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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.

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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.

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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.

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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.

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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.

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A Better Day

Despite my anxiety for the past week, I have felt better today. That is largely because I finished my Rotary task (calling 25 members to get their pledges of participation in projects for the year), completed the budget for the music club, ordered tickets to The Met for our trip in December, helped Kate order a family album from Creative Memories, called Kate’s cousin who has been in the hospital, and called someone at church to check on flooding in her neighborhood. In addition, we are getting busier at the office. Although we have been making a gradual comeback, we are going to be busy from now up until just before Christmas. When I got to the office this morning, the staff was working out timing for the various projects. For the first time in 2 years, they will not be on furlough. At least through December they will work full time. They have been working only 4 days a week.

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Anxiety

One of the things that Barry Peterson touched on his book was the impact of caregiving on the caregiver. I have tended to minimize that, but during the past week or so I have experienced a sense of anxiety. It manifests itself in physical symptoms that have seemed either like a type of indigestion or angina. I have been doing my own self-diagnosis. At least 3 times I have felt it serious enough to take an extra aspirin when feeling symptoms. At other times I have taken Pepcid.

At this moment, I am feeling better. I do have a funny feeling that seems to be located in my esophagus above the level of my heart. Last night when I got into bed, I felt as though my heart rate had increased. I can only describe this as anxiety. I got up, took a Benadryl, ran in place for about 15 minutes, and got back into bed. I went to sleep rather quickly and slept well until Dad called at 4:27 this morning. As he does so often, he didn’t say a word. I would love to watch him when this occurs. What I imagine is that he is holding the phone out in front of him and can’t hear me say hello several times. When I have been with him I notice that he sometimes holds the phone upside down against his ear. Other times he holds the phone up to the side of his head but not over the ear.

This makes 2 days in a row that he has awakened me early. Yesterday morning he called at 3:30 and then again at 3:50. It was very difficult to understand him, but I got the message that he thought this was the end and wanted to say good bye and that he loved me. I never got back to sleep after that. I am getting to the point of debating about whether to tell him not to call unless he has some emergency, but I don’t want to prevent his calling if he really needs something. That does occur sometimes, but most of the time he simply wants to report that they haven’t brought him his breakfast or that nobody is around. I then tell him the reason is that it is the middle of the night and that he should just go back to sleep.

The point of my writing, however, is simply to say that I seem to be experiencing anxiety connected with all the things I have to do. Fortunately, business is better but I do have responsibilities for several other things – our music club, Rotary, the foundation, Sunday School, and another church responsibility I have just accepted. All that and being responsible for Kate and the household things as well as planning for Dad’s birthday party, our trip to NYC and our anniversary trip has made my plate pretty full.

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Odds and Ends

Right now I am feeling like there are a number of things that I would like to comment on, but I also don’t feel I have sufficient time to devote to it now. Let’s see what I can do.

Follow up on the iPad. After getting the iPad, Kate spent a good bit of time on it. She was primarily playing free cell. When she got her computer back on Tuesday, she gravitated back to it. She is trying to complete her photographic piece on Brian’s trip to NYC. It is virtually complete, but as is characteristic of her, she can’t let it go. I also noticed the other night as she showed me what she has done that she has some photos out of order in terms of the way she wants to present them. Organizing things like this are a nightmare for her. I have offered to help her, and she has said she wants it but not now. For 3 days now she hasn’t even turned on the iPad.

I am reading Jan’s Story by Barry Peterson, CBS journalist whose wife has early onset Alzheimer’s. I discovered this book when I started looking about AD that I could download from audible.com. It is an interesting account of his experience with his wife and how they tried to adjust to her disease. I am about ¾ through right now and will finish over the weekend. I find it interesting simply because it is another person’s experience with a spouse with AD. I do find, however, that their situation, the way her symptoms occur, and his personality make this a different experience from my own. To be sure, there are commonalities – signs of forgetfulness and attempts to compensate or cover by the person with AD, denial that the person has the disease, etc. Here are a few quick observations. I may give others after finishing the book.

1. As his wife, Jan, goes through initial stages all the way to her being placed in a facility, there are striking symptoms that are serious in the early stages and normal kinds of behavior in the late stages. My observation of Kate is that the only dramatic thing I have been aware of in the earliest stages was her panic over being lost while driving someplace. Otherwise, it seems like she is going through a gradual decline in memory and ability to handle everyday tasks. I was surprised to learn that even when Jan went into a facility, she was able to appear somewhat normal to others apart from her husband. I am assuming that if and when Kate is in a facility, everyone will know of her condition.

2. It is easy to judge other people, but Barry seems to have let Jan live and function on her own a lot longer than I think he should have. I think she was well beyond where Kate is right now when he would travel out of the country leaving her alone. He did have friends come in to check her medications and see how she was doing. Right now I would be concerned about leaving Kate overnight. Of course, it is easy for me to judge since I am virtually retired, and Barry was younger and in the prime of his career.

3. I find his discussions of developing another relationship discomforting. I am aware that this is a topic of discussion among caregivers, but I don’t like to think of my doing this before Kate is gone.

4. The entire story makes me more comfortable keeping Kate’s AD from the world. We still have not told anyone except for our pastor, our attorney, and another attorney with State Farm who is representing me in a lawsuit over an accident from 2009. My reason for this is that if she is able to function well enough that people don’t know what good does it do to tell them. I do still wonder when we will tell the children. At the same time I think the answer is when they start seeing signs of her decline. I also feel like this is in Kate’s best interest. She doesn’t want to be a martyr nor does she want to be a leader in a campaign to promote greater awareness of the disease. She is a more private person. She just one to be a regular person.

Right now I am wondering what she will be like next summer and how our visits with our children and grandchildren will go. This week I booked a house in Jackson Hole where the 3 families will celebrate our 50th wedding anniversary next June. Will the children notice anything after a full week together? We will see.

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Always New Frustrations

Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. That is why the computer is in the shop now.

A couple of times today she has had a problem doing simple things on the iPad. She simply can’t remember how to do things that she has learned recently. This goes back to earlier comments that it is the short-term memory that is the greatest problem. I try to help, but she hates to ask for help. She has expressed a lot of frustration today over her inability to do so many normal things.

In this regard, I am now in the planning stages of a family trip next summer to celebrate our 50th anniversary. After much consideration, it looks like we are going to either Jackson Hole or nearer to Yellowstone. It looks like a rather expensive trip between lodging and airfare for all of us, but I feel like this is a must and will be the only time we do anything like this. I am still uncertain of what Kate’s condition will be like after next summer. That is why I have arranged for the Galapagos trip next spring and the summer trip to Yellowstone.

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Life after Summer with Grandchildren

This summer was our best with grandchildren. Although we always enjoy having them visit us, for some reason this year seemed to be great in every way. Of course, the trip to NYC with Brian was a highlight, but we also enjoyed the twins as well as Taylor. They overlapped for 3 nights which made all 3 of them happy.

Taylor left a week ago yesterday. The following day I attended a symposium sponsored by the Alzheimer’s Association. Kate had received a brochure about it the weekend before and thought I might be interested in going. The focus was on understanding what life is like from the Alzhheimer’s patient’s point of view. I took her suggestion to mean that she might like me to attend; so I signed up.

Much of the information covered was repetitive, but it was good to hear what is currently going on in the field, medications, etc. The bottom line is that there are still no medications that clearly retard or cure the disease. One of the most interesting aspects of the program was a “virtual tour of Alzheimer’s. It was designed to give us the feeling that a person with AD feels. We put on goggles that blurred our vision, wore shoe inserts that had little prickly points, put us in a darkened room, and gave us quick instructions on tasks we were to do. It was hard to find items, we couldn’t remember the instructions, and general felt foolish and dumb.

That night as we went to dinner Kate asked me about the conference. I told her about the virtual tour, and she acknowledged that it was similar to the way she feels. We continue to see things that indicate the nature of the disease. One is that she doesn’t remember new things very well at all. That means if we decide to do something at one point during the day, she won’t remember it later. For example, we discussed getting a present for Jan Greeley whose birthday is today. They are due to arrive for lunch in the next hour or so. This morning when I mentioned the present for Jan, she had completely forgotten.