| A real-time account of Dementia Caregiving

April 29, 2016January 2, 2018

Looking Forward to a Good Day

It is a beautiful day in Knoxville today. In fact, we have had a string of beautiful days. That has meant Kate is spending a little more time in the yard. I try to let her stay out as long as she cares to. Sometimes, especially late in the afternoon, I feel the need to encourage her to come inside as I did yesterday when we were supposed to pick up friends to go to dinner at Casa Bella where they had a special night of music the songs of Peter, Paul and Mary as well as Simon and Garfunkel. This was a one-time replacement for Broadway Night that occurs the third and fourth Thursdays of each month. They have been doing this for the past 16 months. Kate and I have made almost every program as well as Opera Thursday which is the first Thursday of each month. This is something we both enjoy. I believe it is especially beneficial for Kate. It is not only a time to enjoy the music; it is also a social occasion. Many of the people who attend are regulars like us. Last night was a special treat for Kae as she is very fond of the couple who went with us. She loved the evening. That, of course, makes me happy.

Yesterday there were a couple of things to note about Kate’s behavior. Early in the day as she was getting dressed, I went to her room to get an idea of how long it would be before leaving for Panera. When I entered the room, she picked up a small painting or print that we had gotten on a trip some time ago. She asked, “Where did I tell you I wanted to hang this?” We had not had a conversation about this at all. I said, “I don’t remember your telling me.” She looked mildly disgruntled and tossed he picture on her bed where it had been. From past experience I knew not to pursue the subject any further.

The second thing occurred as we were getting ready for the dinner last night. She said something like, “They really have the time down on the deodorant.” I was puzzled but didn’t say anything. She came out of the bathroom and said, “It works. You just hold your arms up like this for 10 minutes (seconds, I assume).” She went on to say more that I didn’t understand. At first it sounded like you didn’t need to use deodorant if you just washed under your arms and then held them up for a short time. She said something else that made me think holding up one’s arms let the deodorant dry made it work more effectively.” I told her I didn’t know that. She then said, “You told me that it made sense.” When I told her I didn’t remember talking about this, she was irritated and said, “Let’s not talk about it.”

April 27, 2016January 2, 2018

Another Example of Humor

I believe I may have mentioned this quite a while ago, but here is another example of our use of humor that helps us ease by some problem spots. Yesterday morning as we were driving away from the house to attend the Y breakfast, I had neglected to turn the fan up to a higher speed on the car’s AC. This is not terribly unusual for me, but I try to remember because Kate likes to have the air flowing even when I may feel just fine. As we were approaching the traffic light, Kate said (in a very disturbed voice), “Oh, its so hot in here.” I said, “Whoops, I forgot to turn on the air conditioner.” She said, “You never remember.” The she proceeded to tell me that I never think of her needing the AC. She said if I were hot, I would turn it on right away. This doesn’t sound humorous to read, but the way she says it is funny. She says it in a manner which allows me to respond in like manner. I always say something like, “I’ll never do that again. I’ll remember next time.” Then she says, “We’ll see.” Often she says, “You’ll never change” as she gives me a dirty look that isn’t mean-spirited. This kind of exchange occurs rather frequently.

At the moment we are back at Panera where we had lunch about 11:15 before I had to attend a foundation board meeting. Before leaving, she expressed displeasure about here no having some place or “something” to do. She has been a little bored this week. When I got home, I asked if she would like to go to Lowe’s. She said she would but later. She was in bed in our bedroom working puzzles on her iPad. Then I asked if she would like me to look for something on Netflix that we could watch. She said she would, and I proceeded to look for something. We settled on a British TV series called “The Vicar of Dilby.” In a few minutes I noticed that she had stopped working on her iPad and had pulled the covers over her. I asked if she wanted to continue watching the program. She told me to do whatever I wanted. That led me to turn off the TV and return to the kitchen where I was going to check email and respond to a message from a friend.

About 45 minutes later, I heard her call to me. She asked if I could take her to Panera. She had obviously gotten bored. It is very unusual for her to want to go to Panera in the afternoon. In fact, this is the first time I recall her requesting it except in the morning. So we are here now, and all is well. As usual she brought her iPad. She was hot when we first arrived, but I believe the air conditioning has kicked in. It feels cooler, and she hasn’t complained.

April 26, 2016January 2, 2018

Another Example of Coordination Problems

I came back from my morning walk at 7:00 and went into our bedroom where Kate was sleeping. I asked her if she wanted to go to our monthly Y pancake breakfast. She said that she did. See was a little groggy and didn’t show a lot of enthusiasm. I told her that she didn’t have to go. I went back in a few minutes and saw that she had gotten up. I came into the kitchen to load some photos onto my computer. I like to leave at 7:45 for the breakfast which starts at 8:00. About 10 minutes later, she called to me and said she didn’t think she would go. I met her in the family room and asked if it was because she didn’t know what to wear? She said yes. I told her I could find something. I got her a pair of black slacks that had just come back from the cleaners along with a pink top. She took them to her bedroom to put on. In the meantime, I went back to the kitchen and my computer. At 7:45, she had not appeared for us to leave. I decided not to rush her. Then at 7:55, I went back to the bedroom and found her in bed working on her iPad. I asked, “Did you decide not to go to the breakfast?” I reminded her that I had gotten clothes for her to wear. She wanted to go; so I went with her to her room where her clothes were on the bed. She got ready quickly, and we went to breakfast where she had a good time. She had just completely forgotten that we were going to the breakfast.

April 25, 2016January 17, 2018

Coordination Issues/Problems

I know I must have previously written about my newly discovered appreciation of short-term memory. When Kate was first diagnosed, she had some difficulty remembering things from one week to the next or sometimes one day to the next. These are not unlike all of us. I think it may have been more of an irritation to Kate than to me.

What was a minor thing then has become a significant issue in coordinating plans. This is something I never thought about until it occurred. Let me give you a couple of examples, one from yesterday afternoon, the other from this morning.

Kate and I went to Lowe’s to buy more plants after we finished lunch yesterday. I was motivated to do this because I knew that today I have an 11:30 meeting of the executive committee at the foundation followed by an afternoon at our Rotary golf tournament where I will be a volunteer for a beverage cart. I thought that would give her something to plant while I am away for about six hours or so.

When we got home, she wanted to go outside to work in the yard. She stayed outside the balance of the afternoon. We normally go to eat around six o’clock. When she hadn’t come in at 5:50, I went outside to let her know the time. I was careful not to rush her. I just asked if she were getting hungry. She said she was. I told her the time and she said she be right in. I went out again at 6:20. Once again, she said she was coming in. Finally, I went out at 6:50 and told her we should probably get ready for dinner. She came in, and I expected her to get ready rather quickly. Sometimes she does when we are not going out for a special evening which calls for something dressier. This was one of those nights when she took a long time. We finally left for dinner at 7:50. We returned home just before nine.

Our son sent me a text right about 6:00, shortly after I had gone outside the first time to let Kate know it was getting time to eat. He wanted to chat by phone concerning a meeting he is going to have this coming Friday with the owners of his company. He is exploring the possibility of his buying the company and wanted to discuss it with me. I responded to his text and told him Kate was coming in, and we would be going to dinner. I indicated I would text him when we got home. At that time I was thinking we would leave for dinner around 6:30 and return home shortly after 7:30. As it turned out, I could have spoken with Kevin at that time, but it was 9:30 before we actually did speak. (I normally go to bed about 9:15.) We didn’t finish until after 10:30.

Normally I would leave for the Y on Monday morning at 6:30 am and get home around nine. I decided not to go to the Y because of how late I got to bed and wanting to be with Kate as much this morning as I could before meeting my obligations of the day. I got up at 5:15 and had breakfast before taking a walk for an hour. I was back at the house by 7:35. Before leaving for my walk, I wrote the daily schedule on the memo board that I keep on the island in the kitchen. I noted the time I would be back from my walk, that we would go to Panera at 9:30, and that I would leave at 11:15 for the balance of the day and where I would be.

When I got back from my walk, Kate was dressed and headed outside to work in the yard. I reminded her that I will be leaving at 11:15 but didn’t stop her from working in the yard. I tried to work things out so that I could keep her busy this morning. Now I wonder if she will want to spend an equal amount of time in the yard this afternoon. If not, she may be left without something to do. That will happen if she puts in her new plants this morning. So far it doesn’t look like she is doing any planting. That is good. All in all this is a good illustration of how hard I work trying to see that things go smoothly for her only to discover that her short-term memory keeps her from going with the plan.

April 23, 2016January 2, 2018

Where does the time go?

I meant to check in before now and was surprised to see that my last entry was a week ago tomorrow. It has been a pretty busy week and a good one. Let’s see if I can hit the highlights. On Monday we went to see a neurologist, Kate’s regular doctor had made the referral after I had expressed interest in getting an opinion of a neurologist. As I have expressed earlier I hadn’t felt a special need for a neurologist until recently.

I liked the doctor, but I still feel unsure of our present need for him. He said that Kate was already taking the appropriate medication for someone with Alzheimer’s. I also was honest with him about my being unsure we needed him. He understood. We decided to start with an MRI so that he can see get a better grasp of her condition. He asked a lot of questions of Kate and of me to understand as much as he can, but I fully expected that he would want to avail himself of more diagnostic technology. Yesterday afternoon, we went in for the MRI. I suspect the results will be sent to the doctor early this week.

On Monday night we went to our music club meeting. Several voice students at UT provided the music for the evening. They were outstanding. Kate loved it. Two of the singers were people we had heard at Casa Bella.

On Tuesday we had lunch with an old TCU friend and housemate of mine who lives in Nashville. We have seen him on a couple of occasions when we have been in the area. This was another good experience for Kate and me.

For some reason I got all mixed up on Wednesday. That is the day for us to attend the Shepherd’s Center. I forgot and went to the Y as has been my custom. When I got home Kate was working in the yard. We have been to Lowe’s for plants three days this week; so she has been back in the yard. That, too, is good for Kate. I am happy she has this. We headed out to lunch about 11:30. When we had almost reached the restaurant, I remembered the Shepherd’s Center and that I had signed up for lunch. It was a little early and we had already missed our classes. Knowing Kate was hungry, I took her back to Panera’s for a muffin. From there we attended the lunch.

Thursday I had a morning meeting at United Way, a lunch meeting at church, and an evening reception and auction for the foundation. I felt bad about being away from Kate so much, but she didn’t seem to mind at all. A funny thing happened when I got home that night. I arrived home early, about 8:20. She was sitting in the family room with the TV on and working on her iPad. She said she had been sleepy but had stayed up. Remembering that on one other occasion, she had stayed up because she thought I had asked her to do so, I asked, “Did you stay up because I told you to?” She said, Yes. You told me not to go to bed until you got home.” Very shortly thereafter, she went to bed. She wanted me to come to bed as well, but it was too early for me. I delayed a little. At one point, she was disgruntled because I was taking so long. She said, “I think I’ll go back to Fort Worth and marry Rick Wainwright, (pause) but he’s dead.” Rick was her high school sweetheart. She didn’t sound irritated with me as she said it. She was just needling me.

That makes me think about humor in our relationship. It has become a regular part of our daily conversations. She likes to kid me about being vague in just about everything I say (or so it often seems to me). I have to be very clear, or she won’t follow me. It often happens when we are talking about someone or some event or place. I will make a follow-up statement like, “I haven’t seen her in a while,” or “I wonder who’ll be there?” Most people would understand that I was referring to the person or the event we were just talking about, but she usually doesn’t. I will then say, “I guess I wasn’t as clear as I could be.” She will roll her eyes. Then I say, “I will be clear next time.” She will say one of several different things. “We’ll see,” or “You’ll never learn.”

I can’t think of other examples at the moment, but we have a lot of interplay like this in which she is criticizing me for not remember or doing the right thing. By the way, she is often correct. I believe that it is because so much of her behavior is normal it elicits a normal response from me. In time it may get easier though I am not sure.

On a completely different note, I continue to observe that she is depending on me more for things that not long ago she would not have done. The examples I can think of involve clothes. When we get ready to go someplace, especially if it requires her to look nice, she asks, “What will (or can) I wear?” Then I will show her. I try to give her a choice of 1-3 things. I have learned why she has gravitated to wearing my socks. She has forgotten where she keeps her own. Now she just says, “I need some socks.” I go to her drawer and get them. Another example occurred this week when I took her to Target to buy some clothes for her to wear when she is working in the yard. She was quite comfortable with my picking out things for her to try on. After the first pair of pants did not fit, I brought her several others until we got the right size. What I did was move from the women’s to the men’s department. I got her 4 pair of slacks with a 40″ waist. I didn’t tell her. She would be horrified as she was at the neurologist’s office on Monday when she weighed in at 171. She had forgotten that she had been at 174 at her last appointment Dr. Reasoner.

The last point I will make today will be short. We have had a good week, one that had followed a couple of good weeks before. I feel good about this as I was very discouraged after our cruise in January. I thought our good times might be over. She is more dependent now and that saddens me; however, we can still have fun together.

April 16, 2016January 17, 2018

Panera – Like Another Home

Kate is getting so accustomed to coming to Panera that she sometimes just gets dressed, puts her iPad under her arm, and comes to me in the kitchen (my office) all ready to go. She did just that this morning. She doesn’t say a word. She just stops. I see that she is ready, and off we go.. Today I wasn’t quite ready; so I quickly dressed. I think it is a good routine for both of us. It gives us a change of scenery, and we often see people we know and talk with. This morning, for example, a gentleman whom I had seen but didn’t recognize came over to me reminded me of his name and that we had worked together in connection with one of the local arts association. He asked me if I were serving on any boards. I told him I was slowing down now but was concentrating my attention on the foundation.

Shortly thereafter, another man approached me and spoke. He is a former police chief of Knoxville. I had recognized him several months ago and have seen him here a few times subsequently. He is now a pastor. I told him I always wanted to call him Chief but I thought I should change now to Pastor. He told me to just call him by his first name. I introduced him to my wife and we had a very brief chat. These kinds of experiences are good for both of us and help make it a nice day.

Speaking of nice days, we continue to have them. Today we are going to see Robert Devereux which is this week’s Life in HD at The Met performance. We will go to lunch near the theater and then walk over for the opera. This will be a new opera for us. I hope it is one we both enjoy.

Yesterday after lunch Kate worked in the yard a little. We went out for pizza for dinner. We go there often enough that we know the various waitresses which makes us feel at home. This is true for most of the other restaurants at which we eat. Eating out has become a social experience.

After dinner, we came home and watched another episode of “Grantchester,” a Masterpiece Theater production. It was a bit confusing. I’m not sure Kate got much out of it, but she stayed with it through to the end. We started watching another show, “Father Brown,” but she didn’t last. Nonetheless, we enjoyed watching together, something we don’t do a lot of.

April 14, 2016January 4, 2018

Yet Another Nice Day

I like making positive reports; so I am going to make an entry right now even though it’s only mid-afternoon. Today was PEO day for Kate. I asked her to get up about an hour and a half before time for us to leave. That turned out to have been a good move. It took about an hour and 45 minutes before we left. Last night I had decided what I thought she should wear. I brought them to her before she got out of bed. She liked what I had chosen; so I left them on the bed for her. I had picked out a beautiful top that we had bought about 3 weeks ago. It is a beautiful 2-piece knit “top.”

When she was ready, she came into the kitchen. She didn’t say anything. She just stood there. She was waiting for me to pass judgment on her attire. I told her she looked beautiful. I was so pleased to see her dressed like that. On the way to the meeting I asked her if she remembered my phone number since she calls me when she is ready for me to pick her up. It was clear that she is having trouble now. In the past, she has always been able to remember my number. These days she doesn’t have much occasion to call me which is why I asked. I do remember that the last time I took her to a PEO meeting that she was unsure of the number. I didn’t have anything to write with or I would have given my phone number to her. I am going to keep a few of my business cards with my cell number in the car. I think I will also start making sure that she has a card with my number on it anytime we are apart.

While she was in her meeting, I went to church for a reception honoring volunteers. I decided to return to get Kate before she called since she had been unsure of my number. It turned out that my timing was perfect. The meeting had not gotten out when I drove up. Within 5 minutes, Kate appeared at the car. I was surprised and said something to her. She said, “”You said to meet you.” I said, “”And you did.” Then I added, “You didn’t have to call.” She said, “I would have if you hadn’t been here.”

From there we went to the Bluefish Grill for lunch. This was our first time there. We had a good lunch and will plan to return. It is diagonally across the street from the movie theater where we go to see Live in HD at The Met performances. We’ll be there this Saturday. It was nice to go to a new place, especially since we had such a good meal. She had blackened catfish with mixed vegetables (broccoli and green beans) that were cooked perfectly. I had curried shrimp that was also quite good.

Our lunch was one of those pleasant times that just happen once in a while. It topped off what has been a great day. Now she is back home and is out in the yard planting some things we bought two days ago at Lowe’s. She’ll be out there until I call her inside in about an hour. Then we will have an early dinner. I am going to the opening of our new baseball stadium tonight. I don’t intend to stay the whole time. I am mostly going to be sociable. I am a guest of our attorney.

April 13, 2016January 2, 2018

Things Are Going Well

This was a day in which she got her clothes without my help. I offered, but she said she could do it. I had hung the 3 pair of slacks we bought yesterday in her closet. She did not wear any of them, but she found a pair of chinos for this morning and a nice pair of black slacks to wear to dinner. We had dinner at Hathaway’s where we sat at a booth across from a couple we have known from the symphony and the music club.

Saying that things went well doesn’t mean there were no signs of her Alzheimer’s. There are always signs of that. The difference was that they were the kind of things that don’t generate frustration for either one of us. For example, one of the reasons I wanted to go to Hathaway’s is that we can split a good meal. It turned out onion rings came with the steak, and I ate 4 of those. I am trying not to eat too much. When the server asked if we wanted dessert, I was prepared to say no when Kate said, ”We could split something.” When this happens, I go for the dessert. I dont want to look back on these days and think, “I wish I had been less strict with my diet when we went out to eat.” This kind of thing happens more than I would like, but I feel it is the right thing to do. The other thing was the continued Deja vu experiences she has. As we were driving away from the restaurant, she said, “I’ve seen that couple (on bicycles) right here before.” There have been several of those experiences today.

April 13, 2016January 17, 2018

Another Nice Day

We have had another nice day. Again, it was a day with a good bit of activity. That really helps. This morning we went to the Shepherd’s Center for the second time. It was even better this time because we were there from 9:00 until after lunch at 1:00. We attended classes on the Holocaust at 9, Heroes and Legends at 10, and Classic Movies at 11 before having lunch at 12. Kate enjoyed all of it. We could have stayed another hour, but she was a little tired. We spent the afternoon at home. First, she remained outside for about an hour. When she came inside, she worked on her iPad for a while. Then she told me she was going to take a bath. After that she remained in her robe and got into bed with her iPad. I have been working on my new computer to get everything set up and operating on a Carbonite backup in the cloud. At 6:00, I asked her if she would like to go to dinner. She said she would after she finished the puzzle on which she was working. This was a day in which she got her clothes without my help. I offered, but she said she could do it. I had hung the 3 pair of slacks we bought yesterday in her closet. She did not wear any of them, but she found a pair of chinos for this morning and a nice pair of black slacks to wear to dinner. We had dinner at Hathaway’s where we sat at a booth across from a couple we have known from the Symphony and the music club. Saying that things went well doesn’t mean there were no signs of her Alzheimer’s. There are always signs of that. The difference was that they were the kind of things that don’t generate frustration for either one of us. For example, one of the reasons I wanted to go to Hathaway’s is that we can split a good meal (tonight it was a ribeye with a baked sweet potato). It turned out onion rings came with the steak, and I ate 4 of those. I am trying not to eat too much. When the server asked if we wanted dessert, I was prepared to say no when Kate said, “We could split something.” When this happens, I go for the dessert. I don’t want to look back on these days and think, “I wish I had been looser with my diet when we went out to eat.” This kind of thing happens more than I would like, but I feel it is the right thing to do. The other thing was the continued Deja Vu experiences she has. As we were driving away from the restaurant, she said, “I’ve see that couple (on bicycles) right here before.” There have been several of those experiences today.