In New York

In New York

Saturday, 26 January 2013

Ladies who lunch

On Monday, I had lunch with a fellow MND wife. It's been some time since we met up and she was struck by how well Roch is doing, how slow his rate of deterioration compared to her husband's faster decline. This gave Roch and me food for thought. I was shocked to hear how her husband's condition has worsened in a relatively short space of time.  I  am so glad we met up but it's impossible not to feel close to overwhelmed by the vision of the future that she presented to me. It's best not to look too far ahead, perhaps. I am so grateful that Roch and I have been granted time to adjust to the changes, the losses. They have not been so lucky. A question I think many MND Carers must ask themselves is "Have we reached the 'messy' part yet?"  I completely related to her when my luncheon companion expressed this thought. She thinks they have. I think we are not there yet.
Over our cosy pub lunch, by a roaring fire she and I covered many MND topics. PEG feeding, nose twizzling, cold feet and venting; frozen shoulders, back strain, dry skin and grieving. We talked about our shared experiences, the many frustrations in our daily lives as Carers - we puzzled over how to resolve our feelings as wives/partners thrust into the roles of nurse, carer, babysitter, the constant demands on your time and what it does to your relationship. We talked about our children and how to resolve the conflict of prioritising their needs. We talked about what we needed to survive and how to go about getting it.

When Roch was diagnosed, a good friend said to me "It hasn't started for you yet." I was angry - of course it has started I thought, as I saw all my hopes and dreams for our future together come crashing down around my ears. But I know what she meant. I think I did even then. She meant, we haven't reached the 'messy' part. When he can't speak or move at all, when you have to do absolutely everything for him. When he quite literally can't lift  a finger. We are still on our way, but we haven't got there yet. Meeting my fellow MND wife made me realise that. We are lucky.
We haven't reached the 'messy' part.
So, January still sucks but it could be a whole lot worse.

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