Posted on

Something New, Another Sad Moment

After returning home from dinner last night, Kate got her robe and her iPad and came to the family room where I watched the news while she worked on her iPad. At 8:30, I told her I was going to take a shower. She said she would come back to the bedroom. As I was getting ready for my shower, she came into the room holding her iPad under her arm and asked in a very childlike way, “What do you want me to do now?” I told her I thought this would be a good time for her to get ready for bed. She looked like she didn’t know what to do. I asked if she would like me to get her night clothes for her. She said she would. I brought her a gown and the robe she had taken to the family room earlier. She was seated on the side of the bed. I placed the gown and robe on the bed beside her. She asked, “What do I do now?” I told her she could take off her clothes and put on the gown. She still seemed unsure what to do. I suggested that she take off her top first. She did that and then looked to me to tell her what to do next. I told her to take off her bra. She did that. She looked to me once again for instructions for the next step. I told her to take off her pants. She did and waited again for my instructions. I told her to take off her underwear and to put on her “night time” underwear that I had earlier put on the bed. She did that. Then I told her to put on her gown. As she started to do that, I walked away to the bathroom. She called for me to help her. She couldn’t put it on. In fairness to her, I think it is a challenge myself. I am not going to give her this gown again. We worked together to get it on. She got into bed with her iPad. I took my shower. When I got out, she had put away her iPad and was off to sleep. Based on the amount of sleep she had gotten during the previous night and the day, she should have had trouble going to sleep. It wasn’t a problem.

This was not the first time that I have helped her put on one of her gowns; however, the experience last night was very different. She seemed completely unsure of what to do from the time she walked into the bedroom until she was dressed for bed. Earlier in the week, she had told me, “I’m just going to let you make all the decisions.” That was the first time she had said that. The fact that last night’s experience came a few days after her statement is a another sign that she is softening her desire for independence. That’s a sad thing for me.

Posted on

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.

Posted on

I think Kate’s trying to mimic me.

If you are a regular reader of this blog or someone who knows me well, you are aware that I have a few OCD tendencies (well, maybe more than a few). Kate has never been this way at all. Alzheimer’s has made our differences even more pronounced. Recently, it has come as a surprise to see her exhibiting some of my characteristics. After a long period of time during which she didn’t put up her clothes, she started doing so. She doesn’t always do this immediately after taking them off, but she no longer lets them accumulate on the beds, furniture, and floor as she did in the earlier stages.

The next behavior involves making up the bed. Over the course of our marriage, I recall hearing her say that her mother had taught her to make up the bed right after she gets up. This is something she has always done and continued for the first few years after her diagnosis. Gradually, however, she got out of the habit. Over the past few months, she has started again. She didn’t do it immediately and not nearly as well as she did before, but she was making a good stab at it. Within the past week, I have noticed that she takes more time and is doing a much better job. I’ve even noticed her looking over what she has done and doing a little straightening where she thinks it is needed.

What has been more surprising is her cleaning up at Panera. Their drink dispensers can be a little tricky. It is challenging to fill your cup without some of the drink dripping down the side of the cup and often spilling on to the counter. When this happens, she has started getting a napkin or two and wiping the entire counter, and she does it with as much care as she can. That’s not something she would have done before. In addition, crumbs always fall from her muffin to the table. When we are ready to leave, she has become very careful about getting up each and every crumb.

One final behavior involves a white board on our island. I got it a few years ago to let her know what day it is, appointments we have that day, and where I was if I were not at home. Over time, she stopped reading what I was writing, so I just put the day and date. I finally got tired of that, especially because I could not tell that she was reading it. I bought a digital clock with very large print that provides the same information and the time as well. It sits on the counter across from the island. Now the white board has a single purpose. That is where I put her morning medications. I use that because she can see them easily against the white background.

That was a lengthy introduction for what is a very short story. The other day when she was taking her medicine, she turned the white board at an angle. Then she said, “I keep changing this, and someone else changes it back.” To the best of my knowledge, that is the first time this has occurred, but what struck me was her desire to have it in arranged in a particular way. That seemed to be totally out of character. On reflection, I do recall that she has always had particular arrangements for the knick knacks on furniture or book shelves. Maybe she is just treating the white board in the same way. It’s a Knick Knack on the island. If so, that would make it a normal behavior for her. At any rate, I am leaving it at an angle just the way she arranged it.

Posted on

Kate can be playful.

At lunch today, Kate looked at me across the table, smiled, and said with confidence, “Ask me where we are.” I said, “Where?” She said, “McAlister’s.” I said, “Wow.” Then she said, “Well, it wasn’t that hard.” As she said that, she looked at a sign on the table with the name printed on it. I followed that by saying, “I thought you meant what city.” Then she said, “What city?’ I asked, “What do you think?” She answered, “Fort Worth?” I told her Knoxville. She seems never to remember that, and we’ve lived here almost 47 years.

This occurred without any sense of frustration or concern about not knowing where she was. That is quite a contrast with the way she was in the early stages of the disease. She experienced a good bit of frustration then. I suspect that is largely a result of her no longer connecting her poor memory with her diagnosis. I also notice how open she is in acknowledging things she doesn’t remember. It is very natural to ask the names of people we see as well as our children and even me. While it always saddens me to see her memory deteriorate, I am also glad that she can be honest with me. I like to think it is a good thing that she has someone with whom she can be so open.

Posted on

Kate’s Treats

Yesterday after leaving the orthopedist, we went to Panera. We hadn’t made it in the morning, and Kate said she was a little hungry. I got her a muffin. There’s a nail salon a couple of doors down from there. It had been too long since she had had a manicure and pedicure, and they were able to get her in and out before dinner. I used to see that she went there at least once a month, but somehow got out of the habit. She doesn’t express any special pleasure when she goes, but she used to enjoy it. Besides she needs to have her nails trimmed.

Two or three years ago I also arranged for her to make regular visits to a nearby spa. She goes every two weeks and alternates a massage one time and a facial the other. This is not something that was a regular part of her life before I started it, but I thought it would be good for her to have something that was a treat and something she could do without me (except for making the arrangements and providing transportation). Like the mani/pedi, she doesn’t express a lot of enthusiasm, but I believe she must enjoy it. The only comment she makes is how soft and smooth her skin feels after the facial. She’s right. It does.

Posted on

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.

Posted on

Addressing the Knee and Sleep Issues

Yesterday via email, Kate’s doctor responded to my question about the pain in Kate’s knee. He suggested a referral to an orthopedic clinic associated with UT. We were fortunate to get in this afternoon. Her x-rays did not show a severe case of arthritis, but it is obvious that her mobility is hampered as a result of the pain she is experiencing. The doctor gave us a couple of choices. We opted for an injection of cortisone. I feel good about our taking action. We are headed to Texas next week, and I was worried about how Kate might handle the trip. Hopefully, this will help.

I also have a follow-up on the matter of her sleeping and the use of Trazadone. As he suggested, I gave her half of her normal dose last night. It didn’t help in getting her to sleep quickly, but it apparently lasted a long time. I let her sleep until 10:45 this morning. Then I felt I should wake her so that we could have lunch before going to the orthopedic clinic. She was sleeping soundly, so it took two other attempts before she actually got up. She was groggy at first but seemed fine after taking her shower. More importantly, from my viewpoint, she was, once again, in a good humor. We have quite a string of successes on that front. I just hope discontinuing the Trazadone doesn’t have any ill effects.

Posted on

Not So Little Things Mean A Lot

In an earlier message I mentioned that Kate’s brother, Ken, was creating a photo book of family pictures taken from the time of their respective births to the present time. She was as excited about the book as he and I had hoped she would be. Because her memory is so poor, I wondered if, and when, she would look through it again. It’s over 140 pages, so I knew she probably wouldn’t look through the entire book at one time. We put it on the coffee table in our family room along with another family album. I thought that might help jog her memory. I’m glad to say that has worked.

One day last week when I arrived home to relieve the sitter, she and Mary were seated on the sofa. Kate was proudly showing the book to her and providing her own commentary. As I walked into the room, I could immediately tell that Kate was excited to be reliving some faded memories as well as sharing them. After Mary left, I took her place beside Kate, and we spent a little time looking through the book.

Yesterday when I got home, Kate and the other sitter, Anita, were sitting in the family room. This time Kate was seated on the sofa by herself with the album. She seemed happy as a lark as she turned from one page to the next. As I did when Mary left the other day, I sat down and looked at the pictures with her, and we did a little reminiscing. Ken put a lot of work into this album. He will be glad to know that it is providing both of us with such special moments.

Posted on

More on Sleep

For at least four or five years, Kate has gone to bed before me. When she is ready to go to sleep, I go into the family room where I listen to music and read or work on my computer. Though I sometimes accidentally wake her, she has almost always been asleep when I came to bed. The past three or four nights, however, she has been awake. That in itself is not a problem. I hadn’t thought much about it until two nights ago. Each night she has indicated that she is glad that I finally came to bed. Two nights ago, she said more than that. She said she couldn’t imagine where I was or what I was doing. She sounded somewhat disturbed (not irritated, but afraid). She also went on about it a little longer than I thought would be natural for her.

Her response made me feel as though I had abandoned her. Knowing that she can’t remember, I should have thought about this. The fact that this has been our pattern for so long prevented my even considering that she might get worried or feel she had been left alone. I try not to overthink things like this, but I also don’t want to overlook something that might call for me to make a change in what I am doing.

I have not given her Trazadone for the last three nights. That could easily account for her not getting to sleep. Yesterday, I emailed her doctor about the Trazadone as well as her knee. He said she is already on a low dose, but that I could cut it in half and discontinue it entirely after a week. We’ll see how that goes.

In addition, I might address her concern about being alone by staying in the bedroom with her when she goes to bed. The only complication is that she likes the lights off. I like to have more light. I can easily read a book on my iPad. I usually do that anyway. I started to do that last night, but she assured me she would be all right, and she was. I still found her awake when I got to bed about forty minutes later. She said she was waiting for me. I’ll stay with her tonight.

Posted on

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.