One of the most difficult situations, when caring for and/or about a person with dementia, is how to make sense of that person’s unflow of words, or else silence.
Anthony’s previously loud voice has, over time, diminished to a whisper (Parkinson’s disease) and his ability to put words together coherently has been affected by Dementia. So conversations (as in the ‘dementia dialogues’ I write about from time to time) are becoming more and more difficult. Sometimes I find myself trying to interpret sounds, rather than words, and sometimes I find myself trying desperately to read his silence.
I haven’t seen Anthony for five days because on the weekend Ming, Meg and I attended my nephew’s fantastic wedding down south. This was an eight-hour return trip so we stayed the night.
And now I have a cold, so my determination to get to the nursing home in the late afternoons has been thwarted despite good intentions. The guilt, and missing Anthony, is difficult to cope with but obviously I don’t want to spread germs in a nursing home environment.
One of the greatest comforts to me is the relationships formed with other bloggers and it has been wonderful to reconnect with them over the last few days. I was feeling guilty about not reading other people’s posts when they were reading mine but I now realise that blogging doesn’t need to be like that and that people are more than understanding of bouts of silence.
At my nephew’s wedding, I was, as we all were, filled with joy for the happy couple and their gorgeous little daughter. But, later in the evening, I experienced a moment of such intense misery that I could hardly breathe because of Anthony’s absence. My nephew and Ants have always had a wonderful connection, and I know that Anthony would have wanted to be there. Anyway, Ming got me through that moment and I went back to party mode -ha!
A few weeks ago, this was my short conversation with Anthony:
Me: Ants, is it okay if I write a book about you?
Me: But why not?
Anthony: Because I don’t exist.
I will never know what Anthony meant by this; was he being cryptic, humorous, philosophical? Was he being deliberately or accidentally poignant?
As Anthony becomes more silent, these transcribed ‘Dementia dialogues’ have become absolutely vital in terms of giving me conversational cues. Topics like the town he grew up in, our son, Ming, various nephews and nieces, farming, fences, cattle, the dairy …. all of these topics are interesting and important to Ants.
Eventually, Anthony will probably be totally silent so, from now on, I am going to record every single word he says.