An award for caring
Ray and I joined the WAGS (Working Age Group for Stroke) in August 2006. Ray had already joined the weekly at that time discussion and lunch group for men called Scallywags and was enjoying the male company. When a man has a stroke and has to stay home with his partner he can really miss the kind of company he found by working so Ray really enjoyed meeting with the other Scallywags. I just enjoyed the time to myself as at that time I didn’t have carers coming in and Ray and I were together 24/7.
I’ve blogged a lot about WAGS over the years, the meetings, the personalities, the Women’s Weekends, the Carers Dinners and Lunches. The people of WAGS have been a big part of our lives. It has been our “real life” support group. Ray hasn’t been to Scallywags much this year. He has had so many things happen to him and although he can’t walk at all now his mobility has not been good all year. We have only been to a couple of meetings too and I haven’t been to any of the luncheons.
Despite our absence our friends there have not forgotten us and decided to nominate me for “Carer of the Year”, an award handed out at the Stroke Olympics held north of us at Newcastle each October. Ray and I have never been to one but the reports we have had back have been glowing as our caregivers and survivors come back with medals for scrabble, putting, darts, croquet and a dozen or more simple sports. Everyone says it is a great fun day.
On Wednesday night I got a call to say I had been awarded “Carer of the Year” for supporting other carers both locally and internationally through my work here on Strokenet. I was amazed and humbled as I am sure there were many people more worthy of the award than I am. So on Thursday the secretary of the WAGS group and her husband delivered a trophy, mine for a year and an inscribed glass plinth which I get to keep. I was really overcome by receiving it. It is not something you think about when you are a caregiver that some organization will award you for what you do out of love.
So it is down to the amazing people here that I got this award. Without your support and encouragement I doubt I would have been able to keep going looking after Ray for as long as I did. You all know how sterile life can become and how burnout hangs over us all like a little black cloud? Well the support of all of you allowed me on many occasions to ignore the cloud and wait for the sunshine to come out again.
I’ve told Ray about the award but I doubt he took the information in. Even the news that we are to become grandparents again in June seems not to have been stored. Trevor told him once and I’ve told him a few times but he still seems not to remember. I don’t think his memory works on much now. He is a dear soul, my soulmate, and I visit, sit with him in his room, in the common rooms and in the sun out in the courtyard. I read to him, help him have lunch, even help feed him when he seems too tired to hang onto the spoon or fork which is happening more and more now. But I know he will not even remember I have been there some days.
If I seem a bit sad these days, I am. It is taking a lot of time for me to reconcile myself to this parting of the ways, this separation due to illness. The finality of it is cruel. I am here sitting in front of my computer but he is not just in the next room gently snoring, he is miles away. After 43 years it is not death that has parted us but stroke damage and dementia. And of course I know I am not alone in this as I see the sad farewells in the nursing home every visit as one goes “home” and one stays behind to be taken care of by others.
Why did the last stroke take so much from Ray? Why didn’t he recover 80% of what he lost as he has with some of the others? Or is recovery of 80% less and less likely to happen? I try to keep optimistic, to keep praying and visualising him well but it doesn’t seem to be working this time. All I am asking is for him to be well, to survive this weekend without another seizure, to be able to hold a conversation, to give me a smile, much the same as I was wishing for Mum a few years ago. It seems such a little to ask.
But never fear acceptance will finally come as it has so many times before. With each change comes some challenges, a struggle to rationalise, an attempt to philosophise and in the end an acceptance of the new reality, the “new normal”. We all have to go through the process, survivors and caregivers, each of us fighting to keep back from the edge of depression and the black hole that will swallow us up.
I get by with a little help from my friends...as usual.
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