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So how am I feeling?

I often think that readers can tell how I am feeling simply by reading my posts, but periodically I feel I should be more direct. Sometimes, I think it really is obvious. Last week was a particularly good week for us. I was very upbeat. This week is different. It isn’t because Kate has not been in a good humor. She has. I think it is her sleeping so late that is bothering me. Today is the third day this week that I have had to wake her. One of those days I got her up so that we could get to lunch and get to an appointment with an orthopedist. Today, I needed to get her up so that we could have lunch before the sitter arrives at 1:00. I waited until 11:00. She was sleeping soundly, but she got up without a fuss. In the early years after her diagnosis, she would not have gotten up so quickly or cooperatively. That changed about 6-12 months ago. I see it as part of a pattern of changes that involve accepting what I tell her.

I often encourage people to recognize the differences from one individual to another. We’re not all alike, but I think the experiences of two friends have had an influence on me. One of those was a former roommate, Charlie Hardwick, with whom Kate and I visited last fall in Dallas. He, too, had dementia. I had been in periodic communication with his wife, Nancy, also a college friend at TCU. Based on what she had said about her husband, I thought he was a little ahead of Kate in the progression of the disease. A few weeks after we had been together, he died. Nancy told me that a short time after our visit, he started sleeping more, and then just went down hill. I was shocked at how rapidly he had declined.

I have another friend whose wife died about five months after I last saw her. I had been keeping up with her husband for several years. I also knew that she was further along in her dementia than Kate, but I never imagined that she would be gone so quickly.

These two situations have sensitized me to the fact that people can can decline quickly. That has caused me to observe Kate even more closely; therefore, the change in her sleep pattern has been of more concern than just my wanting her to get up so that we can have lunch together.

Intellectually, I recognize that what happened to our two friends doesn’t mean Kate will experience the same fate. It is very likely that she has a good bit of time ahead of her. On the other hand, I know that it is also possible that she won’t.

One other thing may account for my melancholy outlook relates to her increasing dependence on me. She appears to be at ease with that. In the past, she has been more insistent on doing things for herself. She is also more cooperative about everything. As I’ve noted in previous posts, this makes life easier for me. The downside is that it makes me sad to see her lose her independence.

An hour ago, I returned home to relieve the sitter. Kate was sound asleep on the sofa. Mary said she said she felt like resting and had been asleep about thirty minutes. That gave me a chance to talk briefly with Mary. It was interesting to hear her talk about Kate. She mentioned how sweet she is. She also told me that they had driven by the high school our children had attended and mentioned it to Mary. It is clear that there are lots of things that she sometimes remembers. I am sure the sight of the school served as the trigger for her to remember that our children went there.

After Mary left, I let her continue to sleep. She slept another twenty minutes before getting up. When she came into the kitchen, she was carrying her cup and iPad. She was ready for Panera. We’ve been here about twenty minutes and will leave for dinner shortly. Because of how long she slept last night and the nap she had this afternoon, I should expect her to be wide awake at bedtime. If she isn’t, that will probably add fuel to my fear that she is entering a period in which she requires more sleep than in the past. I hope not.

Lest my children, who may be reading this, begin to worry about me, I feel compelled to say this. Despite this moment of sadness, I am still getting along well. In this blog I try to convey what our lives are like as we live with Alzheimer’s. Most of our experiences have been good ones. Those experiences are not over. Most other moments will be more uplifting than this one. I believe, however, that I should let you know about the more difficult times. I wouldn’t want anyone to think we have skirted around the challenges. We have those, but, for the most part, we have been able to live full and fulfilling lives throughout this journey. I continue to be very grateful.

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A Day of Dependency

Yesterday was a day in which I noticed Kate’s dependency more than some other days. That began when I got her up rather than letting her to wake up on her own. As noted in a previous post, this was to insure that we were able to get to lunch and then to an appointment with an orthopedist. Though we usually go to Panera, I passed that up because it was already time for lunch. Kate never seemed to notice. As she usually does when we go out in the car, she was quiet but at one point asked, “Do we have children?” I said, “Yes, we have two children. We have a daughter named Jesse. She and her husband, Greg, have twin boys. We also have a son.” Before I could go any further, she said, “Kevin.” I said, “That’s right.” She asked, “What’s his last name?” I told her, and the conversation ended. The rest of the way to lunch she sat quietly and patiently waited until we stopped at Carla’s Trattoria. It was only when we were inside that she asked, “What’s the name of this place?” When we left Carla’s, she asked, “What is your name? I told her. Then she asked, What is your last name?”

From Carla’s we went directly to the orthopedist’s clinic. Although I had told her where we were going, I am sure she had no idea until we arrived. I’m not even sure when she recognized she was in a doctor’s office. I suspect that occurred in the waiting room. She never asked any questions. Instead, she was asked questions, none of which she could answer. That includes things like “How long has the pain been bothering you?” “What, if any, surgeries have you had?” I asked Kate if she would like me to answer. She said she would.

During the day, she exhibited some of her typical behaviors. She asked me if she should take her cup into the restaurant, if she should take her iPad, etc. One new thing happened on the way to dinner. Out of the blue she said, “From now on I just want you to make the decisions.” This was not said with any sign of irritation as it could have been if I had been trying to control her when she didn’t want me to. Instead, it seemed more like she was simply asking for help. She followed that with, “You can still ask what I want, but I trust you to make the right decision.”

When we got home, she asked some of the questions she often asks, “What now?” “Should I get ready for bed?” “Can I use the iPad.” By themselves, nothing was unusual, but she seemed to behave in a more dependent way than usual. It was as though she were in a “fog,” less sure about everything. I don’t like seeing her drift away.

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Miscellaneous Happenings

I don’t make any effort to write about everything that happens in a day. I tend to post items that in one way or another seem noteworthy to me. I should add that there are simply too many things to comment on in a given day. I can’t remember them all. I tend to pick up on things that are either typical or unusual. The things I noticed yesterday fall in between these two extremes.

We began the day with conflicting signs of Kate’s expressing independence or dependence. That started with getting dressed. Normally, I am in the kitchen (my “office”) when she gets up, takes her shower, and dresses. This morning I went back o the bedroom to check on her, she had just gotten out of the shower and was beginning to get dressed. Before walking into the bathroom to brush my teeth, I noticed that she was about to put on her pants. She was looking carefully to see which was the front and which was the back. On quite a few occasions, I have noticed that her pants were on backwards. A few times I have told her and given her the choice as to whether or not she takes them off and puts them back on the right way. This was my first time to watch her work so hard to get it right. It took a while. She ended up taking them off and putting them back on. She must have put them on the backwards. This is a situation in which she could have asked for my help. She didn’t, and I thought I should give her a chance to do it herself. I believe I made the right decision. She had to work, but she got. That is always best.

I put her morning meds on the island in the kitchen. A little later she walked in dressed and ready for Panera. I told her the meds were on the island. She said, “I can see that.” This is an instance in which she felt she didn’t need or want my help. From past experience, I know that she often doesn’t see them.

I noticed that she was carrying a pair of socks that are not the ones normally kept in her sock drawer. As we got ready to leave, she asked with hand signals if she should take them with her. I told her that would be fine. I didn’t even try to imagine why she wanted to take them. She was already wearing socks. Once we were in the car, she stuffed them into a side pocket of her door.

Before getting out of the car at Panera, she said, “I’ll get a table, and I’ll let you take care of everything else.” Of course, this is what I do every morning except that I also get the table and put her iPad at her place. She occasionally does something similar at restaurants. She says, “Order for me.” Once again, I always order for her. I was surprised the other night when the server told us the entrée special, and Kate immediately said, “That’s what I want.” It was a good choice too. I wish I had gotten it myself.

Only one thing at lunch was particularly worth noting. As we were eating, she had made a comment about being glad she had married me. Then she asked, “What is your name?” I told her. Then she asked, “What is your last name.” That was followed by asking me her father’s name. She didn’t say anything following these questions and their answers. This has happened a number of times. At first, I thought she was joking. Now I think the link between my name and me is beginning to weaken. Clearly, she still knows me and that we are married, but the label is not as strong as it used to be.

As we got in the car after lunch, she got her socks out of the pocket in the door as well as some used paper towels and said, “Are we turning the car in?” I told her no that this was our car. A few minutes later, she unfolded the socks she had carefully folded earlier and said, “I want to take these with us?” I can’t be sure, but I think she meant “when we move to Texas.” She still brings that up periodically even though we have no plans to move. Then she told me they were winter socks and would need them.

Just before we arrived at home, she told me that she was going to take a nap if that was all right with me. I told her that would be fine. Then she told me not to let her rest too long because she wanted to be able to go to sleep tonight. A few minutes later we drove into our driveway. She asked me to stop and let her out. She wanted to work in the yard. She said she wouldn’t stay long. That means no nap today. That is no problem. I don’t think she needed it anyway. Besides that, she doesn’t usually go to sleep.

She worked outside for about an hour. Periodically, I looked out to see what she was doing. I noticed that she was pulling leaves off our Japanese Red Maple from which she had not pulled off all the leaves before winter. It was coming back nicely. Like last week when she worked in the yard for the first time in months, I had very mixed feelings. I was glad to see her enjoying herself outside. Over the years, this has been her most enjoyable activity. On the other hand, I love the tree and hate to see it denuded in the same way as the rest of our shrubbery. The good part is that it is tall enough that she can’t reach most of the leaves.

After coming in the house for a few minutes, she was ready to leave again. I packed up my computer and her iPad and got cups for each of us, and we were off to Barnes & Noble. When we drove out of the driveway, I looked at the Red Maple. She had removed all the leaves on the lower branches.

On the way to Barnes & Noble, I turned on a Ronnie Milsap album. Sometime in the 80s, we attended a concert of his. Kate had enjoyed him, and I bought the CD. I reminded her of this. Moments later, she asked me his name. I told her, and she said, “I’m sorry; I know I keep asking you this?” I told her she could ask me as many times as she wants, that I am glad to be able to answer her. She thanked me.

Tonight, after returning home from dinner, she sat in her chair in our bedroom working on her iPad. I had turned on a recording of CBS Sunday Morning. During one of the segments, she stopped and watched the TV. When it was over, she asked if she could use her iPad. As always, I said yes. Later, she asked if she should get ready for bed. I told her that would be fine. Once again, we had had a good day.

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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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At Dinner Tonight

Kate’s asking permission for things that she shouldn’t need to ask continued at dinner tonight. When we were about halfway through our meal, she asked me (with hand signals as she often does) if she could drink her iced tea. Up to this point, she had already drunk about a quarter of the amount in her glass. I asked why she was asking me. Then I said, “You don’t have to ask me to drink your tea.” She said, “I thought so. I just wanted to make sure.” Before we had finished eating, she asked me the same question two other times.

She had salmon tonight. When she had eaten about half of it, she asked if she could eat it. I said, “Yes, you can eat it. You don’t even need to ask.” Once again, she told me she “just wanted to make sure.” Nothing in the tone of her voice or the expression on her face suggested kidding me or acting as though I am a tyrant, but it does make me feel uncomfortable when she does this. It also makes me want to be more careful about those things for which I correct her. I may be overdoing it. On the other hand, it may simply be a sign that she doesn’t know what to do and appeals to me to help her. I hope it is the latter even though it saddens me to acknowledge that possibility. I don’t like to see her growing dependence. I prefer it when she seems to fight for her independence. These days that happens most often when I offer my hand as she steps off a curb. At night, she is almost always glad to accept.

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A Small Thing, But Another Marker on our Journey

Several years ago, I bought a white board for Kate. I put it on the island in our kitchen where she would see it each day. Each morning, I wrote the day of the week, the date, and a list of things on our schedule for that day. Over the past year, I gave up writing the schedule because Kate was not reading it; however, I have been dutifully writing the day of the week and the date each morning when I went to the kitchen for my breakfast. For at least six months, It looked like Kate did not pay attention to it, but I kept it up. Today I finally broke down and put the white board away. At this point, she seems to have little interest in this information. In case I am wrong, I bought a large digital clock that gives the time, day, and date. At least I won’t have to erase the old and write the new information each day. It will also be easier to read.

I’ve noticed a couple of other new things. One is that she is beginning to dislike whatever drink she gets, even her Dr. Pepper. For a several months, she has been mixing a little of each of the non-soft drink items (at least two types of lemonade, sweet and unsweetened tea, and two flavored teas) and being unhappy with them. She has started asking me to refill her cup. I have been getting her either an Arnold Palmer or a half and half mixture of sweet and unsweetened tea. She hasn’t like those either. In two different restaurants today, she didn’t drink her Dr. Pepper because it didn’t taste right to her. I tasted it. It tasted the way it usually does.

Tonight she worked a few minutes to figure out how to put on her robe. She finally gave up and asked me to do it for her. This is one of those occasions when she was happy to have me do something for her.

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And More Signs

Tonight at dinner Kate pointed her finger at her iced tea and then at herself. I recognized this hand signal as one that asked if she could drink her tea. I said yes, and she did.

At almost 9:25 this evening, I told her the time and suggested that she might want to get to bed. In a few minutes, she asked, “What do I do now?” I told her it would be a good time to put on her night clothes. She looked over to her chair beside the bed and said, “There’s my robe.” She walked over to get it. She held it up. With hand signals, she asked if she should put it on. I told her yes.

These are just two more little things, but they fit a growing pattern of dependence on me to tell her what to do. It makes me sad.

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More Signs of Dependence

Kate and I returned from lunch about thirty minutes ago. I pulled into the garage. As I got out, I noticed that she was still seated and had her seat belt on. I looked at her. She pointed her finger at the passenger door and had a look that told me she was asking if she should get out. I nodded yes. As she got out, I said, “I guess I wasn’t too clear.” She gave me a look that said, “What else is new?” I don’t recall any other time that she has waited for me to tell her she could get out of the car.

Once inside, I said, “I’ll bet you’re eager to get your teeth brushed.” That’s usually the first thing she does when we return from eating. She nodded her agreement. Then she asked, “Middle?” I knew that she was asking whether to use our bathroom or the one off the middle bedroom. I told her she could choose any one she wanted. She looked uncertain, and I said, “How about our bedroom?” Off she went.

We are now in our family where we are listening to Rachmaninov’s Piano Concerto No. 3. Kate had been working jigsaw puzzles on her iPad but is now resting on the sofa across from me. It’s a beautiful day in Knoxville. The sun is shining brightly though it is a bit chilly. We’re sharing a very peaceful moment. I plan to let her rest as long as she cares to do. Then we will probably make our way to Barnes & Noble for the balance of the day. After that, it will be time for dinner.

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Growing Dependence

When we returned home from dinner last night, Kate walked into the family room and turned back to me with a look that I interpreted (correctly, as it turns out) to mean “What do I do now?” Or “What now?” I told her it was time for us to relax and wind down for the day. I added that I would turn on the news, and she could work on her iPad. She went to the back of the house while I took care of a few things in the kitchen. In a minute, she appeared in the kitchen. She still had her coat on. Her hands were in her coat pockets as if she were ready to go out. She didn’t say a word. She just looked at me. I gave her a moment to say something. When she didn’t speak, I told her again that I would watch the news while she worked on her iPad. She turned around and went to our bedroom. I followed her a few minutes later. She was seated in her chair with her iPad as I had suggested. She just forgot the first time I told her. This is becoming so commonplace that it is surprising that she remembered the second time. This often leads to problems coordinating almost everything we do.

Simultaneously, however, she is looking to me for guidance as to what she should do. This growing dependency is evident in her looking to me to tell her what to do when we got home. She wants to do the “right” thing. She just can’t remember what the right thing is or what I have just told her to do. This compliant behavior is easier to deal with than obstinance, but it leads to a sadder feeling on my part. To me this is the most challenging part of being her caregiver. It really bothers me to see her becoming so dependent.

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More Confusion and Growing Dependence

After dinner tonight, we came back to the house and prepared for our normal relaxation time at the end of the day. I got Kate’s medications and put them on her bedside table along with a glass of water. Shortly, she came into the room and started to take her pills. She had only taken a couple when she must have turned around to do something else. Then she asked me if the remaining pills were for tonight or in the morning. This is something she has said on several evenings lately. Prior to this she simply assumed they were all the evening medications. Like many things, I can’t say what accounts for the change. It is just among the variety of things that go along with Alzheimer’s.

A little later, I got ready to take my shower when I heard her call, “Help.” It wasn’t a frantic call, but it was clear she needed something. I came out of the bathroom to see that she was struggling with her robe. It was inside-out, and her left arm was in the right sleeve. She couldn’t find the other sleeve. I got her straightened out and said, “Another case of teamwork. We work well together.” She thanked me and gave me a hug. It’s one more sign of her increasing dependence.