A Day in the Life #8 – Sue’s story
What do you do when your husband and love of your life’s dementia develops to the extent you can no longer cope with his care? What do you do when the man who has shared your passion for travel since the 1980s can no longer do so – and there is still much more of the world you want to explore? These were exactly the decisions facing Sue, whose husband Allan suffers with dementia.
In this extraordinarily candid interview, I was lucky enough to spend time with Sue, whose husband Allan is in Butterflies – the dementia wing at Dane View Care Home with Nursing in Leicester, part of the Bayswood Care Group.
Sue told me about the amazing adventures they had enjoyed, until dementia removed the opportunity to travel long distances together, and left Sue facing some difficult choices.
Sue and Allan have been married for 55 years. They were childhood sweethearts – the kind you read about in love stories. They used to see each other on the street where they both worked, until one day Allan plucked up the courage to knock on her parent’s house door and ask Sue out on a date. Allan took Sue to the cinema to see One Million Years B.C. starring Raquel Welch and John Richardson. The fictional love story must have looked exotic in Technicolor when they saw it in early 1966, filmed as it was on the Canary Islands. I wonder if the film was the subliminal pre-text of their later desire to travel.
Sue and Allan produced two ‘lovely’ boys and the idea of travel took a back seat as the reality of paying a mortgage and raising a family took hold. The children got older, careers progressed, and holidays became possible, starting with camping in the south of France in 1980. When the boys grew up and flew the nest, Sue and Allan were able to travel more. Early adventures included Crete, the Spanish mainland, Majorca, and then their first ‘biggie’ – a holiday in Kenya in 1994. The holiday was both exciting and scary, taking them out of their comfort zone going on safari and absorbing the local culture.
The Kenyan adventure gave Sue and Allan confidence and, after their lifelong friends moved to Thailand, Sue and Allan would visit Bangkok annually and use the trip as a launchpad to travel around the region and as far afield as Australia.
When Allan retired in 2013, they travelled from San Francisco to Las Vegas. Two years later they were back in the USA, and Allan drove them down the Californian coast from San Francisco to San Diego. Sue says, ‘Allan was a confident driver and so it made the experience easy.’
It was the 2016 trip to Thailand and then onto Australia where the cruelty of dementia reared its ugly head more seriously. Sue remembers, ‘Allan had been diagnosed the previous September, but still seemed OK. After seeing our friends in Bangkok, we flew to Sydney. Even though they drive on the left in Australia, we soon realised Allan could no longer cope, so I had to do the driving. We still had a great holiday, but it was worrying.’
Allan’s inability to drive did not stop them travelling to New Zealand two years later. Sue believes that they were lucky because, as she explains, ‘We had plenty of warning about the dementia, and were able to plan around it on trips. Allan is incredible – he never became frightened of travelling and flying. I would take the reins and guide him around the trips.’
Sadly, 2020 saw the advent of the Covid pandemic and travel stopped.
‘It was March 2020, and we were on a three-week trip to Bangkok, Phuket and Malaysia. This holiday was a special treat for Allan’s 75th birthday and my 70th and had been in the planning for a longtime. We had had two lovely weeks in Thailand and were due to board a clipper and visit Malaysia, but the boarders closed, and we were stranded. Thankfully the travel agents managed to fly us back on Sunday 21st March. Two days later, the government announced lockdown in the UK, but we had made it home in time!’
Since that time, Allan’s dementia has worsened, and Sue found she could no longer cope with his care. Allan had short spells in two other care homes until Sue moved him into the specialist dementia unit, Butterflies, at Dane View.
‘Dane View has been fantastic,’ Sue says, ‘and their specialist care has made a huge difference to both our lives. So much so that it gave me the confidence to travel again, knowing he is in safe hands. I didn’t want to upset Allan by travelling without him, so it was a huge decision to take my recent trip to Canada and Alaska during August. I sent photos over to Dane View and they laminated them and put them up in Allan’s room. I felt he was there with me, seeing the bears and golden eagles with me.’
Sue’s wanderlust remains unsatiated, and other exciting trips are planned.
I asked Sue what advice she might offer to others facing her situation with a loved one. Sue says, ‘When you have cared for someone with dementia it becomes all-consuming. Eventually you must be honest and admit that you can’t do it anymore. It’s the fairest decision to make for both yourself, and your partner. Eventually I had to let go for Allan’s safety and my health and, as advised, sought professional care. I am very fortunate that I found Dane View, because they can offer the care and dignity Allan deserves.’
Sue spends many hours visiting Allan in Dane View, and we believe Allan understands that the pictures Sue sent were for him to join her on the Canadian trip. Dementia is not a disease with sentimentality, however, and the same may not apply in future. That is the harsh reality Sue now faces.
In the meantime, Sue must be commended for sharing the love story of her life with Allan, their passion for travel, and the honesty about handing over responsibility for care to professionals. We hope this article helps others facing the uncertainty of a future with a loved one who is newly diagnosed with dementia. We also wish Sue many wonderful voyages of discovery in the future.
Interview by Kelly Farrington