Carer tells of struggle to keep wife safe during coronavirus lockdown
Six years ago on Valentine’s Day, Sarah Choules life changed forever when she was diagnosed with a rare condition, Neuro-Behçet’s disease, which caused her brain stem to swell, effecting just about everything imaginable - she lost her sight, her memory, was unable to walk unaided and could not eat without choking.
From a “fiercely independent” teacher, mother, grandmother and wife, her world had changed.
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Hide AdSo too, did that of her husband Victor, who had to immediately give up his job as a transport manager at a car parking firm to care for Sarah 24 hours a day.
This week marks Carers’ Week, the annual event highlighting the challenges unpaid carers face, and recognises the contribution they make - not just to society, but to those who need them most.
And this year’s celebration takes place at a time when up and down the country, carers are facing unprecedented challenges and strain during the coronavirus lockdown.
For Victor, 55, the added pressure has been tough - and made more so by the fact he contracted the virus in March.
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Hide Ad“I was terrified of passing it on, as she has no immune system. I thought, if she gets it, that will be it,” he said. “And she did. I was so scared when the doctor said to her on a video call ‘you’ve definitely got it’”.
Thankfully, Sarah’s case was mild, and a combination of strong antibiotics and using the ventilator she had at home prevented a hospital admission.
But hospital stays have become part of the couple’s life since Sarah was diagnosed, with at least five long stays since 2014.
Reflecting on her diagnosis, Victor said: “The disease just took over her life. It just happened - suddenly she was in hospital, in the ICU. She is not the same person she was, and sometimes she just doesn’t want to be here.”
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Hide AdShe did regain some of what was lost, but remains in a wheelchair, has memory issues, and partially sighted. Victor does all the household jobs and helps his wife with personal care.
Sarah, 47, takes 100 tablets a day, and has recently changed to a new style of medication that replaced chemotherapy-style infusions that she had to have every six weeks. A flare-up could come at any time.
But there have been moments of joy since diagnosis. Two years ago, the couple got married in Scarborough, and during lockdown, Victor has redecorated their front room with vintage signs from Scarborough and Filey to bring a bit of the East Coast to Leeds.
The couple, who live near Belle Isle, have been shielding throughout the lockdown, receiving food parcels and deliveries to get them through.
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Hide Ad“I would have never dreamed something like this would happen,” Victor said. “It’s been awful.
“But the worst thing has been seeing people living nearby, inviting family over, having barbecues, carrying on like normal. 40,000 people have passed away yet people don’t seem to get it (lockdown).”
Since lockdown began Victor’s sister, who lives in Middlesex, has been diagnosed with lung cancer, yet he has still stayed at home to protect Sarah.
“I would love to have gone down and seen her and my parents, but I know I can’t,” he added.
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Hide AdFor Sarah, not seeing her four children or her six grandchildren for the last three months has been particularly tough.
Sarah, who taught at All Saints Primary at East End Park, said: “It’s so agitating, knowing other people are seeing their families. I get to speak to them but it is not the same.
“Since I was diagnosed Victor has done everything for me - he cooks, he cleans. He is a complete angel.”
Victor now receives support from Carers’ Leeds, which he said was a valuable lifeline, with staff “checking in” regularly. Group coordinator Angie Thompson has been “a hero”, he said.
He added: “They have been brilliant, just fantastic. Simply knowing I’m not alone. Getting in touch with them was the best thing I’ve ever done.”