John and Nula Suchet make a lovely couple. Married for four years, they look just right together and are completely at ease in each other’s company. However, the circumstances in which they first met could not have been more harrowing. It was 2011 and, at the time, Nula and John were wed to other partners – both of whom had been diagnosed with different forms of dementia at scarily young ages.
Bonnie, John’s first wife of 24 years, was in her early 60s when it was discovered she had Alzheimer’s in 2006 while James, Nula’s husband of 17 years, was aged just 57 when he was diagnosed with Pick’s Disease, a rare form of dementia, two years earlier.
Both Nula and John had cared for their loved ones for several years, heartbreakingly witnessing them fading mentally and deteriorating physically, until they had no choice but to move their respective spouses into full-time care – which turned out to be the same Hertfordshire home.
Bonnie and James ended up in rooms practically next door to each other and while Nula got to know Bonnie during her regular visits to see James – and John got to know James when he visited Bonnie – Nula and John didn’t meet each other until a lunch was arranged at the care home for family members and spouses of the residents.
“It was like turning on the light, the moment John started talking, because he understood exactly what I was going through,” Nula recalls. “It was like he was speaking my language – suddenly I wasn’t the only spouse travelling this lonely, desolate road. That was so amazingly comforting. I totally related to his feelings of loss and heartbreak.
“Being the husband or wife of someone with dementia is very different to being the grown-up child of a parent who has it. This is your life partner, your soul mate, with whom you had planned to grow old. As John had been with Bonnie, I was devastated by James’ diagnosis. He was only 57 at the time and there was no history of the disease in his family. I’d looked after him myself for five years but it got to the point where I could no longer cope. Handing him over was the biggest betrayal of my life. The guilt was enormous. I know it was for John, too.”
After the lunch, John and Nula started emailing regularly and continued to do so for some time before they arranged to meet again. After about a year, John invited Nula out for dinner and their friendship began to inch towards becoming a relationship.
“We were enjoying each other’s company but it was far from easy,” John reveals. “There was a lot of guilt. We both had a spouse still living – the loves of our respective lives – but they had already departed from us. Nula said, very early on, that there were four of us in the relationship. There were many bumps in the road. I remember an Admiral Nurse – the specialist medics who provide dementia support for carers – giving me some very valuable advice. He said, ‘What would you want for Bonnie and James, if it was the other way around? To find happiness? And what would they want for you, if they knew what had happened to them?’ ”
James died in late 2014, followed five months later by Bonnie. Neighbours in the care home for six years, they continue to be so in a way as some of James’s ashes are scattered with Bonnie’s. Nula and John, meanwhile, after several stops and starts over the years, committed to one another and married in 2016.
“Nula and I were always saying to each other that we have to live for now,” says John. “Who knows what next week will bring? Once we are able to travel freely again, we plan to visit Argentina where Nula says she intends to teach me how to Tango.”
James and Bonnie, however, are very much still part of John and Nula’s lives. Both have written books about the heartbreak of living with – and caring for – beloved partners with dementia. John’s account entitled My Bonnie: How Dementia Stole the Love of my Life was published in 2010 – a year before he met Nula. Nula’s book, The Longest Farewell – James, Dementia and Me, is out now.
“It started out as a diary when James became ill,” she reveals. “It was a way of keeping him close to me and was also very cathartic to write.
John (76) and Nula (70) are also Ambassadors for the Alzheimer’s Society.
“I am absolutely determined to raise awareness of this terrible condition,” explains Nula. “Dementia really is the outcast of diseases, and more and more people are being diagnosed all the time. And it doesn’t just happen to people when they’re in their 70s, 80s and 90s, either. Bonnie and James are proof of that. We need to come together, share information, experiences and advice, to try to improve the lives of sufferers and their carers.”
We’ll second that…
For more help and advice, visit The Alzheimer’s Society, www.alzheimers.org.uk
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