“I need to talk to someone: my wife has become so confused and I don’t know what to do.”
A phone call from a friend; and yesterday the three of us sat together to talk. He was feeling just the same as I did six years ago when my wife, Shoko, became confused as we travelled. And then a year later, when her capacity to manage her daily life began to slip away. It was hard. That was why I wrote our story, published two years ago today - Living with Alzheimer's - a Love Story.
I was glad that my friend got in touch. They have to make important decisions and I was able to share some of the good things as well as the challenges that lie ahead for them. Building a support team was the most important thing for us – without it we would have been swept away. We came near to it several times but our team kept us going. Because of them we were able to continue at home, living as full a life as possible.
The community, both local friends and the professionals, enable the family to go on doing that, a point made by the Archbishops’ Commission on Reimagining Care: “The care system (the community, us) should be “enabling people to live a full life,” says Dr Anna Dixon, who chairs the Commission. But it is not. “People are not being supported to live the lives that they want or any of us would choose for ourselves.”
I hope our conversation yesterday was a small contribution to that support.
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