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Coordinating Can Be Challenging

Last night I told Kate that our Y breakfast was today.  She likes to attend, but she also likes to sleep in the morning. The past 2-3 months we have not made it because she didn’t want to get up. Thus, last night I asked her if she really wanted me to get her up. She said she did.

At 7:00, I woke her up and asked if she still wanted to go to breakfast. She groaned but said she did. I turned on the TV and started changing from my walking clothes to my regular clothes for the day. She got up and went back to her room. When I finished dressing, I went to the kitchen where she was getting some apple juice and yogurt. I reminded her of the breakfast. She had forgotten. By this time it was 7:20. I told her we would leave in about 20 minutes. As she headed toward our bedroom with her yogurt and apple juice, she said, “I’m going to eat my breakfast.” I reminded her that we were going to the Y breakfast. She had forgotten again. I reminded her that we were leaving in 20 minutes. At 7:45, I went to our bedroom to see if she were ready. She was sound asleep in bed. I went back to the kitchen to fix my breakfast. I suspect we won’t go back to the monthly breakfast together. I believe I will go back at a later time when I have care for Kate during the morning hours

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Travel, Confusion, and Learning How to Address It

Kate came into the living area of the suite to which we had been upgraded. She looked very groggy and confused. I asked her if I could help her. She gave me a confused look. Then I took a more direct approach that is not like me. I said, “Let me tell you where we are. We are at the Haywood Park Hotel in Asheville, North Carolina.” She said, “Oh, yeah.” I went on to tell her that we were going back home this morning and that we had no time schedule to meet. That seemed to satisfy her. Then she asked, “Can I rest a little?” I told her that would be fine. Then she said, “If I can find where to go.” I said, “Let me show you.” Then I walked her to the bedroom.

I find that I am always learning and changing the way I approach things with Kate. My normal style is not to be abrupt or too directive. I know she does not like to be controlled. There are times like this one, however, when she is disoriented or in need of direction. In this kind of situation, I have learned enough to know that she won’t realize where she is when she wakes up when we are traveling. I can make things easier for her by simply telling her and not acting as though she does know.

Three weeks from tomorrow we leave for Texas where we will spend a week visiting family and friends. I will need to remember how important it is to provide regular information of where we are, what we are doing, etc. in order to maintain her comfort level in strange surroundings. This is more difficult than it sounds. It is amazing how easy it is to fall back on the way I have related to her over the course of our marriage. In so many respects, she continues to appear quite normal, even to me. That makes me want to respond to her in the way I would have before her diagnosis.

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Travel and Confusion

Today Kate and I drove to Asheville where we have had a very nice day. She has been in a particularly good mood. In addition, she has enjoyed everything we have done today. That includes an especially nice lunch at The Blackbird. We asked for the server who had taken care of us on our previous two visits. She remembered us and once again, remembered our drink orders. Lunch was followed by a play that she liked, An Act of God. I thought the play was well performed, but did not think the play itself was a good one. It isn’t one I would recommend. One of her qualities that has been brought out by Alzheimer’s is to be especially impressed with performers. She almost always overstates their talent. I believe that is what impressed her today. I don’t think she could follow most of what was happening in the play itself. The important thing to me is that she really enjoyed herself. When the play was over, she said, “Wow!”
She has likes the hotel in which we are staying. We have stayed here a number of times. It’s a nice place and in a good location downtown. The woman working the front desk has been with the hotel since they opened and has been at the front desk each time we have arrived. This time she arranged an upgrade to a much larger suite than we usually have. It is certainly something we don’t need, but it is nice that she did this. It keeps us coming back.

In the midst of her enjoyment, Kate has been confused on where we are. As we got to the theater this afternoon, she said something that I can’t remember, but it implied that she thought it was in Knoxville. A little later when we reached the hotel, she asked, “Now tell me where we are.” I told her we were in Asheville. A few minutes later, she asked the name of the hotel. I told her. The second I told her Asheville and the hotel name she said, “Oh, I knew that.” I am sure she did. She just couldn’t call it.

One other moment of confusion occurred just before we went to dinner. She had just brushed her teeth and came back into the bedroom with the toothpaste and two packets of towelettes in her hand as though she were ready to pack up for home.

Right after returning from dinner, she came into the bedroom after brushing her teeth. This time she wasn’t carrying anything. She looked puzzled. I asked if she were looking for her night gown. She didn’t answer. Then she saw that the housekeeper had put a robe on each bed. She said, “Oh, here it is.” Then I got her night gown for her. She has now settled into bed with her iPad. She is very contented, and so am I. She just turned out her light. I think I will get ready to take my shower.

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Permission and Sign Language

Twice today, once coming home from Panera this morning and one after returning home from the movie, Kate has asked my permission to work in the yard, to wear a cap, and to use her clippers. As always, I said yes to each of these. Both times, she looked at me like I never let her do these things. It is intriguing to me that she does this without my ever denying her.

The sign language intrigues me. When she asks to work outside, she points to herself and then to outside. When she asks about the clippers, moves her index and middle fingers like scissors. I understand these without problems. There are other time when I can’t understand what she means. That frustrates her. That tickles me since I think I should be the one who is frustrated.

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Additional Sign of Success With the Sitter

As we drove out of the driveway to dinner, I decided I wanted to get a little more from Kate about her experience with Mary. I said, “So you like Mary?” She answered with enthusiasm, “Yes, she is very nice.” Then I asked, “Do you like having someone with you while I am gone?” Again, she answered immediately and affirmatively. I consider this an even stronger statement. My optimism about bringing in help is increasing.

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A Successful Experience with the New Sitter

Today, Mary, the sitter, came back for her second visit. As Kate and I were nearing the end of our lunch, I mentioned that I was going to donate platelets and that Mary would be coming back again. Knowing that she would not remember Mary, I said she was the person who visited her last week. She gave me a look that implied she wasn’t thrilled about that. Although that did discourage me a little, I considered that she sometimes reacts the same way when I mention that a friend is coming over or that we are going to lunch with a friend. In these instances, I am confident that it is because she does not remember the person.

Mary arrived while Kate was outside cleaning out a flower bed in the front yard. I went out to tell Kate that I was going to leave for my platelet donation. Mary had gotten out of her car and was following me down the driveway. After my saying goodbye to Kate, she greeted Mary warmly. I felt good about that because it sounded so genuine.

When I returned home, Kate and Mary were seated in the family room where Kate was looking at a family photo album. Mary said Kate had shown it to her and taken her through the house. Kate had a smile on her face that indicated that she was very comfortable having Mary. Then Mary left. As she was walking out the door, Kate said, “She is really good.” I am back to feeling good again. The only thing is that Mary cannot come next Wednesday; so the agency is going to send yet another new sitter.

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A Bad Experience with the New Sitter

As I probably conveyed in my earlier posts, I have been elated over the new sitter who has been with us twice. Today she failed us. I had planned two meetings this afternoon specifically because we would have a sitter. The first was with my friend, Mark, who is serving as an editor of my journal and uploading it to my blog. The second was a meeting I had arranged three weeks ago with our accountant.

Kate was tired this morning. She got up and had some juice and went back to bed. When she was still sleeping at 10:00, I was not worried and decided to let her sleep as long as she wanted. By 11:00, I felt I had to wake her up in order to permit her time to get ready for lunch and for us to go to lunch before we came back to the house in time to meet the sitter at 1:00. I try not to rush Kate and have found that this prevents problems. I checked on Kate shortly after 11:30. She wasn’t ready and asked me not to rush her. I went back one more time which irritated her. We finally got to lunch at 12:15. We had our meal at 12:28. I had to rush her to eat, and we left for home at 12:50. We were home at 12:55.

The sitter had arrived on time on her previous two visits. Today she was late. When she hadn’t arrived by 1:15, I called the agency. They tried to reach her unsuccessfully. I told them I could easily cancel the first meeting but that I really need to make the second one. They arranged for a replacement who arrived about 2:20. That gave me a short time to brief her before I left.

Kate had gone directly outside after we returned home from lunch. When I saw her working in the driveway about the time the sitter was to arrive at 1:05, I asked her to move to another location because I didn’t want to risk the sitter’s driving in the driveway in a hurry and hit her. Kate decided to come inside and got in the bed. She was resting when the replacement arrived. After giving her a short briefing, I got Kate up and introduced them to each other. Kate was just a little big groggy and not as awake as I would have liked, but I had to go. Kate decided she would go outside and was headed there when I left.

When I returned close to 5:00, the sitter was in the family room. Kate was in our bedroom working on her iPad. I thought that was fine but was a little disappointed because she had remained in the family room with the previous sitter even though Kate was resting on the sofa. It made me think that she had not been enthusiastic about the new sitter. After the sitter left, I was eager to hear what Kate thought about her. I went back to the bedroom where she had picked up her iPad. I said, “She seems nice.” She said, “Very nice.” That was all we said, but that was enough. I had feared that she might have had a negative impression. Even if she was not as enthusiastic as I had hoped, it was a positive response and definitely not negative.

I actually like the new sitter. Her name is Mary, and she is older than the one she replaced. Her husband is retired from the UT Medical Center. She has a daughter in college and a daughter in high school. She has been working for the agency since 2004. She is scheduled to return on Friday, but she is not available on Mondays at all. That means we may end up with at least two different sitters, one for Monday and another for Wednesday and Friday.

I will call the agency in the morning to discuss where we go from here, but it was a great disappointment that the original sitter did not show up. The agency told me that they would have to let her go for that. I have mixed feelings about that because I really liked her, but I also understand that the agency cannot accept “no shows.” It is a good illustration of what happens when trust is broken. I hope we can soon work out the kinks we are running into.

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A Good Day

I always love to report that we have good days even 6 ½ years after Kate’s diagnosis. Of course, I wish that I could report this more often, but that is not realistic given the nature of Alzheimer’s. It is clear that Kate’s mood plays a significant part in making these days happen. From the very start of the day right until this moment, she has simply been in a good mood. We both have enjoyed the day. I have to say it wasn’t that we did anything special. It was that she was happy with everything we did. This reminds me of that of expression that success if not getting what makes you happy but being happy with what you get.

She was up earlier than usual this morning. About 8:30, I went back to the bedroom to see if she were still in bed. I found that she was not only up but dressed and just about ready to go to Panera. We were there before 9:00. She was happy on the way to Panera and throughout the time we were there. One of the people we see there frequently was by himself today and sat at a table across from us. We (he and I) talked for about an hour while Kate worked on her iPad. She never showed any boredom or eagerness to leave. About 10:30, she did indicate that she would like to go home and we did. Just before 11:30, I told her it was time for lunch. She came in right away, and we left for Carla’s where we usually go on Tuesday. From there we drove to the Acura dealer for routine servicing of my car. We were there about an hour and 20 minutes. Again, she was not restless. She simply worked on her iPad while I edited a slide show of photos taken during a 1976 trip to Colombia. We came right home, and she went back outside to work in the yard until I called her in to get ready for dinner.

She ate every bite of her dinner and commented on how good it was. We came home, and she changed into her night clothes and got ready for bed. She was still in a good mood.

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Second Visit with New Sitter

Today Kate had her second visit with Anita, the new sitter. I am glad to report that it went well. I didn’t mention it to Kate until just before she arrived. Then I told her I was going to Rotary and to the Y and that Anita, the woman who stayed with her last week was coming. Kate didn’t remember her. (I would have been amazed if she had.) I reminded her that I had asked someone to stay with her when I go out. She said okay. That was it. When she saw Anita, she greeted her warmly. I felt good when I left, but I couldn’t help wondering how things were going while I was gone. When I returned home exactly 4 hours after leaving, I found the two of them in the family room. Kate was resting on the sofa. Anita was seated in a chair opposite her with the TV on. They had gotten along just fine. After Anita left, I asked Kate if she liked having someone here when I am gone. She said, “Yes, especially her. What’s her name again?” I am very pleased.

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Sometimes She Surprises Me

We are seated at a table at Panera. A moment ago, she accidentally lifted her plate off the table and then dropped it. It made a noise, and she audibly reacted. That is no surprise. These kinds of things happen regularly when she heard a sudden noise. In this case, I said, “This time you scared yourself.” She answered, “Not scared. Startled. There is a difference you know. (Pause.) I am a former English teacher.” She smiled.