Grasping the wisps
This article was first published in the Minden Times in October, 2024.
I read Living With Dementia by Darce Fardy (Nimbus, 2024) because I need to keep abreast of who’s publishing what relating to dementia to fine-tune the hunt for someone to publish my memoir about living with dementia. Not my dementia, not personally experienced as Darce’s was, but nevertheless a close companion for a long time. This book made me sad.
At age 82, Darce was diagnosed with dementia, Alzheimer’s type. He and his wife, Dorthea, decided to go public about their experience with the disease; they became very involved with the Alzheimer’s Association as spokespersons and advocates, and Darce successfully proposed to write a semi-regular column for the Halifax Chronicle Herald. Living With Dementia is a compilation of columns written over six years, from shortly after his diagnosis until two years before his death shortly before his 90th birthday.
The book made me sad because the voice of dementia is – in Darce’s case and in my own experience – a cri de coeur to grasp the vapours of self as they float away.
From the outside, this looks in the early stage like egotism, a demand to remain whole at whatever cost. Darce dates his analysis of the progression of his disease and how he is managing from his diagnosis at age 82, but clearly his dementia was well on its way by then.
Darce retired from a long career with the CBC at age 59, which seems young; there is no explanation offered except that he was ‘encouraged’ to quit, but created his own poorly paid contract job as the first Review Officer tracking requests for information from the provincial government. After eleven years, at age 75, he was encouraged to leave that job – he suspects because he was effective, but also admits he was experiencing some difficulty with details. Refusing to stop working, he founded and was the sole worker-bee in the Nova Scotia Right to Know Coalition for which, at age 81, he received a Queen’s Diamond Jubilee Medal. Only then is he diagnosed; his ‘family began to notice’ memory difficulties that Darce attributes to being a poor listener.
In the middle stage, when the disease is advanced enough that it becomes visible to the discerning eye, we see in Darce’s columns the conundrum of a mind that can’t see clearly reporting on its own functioning. Within two years of his diagnosis, he has his first comeuppance with physical malfunction: he has an inexplicable serious fall. He reports that he’d been told in conjunction with diagnoses that instability was to be expected, but he eschews the idea of using a cane – he continues to hate all mobility aides until he loses the energy to hate. The man who is proudly public about dementia is demolished by evidence of physical frailty. He clings desperately to his gym connection, in part to retain his persona as physically fit and a great walker, but also because ‘all the experts’ say exercise delays the symptoms of dementia. He is strongly committed to being the poster boy for doing dementia right, but in the end everybody knows he can’t win. The question is always how hard should we push for performance.
Darce’s columns become increasingly repetitive, lists of visitors, congratulatory recognition of the accomplishments of others, recurring admonishment to stay positive, occasional riffs about when and how his final exit should take place, continuous appreciation for the practical care of his wife and children and his ongoing inclusion in extended family events, even as it becomes a blur, a distancing world seen through a glass darkly. His last several columns, written ‘with increasing doses of intervention from Dorthea, his Editor-in-Chief’, were not published or publishable – perhaps Dorthea stopped reminding Darce what he planned to write about or didn’t tell him she didn’t send them off. It seems they stopped having purpose for writer or reader.
The epilogue reports that Darcy became increasingly preoccupied with being a burden to his wife and died ‘at the time and place of his own choosing’, which suggests he may have had medical assistance in dying. In earlier columns, he references the discussion about prior consent for MAID and the implications for people with dementia. Four years before his death he considers that he has lived too long, but then bounces back to what sometimes feels like mandated optimism and jolliness. Dr. Kenneth Rockwood, whose Introduction and Afterword may have provided a required medical seal of approval for the book, concludes ‘The lesson we should take from Darce Fardy’s [life] is that if dementia befalls us, we should aim to live as fully as we can.’
Who could disagree with that? Still, watching a person clutch at the wisps of what made him who he was makes me very sad.
