Mary Ann went to bed at about 9pm last night. Once she settled, she did not get up until 12:15pm today. That is fifteen hours straight. When I went to the bedside commode to clean it today, it had not been used at all. She was not up even once.
I said in last night’s post that I hoped to get to bed earlier than usual. I was in bed by 10:30pm (usual time is 12-1am. I slept in until 8:30am and got my shower done quickly in case Mary Ann needed me. After getting showered and dressed, since she was still sleeping and there was a quiet rain with soft rumblings of thunder in the distance, I lay back down on the bed. I also did not get up again until 12:15pm. And people ask what it is like to be retired!!
The rest was very much needed for both of us. Mary Ann was not so confused today, nor was she in that intense popping up mode that is so difficult for me to deal with. The symptoms that suggested to me that I might be coming down with something seem to have subsided also.
Mary Ann ate well, only two meals due to getting up so late in the day, but substantial meals — with a large bowl of Ambrosia Salad as a snack in between the meals. There was some much needed intestinal activity, demanding my participation. There was some fainting that made that job more difficult, as usual. She was able to sit up in her chair most of the time when she was in the living room.
Volunteer Deb came over to spend the evening with Mary Ann while I attended a choir rehearsal at the church from which I retired. I was asked to sing one of the parts in a trio that is part of a larger piece to be sung by a combination of area choirs at a concert concluding a number of months of music activities. This is the first commitment I have made in a year and a half, other than doctor appointments and that sort of thing. Mary Ann’s needs at the last minute resulted in my being unable to honor a somewhat similar commitment a year and a half ago. At that time, I concluded that I simply could not commit to anything outside of Mary Ann’s care.
This time I have put in place coverage for Mary Ann that should assure my ability to honor the commitment. Since my little part in the piece impacts the rest of the choir I can’t in good conscience just bail out at the last minute. There is a paid Companion Care Aide from a Home Health Care Agency (Home Instead) who is scheduled to be with Mary Ann during the time of the concert itself. Aide Debbie knows Mary Ann very well from having come each Sunday Morning to be with her for a year or two before I retired.
It was good to be singing again. I struggled with my own ability to read music tonight as I sat with the choir, trying to sing along. Singing in choirs and ensembles was the center of my school years. I got to serve as student conductor of five choirs spread over high school and college years. After that I sang in two Seminary choirs during those four years of graduate level schooling. I sang in Schola Cantorum, a semi-professional choir sponsored by the American Guild of Organists for a number of years in Kansas City. It is hard to accept struggling to read what would have come quickly in earlier years. When I complained about that to the barista at the coffee shop on my way home tonight, I noted that the last time I had sung regularly was in 1987, when we left Kansas City. The barista is of college age. She immediately put into perspective the reason I might be a little rusty. She was born in 1986. How on earth did I get so old so fast!
As I was anticipating retirement and full time care of Mary Ann, I had visions of all sorts of things that I might do without 60 hours of commitments to my job as Senior Pastor of a large church filling my week. I knew from the days and parts of days I was by myself with Mary Ann that it would be very hard to do other things. The fall after I retired, reality set in. Because of the vacillations that come with Parkinson’s, along with the addition of the Parkinson’s Disease Dementia, making those vacillations even more dramatic, it soon became clear that I could not commit to anything other than her care.
There are a number of folks in the online group of those in situations similar to mine, who are able to keep a few other activities in their lives on a regular basis. I made a choice to just do the one thing. I did it realizing that for me, the stress created by trying to manage regular commitments in addition to Mary Ann’s care was more than I could handle. I still have no idea how, even with all the Volunteers, I survived the last seven or eight years before I retired. I doubt that without our Daughter and her family’s move here to help out the last couple of those years I would have made it. I continue to be grateful for the Staff with which I worked, who seemed to be willing to do anything to help, and a congregation with very understanding leadership, willing to do the same. It is beyond comprehension that so many in the congregation were willing to give so much of their time and energy to help us in our day to day survival, some still doing so.
As I have said many times before in these posts and elsewhere, while I would not wish this horrible disease on Mary Ann or anyone else, I am in awe of what compassion in action has surrounded us on account of it. I can only hope that those expressing that compassion have found some meaning and fulfillment in doing so. We cannot repay what has been given so freely. We can say thank you. It is all I know to do.
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The Caregiver Calling 