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The Longest Farewell

Nula Suchet
ISBN-13: 
9781781725184
Publication Date: 
Monday, July 22, 2019
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£12.99

‘A cry from the heart that is a triumph of love over despair.  Fear, guilt and anger are all here, but so too is real compassion and a genuine urge to make a difference.’ – Alan Titchmarsh

When Nula’s husband James, a documentary film-maker, becomes forgetful they put it down to the stress of his work. But his behaviour becomes more erratic and inexplicable, and he is diagnosed with Pick’s Disease, an early onset and aggressive form of dementia. Suddenly their lives change from comfortable middle-class creatives through unexplainable behaviour, the shock of diagnosis, coping with the ongoing illness, not coping with the illness, to the indignities of care home life.

The Longest Farewell is a moving description of James’ utter mental and physical deterioration, and the effect that it had both on him and on the people from whom he was involuntarily retreating, particularly Nula, who gives up her international practice as an interior designer to care for him. Her life is completely taken over by James’ illness: her frustration at trying to cope, her guilt at having to hand over his care to professionals in England, are just part of her at times harrowing story.

With James in care and left with seemingly little to do but wait for his death, Nula meets Bonnie, another resident at the care home suffering from the same condition. In turn she meets Bonnie’s husband, the broadcaster John Suchet, and the similarity of their positions becomes a bond between them. After the deaths of James and Bonnie, and some guilt-induced false starts, Nula’s story takes a bitter-sweet turn: they become partners, and eventually marry.

The Longest Farewell is a heartfelt yet inspiring account of dealing with dementia, and of unexpectedly finding a happy ending. It includes colour photographs of the main characters, and is set to become a feature film.

REVIEWS

Highlights from ‘The Longest Farewell’ blog tour, organised by Love Books:

Monday, January 27, 2020

"There were times that this book had me in tears.  I am glad that Nula met another person going through the same as her and that they became friends and eventually finding happiness again in her life.  This was a great book." - One Girl and a Book. Read full review

"This book is highly emotive, heartbreaking and filled with love. This was a very brave book to write. This book shows what it is like when a loved one has dementia. The grief begins long before they die. You lose a bit of them day by day. It highlights the problems in the provision of care for patients suffering from dementia and the lack of funding compared to cancer." - Tracy's Year in Books. Read full review

"Brave, devastating emotional, and utterly heartbreaking, I advise anyone before reading to stock up on tissues as this book left me in floods of tears." - Books and Emma. Read full review

"Take a moment and read the book, you will not be disappointed. Nula has bared all in these pages. She hasn't shied away from how devastating dementia is and what it is." - Cen-sational Reads. Watch full review

"It was heartbreaking reading what Nula went through...This is the most saddest of real life stories that rips your heart out." - Bookread2day. Read full review

"An emotive book, it makes you want to grab your loved ones and hug them hard." - So Many Books, So Little Time. Read full review

Review by Pippa Kelly

Monday, November 11, 2019

The Longest Farewell is a hard book to read.  It is also an important book with a profound and, against all the odds, ultimately hopeful message.

In it, Nula Suchet speaks the unspeakable: she rails against “the bastard dementia” that afflicted her late husband James Black aged 57, leading them both on what she calls “our journey to hell”.  The pages hum with anger, frustration and guilt – yet her tale ends with a magical twist that renews our belief in the power of humans to connect, even in adversity.

In telling their dementia story warts and all, Nula highlights the common themes that crop up so frequently when I speak to those affected by the condition, either directly or indirectly.  There’s the drawn out diagnosis; the impersonal manner of some medical professionals; the diminution of identity.

“Dementia is destroying everything.  My marriage, my dreams, my finances, even myself.  Everything is subsumed by the soul-crushing grind of being a carer to the empty shell that is now my darling James”.

It is raw, uncompromising language, riven with pain.

Even more chilling is her family’s reaction when she and James leave their home in Ireland to find residential care for him in England.   No one says goodbye.  Nula thinks this is because they don’t know what to do or say.  “It is as if he’s become a non-person.  If he had been diagnosed with cancer they would see him as a brave battler, but dementia frightens them”.   I’m sure she’s right.  Dementia used to frighten me, but it no longer does because I have a much better understanding of what it is.

Nula’s love for James sustains her, just – and music is one of the last things she refuses to give up on for her opera-loving husband, who’d been a highly successful television director and writer.  In the early stages of dementia he wept when she played him CDs of Tosca and La Bohème – responding viscerally to one of the greatest joys of his life.

When she takes James to live in a care home she puts on The Marriage of Figaro, his favourite Mozart opera, and immediately he stands up and starts conducting the music, a huge smile on his face.

“I can’t breathe.  I move to wrap my arms around his body and hold him tight so he can’t see me cry.  I want to run out of the room with him and take him far away from the world of care homes and dementia”.

This poignant incident will resonate with anyone who’s had to place a loved one in care.  When my mother was dying of dementia, I witnessed the incredible power of music to connect (and wrote about it here) and am now passionate about spreading the message.  I’m still pursuing my campaign to persuade the BBC to bring back their old radio programme Singing Together, originally aimed at children, this time for older people and those with dementia (see here).

When James’ worsening condition forces her, with reluctance and guilt, to place him in a care home she meets a man who knows just what she’s going through because he is too.  It is the broadcaster John Suchet, whose wife Bonnie has Alzheimer’s, and their shared experience brings them together in “the strangest dance of love and care” which ultimately, following James’ and Bonnie’s deaths, leads to John and Nula marrying.

Love, then, squares up to dementia.  It can’t prevent James or Bonnie from suffering or dying, but neither can it be destroyed.  Nula lays bare the devastating impact of James’ Pick’s disease (a rare form of dementia affecting behaviour, emotional control and ability to communicate) not just on him, but on her.

The resulting book is one of coruscating honesty that is well worth a read – but not, I would counsel, if you or a loved one are in the throes of what its author describes as “soul-destroying and utterly frightening years”.  Wait until your personal encounter with the UK’s most feared condition is over.

Occasional moments of magic temporarily ease the pain.  The house is suffused with the scent of sweet peas that James has grown and placed in every room, and when Nula goes to her car she finds little bunches of the flowers on the driver’s seat and dashboard.  “It’s his only way of telling me he loves me,” she says, and you hear her heart breaking.

It is in the care home that Nula meets first Bonnie, with her “strange and ethereal beauty” and then her husband John Suchet, to whom she feels “an instant connection.”  As their friendship develops into something more it is inevitably hard for them both.  Nula is a wife visiting a husband she adores but to whom she hasn’t been able to connect for years; she’s also establishing a relationship with another man.

John Suchet, incidentally, is as convinced of the power of music to enhance the lives of those with dementia as I am.

“Music is medicine to those with dementia, able to bring comfort and joy when nothing else can,” he told me.  “Bonnie smiled and tapped her feet along to Abba when words no longer held any meaning”.

The book never leaves you in any doubt about Nula’s love for James, or John’s for Bonnie.  And towards the end, battered by their experiences, their spouses’ suffering finally over, their burgeoning love almost destroyed by the bastard dementia, Nula and John come together and find peace.

When John Suchet’s book on Mozart is published he dedicates it to the memory of “Mozart lover James Black”.   While Nula ends her work with words of hope. After a decade of flat hopelessness, her creative energy rises again like sap.

“I’ve changed as a person.  The loss of James has made me see life in a different way.  I’m a bigger, better person because of it.  My life now, once again, is about love”.

It is a life-affirming end to an immensely sad and painful story.

https://pippakelly.co.uk/

Review by Lousie, Bookmarks and Stages

Wednesday, August 7, 2019

Brave, devastatingly emotional, moving, heartbreaking, thought-provoking and yet there’s so much love in The Longest Farewell and ultimately, such a special kind of happiness.

Read the full review on the Bookmarks and Stages blog

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