We read a moving ‘insider’s account’ of young-onset dementia by a writing couple in Canada.
With so little awareness of young-onset dementia or understanding about its effects on people’s lives, first-hand accounts have a lot to offer.
Caroline Branney, who manages our Dementia Knowledge Centre, says, ‘June and Tony, the authors of Four Umbrellas, provide an absorbing account of their lives and how dementia crept up on them, how it reshaped day-to-day activities, their relationships and their happiness.
‘Originally, they had decided to write a book together to highlight the issue of mild cognitive impairment (MCI), but it evolved into a memoir about Alzheimer’s.’
Rosemary Cassidy, a reader in County Down, says, ‘I’m only starting out on my journey with dementia with my 90-year old mother, who has not been diagnosed yet. The signs are evident though.
‘Our book could be entitled “The five sheets,” as that was how many were on my mother’s bed last week! In the first visit to the doctor in a year and a half, she responded, “Yes,” to the doctor who was asking could she make her own bed.
‘The doctor replied that anyone at the age of 90 making a double bed was in great shape. They didn’t check what size the bed is – it is single, which we just had changed because she struggled with the weight and size of the bigger bed and its covers.
‘My mother didn’t acknowledge it was a single bed nor had any idea how many sheets were on it.’
In the book, it’s the four umbrellas that Tony packs into one suitcase that symbolise how his thinking has been affected, years before his diagnosis.
Stigma and signs
Tony and June describe the stigma that still exists about dementia, making so many of us reluctant to acknowledge it until it’s inescapable.
‘For a long time, Tony and his wife June preferred to talk about MCI and his depression, and were in denial about some of the signs that his condition was worsening,’ says Caroline.
‘This was also because the doctors seemed unwilling to diagnose someone at such a young age.
‘Initially the couple preferred secrecy, but increasingly June became frustrated and describes living “a half-life, in which the disease, with no written or formal diagnosis, kept us financially troubled and emotionally stifled”.’
Rosemary says, ‘Tony’s examples of early signs are also to be highlighted, especially for carers who are often only learning the hard way.’
‘For example,’ says Caroline, ‘June describes Tony’s manic and angry behaviour while driving on holiday in Spain, which was completely out of character.
‘On their return to Canada, Tony had lost all his enthusiasm for their house and garden. They decided to move to an apartment shortly afterwards.’
Much to learn
‘Despite the memory and cognitive challenge, I am also amazed how much Tony was able to contribute to the book.’ says Rosemary.
‘It would be good to hear more from him. It seems his acceptance of his condition counted for a lot as regards his peace of mind – much to be learnt there by professionals.’
Caroline agrees, ‘Most moving are some of Tony’s own words to describe his experience.
‘For example, “It doesn’t mean it’s the end of your life. Actually, it’s the beginning of a new one… it took me a while to discover this, but it’s been humbling.”’
Four Umbrellas: A couple’s journey into young-onset Alzheimer’s, by June Hutton and Tony Wanless (Dundurn 2020), 224 pages, £14.99, ISBN 9781459747791.