No light can escape from a black hole. It has, in effect, disappeared from the visible universe – has become invisible. Just like the under-65s when they are diagnosed with ‘young onset Alzheimer’s disease’. They do not fit the commonly understood model of dementia, which is that it affects only older people. In 2001, at the age of 54, Ray Smith, a busy export manager, husband, father and a new grandfather, was diagnosed with young onset Alzheimer’s. Neither he nor his wife Eileen had any knowledge or experience of the disease. They fell into a system that split care into ‘the under-65s and the over-65s’, but services for the under-65s didn’t recognise Alzheimer’s as a disability. It was an uphill battle, not only having to adjust to the diagnosis, but also having to cope with expensive, unsubsidised medication, which at best slowed its progression. Five years after Ray’s diagnosis, Eileen reached a point where she was despairing of ever finding suitable and age-appropriate care for Ray. She joined Alzheimers New Zealand, later becoming a board member, and has worked tirelessly for all sufferers. This book tells not only of their struggle through the system and Ray’s inevitable decline over the years, but how they both shared a passion to spread awareness of the disease. It is a story of hope, strength, stubbornness and, most of all, love.
education, living & lifestyle, people
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