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.

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.

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.

A Humorous Moment, But a Good Example of Everyday Life

We arrived at Panera about fifteen minutes ago. I forgot to charge Kate’s iPad last night, so I brought my old one for her. I turned it on and set it up for her puzzles while she got herself a drink. I placed my own iPad, the larger 12.9” model, opposite her chair. Then I went to the counter to order her muffin and our drinks. When I returned, she was trying to figure out to get her puzzles on my iPad. She couldn’t do it because she didn’t have my password. It did not surprise me that

What I think is interesting about this is that the iPad I put right in front of her was all ready to go. I thought I was making this easy for her. Instead, she chose my iPad across the table. This is just one of the many mysteries surrounding the way the brain works for someone with dementia. It is also a good example of the many daily experiences in which a caregiver attempts to prevent a problem or make things easier for her loved one only to discover it didn’t work the way you intended.

She says she likes to be with me. That’s good; I Iike to be with her.

About thirty minutes ago, I got up from my chair in our bedroom where Kate and I were relaxing. As I started for the kitchen, she motioned me to come over to her. When I reached her, she said, “You know that I always prefer to be with you.” I instantly had a tinge of guilt for leaving her with the sitter this afternoon. I told her I always like to be with her too.” Then I said, “Sometimes I need to go to my Rotary club and to the Y.” She said, “I know you do and you should go. I just want you to know I like being with you.” I told her I appreciated that and reminded her that she had always been that way during our entire marriage. I did a lot of traveling. I never sensed that it bothered her at all. She always let me do what I needed to do in connection with my work responsibilities without making me feel guilty. It’s nice to see that is another way in which she hasn’t changed.

Kate, Always the English Teacher

At the time of Kate’s diagnosis, we were told that her greatest strengths were likely to stick with her the longest while her weaknesses would deteriorate more quickly. That has proven to be true for her. She has always been geographically challenged. Getting lost when driving to places that should have been familiar was an early sign of a problem. Among her greatest strengths is an ability to handle herself in a variety of social situations with different types of people. I have mentioned many times how well she gets along when we are around friends and strangers. Even when she can’t remember people, she is able to engage in brief conversations as if she did. That has enabled us to remain socially active longer than I expected.

There is another strength that I’ve never mentioned. It is also one that hasn’t disappeared. She got her bachelor’s and master’s degrees in English and taught English for three years before taking a break when our children were born. When they were school age she completed a master’s in library science. Throughout her career, she has always thought of herself as an English teacher. Our grandchildren could testify to that. They have been corrected by “Nan” concerning their use of the English language many times.

She doesn’t limit her corrections to the grandchildren. I am often called to task as well. Even now, she frequently corrects me about one thing or another. If she were reading my writing I know she would have many edits. These days her corrections usually involve my use of specific words that she believes do not capture precisely what I intended or should have said. For example, this morning after she remembered someone’s name, I said, “You’re right.” She said, “I am right sometimes.” Thinking I was supporting her, I said, “You are frequently right.” Then she responded. “It would have been better if you had said, “usually.” I said, “You’re right again.”

I make a point of this because it’s a good illustration of how much her brain is still working and working correctly. Once in a while she says something that surprises both of us. When that happens, she sometimes says, “Don’t count me out yet.” The most appropriate response is, “I won’t.” I know, however, there are many times when I don’t think she will remember something or be able to perform some task. The easy thing is to believe is that she can’t remember anything, do anything, or understand anything. It’s much harder to recognize that even this long after her diagnosis (7 years this past January), she still possesses a good bit of knowledge and skill. I think I’m very good when it comes to recognizing this intellectually. I need to work harder to put that knowledge into action as I care for her during this most challenging time of her life.

Our Lunch with Longtime Friends

We had lunch with Dorothy and Mitch Hinely at Casa Bella today. Our friendship with Dorothy goes back to the early 1970s when we were members of a local Unitarian Fellowship. Our daughters met at that time and are still best friends. She and Mitch married several years ago and quickly became a valued addition to this longstanding relationship.

Prior to going, I told Kate we would be joining them for lunch. She couldn’t remember them. I told her their names and something about them. That didn’t help. Even when I mentioned the friendship of our daughters, she didn’t seem to know who I was talking about. That changed the moment she saw them. In fact, Dorothy stooped down to Kate’s chair, and Kate said enthusiasm, “No, I’ve got to stand up and give you a hug.” This reminds me of my earlier post that asked, “What does it mean to know someone?” Kate clearly knew her in some way even if recalling her name and other things about our friendship were drifting away.

The conversation flowed easily. I am sure we could have taken much longer to catch up on our respective lives and to reminisce together, but it was time to go. I worried about Kate since Dorothy and I tended to dominate the conversation with a little help from Mitch. It’s hard for Kate to keep up, and I am sure she couldn’t follow everything we talked about. The moment we got in the car she told me how much she had enjoyed the lunch and how smoothly the conversation had gone. I was happy about that. It shows that she felt a part of the group even though her speaking time was decidedly less than that of the rest of us.

I took special note of the fact that she then asked me the name of the restaurant where we had eaten. This surprised me since we have been coming to Casa Bella since 1971. When they added their musical evenings, we started coming three or four times a month. We were there just last Thursday evening and will be there this Thursday. It is a place we have eaten to celebrate good times and to console ourselves when things were not so good. I remember a couple of years ago when she forgot our favorite dessert. Now the restaurant’s name is slipping away as well.

Our Afternoon After the Sitter Left

At Barnes & Noble this afternoon, Kate looked across the table and asked, “Are we in Fort Worth?” I said, “No, we’re in Knoxville, but we will be in Lubbock on Saturday.” She said, “Who lives there?” I told her our son. She said, “And what’s his name.” I said, “Kevin. He is married to Rachel and they have three children.” She said, “And they are?” I gave her their names. I joked with her and said, “Was I right?” With a very slight chuckle, she said, “I just hope I can remember them.” This recognition of her memory problems is very different from the early years. For a long time, she was really bothered by not remembering things. Not now. That is why I think she no longer connects her problems with her Alzheimer’s.

We left there for our Monday night Mexican meal at Chalupas. As we drove away from Barnes & Noble, Kate said, “ “I’ll stay anyplace as long as I can just relax.” I guessed that she must be thinking that we were out of town. I said, “You like to relax in the evening, don’t you.” A few minutes later, she said, “So, are we really in Fort Worth?” Once again, I told her Knoxville. About midway through our meal, she asked, “Exactly, where are we right now? I told her again. Within moments, she asked again. She doesn’t act disturbed, but it seems clear that she wants to remember and does the only thing she knows how. She keeps asking.

When we got home, we settled in the family room where she looked through the photo album her brother, Ken, had made for her. She spent about 20 minutes leafing through the pages and commenting about the photos and the people in them. Not long after that, I took a phone call from Dorothy Hinely, a longtime friend who now lives in Virginia. She and her husband, Mike, are in town and wanted to have lunch tomorrow. We made arrangements to meet at Casa Bella at noon.

When I came back to the family room, I told Kate about our lunch plans for tomorrow. She couldn’t place the Hinelys and asked me to tell her the names again two or three times. Then she looked at me and said, “You might have to help me with them in the morning.” I told her I would be happy to. I may be wrong, but the look on her face seemed to express the first sign of discouragement over her memory issue in a long time. She said, “Thank you. I really couldn’t live without you. I mean that.”

Follow-up on Previous Post on Sleep

Kate got up on her own around 11:30 this morning. I told her I would be going to Rotary. She gave me a bit of a frown. Then I told her I would not leave her along, that Anita would be here. She said, “Good.” That was reassuring. Then she went to take her shower and get ready for the day.

When Anita arrived, Kate was still getting ready. She went back to check on Kate, and I left for my meeting. When I returned, they were both in the guest room. Kate was resting and Anita reading. Everything appeared to have gone well.

More on Sleep

Yesterday I was very surprised that Kate waked up before I returned from my morning walk about 7:45. That would have been highly unusual even before she started sleeping later over the past couple of weeks. I suspect that is because she slept so much the previous day. Today, she is back to what is becoming a more normal pattern. She was still asleep at 10:00, so I woke her. I reminded her that I would be going to my Rotary meeting and that I like to take her to lunch before the sitter comes. I asked if she would rather sleep and have Anita take her to lunch. She said she would. I told her that would be fine and that she could sleep as long as she wants.

Telling her “that would be fine” is one of those little white lies that I often use with her. I really would prefer that she get up earlier so that we could go to Panera together. We usually go early enough for her to get a muffin and the get her lunch before I leave for Rotary. Although our morning visits to Panera were originally motivated by Kate’s desire, I have found that it has been beneficial to me as well. As I have said many times, it is a social occasion. As she begins to sleep later, this daily custom may be a thing of the past. Of course, it will be gradual. It won’t end right away, but I’m afraid what is happening now may be a hint of the future.