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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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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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More Surprises

The life of a caregiver and the person with dementia is full of surprises. I tend to think all of the surprises are ones that take the caregiver off guard. I know that can’t be the case. With the increasing loss of memory, the life of someone with dementia must be filled with surprises all day long. I can’t speak to those, but I can tell you what surprised me this morning.

I returned from my walk just before 8:00. I noticed quite a few leaves from a neighbor’s loquat tree on our driveway. That looked just like something Kate would have done. She has always liked to pull leaves from her shrubs and those of our neighbors when they hang over into our yard. I was surprised because she has been sleeping so late recently. When I got inside, I met her coming into the family room ready for Panera. She was dressed in a pair of pants from my gym suit. They were a little long for her, so she was walking on them. She was wearing an old top that I had put with a few other old clothes in the back of my closet. When I got back to the closet to change, I noticed that some of my things appeared to have been rifled the way a thief might have done. She had gone through my underwear drawer and a shelf at the back of the closet that had a stack of my tee shirts. They were simply thrown to the floor of the closet. When I went back to the family room, I found that she had moved two chairs from their usual spots and placed them side by side in a different place than where they had been. Later today when we got home from lunch, I decided to take in some of the things she put in the back seat of the car yesterday. They included a heavy fleece robe, a pair of shoes, one of her tops, and a pair of my socks.

Because she was up early, we had plenty of time to get to church, something that doesn’t happen frequently these days. We got to Panera by 8:30 and came home to change clothes for church around 9:30. It is difficult for her to participate in the service because she doesn’t understand a lot of things. It is also hard for her to read. She can’t read the bulletin or the lyrics of the hymns. There are some things that are still in the recesses of her memory. I watched carefully this morning. She remembered the Apostles Creed, the Lord’s Prayer, and some of the lyrics for one of the hymns.

I should also mention that on the way to church she talked about her time as the volunteer church librarian. She served in that capacity for 19 years. She is proud of the contribution she made and was able to point out some of the ways she helped members locate the materials they needed. She has a reason to be proud. She worked a lot for a volunteer. As she said to me this morning, it was something she enjoyed doing. She was a natural for the position. She and her family were very active in their church. She was very familiar with church life. She has a master’s in library science and 13 years experience as a librarian in the public school system. She also has the right personality for a position like that. She has excellent social skills and an eagerness to serve those who enter the library. I remember many times when we were traveling, and she would make long distance calls to various members following up on their requests for information. Frequently, she had picked up those requests on her voice mail after we were out of town. Despite the unusual behavior this morning, I am pleased that she is happy and remembering these things from the past.

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A Nice Ending to Another Good Day

Although we got a late start and Kate slept later than I wanted, we had a nice day that ended in a typically good evening. I do have to report, however, that Kate had a good bit of confusion in the evening. Several times at dinner, she asked,”Exactly where are we?” The first time I said Knoxville. Five or ten minutes later, she asked the same question again. This time I asked if she meant the city. She nodded. Again, I told her Knoxville. She asked at least once again while we were eating and then again as we walked out of the restaurant.
In addition, we saw Dan Carlisle, a retired music professor from UT who was our son’s piano teacher for two years while he was in high school. He is a regular at this restaurant. He is almost always there when we are. I pointed him out to Kate soon after he arrived. A short time later, she asked his name. That happened again once or twice before he had finished his meal. Until last night, she has been able to recall his name. She often mentions he is there before I’ve seen him.

Once we were home, Kate wanted to go in the living room where we sat for about thirty minutes. We hardly ever use this room any more. She was very cheerful and talkative, something I love to see. She talked about what a nice room it is. I mentioned the furniture and other items we had gotten from her parents’ home. She liked that. She took special pleasure in the Royal Doulton China figures that her father had given to her mother. After a while, she asked, “Exactly where are we?” I told her we were in Knoxville where we live. She said, “So this is our house.” It was a statement that sounded more like a question, and I said yes.

As we were chatting, Kevin called. We talked with him a short time and made plans for our upcoming visit to Lubbock next Saturday. We’re arriving at a good time. Brian will return home on Tuesday after finishing his freshman year at TCU. It will be good to hear what he’s been up to.

After Kevin’s call, it was time for bed. I headed to our bedroom. When she didn’t come right away, I walked to her room to see where she was. She was standing in the hallway near the door to the guest room and her room. She wanted to know where she should go and pointed to the guest room. I told her I thought our bedroom would be a good place. I asked if she would like me to get her night clothes. She said yes. I brought them to her. She had no problems like the previous night.

I went in the bathroom to brush my teeth. When I came out, I heard her call my name. She was in the hallway where I had seen her a few minutes earlier. The light was out, so she was completely in the dark. I turned on the light. She said, “Where do you want me?” and pointed to the guest room. Once again, I told her our bedroom would be best. She seemed relieved to see me. It appeared that she had lost me. It was dark, and she didn’t know where to go. This is only the second time I have observed any indication that she wasn’t sure about her way around the house. The other time was a few weeks ago when we returned from an evening at Casa Bella. When we got in the house, she said, “I’ll follow you.”

You may think it strange that I would say we’ve had a nice day after telling you about Kate’s confusion. I do find that all the new and increasing signs of her decline make me sad. On the other hand, my mood is also affected by her mood. She was in a good mood, and I find it especially uplifting to see her enthusiasm about our living room and the things we have of her parents. Life continues to change, but moments like this sustain us.