The changes are gradual, but noticeable.

Yesterday I checked on Kate at 10:30. She had gotten up but had not yet showered or dressed. Not long ago, we would have been at Panera. It was after 11:30 before she was ready to leave, so we went straight to lunch. This has occurred with increasing frequency over the past few weeks. A number of people at Panera have asked where we’ve been. I’ve told them we’re sleeping a little later lately.

It was late April or the first of May that her sleeping pattern began to change. At that time, I wondered if this could be a sign of some overall change that was taking place. I also considered the fact that she was taking Trazadone. It is often given as an aid to sleep. After consultation with her doctor, I took her off of it. On the whole, I believe that helped a little. I do believe she is sleeping fewer hours each day. Before taking her off, she usually slept 12 to 14 hours. Since then, the time she wakes up has been more erratic. I would say that she sleeps 11 to 13 hours but occasionally as long as 15 hours. For a long time, I haven’t made any commitments before noon. Now I feel more comfortable if we don’t have any before 1:30. For example, her doctor works out of two offices. One is a good bit closer to us. I have changed her appointments to the farther distance so that she can get a 2:00 appointment.

There are also some days when she sleeps late and then naps again in the afternoon. That happened recently on a day when we had a sitter. She had slept until almost noon. The sitter said she slept another two hours while I was gone. When we returned from lunch yesterday, she went directly to bed and rested almost two hours.

I have been especially sensitive to her sleep routine because I lost a friend who had dementia last year. He was progressing about the same as Kate. After we last saw him, he started sleeping more and died a few weeks later. That may be an unusual occurrence, but I took notice of it.

Kate’s changes are more than just her sleep. As I have reported in other posts, she often picks up items of clothing to take with her when we go out. They are never things that she might need. In most cases, she hasn’t said anything to me about why she is taking them. I don’t ask. I learned a long time ago that she can’t explain why she does things. As we were getting ready to leave for lunch, she said, “I have an extra pair of socks (in her hand). Should I take them?” I said, “I don’t think you’ll need them. Why don’t you leave them here.” Sometime in the past week or ten days, she asked the same thing about some other item. I gave her the same response that time. Otherwise, I just let her bring whatever she has to the car. Normally that is where it stays until I bring it back in.

She has a particular attraction to socks. She often gets out two to four pair of socks to wear even if she doesn’t take them with her. I find them in various places around the house. She has also been exploring closets and drawers that she doesn’t normal check. This morning she got into a closet where she keeps her dressy attire. I keep several tops in there so that she has something appropriate when we are going to a special event. She picked out a very attractive top I had bought a couple of months ago. I didn’t say anything. She looked great, and it’s a top that is multi-colored and won’t show stains. While she was sleeping, I noticed that the bottom drawer of my bedside table was open. Then I saw that she had taken out a small cassette recorder and a charging cable and left it on the bed.

More significant is her change in dependence on me. She is asking for and accepting my help more frequently. It wasn’t long ago that she was regularly declining my hand when going up or down stairs or curbs. Now she often accepts and frequently asks. Its kind of cute the way she asks. As I step off a curb, she’ll simply say, “Hand.” She doesn’t say it sternly. It is a gentle request for my help. She does something similar when dressing. It’s almost like a little chirp. She says, “Help.”

I have been well aware that people with dementia need help dressing, but I never really thought about it much or understood what the problem was. Now I am learning. Getting pants and tops on so that they aren’t backwards or inside out is more challenging than I realized. There is also the problem of the sequence or order in which you get dressed. On occasion when I observe her dressing, I am struck by how much concentration is required for her to figure out what she should do next. Sometimes she just has to call, “Help.” The interesting thing is that this has occurred so gradually that she doesn’t seem to express any frustration or irritation that she has to ask for my help. She is very comfortable asking. She doesn’t do it all the time. She is still picking out her own clothes most of the time.

Of course, one of the most noticeable changes are in her memory. The fact that she asks my name more often is among them. When taken together, all of these things make it clear that our lives are becoming very different. Change brings with it a lot of feelings. At Broadway Night at Casa Bella on Thursday, they sang a song I had never heard, “Happy/Sad.” That seems to be where I am right now. I’m happy for all the good times we have had and will continue to have, but I’m also sad as I contemplate the changes taking place.

Another Episode of Anxiety

We had a very nice evening last night. After dinner, Kate spent an hour or more looking through two of her photobooks. As in the past, it was just like seeing them for the first time. We followed that by watching the third of three DVDs of her family’s home movies and videos. This video had just as much impact as the first two. After that, she dressed for bed and then went to the bathroom. When she returned, I noticed that she seemed to be breathing heavily. Then she began to make audible sounds as she breathed. It was like, “Oh . . . Oh . . . Oh.”

We got into bed, and she said tearfully, “I’m sorry I didn’t get everything done.” I said with a soft, comforting voice, “That’s all right. You didn’t forget anything. There wasn’t anything for you to do.” She didn’t calm down immediately. I asked if she could take some slow, deep breaths and relax. That is something she does when she has an attack of acid reflux. I held her for a few minutes and began to talk about her family that we had just seen on the DVDs. That led to talking about our marriage and the good times we have had. In a short time, she relaxed.

I wish I knew what brings on these attacks. This is the third one in the past two or three weeks. Each time it seems to occur without my being able to connect it with anything specific. The fact that she apologized for not doing something suggests she imagined my asking her to do something that she didn’t do. I think I’ve mentioned before that she really wants to please me. That has caused me to try not to say anything when she forgets to get ready to go somewhere or wear clothes I have picked out for her. It makes her feel bad.

Each time something like this happens, I wonder what the future holds. That is truer now than a few months ago.

More Trouble With My Name

Kate still remembers my name, but the tie between my name and me is getting noticeable weaker. We are spending a little more time at home today since we have a crew of workers installing new windows in the house. A few minutes ago as we were sitting across from each other in the family room, she said, “What is your name?” I gave her my first name. Then she asked for my full name. After I had done that, she asked me to repeat it again. She tried to repeat it and then stopped. She asked me to repeat it. Then she repeated it back to me. To me that is another sign that she is working hard to hold on to all the memories that are slowly fading away. I am so glad she doesn’t seem to be disturbed at all. That would bother me more than the sadness of watching her slip away from me.

Memory is fading away.

As you have probably detected from my recent posts, Kate’s world is changing. Its getting smaller and smaller. As it does, mine changes as well. I am taking charge of things that just a short time ago, she was doing for herself.
This morning I had an example. She walked into the kitchen where I was working on my computer. She was dressed for the day. I got up to greet her. She said, “Don’t get too close. I haven’t brushed my teeth.” I said, “Well, you could do that now while I get your pills ready for you.” She said, “Where can I find the toothpaste?” I told her there should be toothpaste and toothbrushes in each of the bathrooms. Then I said, “Let’s go to our bathroom, and I’ll show you.” This was a first. She has been brushing her teeth in all three of the bathrooms for years. This goes along with her forgetting how to get ice out of the dispenser of the refrigerator or locating the cabinet that keeps her cups that she takes with her when we go to places like Panera.

When we got to the bathroom, she asked me to look at her top to see if it was on backwards. It was, and she started to take it off. I left the room. A moment later, she called for me. When I got there, she was tangled up in her top. She said, “Can you help me?” I took the top and identified the label in the back and then held it up for her to put arms into the sleeves. She took over from there. This was another first. She does have one long night gown that I have had to help her with several times, but this was an ordinary top similar to all the others she wears. Getting into her night clothes is beginning to be a challenge as well. It is not uncommon for her to start to put on her gown and then put on the clothes she was just wearing.

She is also being more careful to ask for my hand when going up or down curbs and stairs. She has tried to retain her independence with respect to that for a long time. She used to be offended when I tried to help her.

Yesterday she asked me more questions than usual. They were almost all the same ones I hear regularly. The difference was that they were repeated so often during the day. They mostly related to the names of her parents, my parents, and our children. Last night she again picked up the photobook her brother Ken had given her in May. She enjoyed it as much as the first time she had looked at it.

Although she doesn’t express any concern or frustration with these changes, the fact that she continues to ask and to look at her photobooks seems like a serious effort to retain some control of her life. I told her the other day that I would be happy to write down the names of our parents, children, and grandchildren as well as a few things like how long we have been married, places we have lived, and a few of the special things we have done during our marriage. She seemed to like the idea, and I have started with a few of the basics.

When I see changes like these, I always wonder about the future. I always have potential plans for things that may or may not come to pass. One of those has been another possible trip to Chautauqua. Last year I was convinced that going this year would be out of the question. More recently, I have thought that we might be able to go for just a few days rather than staying a full week. I have just about decided to stick with my original plan and not go.

This is our year to have Thanksgiving with Kevin and his family in Lubbock and Christmas with Jesse and her family in Memphis. It is too early to make a decision on either one of these. Right now I intend to make both trips, but I will have to see how Kate is doing as we get closer to the holiday season.

I think we should be able to continue day trips to Nashville for the foreseeable future. I might even consider an overnight trip to either Asheville. At the moment, I believe it is best to continue doing what we have done in the past – take it one day at a time.

Predicting What Comes Next

For as long as I can remember I have followed regular routines. I’ve had many friends who kidded me about eating Kellogg’s Raisin Bran every morning from the fourth grade until three or four years ago. There really were exceptions, but not many. I have applied this same routine to caregiving though it doesn’t work as well. Kate is not naturally inclined to following a regular pattern. When you add Alzheimer’s to the mix, my activities are not as predictable as I would like.

Before this sounds like a gripe session, let me quickly say that Kate is the best person to care for that I can imagine. As we have for our entire marriage, we have been able to accommodate our differences with a minimal amount of effort. We owe that to something we have in common. Each of us wants to please the other.

Alzheimer’s is disruptive to routine. In most respects, some might find it surprising just how routinized our lives are. From the time Kate wakes up, our lives are pretty predictable. It’s before she wakes up that leads to this post. Until a few months ago, I knew about when she would get up each morning. It might vary by thirty minutes to an hour, but she got up around 9:00 and would be ready for a trip to Panera around 10:15. More recently, that has varied from as early as 7:00 to as late as noon. Yesterday, for example, I woke her at noon. She would have slept long if I had let her. I don’t know what time she got up this morning, but she was ready for Panera before 9:00.

In the past year, I have ceased making any commitments before noon. That is sometimes a challenge as it was earlier this week when I scheduled an appointment with her ophthalmologist. We had to work to find a time that was suitable for us and for the doctor. On the whole, avoiding any morning obligations has worked well. That’s something I plan to continue.
The only minor problem for me is on the days we have a sitter. I like to have lunch with Kate before the sitter arrives. About a third of the time, that requires my waking her. I don’t like to do that because she is always slow to wake up. I work hard not to rush her. On quite a few occasions, I have called the sitter and asked her to meet us at Panera. That works, but I would have enjoyed spending more time with Kate before having to leave.

The most important issue for me is wondering if the change in her sleeping pattern signals something else. I may be overly sensitive, but we have a mutual friend whose husband died earlier this year. We had been with them a few months earlier. His wife told me that shortly after we had been together, he started sleeping more. Then he started a decline that ended in his passing.

I recognize that Kate’s change is different from his. Hers is from a pattern that was fairly stable to one that is now erratic. His was from a stable pattern to a steady decline. Rationally, I know that this may not portend anything that should be of concern. As a caregiver, however, I am always sensitive to any signs of change. Most of them have been markers in her overall decline. This sensitivity is very unlike me. I think caregiving has led me to notice little things that I wouldn’t if Kate did not have Alzheimer’s. I have often thought that caregivers spend a good bit of their time either solving problems or trying to prevent them. I believe wondering if small changes in behavior mean something of greater importance is a natural consequence of that perspective on caring for someone you love.

Changes in Conversation

I’ve heard other caregivers express sorrow over the changes in everyday conversation with their spouses. I’ve had the same experience with Kate. During the first two years after her diagnosis, our conversation was pretty much the same as it had always been. Gradually, we talked less and less. I think two things accounted for the change. First, I’ve always been a bigger talker than Kate. My parents were incessant talkers. I think my brother and I were heavily influenced by them. Kate has always been able to handle everyday social situations with ease, but she doesn’t have the same drive to talk that my brother and I have. When Alzheimer’s entered her life, she became quieter. We would go long stretches with silence, something that is a bit of a problem for me. I also found that when I would tell her something I was excited about, she didn’t respond in the way she would have previously. Our conversations became one-sided. Even talkers need a little encouragement to keep talking. She just didn’t provide it.

The second thing that accounts for this change is that a lot of conversation relies on memory. In almost any conversation, we refer to things that happened or that we talked about previously. As Kate’s memory declined, she lost the information she needed to carry on a conversation. Each time I would start a conversation, she would be puzzled because she couldn’t remember what I was referring to.

As a result, we talked very little. I felt especially uneasy when we were in restaurants. She wasn’t bothered at all. She could go through a whole meal without saying anything. Frequently, she would close her eyes as though she was going to sleep. Sometimes I wondered if people thought we were having some kind of marital problem. Over time, I learned to accept this, but I still missed our conversations.

Looking back, I believe I was slower to live in her world than I should have been. When she talked, her conversation related to her family. She has a deep love and admiration for her mother. Her long-term memory was still pretty good. What I have only grasped more recently is that feelings last much longer than specific facts. Gradually, we have both evolved into conversations that involve our feelings about both of our families and about our lives in general. We reflect on our friends, the places we have lived, the things we have done, our travel, and other highlights of our marriage.

This change in focus has had a significant impact on our conversation. It is still quite different than before Alzheimer’s, but it is enjoyable for both of us. It depends on my initiating the conversation. I bring up as many different things about our marriage and our families as I can remember. That provides a wealth of topics. The good news is that we can keep repeating them, and they are always new to her. I try to keep the focus on our feelings for the events of our lives rather than simply the facts. The facts provide a way to bring back the feelings. I admit it doesn’t always work the way I had intended. For example, last night I brought up her visit to the Jeu de Paume in Paris with our daughter in 1973. I told her they saw somebody special. Kate’s eyes lit up. It turned out that she didn’t remember the experience itself or that it was Julie Andrews and her daughter they had seen. On the other hand, she enjoyed the story I told her. That is true for almost all of the things I bring up. It’s not a loss, however. She experiences them in the moment I tell her. It’s the way children enjoy the stories their parents tell them. This is working for both of us.

Becoming Needy

As a caregiver who is regularly trying to assess where Kate is on her journey and the significance of the changes I observe, I also recognize the impossibility of define clean breaks representing the transition from one stage to another. There is just too much overlapping. I think what happens is that I have to notice a variety of specific things before I have a sense that she has made any significant changes. That is what has happened over the past few months including the past few days.

When I think about the specific things she has done, they aren’t sufficient by themselves to make me think we are at a new stage of our journey. I have commented on Kate’s increasing dependence on me, but it seems like it’s more than just dependence. She seems to be entering a stage in which she is needier than she has been in the past. I say that based on the increasing number of questions she asks. They aren’t simply about people’s names. For example, yesterday she got a glass out of the kitchen cabinet and wanted ice. She couldn’t remember where to go for ice. At the time, we were standing at the island directly across from the refrigerator where she has been getting her ice for 21 years including a few hours before. As with the loss of names, this doesn’t mean that she has forgotten and will never remember how to get ice again. It begins with one instance and gradually becomes worse. She also shows signs of forgetting which light switch to use to control a specific light or fan. Within the past couple of days she asked me where to turn off the light in a hallway to the bedrooms, a switch she has used multiple times each day for 21 years.

Another indication of her neediness, occurred yesterday when she told me she was glad to see me after I returned home from the Red Cross. It was just saying it. It was the sound of her voice that conveyed how much she meant what she said. It is also in the frequency with which she tells me how glad she is that we met at TCU.

One more of many examples is something that happened last night. As I got ready to take my shower, she called to me. When I reached her, she said, “What should I do?” I told her it would be a good time to get her night clothes and relax a little before going to bed. She looked a little puzzled. I asked if she would like me to get her night clothes. She said she would. Then she followed me to her room where I saw a gown on the bed where our housekeeper had folded it and left it for her. I asked if she would like that one. She said yes, and we went back to our bedroom. A short time later, using her hand signals, she asked if she could use her iPad, something that she needn’t ask at all.

About thirty minutes ago, I took her to the hairdresser. When we left, she was carrying a pair of pants and a wash cloth with her. When we arrived, she asked (again with hand signals) if she should take them in. I told her she could leave them in the car.

All of these things tell me she is not only more dependent, but feeling confused and needy as well. As these changes take place, I feel an increasing desire to help her. That seems like a pretty natural feeling to have after fifty-five years of marriage.

A Sad Moment

My previous post was about a humorous moment. That fits well with many of the happy moments I so frequently post. I want to make clear that not everything that happens makes me happy. Last night was one of those times.

As we approached bedtime, I told Kate I was going to get ready for bed and that she might want to do the same. She went to her room and brought back two robes and a night gown. Then she proceeded to get in bed fully dressed. I suggested that she go ahead and change out of the clothes she was wearing. She got out of bed, but she looked confused. She asked what I wanted her to do. I told her specifically to take off the clothes she was wearing and put on the night gown that she had placed on the bed. I left her to take a shower. In a few minutes she came to the shower door. She hadn’t changed at all. She asked, “What should I do now?” She had completely forgotten what I had told her. That was not surprising. It more surprising that she was unable to figure out what to do at all. I told her again to take off her clothes and put on her night gown. The good news is that she followed my instruction.

I feel sad when she finds ordinary tasks so challenging. For me, that is clearly the hardest part of being her caregiver, not the frustrations, not the stress, but watching her gradually lose her ability to do one thing after another. While I take comfort in the fact that we are still able to enjoy so many things, I find myself wishing we could avoid the changes that may soon be coming our way.

Changes in Sleep Pattern

I was expecting (hoping?) Kate to be awake a little earlier today. I had a special interest. A man with whom I have had a friendship going back more than twenty years died this week. His service was at 11:00 this morning. At 9:00, Kate had gotten up to go to the bathroom. I thought that was a good sign. That would give her ample time to be ready to leave by 10:30. I told her about the funeral, and she asked if she could sleep a little longer. I told her she could. She got back in bed and was quickly sound asleep. Shortly after 9:30, I had dressed for the funeral. I knew time was getting short for her to get ready and asked if she thought she could get up. She really wanted to sleep, so I changed clothes and let her sleep.

About 11:30, I went back to the bedroom with the intention of waking her. I found that she had gotten up. We were definitely too late for the funeral, but we got to lunch at Bluefish close to our normal schedule. We ordered our usual meals, the salmon for Kate and a salad with a cup of shrimp and andouille sausage stew for me. Our regular server was out. She had cut her hand shortly before we arrived, but we were served by someone else who was as friendly as our regular one. We chatted with her about her educational and career plans. She hopes to start college in the fall.

We came directly back to the house after lunch. Kate brushed her teeth and went to the guest room where she is taking a nap. She is lying down on a love seat. That is a bit unusual for her. She has napped many times in the guest room but it has always in the bed which for me would be much more comfortable. This continues the change in her sleeping that I have been following the past several days. I intend to let her sleep as long as she feels the need. Since her diagnosis, it has not been unusual for her to take an afternoon nap, often right after lunch. Generally, she is up within 30-45 minutes. I am eager to see if she sleeps any longer today. I am hoping not.

I should say that I have not given her Trazadone since Monday night, so I can’t blame her sleeping on that. She hasn’t gotten to bed any later than usual. Everything seems to suggest that she may be entering a new stage. That would fit with some of the other changes that I have observed over the past week or two.

P.S. 3:04

Af few minutes ago, Kate walked in. She must have rested about 45 minutes. That’s not bad. I asked if she would like to join me for a while. She said, “For a while.” I take that to mean that she’ll want to go out sometime in the next hour. That would work out pretty well. We could go to Barnes & Noble and then to dinner. In the meantime, she is content with her iPad. I don’t know what we would do without it.

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.