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The Past Two Days

Monday morning Kate got up early. I was glad because she was up in plenty of time to be ready for the sitter. She was more confused than ever. I’m glad to say that she wasn’t seriously disturbed about it. I wouldn’t call it an anxiety attack, but she was certainly puzzled. It was similar to what I can remember of movies with someone who is experiencing amnesia. This is hard to put in words, but she seemed in a deeper state of confusion and required a little longer to come out of it.

It began when she got out of bed and went to the bathroom. We went through what is becoming a regular routine. She asked about the picture of our daughter. When I told her she, she couldn’t accept that. I started to explain that she and I are married and have two children. That was too much for her. I gave up explaining things. I decided to let her senses go to work.

I took her by the hand to the hallway with the photos of her parents and grandparents. I showed her the picture of her mother taken around the time of her marriage. I told her who she was. She was taken with it as she usually is. We talked about her mother a few minutes. Then we went to the family room where turned on the soundtrack for My Fair Lady. I know she likes that and thought it might jar her memory.

I picked up her “Big Sister” album that her brother made for her. I showed her the cover photo. She didn’t recognize the two children. I said, “This little girl is Kate Creighton.” She said, “That’s me?” I said, “Yes, and this is your brother Ken.” I started to say more when she noticed the photo book of her father’s family. The cover has an ink drawing of the house in which her father grew up. I told her about the house and then opened to the first page of photos of her grandparents. Rather than reading the text, I just told her about her grandparents.

As we were getting started, she heard he song “With a Little Bit of Luck” playing in the background. She started moving her hand to the beat of the music and sang along with the lyrics of the title each time they came up. She asked me to stop talking about the photos for a minute so that she could listen to the music.

Between the photo book and the music, Kate started feeling more at ease. Before long, the doorbell rang. It was our sitter. I told Kate it was Cindy who was taking her to lunch. She looked puzzled. Then Cindy walked in, and Kate responded enthusiastically. That put me at ease. I was getting especially concerned about leaving her in such a confused state. I quickly gathered my things and left for Rotary. When I got home later, Kate was resting. Cindy told me that everything had gone well.

Yesterday was another day of ups and downs. Some of it was humorous. As I opened the car door for her after lunch, she said, “Take off your glasses.” I did. She said, “No, that doesn’t help.” I hope I can get through this without developing a complex about not being handsome.

The day started well. She was up early again. She did have one unpleasant experience. She looked at herself in the mirror and said, “I’m ugly.” I said, “I think you are beautiful.” This has occurred several times before, but her reaction this time was the strongest I have seen. The problem is her weight gain. She is forty to fifty pounds heavier than she was when she was diagnosed. Most of the time she doesn’t seem to notice the change. Twice in the past two days she has commented about drinking with only one straw instead of her usual two. She believes that will result in her drinking less.

We went to Panera but stayed only long enough for her eat her muffin. She worked on a puzzle while eating and got frustrated when she couldn’t go any further. She had completed all but one piece. She couldn’t see it because it was on top of the other pieces. Anyway, we went home where she got on the sofa for what I thought would be a short rest. Instead, she picked up her iPad and worked puzzles for the next thirty minutes before we left for lunch.

On the way home from lunch, we stopped by Target to buy candy for Halloween. That turned out to be a bad idea. I didn’t take into consideration that the candy is at the back of the store. That meant a long walk for Kate. She was ready to leave shortly after entering the store. We came back come where she rested in her recliner for almost two hours.

She went to sleep but woke up a short time before we went to dinner. I asked if she would like me to go through one of her photo books with her. She did. I pulled a chair beside her recliner, and we began. It wasn’t long before we slipped into a conversation about our lives together. We talked about our courtship and getting married. We also talked about our feelings for each other. It was a very tender moment. I recorded about fifteen minutes of it.

Before leaving for dinner she went to the bathroom. When she came out, I told her we were going to dinner and then to a musical performance at our local art museum. I helped her put on a different top that I thought would be more appropriate. Then I told her she looked beautiful. I followed that by saying, “Do you know that you are the most important part of my life.” She was unusually emotional and broke into tears.

All the way to dinner, she was concerned about being with other people last night. She said things like “I hope I don’t embarrass you.” or “I want you to keep me from doing something stupid.” I found it hard to believe that she would have remembered my telling we were going out after dinner, but maybe she did.

At dinner, she did something unusual. She wanted me to sit beside her in the booth rather than across from her as I usually do. I was glad to do that but concerned about her insecurity. We had a nice meal. By the time we were finished, she seemed fine. We went to the concert, and she got along fine. It was a “concert and conversation” with Peter Buffet, Warren’s son. Apart from being a musician, he and his sister work run the foundation established by his father. He spends most of his time doing philanthropic work, hence the reason he was here for United Way. I was amazed that Kate followed at least some of the things. I could tell by her reactions to what he said. She wouldn’t have gotten the details, but she understood isolated remarks. Afterwards, she said, “You’re gonna have to explain this to me.”

As we left the concert for our car, she asked where we were. I told her we were at the museum. She wanted to know the city. I told her it was Knoxville. In the car, she said, “Are we in New York?” I told her we were in Knoxville. She repeated variations of this question all the way home.

At home, she spoke quietly as though others were here. I told her we were the only ones here. She said, “Are you sure?” She was still confused about where she was, but she was happy when she went to bed.

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“Hey, What’s Going On?”

It was never my intention to write a new post every day; nevertheless, I have rarely missed a day since launching the blog almost two years ago. I have the impression that some of my readers have come to expect this. Thus, I worked my way into a self-imposed deadline of 9:00 each morning to post something new. Over the past week or so, I have missed at least two days. On other days I didn’t add a post until late (after 9:00 a.m.) in the day. I started this post at 3:00 p.m. yesterday and didn’t get very far.

So what’s going on? The answer is a lot, and I won’t be able to capture all of it. For the most part, nothing new has happened except that she has required more attention. My best writing time is in the morning, and she has gotten up early several times. Each time she has gone back to bed and rested a little longer. In those cases, she has gotten up for good earlier than I would normally wake her. We’ve made it to Panera two times since Saturday.

Part of the problem relates to the increasing difficulty she is having with her jigsaw puzzles. As a result, she spends less time with her iPad. That has a direct effect on how long we stay at Panera. It is similar at home. She starts to work on her puzzles. She needs my help. That demands my attention. It isn’t long before she wants to quit. Then she doesn’t have anything to do.

Her photo books have come to play an even bigger role in occupying her time. That also means occupying my time. I could, of course, let her look at her books by herself; however, I know that she can’t remember the people or the events surrounding each photo. In addition, she can’t read. I need to read for her and do it in a way that sounds like I am talking to her and not just reading the text. I enjoy doing this. I think of it as quality time together.

Another result of her not using her iPad as much is that she has been going to bed earlier. She gets frustrated with it and doesn’t want to do anything else. Going to bed is easy. She still doesn’t go to sleep right away. It can be well over an hour, but I believe that change has meant she wakes up earlier in the morning. On the whole, I have found her behavior and our daily routine to be more unpredictable. These changes effect the time to write about what is happening or to take notes for later. So that is why I my blogging has been less predictable than usual.

It also makes me wonder about the future. I am doubtful that Kate will become more predictable. Until she is much less active than she is now, I could have my hands full.

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All’s Well That Ends Well

As I was thinking about waking Kate at 10:45 yesterday morning, I heard her say something. It sounded like, “Are we going to get something to eat?” I was in the kitchen and walked to the bedroom where I discovered that she was both wide awake and cheerful. I said, “Good morning. I’m glad to see you. You look happy this morning.” She said, “I am happy and you are too.” I said, “I think we are both happy people. Maybe that’s what has kept us together so long.” She agreed. Except for her needing/wanting my help getting her up, she didn’t seem like a person with Alzheimer’s at all. There was no sign of confusion. That didn’t last long.

When got to the bathroom, she noticed a photo of our daughter Jesse. Kate loves this picture but never knows who the girl is. We went through our regular routine. She said, “Who is she?” I said, “your daughter.” She asked her name. Then she said, “She’s beautiful.” I said, “Just like her mother.” She said, “Who’s her mother?” When I told her, she was surprised and asked how that happened. I told her that she and I are married, and we had two children. This was one of those times she couldn’t accept that we are married, and I dropped the subject.

After finishing in the bathroom, I got her dressed quickly and easily. Everything was going well. Before leaving I said something that irritated her. I don’t know what it was, but I decided not to find out. She can’t ever explain. We listened to music all the way to lunch. Everything was fine when we got to the restaurant, and we enjoyed our time together while eating. Just before leaving, I misunderstood something she said, and she was irritated again. We listened to music all the way home. She was fine arrived.

She asked what she could do. I gave her two options: work on her iPad or we could look at one of her photo books together. She chose the iPad. I was a little surprised because she has been going directly to the sofa to rest. It was less than fifteen minutes before that was what she wanted. This was one of those occasions when she actually slept. She was asleep thirty to forty-five minutes.

Then she sat up and appeared very alert. It looked like she was going to get up, and I asked if she wanted to go to the bathroom. She said she thought she would walk around outside for a while. That was a big surprise. She hadn’t shown any interest in doing that for almost two years. She surprised me again when she said there is a man she sees working in his yard and she would probably talk with him a little. She was actually picking up on a memory from the past. In both our present and past houses, we have had neighbors who work in their yards a lot. Kate had often see them working, and they would talk a while.

I went with her. For the past year, I’ve had someone working to restore the flower beds after her excessive pruning of the shrubs. I took out eighteen that were dead or “beyond repair.” The weeds had also taken over. It’s beginning to take shape again, and I was eager to see her reaction.

Thankfully, we didn’t get too far. She quickly found a hydrangea and started pulling off the flowers and some of the branches. It is late in the season, so I wasn’t bothered by that. I was, however, concerned that she might start doing the same with some of the shrubs that are coming back. After a short time, she wanted to go back inside to rest.

When she was ready to get up, it was time for dinner. As we prepared to leave, she wanted to take several of her photo books with her. Something she said made me think she thought we had been visiting and were now leaving for home. I told her we were just going to eat and would be back soon.

She was quiet at dinner and didn’t seem to enjoy her meal. She had grilled shrimp and sides of fresh fruit and a cucumber, tomato, and feta cheese salad. I had a Greek salad with grilled shrimp. Knowing she loves shrimp, I asked if she would like some of mine. She said, “What’s that?” I picked up one and showed her. Then I noticed that she was putting scraps from her two sides on a paper napkin. I took notice because she usually puts them on the table.

Then she said, “When are they coming?” I said, “Who? I am not aware of anyone who is coming to see us?” She became irritated with me because she couldn’t tell me, and she thought I would know. As we talked, she became angry and spoke to me very sternly. She apologized for speaking to me that way. Then she started to cry. At this point, we were both finished with our meals. I tried to comfort her. Then I suggested we go home and relax.

When we got in the car, she apologized again. I said, “That’s all right.” She looked sad and said, “I might do it again.”

Once we were home, I turned on the TV to a concert of the music from My Fair Lady. I have discovered that she enjoys the music itself more than the movie. She loved it. When it was over, I played several scenes from the movie in which they sang songs she especially likes. We spent almost two hours doing this, and she was engaged the whole time. She was happy, and so was I. Music came to the rescue once again. It was a happy ending to a very strange day.

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Getting Along

Over the past week, I’ve had several experiences that remind me of how difficult it can be to care for someone with Alzheimer’s or some other form of dementia. I have tried not to dismiss the challenges that I have faced, but my experience has been different. Kate and I continue to enjoy ourselves even in this last stage of her Alzheimer’s. I sometimes feel awkward about saying this because I know so many others are pulling their hair out.

I’ve reflected a lot on what makes our situation so different. I receive a lot of credit from other people, and I do believe I have done a good job caring for Kate. On the other hand, I don’t believe there is any one thing that explains why we have gotten along so well. Most of it is simply luck.

In a conversation with another caregiver yesterday, we compared notes on how we were adapting. She experiences far more frustrations than I do. When I learned more about her situation, I could see that I would probably be as frustrated as she if I were living her life. It was clear to me that it is easier to care for Kate than it is for other people with Alzheimer’s. She retains a kind disposition and has a sense of humor that helps us. A couple of days ago, I rushed her as I helped her dress. She told me to wait a minute in a very stern voice. I said, “I’m sorry. I’m bad about that. I’d better be careful or you might fire me.” She said, “If I could, I would.” I paused a second before responding. She laughed and said, “I gotcha on that one.” We both laughed and continued getting her dressed. This kind of thing occurs quite frequently every day.

It’s not just humor that gets us through things. We are both “pleasers.” Neither one of us wants to hurt the other. Of course, sometimes we do. She is very good at letting me know when I do something that bothers her, but she usually does it in a kind way. After she tells me not to do something, she often says, “But you are getting better” or “I know you mean well.” These may seem like little things, but they work for us.

On another subject, we had a good experience at Casa Bella on Thursday night. This was the third night since the death of the man with whom we have shared a table for the past six or seven years. Each of these times several members of his family have sat at the table in support of his widow who seems to be adjusting well. We were seated at a long table with ten other people. I was concerned this might not work well for Kate, but the conversation broke into smaller groups. We had a good time, and she especially enjoyed the music.

I think we might go to a movie, Linda Ronstadt, this afternoon. That would be the first one in months and only the second one in over a year. It is a documentary and supposed to be a “feel-good” movie. The last two movies she liked, RBG and Won’t You Be My Neighbor?, were the same type. I hope this one works.

Have a great day. I plan to do the same.

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Decline, Sadness, and Dependency

Yesterday I saw the following tweet from another caregiver, Jennifer Fink, who has a podcast called “Fading Memories.”

Watching Mom decline & lose the person she was is a constant source of low grade grief. That’s why support is crucial for #caregivers. I get a lot of advice & inspiration from my #podcase guests. I hope sharing that helps all of you.

I wrote a reply in which I agreed that the hardest part of caregiving for me is just that, watching Kate’s decline. I went on to say that I have been sustained by the knowledge that she needs me. That has been especially true the past two days.

On Wednesday, Kate was especially warm and friendly to our sitter when she arrived. It appeared that she thought Cindy was a long-time friend whom she hadn’t seen in a while. Kate was lying on the sofa and got up to give her a big hug. I chatted with them a few minutes before leaving and was happy to see that didn’t seem disturbed when I left.

When I got home, the situation was different. I heard the two of them talking as I walked in. Cindy said, “There he is.” Kate had been asking about me. She beamed when she saw me but wasn’t very emotional; however, after Cindy left, she told me how glad she was that I was back and that she feels better when we’re together. This is not unusual. She has expressed this feeling many times, but now I sense a deeper recognition on her part that she is very dependent on me.

Yesterday afternoon, we went for haircuts. I helped her out of the car and was holding her hand as she stepped out. In a second she looked afraid like she was lost. I said, “Are you all right?” She said, “I looked around and didn’t see anybody I knew and didn’t know where you were.” She was almost in tears but made a quick recovery as she realized I was with her. It surprised me because it happened so suddenly, and I was holding her hand the whole time.

After finishing with Kate, the stylist walked Kate to the front where I was waiting. I got up to meet her. She hadn’t seen me yet and was peering all around looking for me. When she saw me, she broke down in tears. I walked to her and gave her a hug as she cried. Then, talking to the stylist, she said, “I wouldn’t want to live without him.” (I don’t know that I mentioned it before, but sometimes I sit in a chair next to her as she gets her hair done because she has been uneasy.)

Something that is a bit more typical occurred this morning. As I was finishing breakfast, I heard her say something. I got to the room as she started to sit up in bed. She wanted to go to the bathroom, but first she said, “Where am I?” This began a twenty-minute period during which she asked that or “Why am I here?” multiple times. When she asks, I always tell her the truth even though she has difficulty believing it. I feel that telling her something else could be just as problematic. I am going to think of a way to redirect her attention. That may be the best way to handle this.

I ended up showing her a picture of her mother and taking her to the family room to see if anything would jog her memory. She liked what I showed her, but it didn’t make her feel any better. She asked what she “should do now.” I told her she could go back to bed. That was exactly what she wanted to do. I asked if he would feel better if I brought my things to the room and stayed in the room with her. She said, “Oh, yes. Thank you.” I put on an album of cello adagios, and she has fallen asleep.

Often there is little I can say to comfort her. I think just being with her and talking in a comforting tone of voice works better than anything else.

These experiences have an impact on me as well. They remind me that I am her “security blanket.” I think of that as a challenge, something to live up to, and that overrides any sadness I might feel.

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Kate’s New Chair

About a month ago, I mentioned Kate’s increasing difficulty getting up from a seated position. I don’t have any control over the seating when we go out, but I did think about what I could do at home. She spends far more time in our family room than any other room in the house except for the bedroom. That led me to think about getting a lift chair.

We went to the La-Z-Boy show room four weeks ago and ordered one. It arrived Saturday afternoon. She tried it out while the delivery men were still here and didn’t get out until time for dinner. That was almost three hours. I demonstrated how it would recline if she wanted to rest, but she preferred to work on her iPad in a seated position. When it came time to leave, I showed her how to raise herself up to a standing position. She was surprised but not overwhelmed by the way it worked. I was the one who was impressed. Much easier than my lifting her.

Yesterday we got a chance to see how it works in the reclined position. She was ready to rest as soon as we returned from lunch. Ordinarily, she would use the sofa. This time I suggested she try the recliner. I adjusted it so that she was practically lying flat. She was comfortable and remained there for three hours. I don’t know that she likes it any more than the sofa, but I believe she is going to enjoy being able to get out of it more easily. Of course, she probably won’t learn how to work the control that has only two buttons – up and down. That shouldn’t be a problem since either the sitter or I will be there to do the job.  I know it will become more useful as her ability to get up becomes more difficult.

It’s easy to look at this as a minor thing, but it represents our moving to a stage when her mobility restricts her more than it does today. I see it as another marker on our journey. In that respect, it is like my discontinuing my morning walk in the neighborhood for one inside the house, bringing in a sitter because I didn’t believe she should be left alone, or getting a handicap placard for the car. It’s another example of the changes we experience. Thankfully, we have adapted to changes in the past. I hope we will do the same as we approach the more challenging ones that lie ahead.

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Caregivers Forget Too

Rick Phelps was diagnosed with Early Onset Alzheimer’s in 2010 at the age of 57. He is a active advocate for dementia awareness and has written at least two books. He started a Facebook group called “Memory People” on which he wrote an interesting post a few days ago. In his message he expressed his frustration with people who can’t remember that he can’t remember. He says this happens even among his own family members.

He makes an interesting point. Caregivers often get frustrated when their loved ones don’t remember what we just told them. Just this morning I read another Facebook post from a caregiver that was pulling her hair out because her mother keeps asking to go somewhere. When she asks where she wants to go, her mother says, “I don’t know.” The caregiver herself didn’t seem recognize the problem is a direct result of her mother’s Alzheimer’s. I heard about another caregiver who wrote down a set of instructions for his wife who had dementia. That can be helpful for someone who can remember there is a written set of instructions and where it is located, but that’s asking a lot of someone with dementia. That is especially true as the disease progresses.

I like to think that I am more sensitive to this issue than many caregivers, but I, too, recognize that I sometimes (often?) say, “But I just told you.” I suspect that most caregivers know it doesn’t make sense to say things like that, but it can be hard to avoid.

It makes me think about my graduate school days in social psychology. During my doctoral program, I was influenced by an advisor who was a vocal exponent of behavioral conditioning. While I have drifted away from that somewhat, I do believe much of our behavior is a function of conditioning. Of course, it is far more complex than what happens in laboratory experiments with pigeons, but I believe we develop many behaviors that are so routine that they can be difficult for us to change. The best illustration I think of is the way we respond when the power goes out. We do silly things like turning on a light switch or the TV only to realize they need power too. We can all think about our own habits that are so hard to change.

So it is when caring for someone with dementia. It calls on us to rethink everything. To make it even more difficult, people with dementia generally appear to be quite normal in most ways until very late in the disease. That fact alone leads us to treat them normally as well.

But all of this is an effort to explain what some would call caregiver “mistakes.” Even though it is hard, caregiving calls on us to change as our loved ones change. One of those changes is how we communicate. Kate is more sensitive now. I have to be very careful what I say and my whole demeanor. The first thing I do when I walk into the bedroom to wake her is to get a sense of her mood. I try to respond in a way that is most helpful. I have found that what I say and the tone of my voice can greatly influence how she responds. She doesn’t want to be pushed. She is not ready for me to be too jovial though she often responds to a gentler expression of humor. She is a little slow to get up. That requires that I try to get in sync with her and not the other way around. When I get it right, it is easier for me to get her up, dressed, and ready for the day and, to top it off, in a good humor.

I feel I have learned a lot since Kate’s diagnosis, but different things are required at every stage of the disease. That means I am always adapting and admit that I have been far from perfect. Kate is good about letting me know when I fail to do the right things. I appreciate that. When I rush her, she frequently says, “Stop. You’re going too fast. Just give me one thing at a time.” I also benefit from her own sensitivity about what she says to me. For example, yesterday morning I started to help her put her slacks on. She stopped me and said, “I can do that myself.” I said, “I’m sorry. I know I shouldn’t have acted so quickly. I wanted to be helpful.” She said, apologetically, “I know you meant well.” Working together like this is a good reason we have been able to get along as well as we have.

I continue to believe Kate and I have been fortunate, and I am cautious about passing along advice to other caregivers except at a general level. What I have done is tailored very specifically to Kate’s personality, her symptoms, and the nature of our relationship. I believe other caregivers should examine their own situations and respond in ways that address their particular, and often, unique situations.

In some ways, I think this last stage that Kate is entering is most critical because she is so sensitive. I try to retain my focus on keeping her happy and safe. I find that when I do that, everything else seems to fall in place. So far, that seems to be working.

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More Restroom Issues and Our Visit with Ellen

I am glad to report that I was able to get Kate up with sufficient time to arrive at Maggiano’s fifteen minutes before our noon reservation. I want to say in passing that Kate did not want to get up but was in a cooperative mood and got up with a little urging. After going to the bathroom and starting to get dressed, she wanted to lie down again. She seemed quite tired, and I gave her a few minutes to relax.

Before arriving at the restaurant, I decided to use the valet. Previously, we have found parking easily at that time of day, but it is getting to be more trouble for Kate to walk. In the past, I tried to give her this opportunity to walk because she needed it. At this stage, my priority has shifted. Now I am influenced more by Kate’s convenience than her need for exercise. That worked well yesterday, and I will use it next time we are there.

Our meal went well. We had an appealing server, and the manager whom we have met on previous occasions dropped by our table to speak. Ellen’s memory care facility is located about forty minutes from there. I suggested that it would be good for both of us to use the restroom before leaving. As we arrived at the door of the women’s room, a lady was coming out and told me no one else was in there. I walked in with Kate and took her to the stall. Then I went to the men’s room and returned to wait for her just outside the door. In a couple of minutes, a woman came out and asked if my wife was inside. I told her she was. She told me it sounded like she may have been having some trouble and that no one else was in there. I went in to check on her. She was still in the stall. She said she was all right and was just coming out. She wasn’t sure how to open the door that she had locked with the latch. I was able to poke my finger between the door and the side of the stall. That enabled me to show and tell her how to lift the latch. That went smoothly.

She came out and I was about to walk out when she said, “Don’t leave me.” She looked a little panicked as though I were forsaking her. I remained with her and helped her dry her hands and arms. This may seem like a little thing, but when she washes her hands or brushes her teeth, she almost always washes her arms and, sometimes, her face. In the process she can get pretty wet.

We finished up and left the restroom before anyone else came in. Then we made our way to see Ellen. She was sleeping in her wheelchair in front of a football game on TV along with several other residents. She awoke quickly and was glad to see us.

The visit went well, but it was different that those in the past. During the past year and a half her speech has declined significantly. We could understand very little of what she said. We only picked up snatches here and there. Once in a while, she would say something in a short complete sentence. Then we wouldn’t understand anything that followed.

Ellen may have recognized the problem as well. I know she wanted to move around more than in the past. Previously, we have stayed either in her room or one of the other public spaces. This time we started out in the activities room. It wasn’t too long before she wanted to go to the main open area between five or six resident rooms on one side and an equal number on the other. From there we went back to her room. Then she wanted to go around the entire interior of the facility that consists of two other “neighborhoods” identical in design to the one in which she lives. She is wheelchair bound, and this may be her way of “walking around” the way other residents in memory care walk “around and around.” We ended up at the table where she eats her meals. It was about forty-five minutes before dinner, but she wasn’t the only resident who had taken a seat early.

Just before we left, another resident in a walker stopped by and told us she was having a bad day. She mentioned several things that had happened to her that day including losing her purse. I doubt if any of these things happened, but Kate and I sympathized with her. She seemed to appreciate that and said so when we left. We had another conversation with a resident as we entered. We had seen her on a few of our previous visits.

We were there almost two hours and around a lot of other residents as well. Sometimes I am concerned about how Kate is responding to being in a memory care facility. She could easily qualify to be in memory herself. Does she ever think about this? I don’t think so. I haven’t seen the slightest indication that she sees herself like any of the residents. Does she even understand that all the residents she sees have some form of dementia? Again, I think not. I doubt that she has a grasp of what dementia is. She knows she has problems, but I believe she still sees herself as normal. When Kate was at an earlier stage, I avoided taking her with me to visit friends in memory care. Now I don’t think she processes much about the nature of the facility itself or the residents who live there.

Despite the restroom incident, the day had gone well. Nothing happened that would make me think we should stop coming to see Ellen. I say that even though Kate can’t remember who Ellen is before we get there. While we are there, she seems to sense the connection. That, and the fact, that Ellen clearly remembers us is enough for me to continue our visits though I know we are approaching the end.

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A Few Thoughts on Restrooms and Travel

I am writing this morning in our hotel room in Nashville. We came up yesterday afternoon to visit with our friend, Ellen, who had a stroke four years ago while visiting her daughter who lives here. Ellen has never returned to Knoxville and is now in memory care. She and Kate were best friends at the time of the stroke.

We cut out international travel in 2015. We made what I believe is our last trip to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas last year. But we have continued day trips to Nashville and have recently made them overnight trips. That has been much easier because it is so difficult to get away early in the morning. I consider it a nice treat as well. Sometimes we meet other friends who live in the area on Saturday afternoon. We have a nice dinner and get to bed at a decent hour that night. Then we visit Ellen right after lunch on Sunday afternoon. We usually stay with her an hour or two and get back home in time for dinner.

Each time we make a trip, I reflect on how travel is going and wonder how long we will be able to keep it up. So far, I have been optimistic about continuing. With the changes that Kate is making, I am becoming more doubtful. I’m not sure at all, but I have the impression that other couples in our situation don’t generally continue to travel as long as we have. Travel can be very disorienting and disturbing to the person with dementia. In addition, the logistics place a greater demand on caregivers. It’s enough to get ready for one person. Packing for two is a greater challenge. When one person has dementia, the issues double.

Yesterday we had lunch in Knoxville before leaving. Each of us went to the restroom at the restaurant. As always, I walked Kate to the door of the ladies’ room. I opened the door and looked around to see if anyone else was in there and to identify the stall that Kate should use. I pointed it out to her, but that wasn’t enough. I had to walk her to the stall and direct her to the toilet. Then I stood outside the door in case she might need me. When she didn’t come out in what I thought was a reasonable length of time, I opened the door. She got a look of relief when she saw me. She couldn’t explain to me what had happened. My guess is that she didn’t see the door to exit the restroom and didn’t know where I was. This would not have been the first time this has happened. Usually, however, she calls for me. She might have done that this time, but I probably opened the door earlier than I have done on other occasions. What I do know is that it was a frightening experience for her. It was a little thing and forgotten quickly, but in that moment, she was really scared. It reminds me of being in a house of mirrors when I was a child. I was frightened. It seems to me that Kate, without a memory or the rational ability to deal with the situation, would be even more frightened. It was another reminder of what a security blanket I am to her. She generally doesn’t know what to do in a situation, but she counts on my knowing for her.

The drive to Nashville was an easy one. We relaxed at the hotel about an hour before going to dinner. We had a pleasant dinner and a good night’s sleep.
Kate was up at 5:00 this morning to go to the bathroom. We were back in bed by 5:30, but I don’t think either one of us was asleep again before 6:00 or shortly thereafter. I got up at 7:00, dressed, ordered and ate breakfast in the room, and checked email. I have lunch reservations at noon but hope that I will be able to get Kate up early enough to get there by 11:30. That would allow a more leisurely lunch before our visit with Ellen.

As I think about it, I don’t believe overnight trips like this are any more stressful for Kate than being at home. Yesterday’s incident in the restroom was in Knoxville before the trip. That is an issue that will have increasing implications whether we are home or on the road. I also find that she is confused about where she is when we are in a hotel, but that, too, is something that regularly happens when we are home. If we were to discontinue our trips, it would probably relate to the extra challenges for me. I don’t believe we are there just yet, but we may be getting closer. In the meantime, I am also trying to be more sensitive to how she feels when we travel. If I sense that she experiences anything more discomforting than being at home, that will be a clear indication that it is time to stop.

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A Bump in the Road While Preparing for Bed

After dinner last night, Kate and I spent over an hour looking at one of her family photo books. Both of us enjoyed the time together. Then I noticed that it was a few minutes after 8:00. That is when I usually try to wind down with the intent of getting her in bed before 9:00. I try to follow her between 9:30 and 10:00 so that I can get up between 5:30 and 6:00.

As usual, Kate wanted me to give her guidance on what to do. I told her she could start by brushing her teeth. I do that because she normally gets water on her clothes. If she puts her gown on first, she may need to change it before getting in bed. As it turned out, she forgot each of the things I said she should do even though I was giving her only one thing at a time. Before getting in bed, she brushed her teeth three times and used three hand towels and several wash clothes.

She was having a hard time following my directions, and we both got a little frustrated. She must have felt bombarded by instructions. I wanted to take my shower, but I wanted to see that she was ready for bed before then. Once I finally her night clothes on, I went to take my shower with the understanding that she would get in bed when she felt ready.

The first thing I noticed after my shower was that she was not in the bedroom. I went to the other bedrooms to see if she might be in one of them. When I found her, she had just pulled the covers back on the bed and was about to get in. I told her I would like for her to sleep with me. She spoke to me in hushed tones as though someone else was in the house, and she didn’t want them to hear our conversation. I tried to tell her we were alone, but she didn’t want me to speak. I walked her to our bedroom. She seemed a bit nervous and told me she didn’t know where to go. I felt bad about that. This was the first time in a year or so that I have gotten in the shower before seeing that she was in bed. She also felt bad about snapping at me a couple of times during the whole process. She apologized as she normally does. I apologized to her for rushing her.

She must have been unusually tired because she didn’t take any time to pull her hair once she got in bed. She went to sleep rather quickly. That is the first time I recall her doing that in a long time.