In 2019, Brain Ameche, award winning American author Amy Bloom’s husband, was diagnosed with Alzheimer’s disease, at only 66. Determined not to go through the horrors of loss of memory, cognition and all ills that accompany this debilitating illness, Brian, within 48 hours of diagnosis, opted for assisted suicide.
While that may appear shocking to many, Brian’s decision was not irrational, but informed by experiences he had seen friends and relatives go through and which he was not willing to undergo.
The story of Amy’s journey with her husband through that process, and his eventual death by her side in Switzerland, where assisted suicide is legal, are covered in her recently published book; “In Love. A Memoir of Love and Loss”.
I share this story, not because I believe suicide or early death is preferable to undergoing any illness, but to indicate just how devastating a diagnosis of any dementia, including Alzheimer’s disease can be, firstly to the subject of the diagnosis, and then to those close to the patient. This will be the second time I share about dementia.
Part of the writing is personal catharsis, but it is also meant to encourage many families going through this devastating experience. About 10 years ago, our mother, who was my first schoolteacher, the pillar of our lives, the backbone of our faith, the joy-giver in our home, was diagnosed with dementia.
For those not in the know, dementia refers to a condition in which one’s memory and thinking capacity are gravely impaired so that it eventually damages one’s quality of life severely. Since that diagnosis, we have all gone through a difficult journey of saying an extended goodbye.
We have experienced drip-drip loss as more and more essential elements of the person who has meant everything to us, disappears. We have grieved and cried our personal tears, many times in the rain. As I have shared with many families going through the pain of their parents’ dementia, I have realised that part of what we grief is the loss of opportunity to enjoy and bless our parents in their final years.
As we grew up, we had expectations that having toiled all their lives to support us, we would make our parents final years a joy, a fitting and joyous celebration after the travails of their lives.
We would ensure they knew and experienced fulfilling relationships with us, our spouses, our friends, our children, and grandchildren into their sunset years.
We would seek their counsel as we enjoyed ageing together. Somehow, we knew that we may miss this opportunity through their death, but while this would be difficult, this eventuality was expected, which would sightly dull the pain.
But we never budgeted for watching any of our parents alive but incapable of enjoying these final season experiences. Nothing prepared us for watching any of our parents go through confusion about who they were and who we were, to witness their terror of the routine, like when they are terrified of the approaching darkness and the “strangers” around their lives.
It is especially difficult early on in the disease when they know they have some problem but can do nothing about it. Most disheartening is our sense of helplessness and overwhelming weight of a condition with no cure.
How we all need strength to expend love that may not always be acknowledged or even recognised. How we all need to enjoy and treasure the few moments of cognition, sometimes in the simple act of jointly singing a song long enjoyed.
For the many whose parents are there in body, mind and spirit, say a thank you to God and treasure the shared moments; they may not be there for long.