The two men living with MND sat in the garden with espressos, the two MND wives sat in the kitchen drinking tea. It was good to talk, good to share experiences. We women wondered what they were talking about, what they were finding to laugh about together.
She and I talked about how, although the disease presents differently for every single sufferer, most people experience similar problems at some point in its inexorable course. There should be an answer to the practical problems, we agreed. A central point to go to for tips on how to get round these difficulties. The occupational therapists and District Nurses are usually the people to call on. In our case, the invaluable Donna, our Hospice Nurse, has been wonderful. The MND Association website and literature provide lots of answers.
But afterwards, I took time to reflect and it's all very well, but there will come a point when there will be no answers, when there will be no device or tool to assist. Then it will be down to us as carers - and our helpers too of course, to carry out the task ourselves. Then we will just have to 'accept the things we cannot change' and get on with it. It's not giving up, it's knowing when we have to accept the inevitable.
We talked about how careful we are about offering help. They have a rule about this. She doesn't offer to help unless he asks for assistance. We kind of had that rule, but ironically, that morning brought an incident which has made us revisit the rule. Roch was in the kitchen when I heard something drop to the floor - it sounded like something light, something small. I stopped myself from running in to help. He didn't call me. Instead, he stooped to pick it up himself - and fell over. That's what has to be factored in - will they be sensible about asking for help? He didn't hurt himself - it was a slow descent. It was a few minutes before Tom and I managed to help him up again.
We're learning all the time and no matter how many people have been in the same position before, there's only so much you can learn from their experiences. Still, it was good to talk and I hope we helped each other.