In New York

In New York

Sunday, 22 April 2012

The Carer's Assessment and its aftermath...

First things first - Helen and Judy - thank you so much for your words of encouragement. I value every comment and am so grateful that you read the monkey blog. Helen - was that really your husband in the clip?!!! Our MND community is a small one, they say - and they're right. Some day it would be nice to get together...

The Carer's Assessment

Two weeks ago I had a Carer’s Assessment. It felt very odd, being asked questions about myself and how things were affecting me. But it felt good, too. If felt good to be the centre of attention!
 As I answered the Social Worker’s questions I realised just how much our lives have changed over the past three years, over the past two years, in the last six months. I suppose what I’m trying to say is that reality really hit home. I have talked in this blog and elsewhere of being a Carer, of how our lives have changed – but to be fair, it’s been gradual enough. I have more or less blithely gone about my business, doing what needs to be done. That’s my life, the life of a Carer, it’s just the way it is. As I answered specific questions about what I do, what his capabilities are now and how they have decreased, how much time I spend each day doing various tasks etc. I began to realise just how dependant he is on me and how much more dependant he will become. The full force of being a Carer hit me.

After my interview, I saw a support worker. Now I know why they make themselves available after Carer assessments. I can’t remember when I last cried, cried properly – not just eyes filling with tears or feeling my throat constrict suddenly. But proper bawling. Yes, there I was, with a complete stranger, sobbing my heart out.  My counsellor will be proud of me. The floodgates opened at last. I cried for him, for me, for the children – I cried because I felt overwhelmed by the responsibility – because I looked at my life and thought – what was I thinking? How did I think I could do all this? Work, look after Roch, look after the house, the garden, be all things to all people. Afterwards I was exhausted. I pulled myself together with difficulty.

The day after my assessment a work colleague happened to ask how Roch was and I started to cry. That’s not so good. I got through that day, though, stayed late and did as much as I could. But over the following few days I felt distinctly ‘flaky’ – very tired, low in mood and low in energy.  I worked my first day last week (a Wednesday) – feeling ‘flaky’ but happily rising above it to successfully lead a training session for volunteers – only to wake at 5am the next morning with a migraine, which proved unhappily persistent. Next day, I felt worse! I came to the conclusion that I had picked up a virus. Maybe I had. Or maybe it’s psychosomatic. Maybe my migraines and back pain are symptoms of repressed rage (thanks Lerick and I am reading the book you sent – there is so much anger). Or perhaps my body simply told me enough is enough – you have to go to bed now, you have no choice. It was right, I had no choice. Once the pain shooting through my head receded, I slept and I rested and I slept some more.

So today, I had more energy. I tidied, cleaned and did some ironing. I stripped sheets and changed the bedding. I sallied forth to buy supplies, basics like milk and bread, eggs, garlic sausage, the Guardian and beer for Roch. I finished a story I was writing. I made a delicious, nourishing milkshake for Roch, following advice given by Roch’s nutritionist and here I am writing this blog at 12:40am. What is that telling me? That I’m crazy? Will I have another migraine tomorrow? God I hope not. But I am probably crazy - or have I climbed out of the trough, the slough of despond? It seems so. There are so many reasons to stay there – I know some of you Carers out there would be able to hand me a list, but not one of you would linger there long. I was there for a while and perhaps I will find myself there again tomorrow. There’s no doubt I will find myself there again sometime but hey – that’s what being an MND wife is all about. Pick yourself up, dust yourself off, and start all over again.

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