In New York

In New York

Saturday, 22 September 2012


The MND Carers Support Group meets on the third Monday of every month, in Richmond Oddfellows Hall. I've talked about it before in the blog, but I think it's worth mentioning again.  Last Monday I was late and was the last to arrive. No sooner had I taken a seat, than Mick had risen from his own to make me a cup of tea. It's like that, very welcoming and distinctly non-threatening. It's still in its infancy - there is no fully formed group, there are new faces there every time, and some familiar ones too, for me. One participant told me she felt like she knew me and my family well - because she had been reading the blog!
Each meeting is facilitated by two volunteers (one of whom is usually Mick Stone, who set up the group). Janis Parks was there on Monday. She is the Chair of the West London & Middlesex Branch of the MNDA. Having them there makes it feel safe.  I was nervous at the beginning because at my very first Open Branch meeting I had felt overwhelmed by the emotional needs of other carers. This was something I fed back at the time and spoke to Mick about, too when he asked me whether I thought a Carer's Group was a good idea.  He assured me that the meetings would be managed and that they would be facilitated by two people. It works for me.
Monday's meeting was held to the background noise of a tap dancing class being held upstairs. It was a little distracting at first, but kind of cheering at the same time. I think we managed to block out the noise eventually. The ballet class afterwards felt less intrusive - a kind of dusty, muffled shuffling. There was something life affirming about holding our support meeting to the sound of people learning to dance. Life's rich tapestry...
Certainly life's rich tapestry was reflected in the experiences of the Carers present. We all had an opportunity to talk about our own situations and how we were feeling. As always, it feels much easier to talk about the people we care for and to ask for suggestions/advice on practical matters from our fellow carers - rather than examine our own feelings and how things are for us as individuals. Maybe it's because we're not used to each other yet? Maybe it feels like that might open up a bit of a Pandora's box and we're not ready for it? I don't know the answer. Time may tell. There was a general acknowledgement of a shared feeling of frustration -of  the difficulties faced when dealing with professionals who don't understand, who dismiss the Carer's input - hospital staff and occupational health therapists alike. An affirmation from people who do know what it's like - fellow carers - that we are all doing the best that we can. Encouragement to continue.

I found it helpful to hear that other Carers sometimes feel irritated by the unceasing demands made on their time - irritated and resentful, even. I share those feelings sometimes. We all agree that breaks are important and that when respite is offered, we should take it. It's hard to be patient all the time.

When Roch was first diagnosed, a close friend confided that what she would find difficult would be not feeling able to shout at her husband when they had a row! I told the group on Monday that we still do shout at each other - like any healthy married couple. I told them the tale of a recent row - during which Roch said to me "Try to think of me sometimes." Or words to that effect. This remark elicited a most satisfying response from my fellow carers, who howled with appreciative laughter, knowing that it would have been impossible for any of us not to respond to such a remark. As I said to them, "Every waking moment..." I didn't even have to finish the sentence. After the row, I went for a walk - Tom was at home with Roch, so I knew he wasn't alone. I was also acutely aware that I was doing something he was unable to do, and I couldn't help feeling bad about that.  I could just up and leave - walk briskly down the road to get some space. Well, as Janis remarked, one of us had to do it.

It's good to know you can sit with people who understand, chat over tea and biscuits and have a break for an hour or two. I left feeling that I had spent an evening with friends. That's a good feeling.

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