Sleeping Later Doesn’t Always Mean Later

As I have mentioned in recent posts, Kate now sleeps later than she used to although sometimes she surprises me. Today was one of those. I was listening to a book by Donna Leon while taking a 30-minute walk around the house. (Yes, I know it sounds boring to walk in the house, but listening to books helps. Besides I no longer feel comfortable leaving Kate alone.) Just as I was ending my last circle from kitchen, to family room, to living room, to dining room, and back to kitchen, Kate opened the door to the family room. It was 7:30, very atypical for her. In fact, I think this would be the earliest she has gotten up during the past eight or nine months.

When I walked over to her, she asked, “Where are my clothes?” I often put them out before I go to bed but didn’t do so last night. I intended to do that this morning but thought I would have more time. I told her I would help her. She asked again where her clothes were. I detected that she wasn’t just asking the location of her clothes for the day. She was looking for all of her clothes to pick out something. She no longer knows where we keep anything. A little later I discovered that she had been in my closet. She was no doubt looking for her things.

I walked her back to her room. As we walked along the hallway, she stopped to look at a picture of her mother when she was in her late teens or early twenties. She said, “Who is that?” I told her it was her mother and said, “She was a beautiful woman.” She said, “Is she gone?” I told her she had died thirteen years ago. She was sad. Then I showed her pictures of her grandparents and the old Franklin home in Fort Worth. When we got to her room, I asked if she would like me to pick out something for her. She did. I gathered several things together, and we walked back to our bedroom.

I laid out her clothes on the bed and she said, “Don’t you want me to take a shower?” I told her that would be nice, and she said, “Who are you?” I gave her my name and explained that I am her husband. She was mildly surprised but not alarmed by the news. We walked into bathroom where I turned on the shower and left her to bathe.

I learned two lessons. The first is that I should be sure to get her clothes ready the night before. The second involves a new video monitor I set up yesterday. It is simply a small Amazon Cloud Cam that connects to my computer, iPad, and iPhone. It seems to work well, but it’s of little help if I don’t check it. <g>

Update on Clothes

I recently mentioned the number of recurring themes in my posts. From very early, one of the most persistent ones has been Kate’s clothes. When I say “clothes”, I really mean a variety of issues that involve clothes. At first, it was simply finding clothes for Kate to wear. She didn’t hang them up after wearing them. They were scattered on the floors and furniture of three bedrooms. The problem was exacerbated by her gaining weight and not fitting into her clothes. That led to issues of buying new ones. We went to the stores where she had shopped for years. They tended to stock nicer lines of apparel than suited her needs. They were also expensive. She still wanted to be actively involved in the purchase decisions. She selected things that she wouldn’t wear every day, and she attended fewer special occasions. She was becoming less and less attentive to soiling her clothes. Over time, she started wearing her good clothes to work in the yard. At first, I would get her to put on her yard clothes, but later I gave in.

One of the big steps forward was Kate’s cleaning up the mess in the three bedrooms. We never talked about it. One day she just started picking things up. As she did, I starting discovering the ones that fit and giving the ones that didn’t to our housekeeper. Then I arranged the clothes in the closet she used most often. I put all the tops on the left side arranged by color. I put all the pants on the right side, also arranged by color. Until recently, that had kept me busy because Kate never hung them back in the places I intended.

Kate continued to gain weight. That meant I had to buy larger sizes than in the past. I finally resorted to catalog shopping. That worked very well. I have bought pants, tops, sweaters, jackets, underwear, shoes, and socks. I had to experiment a little with the sizes. That meant a few returns on some of my first orders and off and on since then. I have found several brands to choose from. I have also settled into pants that stretch at the waist. I also buy at least two and sometimes three identical pants in the same color. Online shopping has certainly made my life much easier.

She was still picking out the clothes she wore each day six to eight months. That meant that she sometimes picked out something that was not quite right for either the weather or the occasion. Neither of us liked my having to be so involved with her daily attire.

Now everything involved with clothes is easier except for keeping them clean. The problem isn’t getting her clothes soiled from working in the yard. She no longer works outside. It arises from toothpaste she gets on her tops and food and sauces she gets on tops and pants. That has me washing a lot more now than in the past. OxiClean and I have become good friends. The washing itself isn’t a big problem. In fact, I find that washing and folding clothes are almost therapeutic. That has surprised me because I resisted taking over the laundry responsibilities for a good while. Initially, I tried to prevent as much soiling as I could. Of course, that was a battle I couldn’t win. It’s still hard for me to deal with her clothes getting dirty so quickly. It is not unusual for me to get her a clean top to wear and discover it has toothpaste across the front of it before we leave the house. That’s the OCD in me coming out and is my problem, not hers.

Issues surrounding her clothes present very little problem now. She has things that fit. I know where they are. When she needs something new, I know how to get it without leaving the house. Some of this has come at a cost. The major reason some things are better is that Kate is now more dependent on me for help. I determine what she wears day and night, and I am increasingly taking more responsibility for getting her dressed. I don’t mind any of those things; however, I wish for her that she were able to do more for herself. That’s a sad thing.

Shopping

Until yesterday, it had been at least two years, maybe three, since I had taken Kate shopping. I find it easier to shop online for everything she needs. With our recent cold snap, she lacks winter clothes that fit. I was going to go online, but we are leaving for Texas next week and wanted to make sure she had something new for the trip. Thus, I took her shopping. I was looking for two types of things. One was tops that were a little heavier than what she normally wears. The other was a tunic-length cardigan sweater.

I had stopped taking her with me years ago when I found that it was confusing for her. She found it a challenge to make a decision as to what she liked and what she needed most or would wear. We often bought things she didn’t wear. I initially gravitated to shopping in her favorite stores without her. I stopped that because the clothes were generally expensive, and Kate would often wear them when working in the yard.

With this in mind, I was interested in how she might feel about going shopping again. To start with, she didn’t express any special interest in going. When I told her I wanted to take her to look for clothes, she simply went along with that the way she does with everything else I do. I shouldn’t have been surprised at her lack of enthusiasm. Since I started shopping for her, she hasn’t mentioned a need or desire to shop for anything. In fact, it doesn’t appear that she has ever noticed that I shop for her. When I give her something new to wear, I don’t mention that it is new or that I bought it. Yesterday, I told her I thought she could use a couple of tops like the one she was wearing, she simply accepted that without comment.

We went to a local department store that has a good selection with reasonable prices. Once we were in the shop, we both found a variety of things that were appropriate. The key was identifying something that fit, and, equally important, that Kate liked. One of the sales people directed us to two tables of tops and several racks of cardigans. We were able to locate tops that met our criteria. Kate was quick to identify the ones that she liked and those she didn’t. She tired very quickly and was ready to leave. I bought two tops and left the cardigans for another day when Kate is with the sitter. I didn’t even ask her to try them on. If they don’t fit, I’ll take them back. Handling her clothes continues to be one of the most troublesome chore for me.

It looks like another marker on our journey, and it involves clothes.

This past week Kate’s doctor had asked if she needed any help with dressing. Kate was offended by the suggestion, and I confirmed that she dresses herself. That was only a half-truth. She does need help in putting on the right clothes for a specific occasion as well as selecting clothes that are not too soiled. This morning we may have crossed another marker. She needed my help getting dressed.

We ate lunch at a nicer restaurant than those at which we usually eat. It is also Easter Sunday, so I knew people’s attire will be a little dressier than usual. With that in mind, I carefully chose everything for her and put the clothes on her bed. I even included the specific shoes along with appropriate hosiery.

When I was aware that she had gotten up, I went to her room where she was just getting out of the shower. I told her good morning, reminded her about our lunch plans, and said that I had put her clothes on the bed. I came back in about ten minutes and found that she had selected different clothes and was just about to put them on. I explained once again that she would need something a little dressier and that I had put out the clothes for her. At that time she was sitting in a chair that was only two or three feet from the end of the bed where I had put her clothes. She seemed a little irritated that I was helping. I told her I would get out of her way and let her dress.

In a few minutes, she came out ready to go, but she wasn’t wearing a single item I had picked out. She was also wearing black shoes that didn’t match. I said, “You didn’t put on the clothes I picked out.” Having said that, I quickly realized that wasn’t the best response I could have made. Fortunately, it didn’t seem to bother her. She just said, “Where are they?” I took her back to the bedroom. Her clothes were still there, but I noticed that the shoes were not. I showed her the clothes and started to look for the shoes. She asked me not to leave and said, “I don’t know what to do.” It was painful to see. She was so confused that she didn’t realize that the top I had given her and was in her hand was what she should put on. I couldn’t find her shoes or the hose I had gotten out for her.

After she was dressed, we went back to our bedroom where I had seen a pair of shoes she had worn yesterday. I knew they would be a good substitute for the ones I had originally picked out. She put on the shoes, and we were on our way.

The next issue we faced, and one that continues, is the pain in her knee. I have been unable to tell if the Tylenol has helped. One thing for sure is that she is indicating more pain today than I have observed in the past. Again, it makes me wonder if this isn’t something more than a case of arthritis.

Getting ready did not lead to a panic attack, but Kate was definitely experiencing more emotion as a result of learning she had put on the wrong clothes and having to change. I think that is what caused her to be so confused as she was getting dressed. It was about 20 minutes before we needed to leave for the restaurant, and I didn’t think it was worth it to drop by Panera. I suggested we go to the family room and relax a few minutes before leaving. I gave Kate her iPad and put on an album of soft cello adagios. That seemed to work. She was calm by the time we needed to leave.

When we got in the car, I played the second movement of the Brahms Violin Concerto in D. That is another piece of music I have found to be very relaxing. I have played this often when she has had an actual panic attack. We didn’t speak on the drive to the restaurant. When she got out of the car, I could tell the pain in her knee was bothering her. I parked in the closest place I could, and we walked very slowly to the restaurant.

Changing Attire for Bed

Up until the past six months or so, Kate’s choices of things to wear to bed have been the same as they were throughout our marriage. She has always been very conventional. She has several night gowns as well as a collection of robes. Her general pattern was to put on a robe over a gown and read before going to bed. Then she would take off her robe when she went to bed. More recently, she has made a change.

This began several months ago when she would bring a robe, but no gown, into our bedroom. When I noticed this, I asked if she would like me to get her a gown. She would either say yes or tell me that she would get one. After this happened a few times, I started getting a gown in advance and putting on her side of the bed. She often chose to wear what I was selecting but sometimes ignored what I had brought. In those instances she would get a robe.

For a while, I continued to select a gown for her, but it appeared from what she actually wore to bed that she preferred to sleep in a robe. I asked her if there were something about a robe that she preferred over a gown. That was silly for me to ask. Naturally, she was unable to explain and didn’t want to talk about it.

Since then, she has been following a fairly consistent routine. She usually sleeps in a robe, but once in a while she picks out a gown. There have been a few times when she has slept in her clothes. Last night, however, she made another change. We had come back from opera night at Casa Bella around 9:15. She got ready for bed pretty quickly. I got her medications. She brushed her teeth. Then she undressed. Instead of getting a robe or a gown, she put on the cardigan sweater that she had worn over her top when we went to Casa Bella. As I often do, I am wondering where this is going.

Our Clothes Saga

This may say more about me than about Kate, but I believe that issues involving clothes have been among the most frequent issues with which I have dealt during her 7-year journey with Alzheimer’s. In the early years, the problem centered on the fact that she didn’t hang up or put away her clothes. At one point, we had three bedrooms with her clothes stacked on the beds, furniture, and floor. For quite a while, I didn’t say or do anything to change her behavior. It was frustrating for her and for me. She couldn’t find anything to wear.

At the same time, she was eating more than she used to and gaining weight. That meant a lot of her clothes no longer fit. My response to that was to buy new clothes. What I didn’t count on (but should have), was their getting lost as quickly as the old ones. During one year, I bought her almost 20 pair of pants. She still couldn’t find something to wear. (Yes, I’m a slow learner.)

I decided the way to tackle the problem was to take pictures of the new clothes. I thought that would at least enable me to find them more easily. It worked for her tops, but her pants looked alike to me. They were either black, tan, or brown. I still had a hard time identifying the new (the ones that fit) from the old (the ones that didn’t). Gradually, I got better at identifying the different labels and sizes.

That prompted me to start getting rid of the clothes that didn’t fit. As Kate tried these clothes and tossed them aside, I would come behind her and take them to my closet. Little by little I gave them to our housekeeper whose church collected old clothes for those who needed them.

My problem was still not solved. Clothes were still scattered among our two guest rooms and a bedroom we call “Kate’s room.” That’s when I decided to reorganize her closet. I began to locate clothes that fit and started hanging them up. I put all of her tops on the left as you enter her closet and arranged them by color. On the right, I put all of her pants, also arranged by color. That has proven to be useful to me, and at one point, I think it helped her as well. I’m not so sure now.

To make my system work demands that I regularly pick up clothes that she has thrown on the floor or furniture and replace them on hangers in the closet. I frequently do this in the morning before she gets up. That way I can make sure that there are things she can wear that day.

One day a strange thing happened. Kate must have gotten so frustrated with clothes scattered everywhere that she started picking up her clothes and putting them in her closet. That was about two years ago. Since then, she has done a remarkably good job of not letting the rooms return to their previous unkempt appearance. That does not mean that she puts her clothes away after she wears them although she often does. Typically, she takes off her clothes in our bedroom and throws them on the floor or the chair on her side of the bed. They often stay there a day or so before I pick them up and put them away. At any rate, we do much better keeping her clothes straight and having clothes that fit.

Another clothes issue has been keeping them clean. There have been two separate parts of this problem. The first involves what she wears when she works in the yard. For three years or so after her diagnosis, she continued to wear her “yard clothes” when she was working outside. As her Alzheimer’s progressed, she started wearing her “good” clothes to work in. That was, and is still, not a problem for her, but it was for me. I wanted to know that she had clothes that she could wear to the various places we go on any given day. I didn’t want them messed up. That was especially true if they were brand new. I responded to this by giving up my efforts to get her to wear her yard clothes. That means her clothes get more messed up than I would like.

The second aspect of the clean clothes problem is keeping them clean with ordinary wear. It seems that it is next to impossible for her to wear something for even a short time during the day without getting it soiled. Almost every time she brushes her teeth she gets toothpaste on her clothes. When we are eating, she often drips food or drink on herself.

One of the things I have done that seems to have worked with these issues is to buy multiple pairs of LL Bean pants with an elastic waistband. I keep them on hand in different colors, and I can easily wash them at home. They have helped me a lot. Nowadays, I buy virtually all her clothes online. That has been a great convenience, and I have spent less money than what I was spending going to the local dress shops where she had shopped for years.

There are still other issues involving clothes that come up. They are ones that I simply accept. One of those started within the past year. For some reason, she started wearing 2 tops with her clothes, not always but most of the time. I know that layering can be a trendy thing, but Kate seems to pick tops that don’t match or complement each other. For example, this morning we attended church for the first time in quite a while. I have regretted this because we have both been so active in the church for as long as we have been members and believe it is an important connection to maintain. At any rate, I picked out something appropriate for her to wear. It is a very nice heavy knit shell and sweater combination and was pricier than things I usually buy. After we returned home from lunch, I suggested that we brush our teeth, change our clothes, and go to the Barnes & Noble Café. She liked that idea except that she didn’t see why she needed to change. I told her she was a little dressed up for a casual afternoon at Barnes & Noble. What I didn’t say was that I didn’t want her to get her good clothes messed up. She agreed to change and went back to her room to do so. When we she was ready to go, I mentioned that she hadn’t changed clothes. She said, “Oh,” and once again returned to her room. When she came back, she still had not changed. She had taken off the outer sweater but was wearing the shell with a casual tee shirt over it. The tail of the shell extends below that of the tee shirt. She was still wearing the same slacks and the shoes she had worn to church. I decided not to push it.

It turns out that she also was carrying two additional tops. She had taken one of them with us when we went to Panera the other day and simply put it on the table. She brought both of them with her in the car and took them into Barnes & Noble. She put one on the table and dropped the other on the floor.

Considering everything, I find that we have fewer problems with clothes now than in the past. I think there are three things that have made the difference. First, some of my organization has helped. Second, Kate has been more compliant when I suggest she wear something different. Finally, things are better because I don’t work hard to achieve my own goals regarding her clothes. I mostly let her wear whatever she wants. That is probably the most sensible thing I could do.

When Kate is happy, I am happy.

Periodically, I like to reflect on how I feel about Kate, our relationship, and the way things are going. The fact that it has been seven years since her diagnosis prompts me to do that now. The medical community uses a one to ten scale for patients to indicate their pain level. If I were to apply this scale to my feelings about the way things are going, I would probably say an 8. Kate and I are both in good moods right now. Both her mood and her state with respect to her Alzheimer’s influence my mood significantly. She has been in a particularly good mood for some time now. If that were the only factor in my mood, I would have said a 10. The fact that I notice more and more symptoms of her decline brings the rating down a couple of points.

During the past seven years, Kate has experienced more irritability than before. That was concentrated over a fairly lengthy period of time. The good thing is that it was neither intense nor constant. It was mild and relatively infrequent. I am never sure how much her behavior is influenced by mine, but I have made some changes over the couple of years or so that could have played a role in her showing less irritability.

In the past, we have often engaged in humorous banter that originally worked to lessen the seriousness of emerging problems. Kate has always recognized my OCD tendencies. As a result of my gradually taking charge of so many aspects of her life, she would tease me about how “anal” I am. I always responded light-heartedly in a way that encouraged her expressions of concern about my desire to keep her clothes clean, to see that she wore her yard clothes when she worked outside, to suggest that she change when I saw that what she was wearing was inappropriate for an event we were attending, and lots of other things .

I think this served us well for quite a while. Over time, however, her teasing seemed to display a more serious tone. I decided not to encourage this kind of banter any longer. I also made some important behavioral changes. I eased up significantly on what she wears. For the most part, I let her wear whatever she wants when she is working outside. I have also tried to be clever when she is about to wear something outside that really concerns me. For example, I bought her a new winter coat for everyday wear. When she was about to wear it to do her yard work, I told her I had something that would be even better for her. I told her it was a good warm coat. She accepted that. I bought a couple of pairs of new shoes and keep them in my closet. I bring them out for her whenever I think she should wear something a little nicer than the ones she wears every day. In the evening or the morning before she is up, I locate them and put them back in my closet. I do the same with her pants.

One other change is that I increased our conversation about our relationship. I encouraged talking about how long we have been married and emphasized all of the good things we have experienced over that time. None of this was something we had not done before. The difference was talking about it more with a deliberate attempt to facilitate good feelings about our relationship. For example, on occasions when she needs help getting her clothes on, she usually thanks me. Instead of casually saying, “You’re welcome. Glad to help,” I might look at her and very deliberately say, “I’m glad to do it. You know we’re really a team.” I’ve emphasized the fact that we are doing these things together. She has responded well to the idea of our being partners in everything. I, of course, see this as being partners in her Alzheimer’s. I don’t believe she thinks of that at all. I believe she looks at it as simply the kind of partnership that makes for a good marriage. She’s right, of course, but I also see a special connection to her diagnosis that she no longer sees.

I am not saying that my changes have made the difference in her happiness. That may only be a part. Kate has declined during this time period and become more dependent. Thus she is more accepting of my help in just about every area of her life. I do believe, however, that these changes have meant fewer bases for conflict, especially over clothes. It has also fostered more happy moments. We both like that.

An Experience With Ladies’ Intimate Apparel

Kate and I are now at Barnes & Noble where we are awaiting a call from Jan and Scott Greeley, our long-time friends who live in Nashville. They are in town for the memorial service for a friend. We are going to meet them for lunch after the service. Since my last post, we dropped by the bank to get some cash and came over to Belk’s to buy Kate a new bra. For almost the entire time since her diagnosis, we have faced a number of issues involving clothing. Some of those have been partially resolved, but there are always new ones. Here is one that occurred about 45 minutes ago.

I should start by saying that my knowledge of women’s apparel has never been good. That is especially true when it comes to bras. Today was not my first experience shopping for them, but it was the most challenging one. A writer for a situation comedy could have a field day describing what transpired. It could make for quite a funny episode. I, on the other hand, didn’t take it that way at all. For me, it represents one more sign of how far Kate is on this journey. Thus, I see more sadness than humor.

Today, perhaps all week, Belk is having a sale on all their bras. They are fully stocked for the occasion. In some ways that might make it a good opportunity to make a purchase. Instead, I found it overwhelming. Despite the store’s best efforts to have things in order, I could not identify a consistent pattern to the way they were arranged. I know it must have been overwhelming for Kate. She didn’t even make an effort to look for anything. She trusted and depended on me for that.

Finally, I picked out what I thought was the correct size. I have done this at least twice before, once at Belk’s and once through Amazon. It turns out that the size I bought last time must not be the right one now. Kate tried on at least five different ones without finding the right fit. It took her quite a while to try them on. When she came out after trying the first two, she couldn’t tell me much except “they didn’t fit.” Then I went back for a couple more with the same result. Finally, I suggested that I go into the fitting room with her. She thought that was a good thing. After looking at the way this fit, I felt it was still too tight. I suggested we try to get something through Amazon. It would be easier than picking through all the items hanging on the racks.

I should also mention that each time Kate came out of the fitting room she had put on the two tops she was wearing. The problem was that she kept putting them on backwards. One time she left one of them in the fitting room. She is getting so very confused, and it is very sad to see. These are the kinds of things that make me pessimistic about the upcoming year.

Learning To Think Like a Person With Alzheimer’s

I have often said that caregivers for people with dementia spend much of their time either trying to prevent problems or solve them. Like most caregivers, I like to think that I do a respectable job; however, I must admit that I often fail. I think I do so because my solutions always arise from my brain and not Kate’s. Let me illustrate what I mean with something that happened tonight.

I’ve commented before that over the past few weeks, Kate has gone to her room to get a night gown and come back wearing a robe and no gown. At first, I didn’t say anything. Later I asked if she would like a gown. On occasion she has hesitated, but almost always she says yes. Then I ask if she would like me to get one for her. Most of the times she says yes. It seemed clear to me that she really wants a gown.

I’ve been trying to figure out why she so frequently gets a robe instead of a gown. I’ve asked her, but she hasn’t been able to explain it. As I went through different possibilities, the first thing I thought was that it was difficult to pick out a gown because she has a number of each. They also get mixed up in her closet. This morning I decided to rearrange her robes and gowns. I grouped them so that she would see the gowns grouped together before she got to the robes which I put behind them.

Shortly after we returned from Flat Rock tonight, she came into our bedroom wearing a robe. I could see that she didn’t have on a gown and asked if she wanted one. She did. I asked if she wanted me to get one. Again, she did.

Now I’ve decided that the problem is that there are so many clothes hanging in her closet that it is simply too confusing for her. I say that because there have been occasions when she has asked me to get either a top or pants for her after she had looked and not found anything. Of course, all the literature on dementia points out the difficulty people with dementia have when presented with many different options. I need to get rid of some of the clothes she will no longer wear and reduce the number of options in main closet. It can be challenging when the person you want to help is unable to explain what she needs. And it’s impossible to be accurate when you can’t figure out what’s going on in her brain. I can’t imagine what she must be feeling when things like this happen.

A Surprising Positive (?) Change

Much earlier in Kate’s journey, I commented on the fact that she didn’t ever put up her clothes. I have pictures showing clothes stacked on the bed in her office, on the floor, and in two of the guest rooms. This continued for a very long time. I am glad to report that she is considerably better about hanging up her clothes now than in the past. That doesn’t usually happen at night when she changes into her night clothes. At that particular time, she almost always throws her clothes on the floor or the chair beside the bed along with her shoes and socks. Sometimes she picks them up in the morning or later in the day. Other times I get to them first. Over the past two-three years, I have made a point to try to pick up her clothes wherever I find them and put them back in her closet. But I don’t want to take away from the fact that she is actually working hard to keep things straight.

I don’t really know how to account for the change. I consider it positive for two reasons. One is that it makes it a lot easier for both of us to find the clothes she wants to wear. Secondly, I think it is good for her to have a responsibility, something to do besides working jigsaw puzzles and pulling leaves. On the negative side, I also imagine that she is struggling to fight the more natural tendencies of her Alzheimer’s. I see it in moments when she tries to figure out how to put on a night gown or a top. On occasion, I offer my help. She almost always turns me down. These are among those moments when I feel so sad for her. I know it takes an effort for me to face a losing battle trying to prevent or solve problems she has. I can’t imagine how it feels to have them myself.