I'm meeting with Barb Brandt this Friday:
Her husband died from ALS in January. He had it for two years.
I mentioned our situation to a customer at work and she knows Barb. This customer thought it would be good for us to meet and connect.
It feels odd, this random connection. I feel unsettled about the conversation. Prying in to her life, opening up my own.
My chicken little worry hat is on too tight.
I sense it will do us both good to share our stories and I imagine her resources, her first-hand knowledge of caretaking will be invaluable.
I love this picture of Michael Brandt and his kids at a bike-riding fundraiser:
Luther and I were talking about his future. How tough it is to think of things to do when your body won't let you do anything. The reliance on others to not only get you places but to do things like wrap your hand around a glass.
I'm not going to be with him all the time. Sure, it's going to be great to have a home health care worker here. But I want his time to be spent with people who love him, you know? Sit with him, watch a movie with him... can he play cards? scrabble? He can't use his arms. What's he going to do all day??
Looking at the picture in the link above gives me hope we can be outdoors, we can enjoy some ordinary every day things, we can find ways to adapt his immobility and make him feel like he's part of the world and not just a bystander.