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Strange Behavior

Kate came in from outside a few minutes ago. She stopped about 12-15 feet in front of me with a puzzled look on her face and said, “Something’s going on.” Then she didn’t say anything. I stood up from the sofa and walked over to her. I tried to get her to explain. She struggled to find words. I asked if it involved somebody else. She didn’t answer. I asked if it involved her. (Something she said made me think that she was worried about herself or something about herself.) She said yes. I asked if she was afraid. She said yes. Then she said that maybe she just imagined it. I couldn’t get anything more. She was quite hot from having been outside. I asked if she wanted to cool off. She said she did and wanted to go get something to eat. We had just eaten about an hour earlier; so I knew she probably was not hungry. I also know from past experience that she sometimes says she wants something to eat or drink and then promptly forgets it. It did turn out, however, that she wanted to get out of the house.

On several afternoons when she has wanted to “get out of the house,” I have mentioned going to Barnes & Noble. In each instance, she has said no and reacted as though it had been a silly suggestion. That has led me to take her back to Panera. It is often hot in the afternoon there; so I was looking for another place. Figuring that she simply didn’t remember that B&N has a cafe and tables where we could camp out the way we do at Panera, I brought her to B&N without telling her where I was going. She never raised a question even upon arrival. We just got out of the car and walked in with our cups and iPads and my laptop. I picked out a table, and she sat down. I got each of us an iced tea. We have been here over an hour, and she hasn’t gotten up from her seat. She is still working puzzles on the iPad. I will come back again. It gives us a good alternative to Panera.

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More Signs of Decline

It’s too early to be sure, but it appears to me that Kate is going through one of those sharp declines I have heard other people talk about. I just hope this does not signal something more drastic than what I have observed this week.

Tonight we had dinner at Naples, a local Italian at which we eat once a week. I order chicken Parmesan for Kate one week and lasagna the next. Tonight it was the Parmesan. Right after we got in the car, she said, “They make a good pizza.” We’ve only ordered a pizza there one other time, and that was the first or second time we ate there about two years ago.

Before coming back to our bedroom this evening, Kate called from the kitchen. She wanted to know how to turn off the kitchen light over the island. This is the primary switch we use all the time. When I showed her the switch, she said, “I thought it was there; just didn’t know which switch.” In fairness, there are at least 6 switches, but this is the first time I have ever known of her confusion.

As usual, I feel sad for her and anxious for myself. I know that she doesn’t show any signs of frustration, but I still feel sad to see her losing so much of her ability to do everyday things. I feel anxiety thinking about how I will adjust to the future. I know I will adapt, but I fear the future right now.

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Other Signs

After Kate and I got home from lunch today, I came inside. She wanted to pull leaves in the backyard. I had a 2:00 doctor’s appointment and had decided to take her with me rather than leaving here home alone. When I told her I was taking her, she didn’t question it at all. The same was true the last time I paid a visit to his office. My plan was to leave the house at 1:25 in order to be there 15 minutes before hand. At 1:10, I went outside and told her it was time to get ready to leave. She said she wanted to change tops. I told her that would be fine, but we didn’t have time for her to take a shower. She didn’t like that, but I thought she had agreed. I gave her a few minutes to change. Then I went back to her room where it appeared that she was getting ready to put on clean clothes. I told her I was just checking, that we needed to leave. I left her again. When I went back, she had just gotten out of the shower. I told her it was time to go and to hurry. I hate doing this, but she moves as though time doesn’t matter at all. Then I said, “I really need to go.” That led to a panic attack that didn’t fully cease until after we were in the doctor’s waiting room. What really bothers me more than that I caused the attack is that she is then so sorry that she has upset me.

We are now back home. She was fine even before we left the doctor’s. That is one of the positive things about Alzheimer’s. Shortly after we got home, she wanted to go outside to pull leaves. She asked me if she could do so. I told her she could. She asked if she could pull leaves in front. I told her she could. She came inside and put a shirt on over the top she was wearing. I was here in the kitchen. She walked in and asked if she could go outside. Again, I said she could. She asked if she could use the clippers. When I told her yes, she gave me a look of surprise as though I sometimes say no. I don’t ever recall doing so.

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Symptoms of a Decline

Since my post the other day about the possibility of Kate’s experiencing a sharper decline than I have observed in the past, I have thought a little more about what it is that makes me feel that way. I obviously felt strong enough to start filling out a claim form for long-term care insurance, to call the insurance company for some answers, to contact an in-home agency, and sign a contract for services beginning in September.

My answer is this. It isn’t a single behavior that makes me feel this way. It is a combination of little ones. I do believe the pruning of our neighbor’s shrub was an important sign, but it is also expressed in more signs of confusion than usual. She has been acknowledging that she can’t remember things. She seems a little more childlike. She is regularly accepting my offer to get her night clothes for her. It is also the increasing problem with salivation and lack of concern for her appearance. I also noticed two other things yesterday. She spit on the carpet at Panera. When we came home, it was raining. She had several used paper napkins in her hand. She just threw them on the drive back of the garage.

I hope, of course, that I am wrong about getting a signal that she is on a steeper decline, but these signs make me thing she is.

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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.