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Travel Days 5 and 6: San Angelo

We left Lubbock on Tuesday right after an early lunch and drove to San Angelo where we are spending two nights with Kate’s brother, Ken, and his wife, Virginia. We arrived in time to have a pleasant afternoon in their home catching up on the happenings in our lives since we were last with them in January. We didn’t have much time together on that occasion. That is why I wanted to arrange another visit. Given the changes Kate has been making over the past few months, I’m not sure if we will be able to make it back again. Virginia fixed dinner using two popular recipes of Kate’s and Ken’s mother, chicken spaghetti and asparagus casserole. It was a perfect way to celebrate being together again.

Yesterday we spent the morning at home. Kate slept a good bit. She joined us about 10:30. We looked at some old family photos and chatted more before going out to lunch. We relaxed at home during the afternoon and went out for a nice meal at a restaurant overlooking the area near their home.

She continues to forget where we are. She woke up around 4:00 a.m. yesterday and went to the bathroom. When she returned, she said she was going upstairs. Ken and Virginia live in a single-story home. I told her we were at Ken and Virginia’s. She said, “What are we doing here?” I explained that we were visiting a couple of days after having spent a few days with Kevin and his family.

Despite this confusion, she has enjoyed herself. Both nights, we watched a DVD on the history of Fort Worth. Since that is where Kate and Ken are from, and I lived there while a student at TCU, it was of special interest to us.

This afternoon we return to Lubbock where we will have dinner with Kevin and his family. We will spend the night and then fly out to Knoxville tomorrow.

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Travel Day 4: Lubbock

Yesterday we had a shorter than usual morning. At least I did. I didn’t get up until 7:00 and Kate didn’t get up until 9:15. By the time Kate was ready to get something for breakfast, it was almost 11:00, so we skipped Panera. Instead we dropped by a Starbucks that is one block away from the restaurant where we were to meet Kevin, Rachel, and Brian. Kate, Brian, and I decided to visit the National Ranching Heritage Center during the afternoon. Kevin had a conference call to make before then. That meant that we didn’t get away until almost 2:30. I think all three of us enjoyed the museum. It was especially engaging for Kate. I am sure she couldn’t understand all that she read or that I read for her, but she tried to take it all in. Quite a few times she turned to me and said, “I want to remember that.” That’s what she says when she wants me to be responsible for remembering something she wants to include in her family photo album. Of course, she hasn’t done any work on the album for two to three years. I know she won’t ever get to it again, but I always tell her I will remember “it” for her. We left the museum through a different door than the one we used to enter. When we walked by the entrance, Kate noticed it and acted like she wanted to go in. I hesitated in responding. Then she said, “Have we already been there?” I told her we had. I didn’t tell her we had just walked out of it.

This was a day when she didn’t ask me to remind her of a single name. She either remembers the names (unlikely) or has learned that she doesn’t have to remember the names in order to participate in our conversations. She did ask several times where we are or where she is. One of those times we were with Kevin. When I told her we were in Lubbock, she said, “So we’re not in Fort Worth.”

We went to an Italian restaurant for dinner.  Kevin, Kate, and I arrived at the restaurant first. Kate wanted to use the restroom. I took her there. She asked me to “stay right here” outside the door to the restroom. I only recall her asking me to do this one or two other times. She obviously recognizes her difficulty getting back to our table. We had a good meal. From there we came back to our hotel. For the second night in a row, we sat in the courtyard. It was a good way to end another nice day.

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Travel Day 3: Mother’s Day

Kate had a nice Mother’s Day with our son, Kevin, and his family. We joined them for lunch at a down home hamburger place that was a stereotypical Texas kind of place. I pulled into a parking space, and Kate said, “We must be in Texas.” I said, “What makes you say that.” She said, “All the Texas license plates.” It’s easy to assume that she is not processing much of what is going on around her, but this is a good reminder that her brain is still working. As she sometimes says, “Don’t count me out yet.”

After lunch, we went back to Kevin and Rachel’s house where we watched the Celtics trounce the Cavaliers. Rachel’s parents live just outside of Lubbock and came in for dinner at another Texas-style restaurant located in the house and barn of an old ranch. I had the chicken fried steak while Kate had her preferred variation, the chicken fried chicken. Kevin and Rachel brought red roses to their mothers.

Kate and I came back to the hotel where we sat outside in the courtyard. There was a nice breeze that was welcome following a high temperature in the low-90s in the afternoon. We were the only guests enjoying this pleasant evening. I suppose they were thinking it must still be hot.

Kate continued to work on her iPad as she did most of the afternoon when we were at Kevin’s. She would be lost without it. I am glad she has something that she can still do almost entirely on her own. Periodically, she accidentally hits a button that takes her to the store to buy new puzzles. I have to get her out. Otherwise, she works the puzzles on her own.

The other day on our flight, I watched her moving puzzle pieces around as she tried to put each one in its proper place. This is not an easy thing for her. She doesn’t seem to clearly differentiate pieces for the edge from those for the puzzle’s interior nor does she consider the shapes or colors. It appears that she completes the puzzles solely by trial and error. It takes her a long time, and most of the puzzles have only 16 pieces. You can set them to many more pieces, but it is quite difficult when the pieces are very small. I started setting them to 16. When she reworks them, that is how they are set when she opens them. The other thing I noticed is that she sometimes works the same puzzle several times in succession. Of course, given her memory problems, that should not surprise me. It definitely does not bother.

Although she asked me for the names of Rachel’s parents a number of times, Kate didn’t express any of the trepidation I observed the previous night when we met Kevin and Brian. I think she has gotten more comfortable with her surroundings.

One of the characteristics she has developed since her diagnosis is to more positively evaluate just about everything. People are smarter and nicer. Food and live theater productions are better. And hotels like the Residence Inn are viewed as higher quality than she would have said before Alzheimer’s. She really likes it here. I wouldn’t suggest that anyone trust her assessment of the things she likes, but it is pleasant to be with someone who is so positive about life. I like that.

About 9:15, we came inside and got ready for bed. Kate commented about how relaxing it had been to sit outside for an hour or so. She was right. It is also true that the period of time between our coming home from dinner and going to bed is always a very relaxing time for us.

Once we were back in the room, she talked about how good she felt about our marriage. She expressed a generous amount of appreciation for what I do for her. (Remember what I said in the previous paragraph. She does have a tendency to exaggerate on the positive side of most things; nevertheless, it is nice to be on the receiving end of praise.) It was a good Mother’s Day, and I felt as though she had treated me like it was Father’s Day.

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Rehearsing Names on Mother’s Day

Kate was up and ready for breakfast at 9:30 this morning. That is earlier than I expected given that she didn’t get to sleep until about 10:30 last night. As we walked down the hall to the breakfast area, I told her that our daughter had sent her a text this morning. She said, “What’s her name?” I said, “Jesse.”

I selected a table and went to the buffet to get her some juice and yogurt. She has been working puzzles on her iPad. A few minutes ago, I showed her the text from Jesse. It said, “I love you, Mom.” She said, “That’s sweet.” Then she asked, “What’s her name?” I told her, and she asked her boys’ names. I told her. Then she said, “What’s my mother’s name?”

She displayed some confusion while dressing this morning, but I don’t think it was significantly different from what happens at home. To make dressing easier when we are traveling, I put out her clothes (from underwear to shoes and socks) for her. I wish that prevented misplacing things or putting her clothes on backwards, but it doesn’t. Caregivers talk a lot about the challenges we face, but I don’t think it compares to what our loved ones experience. And Kate faces them with few outward expressions of frustration. I think she is remarkable.

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Travel can be confusing, especially in the middle of the night.

My mother had dementia. Dad cared for her without any help except for Wednesday morning when he dropped her off at an adult day care center. That allowed him to go to Kiwanis and then grocery shop. He told me very little about his experiences in caring for Mom. I do remember one thing. He said he tied a string from her arm to his when they went to bed so that he would know if she got out of bed. I feel a real connection to him now that I have become Kate’s caregiver. A large part of our responsibility involves either solving problems or preventing them. His use of string was one of the things he did. I have my own bag of tricks.

When Kate and I are traveling, I try, and usually succeed, in getting a room on the lobby level. That way I can get to breakfast and return to the room quickly. Before leaving on a trip, I also print signs that say “ We are in Lubbock (or wherever). Richard is having breakfast in the lobby.”

It’s impossible to prepare for everything. What happens in the middle of the night is one of those things. Last night, Kate got up to go to the bathroom. She found it easily since I left the bathroom light on and had her sleep on the side of the bed that is close to it. When she came out of the bedroom, she started walking toward the door to the hallway. (I always put on the security latch before coming to bed because she has started to go into the hallway on a previous trip.)

Recognizing that she would have no idea where we were, I said, “Kate, we’re in a Residence Inn in Lubbock.” 

She looked very confused and said, “Who are you?”
Richard: “This is Richard.”
Kate: “My husband?”
Richard: “Yes.”
Kate: “Where are we?”
Richard: “Lubbock.”
Kate: “Why are we here?”
Richard: “We are visiting Kevin and his family.”

She got back into bed and slept until almost 9:00. I can’t imagine what it is like to experience such confusion. I am amazed at how well she takes it. To me it would be frightening.

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Another First, Feeling Pressure Over Names

We arrived in Lubbock a short time ago and have checked into our hotel. For the first time, Kate is feeling a good bit of pressure concerning the names of our son and his family. As I have mentioned quite a few times, she often has difficulty remembering their names along with those of daughter and her family as well as virtually all of our friends. She has often practiced them with me. She does this even at times when we are not apt to be seeing those whose names she is trying to remember. Since leaving Knoxville yesterday, she has asked me to tell her the names of our son, Kevin, and his family a number of times. The difference this time is that she is really concerned. I asked if she might find it helpful if I showed her some pictures I have on my iPad. She said that might help. I brought up some pictures taken at Christmas. I quickly discovered that this was too overwhelming and stopped. She said, “You’re just going to have to help me with this.” I assured her that I would help her and that she would be all right. I told her that she would remember them as soon as she saw them. She was skeptical. Then she asked me to tell her my last name.

Our son is flying in from Chicago where he attended a professional meeting. His plane is scheduled to arrived in 45 minutes. In the meantime, I have spoken with our grandson, Brian, who returned home from his freshman year at TCU. We are all going to meet at Panera and then choose a place for dinner. The rest of the family will be attending a banquet for the band. This may be a good thing. Instead of trying to remember all five of them together at one time, she will just have two.

It would not be surprising for you to know that she also can’t remember where we are (Nashville this morning and now Lubbock). After all, that is nearly impossible when we are in Knoxville. It really is impossible when we are out of town.

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Traveling presents its own special problems.

Kate and I have been fortunate to travel a good bit during our marriage. We have always enjoyed the new experiences we have whenever we’re away from home. Of course, we have moments when we are confused or lost, but it’s all part of the joys of travel. For a person with dementia and her caregiver, it can be especially challenging. We have had quite a number of experiences like that since Kate’s diagnosis. We’ve had a few scares, but, thankfully, we’ve never had a disaster, but I can easily understand why couples in our shoes discontinue their travel.

Most often, our problems have been simple ones and short-lived. For example, going through security at the airport is more of a challenge than before. It’s hard enough for the average person to remember the routine, but it’s worse for someone with dementia. It’s especially difficult in a foreign country where the routine can be a little different. On a trip to New Zealand in 2014, there was a sign instructing us to stop and look straight ahead before going through a scanner. This was so that security camera could take a picture. I did it first to demonstrate what Kate should do. She didn’t understand me, and I could not get back once I had passed the security gate. I had to locate someone from security to let me go back to help her.

Most other problems are rather mundane. For instance, we had lunch at the Nashville airport. Along with a sandwich, I got Kate some fries and two packets of ketchup. We don’t often eat at a fast food place, and the ketchup came in a rigid plastic package with which I wasn’t familiar. It looks very much like the old-fashion plastic container except this one had an instruction to tear off the top portion to squeeze the ketchup out of what looked similar to the top of a ketchup bottle. It works quite well. I showed it to Kate and squeezed some ketchup on a few of her fries. A moment later, she had turned it upside down and was trying to dip her fries on the bottom of the container. She was treating it just like the ones we had been used to. She thought it was a cup of ketchup. I explained how it worked and squeezed a little more on her fries. I tried multiple times, but she never got it or, maybe more precisely, could never remember how to get the ketchup out. Finally, she said, “Don’t worry. I think it’s just easier if you do it.”

It’s about time to board our flight. I don’t think we can get into any trouble at this point. We’ll just sit back and relax for a couple of hours.

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A Little Thing (to me, that is)

Kate was sleeping so well this morning. She didn’t want to get up, yet she did so without complaint. Showers can be confusing and challenging in new places. With that in mind, I turned on the shower for her and heated the water to the temperature I know she likes. She sometimes expresses her emotion with somewhat heavier breathing and an audible, “Oh, oh, oh, . . .” After she had been in the shower a while, that is what I heard. I immediately thought that she might be having a problem turning off the water. I was right. I turned it off. She was so relieved and thanked me. After more than five minutes. Her breathing was still not back to normal. I could still hear her “Oh, oh, ohs.” I have learned from the past to let her gradually come back to normal. She just switched to “OK, OK, OK.” I looked around, and she said, “Just talking to myself.” I said, “Sometimes that helps.” She said, “Right now it does.” And it seems to be working though it hasn’t stopped.

As a caregiver, I am quite aware of the challenges I face. I am less mindful of those Kate faces. Incidents like this remind me. It is remarkable how well she usually gets along.

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The Start of Travel Day 2

Good Morning, from Nashville. As I write, it is almost 8:30. I just got back from breakfast. Kate is still sleeping soundly. It was almost 10:30 when she went to bed last night. That’s later than usual for her. For a long time she has called it a day between 8:00 and 9:00. That has been inching up recently. If you’re a regular reader, you know that her sleeping has been become quite erratic. I hope this is not one of those days she feels like sleeping late. We need to leave the hotel by 10:30 in order to get to the airport, check in, and get lunch before our flight at 1:00.

In a way it’s funny how much of a burden someone with OCD tendencies puts on himself. Kate is quite relaxed about the trip. The only time she is bothered is when I rush her. That can be a real problem. I guess I am a little bit like a tour operator. I know there is a schedule we need to meet. In order to do that there are a whole series of things that have to be done before. I’m always at work trying to make this happen without rushing her. I’ve become more successful over time. It’s hard for me to remember her last panic attack. I don’t like to see these.

Increasingly, Kate has helped me by getting up without much problem even when she hasn’t wanted to. I’m going to count on that. I know it takes her an hour or hour and a half to get ready from the time she gets up. That means I can only let her sleep another thirty minutes or so. If she gets up easily, we’ll have no problem. That’s what I am counting on.

There is another thing that I have to plan around when we are traveling. I like to get up early and have breakfast while Kate is sleeping. I realize, however, that she won’t remember where we are. I don’t want her to be uneasy if she wakes up before I get back. Before we leave home, I create signs for each place we stay. For example, I have an 8 ½ x 11” sign that says, “We are at the Residence Inn, Nashville, TN. Frank is having breakfast in the lobby.” In addition, I make sure that I eat quickly or bring my breakfast back to the room. Fortunately, these are insurance measures. Kate almost never wakes up before I return. When she does, she goes to the bathroom and returns to bed.

I feel good about today’s trip knowing that we have a direct flight. In the past, we have changed planes in Atlanta. With Kate’s arthritic knee giving her trouble, that could be a problem. After losing Kate in the Atlanta airport for thirty minutes last fall, I am more than a bit skittish about going through that again.

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A Good First Day of Travel

Except for a delay because of construction on the way to see Kate’s friend, Ellen, everything went well today. Ellen is in a very nice memory facility, not just a section of a skilled nursing facility. Memory care is all they do. She was about the same as last time. Her mind seems clear. By that, I mean that she seems to understand us without any problem. Her speech is the big problem. I recognize, of course, that she wouldn’t be in a memory care facility if she did not have vascular dementia.

I have some trepidation about taking Kate to a place like this and deliberately avoid doing so except for our visits to Ellen. Most of the residents appear to be much further along than Ellen or Kate, but Kate doesn’t seem to notice at all. She doesn’t say anything nor does she evidence any sign that she is in a memory care facility.

Tonight we had a great dinner at McCormick and Schmick’s. Our server was fantastic. Knoxville is a college town, so we are accustomed to having students as servers. They do a good job, but it is striking when you run into one like we had tonight. She’s a real professional.

I have commented a lot lately about how cheerful and agreeable Kate has been. There is one other characteristic that I should also mention. She is appreciative of my help. That has been true for the entire time I have been caring for her. Lately, however, it seems less perfunctory. It’s not just saying “Thank you” or “You do so much for me.” Tonight, for example, as we were finishing our meal, I commented on how good the meal was. She said, “I don’t want your head to swell, but I always have happy times with you.” Then she said, “I always like being with you. I really mean that.” I told her it meant a lot to me that she said that, and it really did.