As a carer for my mum I am eligible for respite care.
Of course, I get a lot of support all the time. We have a care package that means that professional carers come in four times a day and once at night. They see to mum’s personal care and move her from bed to chair and back again – she can no longer walk herself at all.
But I still have to see to meals and drugs and groceries and laundry. And mum now gets very anxious when I leave the house even just for an hour. So, in turn, I get anxious.
I hadn’t ever really imagined that this would be my life at 66. It just seemed to happen. And I can’t claim that it involves huge amounts of physically demanding labour because it doesn’t. But gradually, as mum’s independence has seeped away, I have found myself less and less able to plan anything. Spontaneity has been replaced by a sort of stasis where I spend far too long at a screen not really doing anything, yet feeling unable to break away. And this is complicated by the very real presence of what we could call “anticipatory grief”. That’s a rather academic term but anyone who has cared for someone at end of life or with dementia will recognize it. A sense of already losing someone even though they are still physically present. As a celebrant I know the importance of the funeral ceremony in providing a clear focus for grief. But this anticipatory grief just seems an endless background sorrow, lacking the definition of a clear loss. And I find myself feeling guilt that I might be “using up” or expending my grief “too soon”. It lends a different meaning to the phrase “the long farewell” that I recently wrote about.
So I value those opportunities for respite even if they only make the return harder. This time I went to see friends in London and Dumfries and Glasgow. I went to a wonderful exhibition of Zurbarán at the National Gallery. Had some lovely meals (thank you Arfan, Sebastian, Helen, Adam, Marian, Justin, Aileen – and for almost having prosecco, to Carrie and Jane!). Caught up with my dear friend and colleague Gina Tarditi Ruiz from End of Life Studies days at Glasgow University.
At one point I sat on Dumfries railway station waiting for the Glasgow train. And I recalled a family holiday that I’d spent as a boy in Dumfries. Actually, I don’t remember very much about it. I know that we stayed in a house belonging to the daughter of a neighbour. I remember the garden wall overlooked fields and that cows would come right up to the wall to greet us. I know my mother was there but my seafarer dad was probably away at the time. I don’t know how we travelled there but we didn’t have a car so I imagine we came by train from Falkirk.
A young woman, a sailor’s wife but effectively a single-parent most of the time. It can’t have been much of a respite for her to travel with two children to Dumfries, swapping one house and the cooking and chores for another. And she had me, a young boy, and my infant sister, totally reliant on her.
Things come full circle, don’t they? Now at 91 it’s mum who is totally reliant on me, my sister, our carers.
It would be dishonest to say that such thoughts comfort me or “make it all worthwhile”. But I suppose at least they give me a context for this phase of my life. An appreciation of the reciprocity of care, sparked by the strange fleeting echo of a moment almost completely forgotten – a young woman sitting on a platform holding her luggage and her responsibilities, and waiting for the train to Glasgow.
