The fact that my daily routine now includes spending much of the day with Anthony in the nursing home means that I don’t see his deterioration except in tiny increments, day by day.
Yesterday one of our friends visited Ants and she was just leaving as I was arriving. She is the mother of one of my best friends, nearly Anthony’s age, and has her own health problems and yet still visits Anthony regularly – an unbelievably kind and generous person but today a bit uncertain.
“I don’t think he knew who I was, Julie,” she said.
“Maybe I talk too much and it upsets him,” she said.
“Can you let me know if my visits are helpful or not?” she asked.
She was quite distressed at Anthony’s unresponsiveness and wondered how I coped with going in every day. Didn’t it get me down? I told her that I hardly ever got down any more and actually looked forward to going into the nursing home. She looked as surprised as I feel about this miracle. I am surprised that my relatively newfound eagerness to get into town to see Anthony every day has been so sustainable because I was a bit nervous that it might kind of wear off!
Now I know for sure that it will never wear off probably because I’ve accepted the status quo and am prepared for what lies ahead. Our friend’s distress at seeing Ants so deteriorated yesterday, sort of chair-ridden and blank, unable to respond verbally and very sleepy, was only because she hadn’t seen him for a week or so. I guess it’s a bit like noticing how much a small child has grown if you haven’t seen that child for awhile; it’s a bit of a shock.
After our friend left, I went into Anthony’s room and said, “Didn’t you recognize M?” but he said yes he had. I could see, though, that what might have disturbed M was the increasingly blank expression on Anthony’s face which is partly due to his facial muscles not working because of the Parkinson’s disease, including not blinking (which makes him look both sad and angry), and partly due to the confusion of dementia.
Of course Anthony is only going to get worse, more confused, eventually bedridden and totally unresponsive, so I am developing a more tactile and rather boisterous relationship with him instead of pushing the conversation thing. After all, his voice is now so soft and his words often unformed, so we need to establish a way to communicate that transcends the verbal – almost like a code. This has included hand-holding, neck massaging, sitting on the arm of his chair with my hand on his head, and/or loudly beckoning him out of his slumber with a funny anecdote from the past, clowning around and bopping to music, asking him for advice with a nod or shake of his head, watching dvds of television series he used to love, laughing and being cheeky (I have a rather raucous laugh which I make the most of in order to see his slow smile), and lots and lots of hugging.
The following photo is my usual profile picture and it’s a bit of a shock to realize this was five years ago!
Then I just discovered this one, obviously taken seconds after the first photo. I can’t wait to show it to Anthony later today! I hope it will make him smile my smile.
jmgoyder 