Shattering reflection on a life and death dilemma
A week after an architect was told he had dementia, he decided to end his life. His wife’s account of what followed is a touching, funny and powerful defence of the right to die
The nightmare agony of this situation is all too real for countless families. how do you cope when a beloved family member, diagnosed with any form of dementia, faces a gradual, but inevitable, decline into a living death?
The story of how American writer and academic Amy Bloom and her husband, Brian Ameche, faced this terrible dilemma is told by Bloom with devastating honesty and surprising wit.
A memoir culminating in a final trip to Dignitas in Switzerland may sound unbearably depressing, and yet Bloom’s aching account of loss is brave, tender and ultimately life-affirming.
Anyone with experience of dementia will recognise the author’s increasing unease as her husband’s behaviour became more and more odd. It was more than a case of increased forgetfulness. Dementia can change a personality, prompting disturbingly uncharacteristic behaviour. For example, once Brian gave Amy a gift of an expensive, ugly sweatshirt trimmed with tulle — not something she would ever wear.
It may sound trivial, but such an action is one step along the road to living with a stranger. The handsome, intelligent college footballer-turned-architect lost his way to familiar places, stopped reading and became distant. Something was wrong.
BuT, of course, denial sets in — until the symptoms become too worrying to ignore. Then comes the pain of achieving a diagnosis, and at this point the reader reaches what is not so common about this couple’s story. As Bloom puts it, with characteristic, terse economy: ‘Once Brian had finally been diagnosed it took him less than a week to decide that the “long goodbye” of Alzheimer’s was not for him.’
The strong, debonair man expressed a determination to end his own life before he turned into a person he might not have recognised. But how to achieve it?
Brian Ameche and Amy Bloom had left other partners and married in their 50s, enjoying an occasionally turbulent but very happy life in Connecticut. Amy’s children and grandchildren became Brian’s too and that family life brought them great joy. But when Brian proclaimed that sentence of death upon himself, they did not tell the family at first. The response from others, especially medics, was not generally encouraging.
In liberal America, trying to end one’s life, in a rationally self-chosen and pain-free manner, isn’t at all simple. even in states with socalled ‘right to die’ laws, the obstacles are huge, unless the surviving spouse is happy to go to jail. Bloom says bluntly: ‘People who do wish to end their lives and shorten their period of great suffering and loss — those people are out of luck in the united States of America’. And in the united Kingdom, too.
When the couple are finally led to believe that Dignitas is the only solution, they are additionally tormented to discover that the decision is far from plain sailing, since there are many unforeseen checks and balances. You read with great sympathy as the couple seek the right form of confirmation about Brian’s mental state.
Yet it is still a relief to realise that accompanied suicide in Zurich cannot be achieved on a depressed whim. There are many who detest the very idea of the organisation, thinking of it as an amoral killing machine, but as one who remembers the dignity and determination of two friends, a wonderful couple, both terminally ill, who chose this route together and died holding hands . . . of course, I disagree.
The heart-breaking but engrossing story moves back and forth in time, giving the reader the sense of really knowing this couple. Amy Bloom spends a great deal of time in desperate tears, knowing that all the strength of her love cannot halt the moving staircase they have chosen.
She gives as fine and powerful a defence of the wish to end a severely compromised life as I have ever read. She and her husband passionately believed that it’s quality of that life which matters most of all: ‘I say, If you think that a long life is of great value just because it is our only time here on earth, or because you appreciate what God has allotted you, or because there might be the possibility of treatment or cure for whatever ails you within your lifetime, if only the lifetime is long enough — your view will be different to mine.
‘If you are the kind of person who sees death as the enemy and continued life itself as a victory, no matter how lonely, painful, or disabled that life may be... your view is different to mine, and different to Brian’s.’
The whole narrative begins on Sunday, January 26, 2020, on the plane from the u.S. to Zurich, a final journey from which Amy Bloom will return alone. Then the story unfolds in finely written short chapters until we accompany the couple into the room where the fatal dose is administered and Brian’s life ends.
Yet that is not the end. For Bloom concludes with a beautiful account of their wedding day in September 2007, when she and Brian exchange public vows as well as (so moving to read) their private promises — each saying: ‘I will love you every day of my life.’
And so they did.