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The Struggle for Independence

Kate has never liked being dependent on others, not even before Alzheimer’s. Of course, none of us is ever completely independent. All of us depend on others in one way or another. We generally pick and choose those things we will do for ourselves and those we would prefer for others to take car of for us.

The first big blow to her independence came when she stopped driving. That was four years ago this past December after an accident in which she totaled her car. You might think that she would be used to being without a car by now. Not so. She still occasionally says, “How would you feel if you had to depend on me to take you everywhere?” That happened just today.

I am reminded that her initial desire to keep her diagnosis private was largely motivated by her not wanting to be treated as a patient. She wanted to be treated like anyone else. In a way, that was an expression of her desire not to be dependent on others.

There are areas where she has worked hard to assert her independence. Among those, the one that is most noteworthy involves her clothes. Within two or three years of her diagnosis she was not selecting clothes that she would have worn before her Alzheimer’s. At that point, I was new to dealing with such things and would let her know that what she was wearing was either soiled or inappropriate for a particular occasion. She often resisted my suggestions. I have learned to be more accepting, but I still intervene depending on just how soiled or inappropriate her attire. Over time we have both done some accommodating, but she has done more. That means she has become more dependent on me.

This dependence has evolved and has often been her own choice and not mine. There are now times she specifically asks me to get her something to wear. This seems to occur when she has looked for something but hasn’t found anything she thought was right. It is almost as if she has been overwhelmed by the choices. There are a lot of clothes in her closet. Although I have gotten rid of many things that no longer fit, I have also added many new clothes. Whatever the cause, it is clear that she sometimes wants my help.

The same thing is true about dressing. I would never have thought about helping her dress until she has struggled with getting them on. I generally ask if she needs help. Often she says she doesn’t. Other times she says she does.
One other area in which she asserts her independence involves my taking her hand when we go up or down stairs or curbs. Sometimes she wants my hand. Many times she does not, and she often refuses sternly. I always do what she wants, but I try to watch her closely in these situations to see if she needs help.

I see other signs that she may be working hard to maintain a sense of independence. For example, she is more careful now than three or four years ago when it comes to maintaining a measure of order with her clothes. She no longer lets her clothes accumulate on the furniture and floor of the bedrooms. In addition, she is trying to make up our bed each morning. It’s not done quite the way she would have done it before her Alzheimer’s, but it is immeasurably better than in the past few years.

As time has passed, she has become increasingly unsure of what she should do and depends on me to guide her. This almost never involves what she should wear. It does involve things like “Should I get ready for bed?” “Should I go to bed now?” or “Should I take my cup into the restaurant?” It also includes some things for which I would never think she needs my guidance or permission. These include things like “May I use my iPad?” and “May I take my shoes off?” All of these questions are usually asked via hand signals rather than spoken words. The latter two questions occurred just a few minutes ago.

Forty-five Minutes Later

I took a break to take a shower. Before I did, Kate said she was going to bed. Then she said, “What should I wear?” I said, “Would you like me to get you something?” She said yes. In this particular case, I know she is tired and believes it is simply easier for me to get something for her than to do it herself. In other words, this is a time when she would rather be dependent. She is working hard to retain independence related to things which she believes she can do and wants to do. This is not really any different than what each one of us does. We pick and choose, but we don’t want to feel dependent.

That raises a related question. How we feel about these changes? I must confess that I really don’t know how she feels. Since she doesn’t like to discuss her Alzheimer’s and its consequences, I can only infer from what I observe. That said, I believe the change to greater dependency is more difficult for her than for me. I say that for two reasons. First, she reacts so strongly when I attempt to help her with something that she feels she can and wants to do for herself. Second, I imagine that if I were the one giving up my independence in the same way, I would hate it.

As for me, her becoming more dependent actually makes it easier for me to take care of her. There is less hassle when I am in control. On the other hand, I don’t like seeing her becoming more dependent. It makes me sad each time I recognize that she has crossed another marker on her journey. I would much rather deal with the stresses of caregiving than experience the sadness that accompanies Alzheimer’s. Losing one’s spouse is really losing a part of oneself. Next month we will celebrate our 55th wedding anniversary. We were so innocent as we faced the future together. Like other couples we were wildly enthusiastic about the future; however, we couldn’t begin to imagine the abundance of joy and good fortune that lay ahead. I am satisfied that we have invested wisely in the time we have had together and confident that, together, we will weather the storm that awaits us.

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Forgetting Names of Family

I’ve heard the expression “bitter sweet” most of my life, but it has become considerably more meaningful since Kate’s diagnosis. I could apply it to many of the things we experience every day. Take today, for example. On the way to lunch, I mentioned that tomorrow is our grandson Taylor’s birthday. She said, “And who are his parents?” I told her Rachel and Kevin. Then she asked, “And, they are?” I told her that Kevin is our son and Rachel is his wife. Then she asked me to tell her their last name.

At lunch I told her we are going to be with our Memphis grandsons on Thursday. She asked their names. She followed that with “Who are their parents?” I told her Jesse and Greg. A few minutes passed, and she asked, “What is your name?” I told her Richard. She asked, “What else?” I told her. Then she wanted to know if I had another name. I gave her my middle name. She said, “That’s a nice name.”

I should add that she has been in a cheerful mood since getting up this morning. She has teased me a bit and was a bit playful. For example, in the car she asked if she could do something, and I told her that would be fine. She responded with, “Thank you, Master.” I said, “You must think I try to control your life.” I said, “I don’t think I control your life.” She smiled and said, “You don’t, but you try.” She said this without any sense of irritation. She was saying what she believes, but doing so in a very kind way.

Kate has been very childlike in her questions about names. I suspect she has had more trouble with family names for longer than I have been aware. She was just guarded about acknowledging it. Now she asks me the names of people and places all the time and does so without any effort to disguise her memory problems. When she asks me to help her with names, I feel she has opened herself to me in a tender way. At these moments, I feel very close to her. There is a sweetness about this experience that is hard to describe.

At the same time, there is also something very sad watching her lose the connections between names and the people she loves so dearly. It is a bitter sweet experience.

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Kate’s Fourth Trip to Panera Today

After our two back-to-back trips to Panera this morning, Kate and the sitter went again this afternoon. Kate was resting on the sofa in the family room when I got home to relieve the sitter. Her behavior after the sitter left makes me think she may have been either tired or bored. Typically, when I return home, she gets her iPad and is ready to go to either Panera or Barnes & Noble. She didn’t do that today. She continued resting.

I decided to look over the tax returns I had picked up from the accountant after leaving the Y. I went to the back of the house for something and stopped at the sofa where she was lying. She asked what she could do. I mentioned several possibilities, one of which was Panera. She jumped on that. She said, “I just want to get out of the house.” She put her coat on and walked into the kitchen where I was putting my laptop in its case to leave. Apparently, she had forgotten about Panera. She asked again, “What can I do?” I told her I was just getting ready to take her to Panera. Then she asked, “Are you going to stay with me?” I said, “Of course, I will be with you.” She seemed relieved. This is another of those times when I have the feeling that she may not be enthusiastic about the sitter. I’m not sure this is true because of the way she greets the sitter when she arrives. Kate seems very comfortable and at ease with her. It may be that she thought that I might be leaving her alone.

We’ve been here over an hour now and will leave shortly for our Monday night Mexican meal at Chalupas. When we left home, she seemed a little down, not as cheerful as she was this morning. Perhaps that was because she had been resting a while. Now she is perfectly fine.

A moment ago, she asked for my help getting back to the right place for her jigsaw puzzles. She occasionally hits a wrong button that takes her to the store and doesn’t know how to get back. That had already happened a couple of times since we arrived. This time she said something that warms a caregiver’s heart. She thanked me for helping her and said, “You know what I like about you? You don’t treat me like I’m stupid. You just show me again how to do it.” I am not only touched by her sentiment. I am also struck by the fact that she realizes that she is asking me over and over to do the same thing. Her expression of appreciation makes it much easier to keep helping her. I know, of course, that she is not remembering other occasions when I may demonstrate less patience than I did today. Nonetheless, this is another of many reasons I believe Kate and I have been very fortunate living with Alzheimer’s. I know many couples are not so lucky.

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Things pick up in the afternoon.

Kate has never been a morning person, but I think her cold has made it especially difficult to get going. She didn’t get up until shortly after 10:00 today after going to bed close to 9:30 last night. When we got to Panera at 11:20, she was still not fully awake and not very jovial. She didn’t recover during lunch. After getting home, she went directly to bed where she rested about 45 minutes. When she got up, she joined me in the family room where she worked on her iPad for another hour. We didn’t talk during that time, but she seemed to be more alert. Finally, she indicated, though not in words, that she was ready. She just closed her iPad and said, “Well.” I said, “I guess you are ready to go.” She said, “Whenever you are.”

As we drove to Barnes & Noble, she was quite cheerful and talkative. I was playing a CD of the musical Cats. When she heard “Memory,” she said, “I love that song.” I said, “It is interesting that it is probably the best known song from the musical, and it’s the only one not based on one of T. S. Eliot’s poems.” She hadn’t remembered that the musical is based on his book, An Old Possum’s Book Of Practical Cats. She said, “That’s got to go in the album.”

She was talking about her photo album of our family. She hasn’t worked on it in at least two years, but she still occasionally mentions things that she wants me to remember to put in the album. I could tell she would never finish the album more than two years before she stopped working on it. The only thing she has ever done to create the album is to select some family photos for inclusion and edit them. She has never put anything into the software that she would use to make the albums. She did edit and edit and edit the photos. That was the first of her activities to go. That left her with the yard and jigsaw puzzles on her iPad. Now it’s looking like the yard may become a thing of the past as well.

Speaking of the yard, spring is on the way. We see various trees and shrubs beginning to bud and flower. I have been watching to see if we might get any new leaves on the shrubs around the house. I am glad to see that at least some of them are coming back. I haven’t seen any indication that others have any new growth. They are completely bare. I’m not going to give up hope just yet, but it’s not looking good.

The short rest that Kate had gotten after lunch must have done the trick. She has been just fine since she got up. Once we were at Barnes & Noble, she got rather chatty. She started reminiscing about her mother and father as well as our marriage and how good she felt about our children and grandchildren. These are things she says quite often. She and I talk about how fortunate we are. Periodically, she would say, “Okay, I’m going to stop now.” She would look down at her iPad. Then she would start talking again. She must have done this at least four or five times before she really stopped. At that point, she said, “Now, I think I’m going to play.” Then as though she had to justify that to me, she added, “You know, you can’t do serious things all the time.” I am glad to see I’ve got the “real” Kate back now, and I am grateful that we always seem to have good afternoons and evenings.

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A Different Kind of Day

Our lives follow a pretty predictable routine. That is largely because I am a creature of habit. I have also tried to create a clear structure for Kate, and it seems to have worked. Not today though. As I noted in my previous post she has a cold. Yesterday and the day before, she awoke much earlier than normal and did not rest during the day. Today she made up for her lack of sleep. I decided to let her sleep as long as she could since we had no obligations to be anywhere or do anything on a set time. To my surprise, she didn’t wake up until 12:45. It was a little late to go to Panera for her muffin. We went directly to lunch, arriving at almost 2:00.

She wasn’t in the best of moods, and I tried not to do or say anything to aggravate her. My big mistake occurred when she blew her nose on her jacket that she has only worn two or three times. I quickly said, “Don’t do that.” I told her I would get her a paper towel. I normally keep them in the car, but we had run out the day before. She snapped back at me. Then she apologized, and I, too, felt bad and apologized.

After lunch, I asked her if she would like to go back home. She said, “Barnes & Noble.” After we had been there about 45 minutes, she said she had a headache. I asked if she would like to go home. She did. When we got home, I gave her a Tylenol. We brushed our teeth. Then she grabbed her cup and said, “I’ll see you” and walked to the front of the house. When I got to the kitchen, I didn’t see her. I looked in the garage and saw her sitting in the car waiting for me. Nothing at all had been said about our going back to Barnes & Noble, but she was obviously ready. I got in the car, and here we are again. We had only been home a few minutes.

While we were in the car, she said something about my controlling everything – “When we go, where we go, what we do.” I said, “I guess I really do control a lot of things, but I hope I do it with the intention of doing what you want to do.” She said, “That’s true. I know you do it for me.”

I see that it is now almost 5:15. If I follow our usual schedule, it will be time for dinner in 45 minutes or so. I will probably delay that a little tonight since we ate lunch so late. Yes, it’s a different kind of day.

Postscript

Kate surprised me when she decided she was ready to leave Barnes & Nobel shortly after I wrote the post above. Although we had eaten a late lunch, we talked about whether to go home or to eat. We decided to eat but to have a light meal. We went to the Bluefish Grill where we shared an appetizer and an entrée. As we entered the dining room, we saw one of my Rotarian friends. As we were eating, some friends stopped by our table on their way out. We also saw a couple from our church. We had a good meal and a nice social experience as well.

When our server asked if we wanted dessert, I said, “I don’t think so.” Kate looked at me and said, “We could share something.” I agreed. This happens occasionally when I don’t want a dessert. I had picked up a couple of pounds over the past week when our son was here. I really didn’t need anything more; however, I often imagine how I might some day look back on moments like this. I think I would say, “I wish I had just enjoyed the moment rather than worrying about my weight.” I continue to believe that is the right thing to do.

On the way home, Kate said, “I never get tired of being with you.” She followed that with “Sometimes I get irritated with you.” I said, “Thank you for loving me.” She closed the conversation with this comment. “I do love you. I don’t know why, but I do.” The day is ending on a high note as it always does.

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Little Things

We’ve had a string of good days lately. I say that because Kate seems happy and has appeared to enjoy herself. It doesn’t mean there has been any lessening in the other symptoms of Alzheimer’s. Her memory only gets worse, and I observe new signs of confusion.

As we prepared to leave the restaurant after lunch the other day, she asked (using hand signals) if she should take her napkin with her. That is the first time I recall her ever asking that. She has frequently taken paper napkins. She has used them in the car to wipe the saliva from her mouth or to store in a basket in our garage (after she has torn them into smaller pieces). This time it was a cloth napkin. Perhaps I shouldn’t have been surprised. On several occasions, she has asked if she should take her glass with her. Two or three times she has actually taken her glass. In two instances I caught her and returned the glass. Another time, the owner of the restaurant saw her walk away with the glass and asked if we would like a “To Go” cup.

Later at dinner that night, she asked, “Are we in Fort Worth?” I told her we were in Knoxville. She said she thought she recognized the buildings across the street as buildings in Fort Worth.

When we got home, I turned on the TV to a recording of CBS Sunday Morning while she worked on her iPad. After a while, I told her I was going to take my shower. She had her robe in her hands, pointed to herself, and then pointed in the direction of the hallway to her room where she keeps her clothes. This is one of those situations in which I misinterpreted her hand signals. I thought she was going to her room to get a night gown. I said, “Yes,” and she left.

When I got out of the shower, I noticed that she wasn’t there. I just thought that she was taking a while to find something and would be back shortly. When she hadn’t come back in another ten minutes, I went to check on her. The first thing I noticed was that all the lights were out. That made me wonder if she had gone to bed in her room. That has happened before, but it had been a long time. I called her name, and she said, “I’m in here.” She was on the bed in the guest room next to our bedroom. It turned out that she thought I meant for her to go to bed in there. The only thing I could figure out was that when I thought she was asking if she should get a gown for bed, she was really asking if I wanted her to go to bed in the guest room.

I felt really bad about that. I know that she has become much more accepting of my suggestions about clothes that she wears. She also asks me what to do a lot more than in the past. In this case, I felt like the master who had sent her away to her room. I quickly explained that I never would suggest she sleep in another room without me. She said she would prefer to be with me, and I told her I always wanted her to be with me. This is just one more of those things I’ll never understand.

On a brighter note, last night she was lying in bed working on her iPad while I was reading in my chair. She became unusually talkative. She began by saying she was glad that we had married and that we had had a happy marriage. This is a conversation that we have a lot. We both reflect on the things for which we are grateful, especially for our marriage. She talked about our children and how proud she is of them. This led to her talking about her mother and how glad she was that we had kept her in our home for the last five and a half years of her life.

All of these are things we have talked about many times, but there were two things that stood out about this occasion. One is that she would stop and start to go back to her iPad. I took this as a signal that she was finished, but very shortly, she would continue the conversation. This must have happened three or four times before she really stopped. It made me feel that she was having a powerful sense of gratitude.

The second thing that stood out was her talking about her mother’s having stayed with us during the last years of her life. Although she was not detailed in her description of those days, she clearly had not lost her memory of our having kept her. I have discovered so many things about which she has absolutely no memory that I was thrilled to know she remembered this special time. Moments like these are precious.

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Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that.

I do know that when we were in the waiting room of her dentist’s office this morning that she asked, “What are we doing here?” I explained that she was there to see her dentist. She said, “I don’t even remember who she is?” I also know that I had to wake her up at 10:00 to get her ready for her appointment and that she was quite groggy when she got up.

I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

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Things I’ll Never Know

So much of Kate’s behavior is normal that I am struck when she surprises me with something unusual. A couple of things have happened in the past day or so. The first occurred late Thursday when we were preparing to leave for dinner. All day she had been wearing two tops that didn’t match. At first, the one on top was inside out. I mentioned it to her, and she began to take it off. I asked if she wanted me to tell her. She said, “Absolutely.” Then I told her I didn’t think the one on top matched the one underneath. She said, “Who cares?” I let it go as I usually do.

As we were about ready to leave for dinner, she was still wearing the unmatched tops. I suggested she might change for dinner. She accepted my suggestion and only asked, “What would you like me to wear?” I brought her something else, and she put it on. As we were walking toward the door, I noticed that she was carrying the two tops she had just taken off along with a robe. I told her I didn’t think would need those; so she left the tops in our bedroom. She came back with the robe in her arms and took it with her to the car. I didn’t say a word. I’ll never know what motivated her to take her robe with her.

Last night something else happened. She had gone to bed about 8:00 while I took a shower. I usually turn out the lights and leave her in the bedroom to sleep while I turn on some music in the family room and read. I don’t usually hear from her until the next morning. About 9:15, she came into the family room and asked if I would come to bed with her. She said, “It’s easier for me to go to sleep if you’re with me.” I joined her.

When I got in bed, I held her. In a moment, she said, “You’re my daddy. I feel safer when you are here.” Then she said, “I’m your little girl.” I assured her that she was. A couple of times she said something else and called me, “Daddy.” Then she appeared to go to sleep.

When things like this happen, I try to imagine what was going on in her brain. I’ll never know.

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We’re on a different schedule today.

Kate slept unusually late this morning. I decided that given the flu, rest would be a good thing. I checked on her just after 11:30. She was still sleeping soundly. That gave me plenty of time to have my breakfast, wash, dry, and fold two loads of clothes, as well as checking the morning email and spending time on my blog.

In addition to rest, I know that she is supposed to get her Tamiflu approximately every 12 hours. That led me to wake her at noon. When I got to the bedroom, I saw that she was already up. I went back to the kitchen which serves as my office. I continued to work on another blog entry on social isolation that I will probably post on Monday while waiting for Kate to get ready.

Kate finally walked into the kitchen about 1:15 not knowing at all what time it was but ready to go. She was a little grumpy. In a cheerful tone of voice, I told her I was so glad to see her, and I wasn’t going to do anything to upset her day. She smiled. I gave her a hug, and she was fine. I had already decided to skip Panera and go straight to lunch at Bluefish. It was 2:00 when we sat down at a table. By this time I was already getting an impression that we were both making steady progress recovering from the flu. Except for having slept so long as well as several times she coughed, Kate seems back to normal. I also feel better but know that I still need another day or to before I am where she is now.

We left the restaurant at 3:05. I knew that Kate would not want to spend the rest of the afternoon at home; so I had brought our iPads and cups planning to go directly to Barnes & Noble. That is where we are now. Before settling down at my iPad, I had one of those experiences that every parent knows about but might not think of in connection with a person with dementia and her caregiver.

I selected a table for the two of us and gave Kate her iPad while I got her a passion fruit tea with lemonade. I returned to the table with her cup. Then I took out my iPad. Before I could start, she asked me where the bathroom was. It is located off the main area; so I don’t feel comfortable letting her go or return on her own. I closed my iPad and carried hers and mine as I led her to the restroom. I waited right outside and brought her back when she had finished.

This kind of shift from one thing to another is not a big deal, but it happens so often that it can be a problem for the caregiver. I should note that sometimes I can predict such things. In fact, this was one of those times. I had thought of asking her about going to the restroom at the restaurant. Then I thought I would wait until we arrived at Barnes & Noble. That plan failed when I forgot to do it. It’s another illustration that as a caregiver, I am frequently making these kinds of mistakes. There is just so much to remember.

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An Unusual Conversation

I find that there are so many things going on in our lives that I don’t come close to writing about all of them. There are also events that I want to report but can’t do so at the time. Then later I forget them. One of these things occurred about ten days ago. Here’s the story.

One of the topics I have mentioned on several occasions involves the conversations between Kate and me. I would have said more if there were more to say. The truth is that Alzheimer’s is hazardous to conversation. Normally one doesn’t think of it, but conversation is dependent on our memories, Much of that involves recent memories like things we have done, people we have seen, events in the news, and places we have been. Kate can’t remember any of these things. That means she relies on her distant past. For a good part of her journey, she has often spoken about her family and, especially, her mother. That has carried her in limited social encounters with friends or strangers. She has also done that with me, but we are together so much that the result is that she doesn’t talk much at all. We say very little wherever we are. As a talker, that has been a significant loss to me. She actually prefers that I minimize my talking. I suppose that makes it more comfortable for her. She doesn’t have to respond.

A week ago this past Saturday, we drove to Nashville to visit Ann and Jeff Davis. Typically, we would spend the entire time in silence. This trip was a notable exception. We talked just over an hour of the two-and-a-half hour ride. During this time, we focused on things for which we are grateful. These included things like our marriage, our children and grandchildren, our parents, friends, things we have done, and places we have been. We kept the conversation at a more general level that didn’t require Kate to recall specific details. I loved having such a conversation and hearing her express her thoughts on all these topics. I am confident that Kate enjoyed it. I know I did. As an added bonus, it made the trip to Nashville seem a lot shorter than it really is.