By Nula Suchet
The initial motive in writing The Longest Farewell was to keep James close to me, as he descended further and further into dementia. I wanted to recall our life together, and keep the memories alive in my mind. At the same time, writing it down acted as a kind of therapy for me, helping me to deal with this horrendous disease.
I was horrified to discover that there was little or no help out there for me. The medical establishment, once the initial diagnosis was made, more or less abandoned me. There was no cure, they told me, nothing more could be done. The first specialist who made the initial diagnosis told me a patient with similar symptoms had died within a year, and I could expect to lose James in a year or so. In fact he lived for 10 more years – a slow gradual deterioration that was heartbreaking to watch, and unbearable to deal with.
Inevitably, five years into caring for James it became obvious I was not coping. James was a six-foot man who could become suddenly aggressive. Family doctor and friends insisted, for my own wellbeing, I needed to put James into full time care. It’s a decision that anyone living with a loved one who has dementia will have to take. To say it is heartbreaking does not come anywhere near to describing this moment.
Once James was in a care home, I at least knew he was being looked after by professional carers. But even here the care varied. Some carers seemed to know how to handle residents with dementia, others did not. The doctor who was attached to the care home was a general practitioner, as is normal.
I admire GPs, they are they are in the frontline. They deal with every kind of complaint, from the trivial to the life threatening. But they have little or no training in dealing with dementia. I was unfortunate in that the GP attached to James’s care home was in this category. With no specific palliative care for dementia, James did not have appropriate pain relieving or symptom control medication, and I had to beg the doctor to help him. The experience was brutal for James and unbearable for me to watch. The doctor seemed not to be aware of the correct pain control medication to prescribe. I am convinced James suffered more greatly than he needed to, and for longer.
All this is in stark contrast to the care administered to patients with cancer. Not only is treatment administered by specialists, but carers are highly trained. Dementia is the outcast of diseases. And I had to fight every step of the journey .
If my book can go even a small way to correcting this, I will feel it has been worthwhile. If just one person caring for a loved one with dementia derives comfort from my book, and it helps them in a practical way, then it will have been worth it.
About the Author
Nula Suchet was born and raised in Ireland but has spent much of her life in the UK. Educated in Ireland and England, she studied at Chelsea College of Art where her extraordinary artistic talents were quickly recognised. Sculpting clay models on live TV for the BBC, she met her future husband, documentary film producer James Black. Nula went on to become Ireland’s most celebrated interior designer fashioning castles, mansions and stately homes taking chic to a unprecedented levels. James’ unexpected diagnosis of dementia came as a hammer-blow for Nula, and she juggled her time between caring for him and her ever-more demanding work. Inevitably the time came when she could no longer cope, and – devastated – she placed James in a care home where he spent his last days. It was here that her life unexpectedly changed when she met, and, eventually, fell in love with, a man whose wife also had dementia, and was going through the very same emotions. This is her story…
Find Nula on Twitter: https://twitter.com/nulasuchet
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