So how am I feeling?

A couple of days ago I had the thought that much of what I report is simply a description of what Kate or my dad are doing to give a picture of their present state. I should also be clear about how I feel about things and also how both Kate and my dad are feeling.

My general impression is that my own feelings move up and down depending on specific things and events surrounding Kate and Dad. For example, last Monday when Kate told me that she had gotten lost when she tried to walk to our neighbor’s house, I felt sad for her. It gives me pain to see her hurting, and she hurts when she sees how AD is affecting her. Similarly, we went to a local heater Saturday night. She didn’t applaud once during the entire performance and by the expressions on her face, I could tell she was not enjoying herself. I, on the other hand, felt the performances of the actors was terrific. They danced well, sang well, etc. I can’t say that I loved the musical itself but did enjoy the evening. While we were there I was feeling that she was letting her own judgment of the musical influence here judgment of the performers; so she wouldn’t applaud. When we left, I asked her about that. She told me that she was unable to follow it. I am sure that part of that related to not being able to understand much of the words. That may have related to the fact that the band was directly in front of us. I also think they simply played too loud and overrode the singers. At any rate, the moment she said she was unable to follow it, my feelings changed. Then I felt sad for her. It also makes me sad because I know that there will be many other occasions like this in the future.

As for my feelings about Dad, I have been discouraged about his progress since his fall a little over 2 weeks ago. I was particularly low one day last week when I entered the dining room to see him with his head and arms down on the table sound asleep. Besides that he has been more confused and much more like the other dementia patients at Mountain Valley. He still has moments of clarity, and I am hopeful that he will rally as his birthday approaches.

Busy Day

Yesterday was a Monday which is usually a routine kind of day. Here’s what actually happened. I got up and went to the Y as usual. Before leaving, I asked Kate what time she was to meet our neighbor to go for a walk. She told me 9:00 a.m. I reminded her that we had a funeral service at 11:00 and that she should meet me at the office at 10:30.

I received a call from her shortly after 10:00 asking if I could come home to get her instead of her meeting me at the office. I told her I would do so. When I got home she was quite flustered, and I told her to relax. She asked how long we had before leaving. I said, “Seven to 8 minutes.” Back into panic mode. She was also upset that she couldn’t find her slip. She remarked that she couldn’t ever remember where she put things. This is once again a reminder that the person with AD experiences much frustration and probably a lot of frustration that is never recognized by other people – even someone as close as a husband. I see the frustration on occasions like this, but I am confident there are many more that I never recognize, many of them that occur when I am not around or that she doesn’t mention.

We got away in about 10 minutes. I put on the second movement of Brahms violin concerto. I consider it one of the most relaxing pieces of music I know. I asked if she had taken her walk, and she said she didn’t want to talk about it right then – that she might feel comfortable talking about it later.

We got to the church in time. Before leaving I thought it might be good if we went to lunch together instead of my going to Rotary at 1:00. She liked that. At lunch, she asked if she could have a glass of wine, and I said yes. We both had a glass. We took our time before going to the buffet. During that time she told me that she had called the neighbor to tell her she would need to take a shorter walk in order to get to the funeral. The neighbor told her to come by her house to get her. Kate couldn’t find her house and then got confused about how to get back home; so she never got to walk. She called her when she finally got back home.

At any rate we turned the whole thing around into a very special time for the two of us. We had a leisurely meal in a quiet place and let the worries drift away.

Other things were also going on this day. I had received a call from a hospital client on Friday asking me if I would interview 4 patients who had undergone bariatric surgery. I agreed to do so. My contact was to email me right after we spoke with information on the location for Tuesday morning (today) as well as an agenda for the interviews. I still had not heard from her when I left the office around 10:15 am. Late in the afternoon I picked up an email sent at 1:00 with location and times. Even later I got the interview guide.

In addition, I had talked with the admissions office at Mountain Valley on Friday about moving Dad from Hall 100 to Hall 200. She was supposed to call me yesterday morning. I called her, and she said she would get “right back” with me. She never called. I called near 3:00 p.m.The person with whom I had sphad gone for the day. The person I spoke with this time agreed to let me make the move even though the staff that handles moving would be gone for the day.

I went to Mountain Valley right away and took care of the move. It went smoothly. Dad has a new roommate that may work out better than the one he left simply because the old one stayed in the bathroom for an hour or more at a time. The new roommate appears to be a dementia patient who is not communicative.

Dad, by the way, has not fully recovered from his fall a couple of weeks ago. He seems more confused and less like himself. He is eating reasonably well and is able to talk with you all right except for not hearing well.

On top of all this I am also mentally preparing for 8 weekly meetings with a small group I am leading at the church. We start tomorrow night. This will not be hard. It is simply a responsibility that I am not too eager to undertake at this time.

Dad Is Recovering

Dad has continued to improve, and I am optimistic that he will be better this afternoon when I visit him. Yesterday he was better, but he was grouchy and erratic in his behavior and comments. Part of this is normal for him. For example, he will say that he won’t eat something and then almost immediately start eating it. I took him some sliced peaches which he said were too hard and he wouldn’t eat them. Then he proceeded to finish them off.

I am trying to reshape my expectations for the staff at Mountain Valley. I simply think it is too difficult for them to do some of the required things and also develop a good sense of how an individual patient is doing. I feel I am going to be more observant of Dad’s condition than they are.

This week I am hoping to move Dad to another hall – 200. I have already discussed this with the social worker, and have identified the room to which he will move. Not sure that this will make any difference but Dad’s speech therapist believes it is a better hall.

Dad’s Fall

Thursday morning at 3:30, I received a call from the night nurse on Dad’s hall. She was letting me know that Dad had taken a fall and cut his head and that they had called 911 for an ambulance to take him to the emergency room at UT Medical Center. He came through pretty well. Neither the CT scan of his head nor x-rays of his hip and leg showed any ill effects though they said to watch him over the next couple of weeks.

That night around 8:00 p.m. he called to report that there were a lot of people in his room moving things. I told him I would call the nurse’s station to see what was going on although I suspected he was imagining or had had a bad dream as he sometimes does. When I spoke with the nurse, Frederick he had just come from Dad’s room and there was no activity.

Yesterday I picked him up to take him to a surgeon to see about his tumor on his right arm. When I got there, he was still in bed. They had not gotten him up and ready for me. His call button was not in place. When I tried to get him up and into his wheel chair, I found it quite difficult. He simply wouldn’t wake up.

Getting him into the car was quite difficult because he couldn’t help much. He appeared to be drugged. The nurse on duty, said he had been up a lot on Thursday night and was probably just sleepy. This bugged me a little because it obviously showed that she is not sensitive to what he is normally like. Getting him out of the car, into the doctor’s office, in the car, and into Mountain Valley was difficult. Dad was simply out of it.

I told the nurses to watch him, that I felt he was not normal. They had him in the dayroom trying to feed him when I left him.

It’s the little things.

In an earlier post I mentioned that it’s the decline in Kate’s short-term memory that seems to be most obvious change that is occurring. That is what will finally cause her friends and family to suspect dementia. Here are several recent examples.

1. I just arrived home (10:20) from getting to the hospital at 4:00 this morning after Dad took a fall around 3:00 a.m. She was working on something for PEO and didn’t even ask about Dad. I think she remembered that he had had a fall, but I dont think it was sufficiently present in her mind to automatically ask how he was doing.

2. When I drove up to the house, I saw her glass of iced tea at the curb in front of the house near the mailbox. No doubt she had been doing some pruning around the shrubs and put her tea down. Then she finished without remembering that she had put it down.

3. Last night she said she had lost the power cord to her computer. I walked into her office where I had seen her using the computer yesterday afternoon. The power cord was right by the chair. This is an interesting symptom because it is not just forgetting where she left the cord or where she last used it, but she also has trouble focusing on things when she is looking for them. I am remembering my recent participation in a virtual dementia experience in which our eyesight was diminished with dark light and goggles. I simply didn’t see things that I would have seen otherwise.

4. On Monday of this week I did a little trimming of some shrubs that Kate had asked me to trim. As I was doing so, I found some clippers in the space between the shrubs and the house. She had no doubt been using them, put them down, and then forgot them.

5. One morning this week I left for the office while Kate was out on a walk with a neighbor. As I got close to our street, I saw Kate walking by herself in the direction of our street. Later I asked her about that. She gave me a funny look that made me think she didn’t want me to ask. (Incidentally, frequently she doesn’t want me to ask her about something and has developed a short hand way of communicating that. She says DNA (Do Not Ask.). Then she explained that she and the neighbor had finished walking and as she was returning to the house she walked by our street which is almost a half mile from where I saw her. Because she has always been geographically challenged, I fear that this is one of those things that is going to get us in trouble sometime. We have now had a number of mini-crises surrounding this. The first was in Birmingham when she and a friend had gone to a shower for niece. She has had several similar experiences when going to PEO. One of the most dramatic was when we were going to meet our son, Kevin, and his family at the airport a couple of years ago. She was supposed to meet us there. When she hadn’t arrived in a reasonably length of time, I called her. She was in downtown Knoxville and had no idea how to get to the airport. All of us packed into my car and met her so that she could follow us home.