When Vanessa Aylwin was in her 30s, she was caring for her mother, who had Alzheimer’s. Vanessa knew that one day, the disease would come for her. Her husband Michael recounts caring for Vanessa, who died at 53 of the disease and the vast gaps in social and financial support for young Alzheimer’s patients.
What a dance it has been. Not as I might have expected, but expectations can only ever be thwarted, so I don’t have anything to do with them. I emerge with a touch of survivor’s guilt. To watch closely the deterioration of a mind of such vivacity and colour to its end point, sped up in that untimely fashion, has been difficult, but it has been a sort of privilege, too. For all the anguish she endured in expectation of her fate, I hope Vanessa would have looked back on her life, if she could, with fondness and pride. At 53, she died at least 20 years before her time, but there is much living to be had in 50 – and she had it.
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