I just left Kate in her office where she is working on the invitation to Dad’s 100th birthday party. She started on this about 6-8 weeks ago and had it virtually done. I had given her some edits, especially a couple of pictures I wanted instead of the ones she had put in. I have been diplomatically (I think) trying to get her to finish as soon as possible so that we would not be in a rush near the end. I plan to mail them out next Thursday or Friday. Several times over the past 2 weeks, I have mentioned that I wanted us to finish the job. She forgets and doesn’t get to it. Then when I nail her down and say let’s do it now, she starts to edit more and more the way she did on the album for her mother’s family she had done with her brother Ken. At lunch today I said we would come right back and print the invitation before final edits. She first had to take care of watering plants. Then she came in. I just found her editing some more, and all I want is to printed them. When we tried last week, it was printing too small. We have to solve that before we can go any further. At this point, it would be easier for me to take it to Staples for printing, but I don’t want her to feel bad. In the meantime, I feel frustrated because we should not have found ourselves into any last-minute rush. This kind of thing has become the norm though.
Yesterday as I was leaving Mountain Valley, I had a brief conversation with the woman who owns the dress shop where Kate buys a lot of her clothes. Her husband is there on rehab and will be going home next week. She had mixed feelings about his coming home related to the responsibility of caring for him. She noted that he has so many needs and is always asking her to do things for him. I shared a similar feeling about Dad. I do so many individual things while I am with him that I wonder how he gets along when I am not there.
That led me to think about taking care of Kate after her colon surgery as well as her foot surgery. It seemed like she was always asking for something. Of course, she was. After all, we go about our daily activities doing a lot of things for ourselves. When we are handicapped, we don’t want to give up everything. Naturally, some of the things we want are not frills – e.g., medications, especially those for pain.
My point is that it can be hard for the caregiver even if the patient is considerate. They have many needs that require attention. This also made me think of something yesterday. When I got home after Kate’s PEO meeting, she was not home and all of the dishes were on the kitchen counter and the island. Plates had been rinsed but serving dishes were mostly sitting with the remains of food. I cleaned up almost all before Kate got home and took care of the balance after we returned from a reception at the foundation. She never said a word. It was as though she never noticed that it was there to begin with. I didn’t fret over this, but I did have an immediate feeling of not being appreciated. On balance, however, she is quite good about making me feel appreciated, but there are lots of things she doesn’t notice because of her AD. This was one example and there is no good reason to get hot and bothered over such things.
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.
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.
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.