Follow Up to My Previous Post about Explanations

Yesterday I commented on Kate’s putting an 8 x 10 frame, two tops, and underwear in the back seat of our car yesterday. What I didn’t say is that I had washed clothes earlier in the day. I had taken her underwear and placed them on a towel in the kitchen to dry. In addition, I put several of her tops in the dryer. After they were dry, I had put four of them over chairs in our family room and brushed out the wrinkles. I left these things with the intent of putting them up later in the day. Near the time we were to go to dinner, I noticed that the underwear and two of the tops were gone. Two other tops had been thrown over another chair in the family room. The two tops that were missing were the ones Kate took to the car. I assume that the one pair of underwear was part of those I had put out to dry.

This morning as we were getting ready for our trip to Panera I got an umbrella from the trunk of the car. When I did, I noticed a pile of Kate’s underwear piled beside the garbage bin. It was then that I realized that instead of taking the underwear to her room and putting them away, she must have carried all of them out to the car took out one pair to put in the car and threw the others on the floor of the garage. Just one more thing I can’t explain except to say that it is Alzheimer’s at work. This is a devastating disease. It doesn’t play by our rules.

You just can’t explain everything.

I have sometimes said that the job of an Alzheimer’s caregiver involves two things. One is to prevent problems. The other is to solve them. To do this well calls for a good understanding of the person for whom you care. Ordinary life has led us to search for explanations for just about everything. Some things are easy. For example, if you know that your loved one is cold, you can turn up the heat or add blankets or warm clothing. Most of the time caregivers are able to find the right explanation. Other times, we don’t. That makes me think of Kate’s salivation problem. For about a year and a half, she has almost given up swallowing saliva. Instead, she uses napkins or a variety of paper products to wipe the saliva from her lips. When nothing is available she simply wipes the saliva with her hands or her clothing. I have now consulted three different physicians who have offered several possible ways to address the problem without success. They don’t know why this is happening.

The salivation issue is an unusual one, but there are numerous other things that dementia patients do that are not easily explained. For example, why would Kate hide her iPad in the back of the coat closet in our laundry room? Why would she put her underwear on a shelf in her closet where she keeps her shoes? Why would she put her pill box on the next-to-the-top shelf in our bathroom where it is a challenge to reach? The fortunate thing is that these things are harmless. They just cause a problem when you can’t find what you are looking for.

There are other things that do no harm but are inappropriate in one way or another. Some time ago, perhaps a couple of years, Kate started putting or two or occasionally three tops on when one would do. That in itself is no problem. Layering is often recommended to keep warm in cold weather. Layering could also be done as a fashion statement. Sometimes Kate’s choices could pass for that. Typically, however, they involve multiple tops that don’t match or complement one another in color or style. I never recall her doing this before Alzheimer’s.

This afternoon she did something else for which I have no explanation. Kevin had called. After a few minutes, Kate hung up her phone. It wasn’t long before she came into the kitchen where I was. She was carrying two different tops and an 8 x 10 picture frame containing pictures of our twin grandchildren. She walked outside. When we went to dinner tonight, I noticed that she had put them in the back seat of the car. For the first time, I noticed that she had also put some underwear with them.

For quite a few years, she has brought home left over food items from our restaurant meals. She brought them home in a paper napkin. Originally, these went into the compost. Over time she has forgotten about the compost. Now she frequently just brings our used napkins home. Before we get home, she tears the napkins in smaller pieces. When she gets out of the car, she throws the napkins into a basket on her side of the car. Over time the basket is overflowing with napkins. Then our housekeeper empties them into the garbage, and the process starts all over again. Oh, how I would like to know what is going on in her brain when these things occur.

Working Hard to Remember

It would be easy to imagine that a person who is as far along in her journey as Kate would simply let go and drift away into her own world. That is what I imagined my mother did. What I realize now is that a spouse or other caregiver who lives with the person with dementia sees far more than anyone outside the home. As it has become more difficult (impossible) for Kate to remember things, she seems to work harder than she did earlier. If not, harder, she is more open with me about her efforts to recall the names of people and places.

It is common for her to rehearse names of family and friends before each visit. A typical situation would involve my telling her about our upcoming visit during lunch or dinner. She will ask me to tell her the names of the people we will see. That usually means one or two names, sometimes as many as four or five when we are visiting our childrens’ families. The pattern is always the same. She asks for a name. I tell her. She repeats it. Then she asks for the name again. This sequence repeats itself several times. Then we move on until we are in the car or plane to see someone. Sometimes she is able recall the first name but can’t get the last.

There are other times that she is trying to recall names when the two of us are not “in rehearsal.” For example, as we are driving someplace, she will just speak someone’s name. I may be reading too much into these occasions, but it sounds like she is pleased with herself when this happens.

There are also times when I initiate the conversation with, “Here’s a test for you. What is the name of your only granddaughter?” Yesterday on the way to lunch, she surprised me by saying, “I’m going to test you. What is my mother’s first name?” When I told her, she said, “Right” and asked, “What is her middle name?” Then she asked me to tell her her father’s name. I can’t know for sure, but I believe she was not asking to test me at all. Indirectly, she was asking me to remind her of her parents’ names. In a sense, this is a way of covering for not being able to remember. On the other hand, it is also possible that she might really have been playing a game with me. If that is so, I would have another interpretation. I would think she has passed into another stage at which she is not able to grasp my own capability to remember. While that may be, I haven’t noticed any other signs that would suggest this is so.

Last night at dinner, my dad’s former writing teacher was sitting in the booth behind us. She was with another woman who had been in the writing class. The third woman had been in his Sunday school class. We chatted a few minutes with them before taking our seats. Immediately, she whispered, “Who is she?” I knew she meant the writing teacher. I told her. We went through this several times. Then she did the same thing with the restaurant. She never got them, but she was trying so hard.

This experience also makes me think about her decision not to tell others, even our children, about her diagnosis. She has never wanted to be treated like someone with Alzheimer’s. She wanted, and still wants, to be treated just like anyone else. It’s just so hard when you can’t remember who people are or even where you are.

Very Tired Today

Kate was in bed by 7:30 last night and was up about 8:45 this morning. She was in a very pleasant mood when we made our morning trip to Panera. She did something unusual. She brought three books with her. That is interesting because she doesn’t read. It also surprised me that she was taking them to Panera where she spends her time working jigsaw puzzles on her iPad. She only took one of them inside, It was a book about the history of our church. She did actually spend a short time looking through it. After an hour there, she said she was ready to go home. As soon as she came inside, she went directly to our bedroom where she took off her coat and got into bed. That is the second time she has done that since we returned from Texas Monday night. While this was a very common occurrence a few years back, this is most unusual nowadays. In fact, occasionally when I have thought she was tired and asked if she would like to lie down, she has said she feared sleeping too long.

She is clearly acting differently. She is having more trouble with names and shows some confusion. Yesterday she received a touching letter from her brother, Ken, along with a gift of a spinner. He noted that one of his sons gave him one for his last birthday. He keeps it by the coffee pot and spins it each time he makes coffee. He also indicated that it is a time of reflection in which he thinks about “family, friends, and the ‘circles of life’ that have brought me to my current understanding of my life.” He says it is a time for counting blessings and giving thanks. Then he suggested to Kate that “every time you ‘take a spin,’ think of the people you love. And know that I will be thinking of you and Richard every time I spin.”

Before leaving for Panera, I read the letter to Kate and showed her the spinner. We were both moved by his loving words. For me, it was especially touching as I realize just how far Kate is into her journey with Alzheimer’s and that Ken is at an earlier stage of this journey. Life and the people we love are more precious to all of us who travel this path, and we have lots of sentimental moments.

When I finished reading the letter to Kate, she said, “Now who is this from?” This was a painful moment that reminds me of the reality of this disease and where we are. Life is not the way it used to be, and the toughest part remains ahead.

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.

Something’s on her mind.

I am sitting across the table from Kate at Panera. She is working a jigsaw puzzle. No surprises so far. A minute ago she said, “You know, you are the one person I trust.” I told her I wanted her to trust me always. She closed her eyes a minute. I asked if she were tired. She said she was, but she didn’t want to go home. Then she said, “I know your name.” There was a very slight pause, and she said, “Richard Creighton.” She hasn’t said anything since. She looks very tired. I wonder what she is thinking? What is on her mind? I would really like to know.

It is now a few minutes later. Kate said, “I’ll get out of it.” I stopped and looked at her and said, “Is there something I could help you with?” She said no.  Then she said, “i’m just kinda out of it.” In another few minutes, she said, “Lawrence Willcox.” He was a friend of ours at TCU. She didn’t say anything about him, just his name. I asked how she happened to think of him. She said, “I don’t know. It just came to me.” She seems to be in a very reflective mood.

More Confusion

As we were driving away from Chapultes after dinner tonight, Kate picked up a pair of sunglasses that had been in the side pocket of her door and asked if we were going to “take the same one tomorrow.” I didn’t know what she was talking about and asked if she meant the sunglasses. She said, “No, the car.” I didn’t press the issue. It sounded like she thought we were in a rental car instead of our own car.

Apart from this bit of confusion, it had been a good day. She was up early, and we were at Panera before 9:00. Today was my Rotary day; so the sitter was here at noon. For at least the third time in a row, I did not tell Kate that the sitter would be coming. She was outside working in the shrubs along the driveway when the sitter, Ella, arrived. She greeted Kate while I was still inside. She continued working on the shrubs while I gave some instructions to Ella. When I left, the two of them were together chatting as Kate did her her yard work. When I returned, I learned that they had been to Panera for a while. Kate had changed clothes; so I am sure she had come in from outside and taken a shower before they left. It’s been a good day.

Still Thinking About a Move

It is clear that Kate has not forgotten her impression that we are moving to Texas. This past Friday I went to the counter to pay for our pizza. When I returned to the table, she was talking to a friend who had taken a seat beside her. I sat down, and the friend said, “I hear you are moving to Texas.” I simply said, “We’re talking about it.”

Before going to dinner last night, Kate walked into our bedroom with two framed pictures and put them on a bench. One was a picture of her father. I asked why she was bringing it into the bedroom. She said, “I want to take it with us.”

There are a couple of other things she has done that are strange but don’t relate to moving. One of those occurred a few days ago. She found two old travel books that are kept on a shelf in the closet of a guest room and put them on the dryer in our laundry room. Then last night after the incident with the picture frames, she walked back into the bedroom with her hands filled with her underwear and a pair of socks. I said something like, “What have you got there?’ She said, “Underwear.” Then I asked if she was looking for a place to put them. She nodded. Then I told her I thought the top drawer of the dresser in her room would be a good place. (That is where she had gotten them in the first place.) She turned around to go back to her room. This morning I too several pairs of socks from yesterday’s wash to her room. When I opened the drawer, it was completely empty of all the socks that she keeps there. Then I looked on a nearby chair. She had thrown them on the seat of the chair along with all of the underwear she had been carrying last night. Then I put everything in the appropriate drawers.

Something New. Paranoia?

I brought Kate over the Panera for lunch before the sitter comes and I go to Rotary. I left her at a table while I ordered. When I came back to the table, she asked if I had noticed the man sitting at the table across from us. I told her that I had not paid particular attention. She said, “When we came in, he looked at us. Then he left.” Unsure of what she was trying to say, I asked, “Do you think he realized that is the table where we usually sit and got up so that we could have it?” She gave me a funny look. Then with a little hesitation, she said, “I may be wrong, but he may gotten up to do something like mess up our yard or something.”

I recall that being paranoid is a common characteristic of someone with dementia, but up until now, I don’t recall any sign of that from Kate. I wonder if this is a sign of things to come.

Adjusting to a New Place

Yesterday Kate and I drove to Memphis to see our grandson, Randy, who is in his high school’s band. They were playing at halftime of their homecoming football game. Last spring, we came here to see our other grandson, Ron, in a junior high production of the musical Shrek. Since then Randy has been eager for us to attend one of his band performances.

The trip yesterday was a smooth one. I did notice for the first time that Kate became restless on the drive. We broke up the trip with a couple of stops. Otherwise, it was an easy trip.

We went to the stadium around 6:00 so that we could watch the band march into the stadium which is the equivalent of the team’s entrance to the field for parents of the football team. It was fun to see Randy march in with his band uniform. He has not hit his growth spurt and is at least a foot shorter than the boy in front of him. He had a big smile on his face when he saw us. The highlight, of course, was the halftime show itself. This year the band has worked on a program featuring the music of Gershwin. We enjoyed the show. As frequently happens, we were impressed with the quality of the performance of these high school students.

Not having a child on the football team, we left after halftime. We went to a neighborhood Italian restaurant for a later dinner. It was after 10:30 when we got back to Jesse’s and after 11:00 before getting into bed. Because this is a good bit later than we usual go to bed, we both slept later. I was up at 7:30. Kate didn’t get up until about 9:00. She came downstairs and said hello. She came in with her morning pills in her hand. She very naturally picked up a beverage cup that Jesse had gotten out for herself and used it to take her medications.

In a few minutes, she walked out of the kitchen. When I checked to see where she had gone, I found her under the covers in Jesse’s bed. She was there until close to 11:00 when she woke up and said she wanted to take a shower. While she was in the shower, I put her clothes out on the bed. Later I went back to check. She had gotten out of the shower. I thought she might not see her clothes on the bed and brought them to her. As I helped her by pointing out what she could wear, she responding willingly and even gratefully. This is another pattern that has emerged when we are traveling. My interpretation is that she finds everything a bit confusing and, thus, willingly accepts my help more easily than when we are at home.