning was the first time she has asked me to fasten her bra. I have been amazed that she has been able to do that until now. After putting on her gown, she went right to bed. She was worn out. I joined her in another fifteen minutes. She was asleep then. I hope that will make it easier for her to get up this morning.

As I say so often, it was a nice day; however, her confusion seems to get worse almost every day. She is fading away faster and faster, something I wish I could stop. I’m quite familiar with the last stage of this journey, but I don’t think there is a way to adequately prepare for it.

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No Wake Up Call Necessary Yesterday

After having to wake her for five consecutive days, Kate got up on her own shortly after 10:00 yesterday. About 10:45, I checked on her and found that she had taken her shower and gotten back in bed. At 11:20, I checked again. She was still in bed and said she needed clothes. When she went to take her shower, she had her clothes in her arms. I went to the bathroom and brought them to her. She asked for her underwear. I couldn’t find them but knew that she had them earlier. I pulled back the sheet where she had been resting. There they were.

I went back to the bathroom to straighten up. She had used the two bath towels I had  out for her, but she had gotten into the drawer where I keep the wash cloths and hand towels. She had pulled out several of each that were thrown on the floor.

She put on her top. I reached up and straightened it for her. She shrugged and said, “You have to remember that I am capable of some things.”  As she started to put on her shoes, I was about to leave. She said, “Wait a minute. Don’t leave until I tell you.” These words sound harsher in written form than they were to me. She was trying to say, “I might need your help.” I stayed for a few minutes. When she appeared to be getting along fine, I said I was going to the kitchen. She didn’t stop me. A few minutes later, I heard her say, “Hey.” When I got to the bedroom, she wasn’t wearing her pants. She didn’t say a word, she knew I would understand. She couldn’t find them. I walked over to the chair in which she had been sitting and picked up the pants and gave them to her. She gave me a sheepish look and said, “Thank you.” For the rest of the day she was fine.

Since it was past noon, we skipped her muffin at Panera and went directly to lunch. Afterward, we came home for about forty minutes. She took that opportunity for a nap. She seems to have been tired all week, but not necessarily at bedtime. It makes me think about her sleep patterns as a sign of significant change. This started at the end of March when she started sleeping later in the morning. Since then her sleep as been erratic. She definitely gets up later than she used to, but once every week or so she surprises me and gets up early. That hasn’t happened over the past week.

Her sleep pattern has been accompanied by greater memory problems, confusion, greater dependence on me, and minor discomfort at my leaving her with a sitter. I know greater change is ahead. I just don’t know how quickly it will occur. If the current decline continues at the same pace, I am afraid it will be sooner rather than later. We are now less than four weeks away from our trip to Texas for Thanksgiving. Despite the changes that are occurring, it seems to me that we will be able to make it.

I have detected another minor change this week. Until the last day or two, she has called me by name when I was in another room and she needed something. Several times this week, she has just said, “Hey.” I take that as a sign that it is getting harder for her to think of my name. That would not be a big surprise. I have been well aware that she can’t remember my name most of the time. It’s just that she has been able to remember when she needs something. That may be going away.

Although she still asks me my name, her name, and the names of our children, she is more frequently asking, “Where are we?” This is something she done for a long time. It’s just happening more frequently. Coming home from Casa Bella last night, she asked me several times where we were.

Speaking of Casa Bella, we were there for Broadway night last night. This was a more spectacular program than others we have attended there. That’s an overstatement since the only accompaniment was a keyboard, no sets, and singers used music. There were, however, six singers instead of the customary two. All the music was from Les Miserables. Regular readers will remember that this is our favorite musical, and Kate was as taken by this production as she has been by the 25th anniversary concert in London. While there is no comparison between last night’s program and that one, the music is always good, and the singers were outstanding. Kate responded with tears and soft, but audible, Continue reading “No Wake Up Call Necessary Yesterday”

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Another Slow Start, Confusion in the Evening

Once again, Kate slept late, and, once again, I had difficulty getting her up. Since I knew the sitter was coming at 1:00 and that I was trying to get to the Red Cross for my platelet donation, I pushed a little harder to get her up. That may account for the fact that she was grumpier than yesterday. As we prepared to walk out of the house, she apologized twice. We left for lunch at 12:30. I called Mary and asked that she meet us as Panera so that I could eat and go directly to my donation.

Before Mary arrived, I reminded Kate that this was the day for my platelet donation and that Mary would meet us and take her home. That didn’t seem to bother her at all. I was glad about that. When I got home, Kate and Mary were in the family room. Kate was working on her iPad. After Mary left, I walked over to Kate, and she rolled her eyes. It was clear that she didn’t like being left with a sitter, but she didn’t make an issue of it.

It wasn’t long before we went to dinner. Near the end of the meal, she said, “We were really lucky to have those women who took care of him.” I didn’t know who she was talking about. She continued. It sounded like she was talking about her sitters. Then she mentioned how much I helped her. She said, “I could have done it without you, but you made it so much easier.” I asked who she was talking about and discovered she was talking about the helpers who took care of her mother.

She continued to talk about the good care her mother had gotten and how glad she was that we had been able to keep her in our home. She kept repeating the same things over and over for about 10-15 minutes. Then we got up to leave. As we walked by the hostess station, we said goodbye to the owner of the restaurant. Kate said, “I’m so glad we were able take care of my mother.” She said this as though the owner had been a part of our conversation at the table.

Once in the car, she kept repeating how much I had helped her, that she could have done it herself but it was easier because of me. As in all conversations, she did not mention any specifics because she can’t remember, but she retains a strong feeling for her mother, the care she got in the last years of her life, and how good she feels about that. Even after getting home, she continued the conversation. What struck me most is that her feelings are so strong that she couldn’t let go of the topic. I don’t know anything else that can stick with her for such a long period of time.

I went into the kitchen to get something. When I came back, she was working on her iPad. I sat down to write this post. Twenty minutes later, she closed her iPad and said she was tired and that she can really “do this” (work on her puzzles) better during the day. I suggested we go to the bedroom, and I would find something on YouTube that she might enjoy. She liked that. On the way to the bedroom, she seemed confused. She said she didn’t know how she would get along without me. At first, I thought she was talking again about my support in caring for her mother. As she talked a little more, it was clear that she was talking about my caring for her.  She was depending on me to tell her exactly what she needed to do. I told her I would get her a night gown, and she could get ready for bed. She needed help getting her gown on and wanted me to tell her every step to take to get ready. Several times she repeated how much she needed me. This was one of those times when I experienced both a desire to help her as much as I could while at the same time feeling sad that she was recognizing her dependence. This was not as bad as watching her painful anxiety attacks. This was simply a recognition of her dependence, and I assured her that I would always be here for her. She seemed to be accepting her dependence without any fear but with gratitude. Once again, she said how much she needed me. Then,  just as naturally said, “What’s your name?”

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More on Insecurity

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

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

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

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

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

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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.

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Sometimes it’s hard to be independent.

I’ve mentioned in other posts that Kate is becoming increasingly dependent on me. While she is accepting and requesting my help, there are still plenty of occasions when she prefers to do things on her own. It is especially difficult for me to judge whether or not she wants help is when she is going up or down stairs or curbs. It seems like half the time she does and half the time she doesn’t. I try to handle this by standing in front of her ready to give her a hand if she wants it. If she is behind me when we approach a curb, I often hear her say, “Hand.” Then I turn and extend my hand. Just as often, I extend my hand when she hasn’t asked only to have her refuse to take it.

It is similar with her clothes. Increasingly, she wants my help, but many times she doesn’t. Yesterday morning in Chapel Hill, I had put her clothes out for her. When she started to get dressed, I told her to let me know if she needed my help with anything. She wanted to do it without my help. In a few minutes, she was about to put on her pants. She had trouble determining the front from the back. That caused her to ask me to check to see that she had it right. She didn’t. She thanked me. Then she proceeded on her own. At one point, she got her foot stuck in the pants leg. She had to ask for my help. I am glad that when this happens, she doesn’t seem to be irritated with herself for not being able to take care of it by herself. On the other hand, she often makes reference to her making mistakes. She is very conscious of the problems she has handling many daily activities. I am sure that is what leads her to thank me so often for taking care of her. She is very appreciative, and that goes a long way to reinforce my desire to help.

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Increasing Difficulty Dressing

I checked on Kate at 8:45 this morning. She had just gotten up. In her arms she had gathered the clothes I put out for her. She was headed to take a shower. I asked if she would like to use the one in our bathroom. She said it didn’t matter, so I suggested she use ours. I got everything ready for her.

A little later I checked on her again. She had showered and was starting to get dressed. I looked in the bathroom and discovered she had used the two towels I put out for her. In addition, however, she had gotten into two drawers of other towels. She had tossed at least three different hand towels on the floor, only one of which appeared to have been used. In addition, she had pulled out another bath mat that was on the floor along with several wash cloths. She continued to dress while I took care of the bathroom.

After another 45 minutes, I checked, and she was still not dressed. She had misplaced several things and was searching for them. This is becoming common. Although I have each item laid out so that she can see each one, she seems to pick up one thing and put it someplace else. The items are usually thrown someplace so that it they can be hard to find. That is particular hard when something like black socks are thrown on our dark blue rug. It can be difficult to find them.

We are in one of those in between stages. She is already accepting my help in picking out her clothes, but she still likes to dress herself. I can understand that. I think I would be the same way. I am trying to let her do just that but checking on her periodically so that I can find the things she has misplaced. I suspect that is a major reason it takes her so long to dress. I know that some of that time is trying to identify the front from the back of her top and pants and then to put them on correctly, but some of it has to be trying to locate the things I had put out for her. We are, of course, moving toward the time that I will play a major role in her dressing. At the rate we are going, that won’t be long. In the meantime, we’ll stick with what we are doing now. I want her to retain as much independence as she can.