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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.

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A Travel Day

Today, Kate and I take the first leg of our trip to Texas. We are driving to Nashville for a visit with Ellen who has now moved into a new assisted living facility that is much closer to her daughter. We’ll have dinner and then spend the night near the airport where we catch a plane to Lubbock tomorrow.
We’ve stopped by Panera for Kate’s muffin. On the way over, I mentioned that today is the twins’ (our grandsons) birthday and that they are now 16. She said, “What twins?” I told her. Then she asked,”Who is their mother?” I said, “Our daughter, Jesse.” The she asked her last name. This kind of exchange has become a regular occurrence, not just once a day but quite a few times. She asks without any particular concern or worry. She does it very naturally. I answer her in like manner.

It was two years ago, that I took over all the packing for our trips. Kate has never said a word that would suggest that she has even noticed.  That is why I started in the first place. We were making a weekend trip. I had put her suitcase on her bed. When it was time to leave, I went to her room and found the suitcase had been closed and was sitting upright on the floor. I picked it up to take to the car. When I did, it was so light that I opened it to look inside. There was nothing in it. I quickly gathered things together and put them in the suitcase. I didn’t say a word to her, and she never said anything to me. Since then, I have done all the packing from the start.

We will be occupied a good bit today, so I probably won’t be back in touch after this. I do intend, however, to make periodic posts while we are gone. We get back one week from today.

Have a great day. That’s what we plan to do.

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Our Trip to Memphis

Kate and I returned from Memphis on Sunday. With each trip we take, I watch to see how she is adapting. I know that at some point, we will have to discontinue travel. I am glad to report that everything went well. Of course, we had the same kind of experiences we have at home, but they did not minimize the pleasure we had. For example, several times she asked, “Where are we?” She also asked me to tell her Jesse’s name as well as those of her two boys. I am optimistic about our upcoming trip to Texas a little over three weeks from now.

Breaking up our trip with an overnight stop in the Nashville area turned out to be a good idea. Kate normally spends so much time working jigsaw puzzles on her iPad that I sometimes worry about her being bored while we are in transit. She finds it difficult to work them in the car because of the frequent bumps in the road. The surprising thing is that she seems to get alone fine without her iPad.

The trip back home was a different story. We encountered bad weather off and on most of the way. The eastbound lane of I-40 was closed about twenty miles east of Nashville. The last mile before we had to exit took us an hour. The detour took another 30-45 minutes, so we were about two hours later getting home than I had expected. We were both glad to get home, but Kate took it all in stride. I am encouraged about additional trips like this one.

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Off on a Short Trip

We left this morning for a visit with our daughter and her family for a few days. I am glad that it comes right now as she is having more difficulty remembering their names. I know it won’t last, but I want her to remember them as long as possible.

I am making this a leisurely trip. We stopped after lunch for a visit with Kate’s good friend, Ellen, in Nashville. Today was her last day at the rehab center. Tomorrow she moves into a new assisted living facility. It was a very good visit. She has improved physically since our last visit a month ago. Her speech is still a problem. I don’t know how much of that is a direct result of her stroke and how much it is now the vascular dementia that is creating the problem. At any rate, it is quite difficult to understand her. Given our long-standing relationship, we will continue to visit her on a monthly basis for as long as we are able to do so. Ellen’s condition and Kate’s are the determining factors in that.

After leaving Ellen, we drove to a B&B outside of town where we are spending the night. We are the only guests tonight and have enjoyed our time with the inn keepers. We asked them to recommend a place for dinner and ending up asking them to join us.

The travel itself went well. I am glad that I have broken up the trip. Since we don’t talk much while we are driving and Kate doesn’t like to work on her iPad because of the occasional bumps in the road, I worry that she must be very bored. She doesn’t say or do anything that suggests that. I just know that under the same conditions, I would be bored.

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A Very Good Day

Kate got up somewhat later yesterday morning, about 8:45. We were at Panera just before 10:00. She worked quietly on her iPad until a little before 11:00 when she was ready to go home. This is a time when she usually would work outside until lunch, but she came inside and lay down in bed. I think she was still a little tired from our trip last weekend. In addition, she had gotten to bed a little later the night before. The weather has improved but is still somewhat cool. That may have also played a part.

I wondered how long she might rest. I didn’t want her to take too long because we had planned a trip to Nashville for a late afternoon visit with Ann and Jeff Davis. Fortunately, she got up at 11:30 and was ready to go. Originally, we had also planned to see Ellen, but her daughter sent me a text the night before saying that she was sick. We hadn’t seen the Davises since before Christmas; so I decided to go ahead.

We both enjoyed visiting with Ann and Jeff. Our relationship goes back to Madison when Jeff and I were both grad students in sociology. Later, we both joined the faculty at UT. Both couples had daughters the same age, and we used to get together very frequently until they moved away. We have continued to enjoy periodic visits with them either in Nashville or Knoxville. During the past few years, I have tried to be more deliberate in arranging visits because it means a lot to Kate and to me. I realize that it won’t be much longer until our visits are much different than in the past. Of course, they aren’t the same now. Yesterday, Kate said very little, but she was comfortable. It appeared that she was getting along well. On the way home, she confirmed that it had been a nice visit. I agreed. It had been another nice day.

Kate’s recent decline in memory has increased my motivation to arrange other visits with the Robinsons and the Greeleys. Both couples live in Nashville as well. As I look to the future, I am unable to predict just how Kate will change and how that will impact our activities. I do remember that my dad took my mom with him wherever he went except his Kiwanis meetings up until her last week or so when she was bed ridden. In his case, they were not traveling out of town. My plan for us is to continue taking it one day at a time. That has worked for us so far. I hope it will serve us well in the months ahead.

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Post-Trip Symptoms

Kate was very tired when she returned home on Monday. She was in bed with eyes closed before 7:30. Yesterday she was up at 7:30 and ready for Panera shortly after 8:30. She wanted to come back home after an hour and got back in the bed where she remained another hour before wanting to go back to Panera. During the balance of the day she got along normally. She was in bed about her usual time last night, around 8:30. This morning she slept until after 10:00. We were so late getting to Panera that I ordered lunch along with Kate’s usual muffin.

This was the day for the sitter, so I made sure that we were back home before her arrival just before 1:00. I went to the Y and then made a stop by the grocery before meeting Mark Harrington for coffee. We talked about my blog that I intend to launch this Sunday, the seventh anniversary of Kate’s diagnosis.

When I got home and the sitter had left, Kate was ready to leave the house. She picked up her iPad and got her coat. She didn’t say anything. I know the signs. They signal she wants/expects us to leave for someplace, usually Panera. This has become something of a habit on the days when the sitter comes. I am sure that is because a good bit of her time with the sitter is spent at the house, especially right now when the weather is quite cold. My presence is her sign that she can go back to Panera. Often it is only 30-45 minutes before we go to dinner. That was the case today.

Until this point, I felt everything was going well. At dinner, however, she asked me where we were. I thought she meant the restaurant and told her. She gave me a look that told me that wasn’t it. I said, “We’re in Knoxville.” To the best of my knowledge she has only asked that question when we were traveling in another city; so I was surprised. During the meal, she asked me the name of the restaurant and the owners of the restaurant. She never remembers these, so I wasn’t surprised at that. As we were finishing our meal, she asked me the way we would walk out of the restaurant. I pointed to the front door. In another minute, she asked me where we were. Once again, I told her we were in Knoxville. After paying the check, she again asked me where we would leave the restaurant. I pointed to the front door and got up. I said, “Follow me. I’ll show you.”

When we got home, she got ready for bed, put up her iPad and got under the covers about 7:30. I am wondering if these things are in any way caused by our travel over the weekend, or if this is just another sign of her decline that would have occurred anyway. Regardless of the specific cause, for me it is a sign of change and in a direction that I don’t like. It tells me that 2018 is going to be a different kind of year.

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Trip Report

We returned home just before 7:00 p.m. tonight after spending three nights in Fort Worth. As I have suggested in other posts while we were gone, I am very glad we made the trip. Kate enjoyed seeing her extended family. She didn’t, and still doesn’t, remember most of the names, but she has a strong emotional tie to her family. In recent years, as her short-term memory has faded away, much of her conversation with others has drifted toward family. Most of that has been about her mother but has included her father and her extended family. I didn’t imagine her having another opportunity to share special moments with them. While it is unfortunate that this one was prompted by her cousin Chester’s death, it is in times of loss that family ties seem especially important. In this respect, the weekend could not have been better.

Travel is, however, demanding for Kate, and I must admit something of a challenge for me as well. I envision that it is a combination of these things that will ultimately cause us to curtail it. For Kate, there is a certain amount of pressure or stress in being in strange places and with large numbers of people she doesn’t remember. She made it through Saturday beautifully. At the visitation on Saturday evening, one of her extended family members and I noticed her in conversation with another member of the family. She appeared to be an equal participant in the conversation. I suspect she didn’t know who she was talking with, but I am sure he conveyed either directly or indirectly that he is part of the family. She obviously was quite comfortable with him. This is also true for her with most people, especially if their interaction is brief.

Nonetheless, it requires a lot of effort to “perform” in this way. She has been very tired the past two days. She went to bed around 8:30 Saturday night. I had to wake her up at 10:00 Sunday morning so that we could meet several family members for a lunch to celebrate Kate’s 77th birthday. She didn’t want to get up, but she did. Slowly, but she got up, and we arrived in ample time for her celebration.

I had originally planned to stay in Fort Worth last night. Knowing that it is sometimes difficult for her to get going in the morning, I changed my mind and made reservations in a hotel near the airport in Dallas. That way there would be less rushing to make our flight at 12:15. That turned out to be a wise decision. She was asleep by 8:00 last night, and she slept until 9:00 when I woke her up this morning. Although she would have preferred to stay in bed, she was very cooperative in getting up, and we were able to leave for the airport at 10:00. That gave us time to get something to eat before our flight.

Everything else went smoothly on the way home. We arrived a few minutes early in Atlanta, and our flight from Atlanta to Knoxville was right on time. We stopped by Chalupas to get a bite to eat before coming home. It was almost 7:00 p.m. when we got to the house. I went back to our bedroom around 7:15. Kate was already in bed. She was wearing a robe that was inside-out as happens a good bit. Using hand signals, she asked me to get her a night gown. I brought one to her. She stood up to take off the robe and put the gown on. I started to unpack some things and noticed that she was putting on the robe again, the right way, and had not put on her gown. I mentioned it, and she put the gown on.

That kind of confusion is common, but I believe travel adds an extra measure of confusion because of the unfamiliar surroundings, especially when we are moving from one unfamiliar place to another as people do when they travel. She often asks where we are when we travel. That was different this time. I only recall two times that she asked, “Where are we?” One of those was at dinner at the hotel in Dallas last night. The other was when we got off the plane in Knoxville and were walking to baggage claim. As many times as we have walked through that airport, she didn’t recognize it.

It is impossible for me to understand how stressful travel is for her because she never talks about it. I don’t know how much of this relates to her general preference not to dwell on her Alzheimer’s or if she really doesn’t sense the stress. I believe it is the latter. I think she forgets she has Alzheimer’s except when it comes up at one of her doctor’s appointments. That makes me think that at the very least she doesn’t connect her diagnosis with her experiences.

For me, the most challenging aspect of travel involves airports. That includes going through security. I find myself focusing on getting all the things that need to go through the scanner unloaded and then putting those things back on or in my clothes on the other side. Kate is often confused by the instructions given by the personnel; so I have to watch for that. It is hard enough for me to remember to take everything of mine that has been scanned. Now I have to make sure I have her things as well.

I wish the security check were the most difficult part of travel for me. It is not. It is changing planes in Atlanta that is the challenge. I fear losing her as I did the other day. I can’t tell you how stressful that was. There are so many people and places that it is very hard to find someone.

Another concern is use of the restroom. It takes her a long time in the bathrooms at home, but in an airport there is a substantial challenge. I have already identified family restrooms in the Atlanta airport and may soon try those.

One additional issue with travel is getting from one place to another in a timely fashion. She has only one speed, and it is very slow. At home, I can control much of this because I try to avoid as many specific time commitments as I can. That works pretty well. When we are traveling, you have flight schedules that are not flexible. In addition, when other people are involved, it often involves a set time to meet. This always means planning in advance to make sure we are on time or reasonably close.

When you add up all these things, and I am not beginning to remember the many little things that come up when traveling, I can see why some people stop traveling long before we have. Even with that, I am not ready to call it quits. I still want to make at least one more trip to Texas. If that one is half as successful as the one we just took, I might think about another. My head tells me that it is unlikely that we will do any more airline travel after the next six months, but my head has been wrong before. I hope it will be once again.

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Kate’s 77th Birthday

Yesterday was Kate’s birthday, and I hadn’t envisioned much of a celebration since we were in Fort Worth for the memorial service and related events surrounding the passing of her cousin, Chester. It turned out, however, that we didn’t have anything scheduled until the family gathered together at 1:30 before the service at 2:00. Kate’s cousin Sharon asked if she could take Kate to lunch as a birthday treat. Together we turned that into a larger gathering to include Kate’s brother, Ken, and his wife, Virginia, as well as our son Kevin’s family. It was a special treat to have another cousin of Kate’s who is from Massachusetts. She hasn’t attended as many family gatherings over the years, and it was nice to visit with her.

Sharon made arrangements for lunch at a restaurant that was close to the church. The lunch turned out to be a perfect way to recognize Kate who hadn’t remembered it was her birthday. Ken and Virginia got us off to a good start by ordering Saganaki, a Greek flaming appetizer. That started the celebration with a little flare, or should I say flame. All of us got out our cameras/phones to capture the flames. That was followed by lots of visiting and good food. It was special for her to share those moments with people who are so special to her. When we got in the car to drive to the church, I said, “Happy Birthday.” Kate said, “Oh, is it my birthday? I didn’t know.”

We met in the Franklin Center of the Methodist church where Kate’s family had been members for so long. Her grandparents’ home had stood on a portion of the property now occupied by the church. The Center has a display of some of the things from the home. Kate loved looking at these things as if for the first time. In her mind it was exactly that.

It was a beautiful service and especially moving for Kate. Family has always been important to her, and Chester was significant for a number of reasons. He had remained in Fort Worth as the rest of the family had made their way to other places. Family was very important to him. We saw him as someone who kept the family memories alive in the place where Kate’s grandparents had made their mark in the early part of the twentieth century. Chester had also been very active in the community in a variety of ways. The church was packed to honor him.

Following the service we spent a little time with Ken and Virginia. Then they went back to their home in San Angelo. We checked into a hotel near the airport for our flight out shortly after noon today. Kate is sleeping soundly. I will probably wake her in another hour or so. I would like to leave for the airport around 10:00. As we leave today, I am feeling good that Kate has had this time with the larger family. That is not something I had thought would happen. She won’t remember it, but each moment meant a lot to her.