My husband is helping the man from Innovations in Dementia with his research into people with memory problems telling their life stories. At first he uses words like functionality.....cognitive....empirical..... but changes them when he sees my husband’s quizzical look. But he doesn’t change his stand for representing people like my husband - being on their side, being an advocate for them, holding an alternative vision for them in the world where they can become invisible, diminished, marginalised, forgotten...
He tells us that an article my husband wrote for his magazine - about what it’s like for him now, including his phrase about Having a day of joy by living out of my heart - was read out in a small group of people with different dementias and their partners. The woman running the group in York said it was the best thing she’d read and there were tears in the room afterwards....
Which makes me cry too.......reminds me to keep looking for the whole of the man I love....stitching him together how he is now.... and to not grieve so much, so constantly, for the enormity of his lost worlds....And mine.
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