I was fortunate enough to read this book when it was in its first throes of being written, and to work with Marie as she wrangled her and her family’s story onto the page. It was an enormous privilege to be part of that process.
It is the story of the enormous courage and dignity, love and respect demonstrated by Marie and her husband as they and their sons, face the challenges of his early onset dementia.
Dominick is an academic, and a smart, warm, loving husband. When he first begins to behave a little oddly, his family aren’t sure what to think. As the behaviours become stranger, and more persistent, his wife struggles to find answers. Finally, after months of confusion and uncertainty, Dominick is diagnosed with early onset dementia. He is too young, too strong and smart and necessary to their lives for it to be true. But it is true. Dominick’s mental and physical health will slowly decline. Eventually, he will require full-time medical care. There is no cure.
Dominick is not like other dementia patients. The services set up to support older people are a poor fit for a young father and husband. Marie and her sons, and their support network, fight hard to provide Dominick with a meaningful, empowered, and dignified life in the face of an illness – and a system – that is too often degrading, humiliating and dehumanising.
The love, determination and courage of this family shine through every sentence, from the bewildering months before diagnosis, to the determined dignity of Dominick’s death. Few stories demonstrate so clearly how much love and respect matter, or how devastating the impact of disease is, not just on the sufferer, but on their family and friends, and on their community. Marie’s determination to maintain a loving relationship with her husband, to love the man she met and married, and to support her sons in doing so, is incredibly moving.
This book is a testament to the man Marie and her sons loved and respected; to the value of care; and to the importance of respecting the dignity and humanity of dementia sufferers. Pack tissues. It’s unsentimental, but devastatingly moving.