Looking for Lionel: How I Lost and Found My Mother through Dementia

Looking for Lionel: How I Lost and Found My Mother through Dementia

Looking for Lionel: How I Lost and Found My Mother through Dementia

Looking for Lionel: How I Lost and Found My Mother through Dementia

Excerpt

Looking for Lionel is a personal story. It is a story of how dementia crept into my family unannounced and left us struggling to hold on to a life that appeared to be slipping away from us like a balloon slipping out of a child’s hand. It is a story of fear and courage, shame and pride, sorrow and joy. It is a story of paradox, where the least capable person in our family was, for a time, calling all the shots. It is a story of how our lives changed in ways we never could have imagined.

We learnt a whole new language because the old ways of relating, which required memory, no longer worked. And although dementia is not curable, we discovered it is also not a fate worse than death. This is a story in which, out of the disorder and confusion, the pain and loss, we found the mother we never had.

Dementia is not a disease itself but rather a group of symptoms that may accompany certain brain diseases or conditions. Alzheimer’s disease is the most common form of dementia, followed by vascular dementia and frontotemporal dementia or FTD. As our mother, Lily, has both Alzheimer’s and vascular . . .

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