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Author gets emotional at Care Roadshow London about husband’s death from dementia

Nula Suchet Care Roadshow

One of the panels at this week’s Care Roadshow in London saw an author explain the ins and outs of her husband’s experience of dementia before his death.

Nula Suchet, author of The Longest Farewell: James, Dementia and Me, grew emotional as she recounted her fellow panelists and the audience with the details of her husband’s initial symptoms, diagnosis, deterioration, admittance to a private care home and eventual passing.

Suchet was joined in the panel discussion at the Care Roadshow, London on Tuesday 18 October by: Jackie Pool, dementia care champion, QCS; Kellyn Lee, CEO and founder, Wiser Health and Social Care; Rosie Mead, CEO, Musica Music and Wellbeing; Rishi Jawaheer, director, Jawa Group, Namaste Care International and CareVision.

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She explained how her husband, James, showed “strange behaviour” for around two years, which she attributed to his “quirky” personality, before a friend suggested taking him to a GP.

Suchet said that two separate GPs told her that her husband, a writer, needed to “get out” a bit more.

Finally, a friend with medical experience flagged his cognitive issues, and a dementia expert broke the news that he had Pick’s Disease.

On the experience, Suchet said: “He was so cruelly hard about it. He said, ‘He reminds me of a patient of mine who lasted a year.’ You need to get some further tests. I came out. I was shocked. I didn’t cry.”

After more tests the couple were told that the condition was “quite far along”, and that there “was no cure”.

Suchet continued: “‘It isn’t a nice journey,’ the doctor said. ‘It is cruel. There is help out there but there isn’t help right now because James isn’t at that stage.’

“He showed me out, we had no roadmap of where to go next, and I sobbed and sobbed and sobbed. I got back home and thought, I either lie down and die, because this is the love of my life, or I get up and I fight.”

Six years later and James was admitted to a care home, again on the advice of a friend of Suchet’s. The couple decided on a private home in Hertfordshire.

“James thought he was going somewhere lovely,” Suchet said. “He kept saying, ‘We’re going to London.'”

The wife filled her husband’s room with pictures and belongings, to make it feel like home, which she says many family members might not think of or might not realise they are allowed to do.

Later in her husband’s time at the home, however, she described how things would go missing from his room. Other residents would be wearing items of his clothing when she visited.

“The fees were huge,” she said. “I was paying the best part of £7,000 a month. I had to sell my house to pay. That was a huge trauma for me. I had to put all my stuff into storage. I came to England [from Ireland] and rented a flat to be near him.”

Suchet does not blame the carers at the home – who she recounts would do James’ hair the way he liked it, and other personal touches – for issues like his missing clothing and possessions, but says that the understaffing issue across the entire care sector, even at a particularly expensive private home, was the cause.

Her book, originally published in 2019, can be bought online.

Tags : Care RoadshowDementiaNula Suchet
Sam Lewis

The author Sam Lewis

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