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I took a big step: In-home care

This afternoon I met with a social worker with an in-home health care agency. She is someone that I have known at least 15 years, perhaps 17. She used to work for the physician practice with which my mom and dad’s doctor was affiliated. Later she worked at the VA where I also knew her since Dad got his prescriptions there. In addition, I also know the marketing representative for the agency. I had worked with her in providing rehab services for my father’s companion after her hospitalization in 2007 or 2008. Another reason I feel comfortable with this agency is that Kate had interviewed the owner during the time that another agency was providing care for Kate’s mother. Kate had been impressed with him. In addition, one of the social workers at Kate’s physician’s practice (the same one my parents used) had given me the name of this agency and one other as places she felt good about.

I was impressed with the listening skills of the social worker. She didn’t interrupt me once as I was giving her information. That is rare. After giving her all the background information I wanted her to have, she gave me information about the agency and their services. Then she completed a form with information about Kate and had me sign a contract.

We plan to start the Wednesday after Labor Day. We will begin with a three day a week schedule. They have a 4-hour minimum. On Monday, someone will be there at noon so that I can get to Rotary. After Rotary, I will go to the Y and then back home. On Wednesday and Friday, a caregiver will come at 1:00. I will go to the Y at that time run errands or meet someone for coffee or whatever so that I can be home by 5:00.

I set up an appointment for the social worker to meet Kate on August 23. We are going to meet at Panera. The plan is for it to appear as a chance meeting. We will be there a little early. When the social worker arrives, she will stop by our table and say hello. I will invite her to sit down with us.

I haven’t figured out exactly how to explain the caregiver to Kate. My plan is not to define her as a caregiver. This is an important first step. I am optimistic that it will work out fine.

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Feeling Sad, Anxious

Kate’s confusion related to pulling leaves from the neighbor’s shrub as well as a number of other things have caused me to believe she may be on a more serious decline than in the past. On my agenda today is a phone call to one of the agencies with which I spoke a month or so ago. I am going to let them know that we are coming closer to using their services. I also plan to ask them what they have learned about transitioning to in-home care for those patients who don’t believe they are ready for it.

I also need to call Transamerica again regarding the completion of their application. First, I am going to review the application as though I were filling it out. I am bound to notice things that are not clear. I will jot those down before making my call. I also want to make sure of whether or not there is a requirement that we go through an agency as opposed to hiring caregivers directly.

This is ironic that I should be feeling the last stage of this disease closing in on us just as we are about to embark on new relationships with two couples
The good thing is that Kate doesn’t seem to be affected emotionally by what is going on. She still feels quite normal and happy though as some other caregivers have noted her happiness is flatter. I get sparks of the former Kate when we go to Opera Thursday and Broadway Night at Casa Bella.

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Something New

I went in the pool this afternoon and left Kate in our bedroom where she was working on her iPad. She told me she was going to take a nap. When I came in 40 minutes later, I didn’t see her in the bedroom and assumed she must have gone in her room for a nap, something that is not unusual.

After my shower, I went to her room to check on her. She wasn’t there. I went outside and didn’t see her. I came back in the house for another look. Still no sign of her. I went back outside. Coming back from the side of the house opposite from our driveway, I saw her on the other side of the driveway. When I got close, I could see that she was actually in the neighbor’s yard and was pulling leaves and branches off of a large shrub that is 7-8′ tall. She had removed all the leaves off of about a third of the shrub. I told her that was a shrub that belonged to the neighbors. She said she knew but that it needed trimming. She commented that now it looked better. When we got back from dinner, I called the neighbor who was very understanding as I expected she would be. We had a nice conversation. I told her I would try to see that it doesn’t happen again but that it could be hard to prevent unless I am outside with her all the time. Again, she was very understanding and said not to worry about it.

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Another Great Day

I am glad to report that Kate had a great day yesterday. I did as well. The greatest pleasure of the day was seeing Kate enjoy herself so much. Here’s what happened.

Last week, we bumped into Marty Lang, a long-time friend whom we met soon after moving to Knoxville in 1971. He is a Methodist minister whose career has been outside a local church. He has been very active in social justice efforts as long as we have known him. His wife died about 2 years ago, and he has been seeing someone else recently. We talked about our getting together as couples. He followed that conversation up with an email inviting us to lunch.

Yesterday we had lunch with them. Kate was apprehensive about going. Although we had just seen Marty last week, I knew she could not remember him except to recognize his name. Neither of us had met his new friend. Having known Marty a long time and also aware that his friend had had a career in christian education, I felt confident that she would enjoy herself.

It turned out I was right. It was an especially good get together. When Marty met us in the restaurant, he was carrying a small potted plant with beautiful yellow flowers for Kate. When Anne joined us, we entered into the typical kind of “get-acquainted” conversation. Anne is very good at asking good questions of those she is with. She also is a good listener. Kate was quite comfortable with this kind of conversation because it involves the kinds of things that she can still remember – family, growing up, dating, etc.

We spent almost two hours with them. There was never a lull in the conversation. When we got in the car to go home, Kate was enthusiastic about our time with them. It was good to see her enjoy herself.

That wasn’t the only good thing about the day. About an hour after we got home, I took her for her monthly facial. Less than an hour after that we were at Casa Bella for Opera Thursday. As usual, we sat with the same two couples. While Kate does not talk a lot, she feels comfortable with them. Equally  important, the singers last night were especially good. It is a very intimate setting, and we were right in front of the singers. What a great way to finish what had already been a great day. I hope we will be able to continue having periodic days that this.

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Awareness of Memory Problems

Over the past year, I had thought that Kate had reached the point at which she didn’t recognize the impact of Alzheimer’s on her. I have begun to question my conclusion over the past few days. Several times I have been telling her something when she stopped me and said something like, “Stop. I’m not going to remember anything anyway.” I don’t really know that she sees this as a direct result of Alzheimer’s, but, at the very least, it is a recognition that she can’t remember. This is another reminder that a person with Alzheimer’s does recognize things he or she can’t do.

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Difficulty Understanding

Kate and I are at Panera where we came after seeing the movie, Dunkirk. On the way here, she had expressed an interest in knowing more about the real events on which the movie was based. That led me to Google. As I was reporting what I had learned, she held her hand up and very nicely told me to stop, that her brain couldn’t absorb any more. She said she was interested in knowing more, but it was too difficult for her to grasp so much at one time.
I told her that a recent Time magazine that we have at home has a feature on the events surrounding this evacuation. That made her happy, but I would be very surprised if she actually reads it. I can’t recall the last time I saw her reading anything. I do see her pick up something like a bulletin at church and look at it as though she is going to read it, but she puts it down rather quickly.

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A Visit with the Davises

Yesterday we had lunch with the Davises in Nashville. I am glad to report that everything went well. We spent about thirty minutes at their home in conversation before going to a restaurant. We got off to a good start when Ann and Kate paired off in their family room and had a conversation just between the two of them while Jeff and I had our own conversation. Ann was good about asking Kate questions that she was able to address even if the information she gave was not right. I couldn’t hear everything because of my own conversation with Jeff, but I did hear Kate say that we are moving to Texas. It is interesting how many things she can’t remember, but she doesn’t seem to forget about that. The good thing is that she doesn’t act as though it is something imminent.

In the car to the restaurant, Kate said something about our housekeeper. Then Ann asked her name. Kate couldn’t remember it. I whispered it in her ear. During the car ride and at the restaurant, it seemed like the conversation was mostly among three of us. Kate didn’t say much. I worried that this might bother her. As we left to see her friend, Ellen, she commented on the way Ann and Jeff are able to put people at ease. They are down-to-earth, not pretentious. This is especially important for Kate to sense because she sees both of them as very bright people and is a little intimidated by them. I hope this keeps up for a while longer.

Our visit to Ellen went well. Ellen had improved somewhat since our last visit just over a month ago. We still had trouble understanding much of what she said. By now I am wondering how much better she is likely to get. It has been two years since her stroke, and she has had 2-3 seizures since February. I plan to continue our visits as long as she and Kate are able.

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Sundowners?

Last night when Kate came inside from pulling leaves, her top was soaked from perspiration. When I commented on how hot she was, she said she was going right in to take a shower. Then in a whisper she asked a question that she occasionally asks, “Are we staying here (pointing to our bedroom) tonight?” I told her we were. Then I went back to the bedroom where I was watching TV. In a few minutes she came in the bedroom wearing different clothes from those she had been wearing. She had not had a shower. She asked me, “What should I do now?” I told her it would be a good time for her to take a shower and put on her night clothes for bed. She accepted that and only asked which bathroom should she use for her shower. After her shower, she returned to the bedroom in a robe but no gown. I asked if she would like me to get a gown for her. She said, “Yes, but first get me another towel.” I got both a towel and a gown. When she was fully dry, she put on the gown and got into bed with her iPad. She was in a very good humor. I continued watching an ETV program on the migration of Zebras in Botswana.

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Movies, A Thing of the Past?

For several months, I have observed that Kate has not enjoyed movies the way she used to. That has led me to try safer movies, those that I thought had the best chance of pleasing her. A good example of this was taking her to see Disney’s Beauty and the Beast. She didn’t enjoy it.

Today we went to see Maudie. This is a movie without sex and violence or foul language. It is a love story about a woman with a physical handicap. To me, the personality of the woman suggested that she may have had mental challenges as well. She leaves her family to make her own life and takes a position as a live-in housekeeper for a man with his own personality problems and is a seller of fish and a variety of other things. They eventually fall in love and get married. Maud becomes an artist who is discovered by a journalist who brings her a bit of fame. Even after watching it, I felt that it contains many elements that would make it appealing to Kate.

As I always do, I wondered how Kate was reacting to the movie throughout. It is a slow-moving film. I knew that could be a problem, but I also thought it might make it easier to understand the plot. It was clear that did not happen. On the way home, she said she could not follow the film.

This was an emotional experience for me in two ways. First, the movie brings out a lot of emotions. I am sure there were others besides me who at the end had tears in their eyes. Second, I was so saddened to hear that she had not enjoyed a movie I had like so well and hoped she would enjoy that I simply choked up and had a hard time telling her that I liked it and why
For a while, I have been saying that it looks like we are coming to the end of movie watching, something that has been a significant part of our lives for a good part of our marriage, especially since we’ve become empty nesters. Today’s experience just reinforces my belief/fear. I am not giving up on movies entirely just yet, but I will continue to be very selective in the ones we see.

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Moments of Sadness

Although Kate’s good humor has continued through this morning, that doesn’t mean that the usual signs of Alzheimer’s are not present. Some of these signs cause me to feel sad as they are further indicators of her decline. Over the past few days, I have mentioned a couple of times that we are going to have lunch with our good and long-time friends, the Davises who live in Nashville. Each time I have mentioned it, Kate has quickly said, “What am I going to talk about?” The first time this occurred I told her she could talk about her children and grandchildren and our recent trip to Chautauqua. Even as I said it, I knew that she could not remember enough about Chautauqua to be able to say much. She told me she would need my help. This happened last night at dinner. She said that before the visit she wanted me to go through the things we had done at Chautauqua. She also mentioned wanting me to carry the load on the discussion. I assured her that I would. The subject came up again this morning, and it appears that she is quite concerned about not being able to participate in the conversation. I do know that her memory is so poor that this is something she won’t worry about except when I mention the visit. I don’t intend to bring it up again until time to go on Friday

This morning another moment of sadness occurred as she was preparing to go outside. She couldn’t find her clippers; so I gave her a new pair that I had bought and put away for just such an occurrence. I noticed that the lock on this pair is different from the others and said, “Let me show you how to unlock them.” She felt insulted, took the clippers, and headed for the door. I went to the back of the house to put away a couple of things she had left in our bedroom last night. In a moment, I heard her call to me. I knew what she wanted. When I reached her, she was heading my way and held out the clippers for me. I unlocked them and showed her how it was done. I suspect that she hadn’t remembered that she hadn’t let me show her a few minutes earlier; however, I felt sad for her that she had been so confident that she could do it herself and then had to come back to me right away to help.