FUND-RAISER: 'It was worse than not having any hope,' says Bamber Bridge husband after wife with MS is refused disability grant while critically ill
His wife has an aggressive form of MS that has left her bed-bound with no use of her arms.
Now Bamber Bridge man Stuart Manning is fund-raising £30,000 to create a downstairs bedroom and bathroom in his home for his spouse Caroline, who can no longer be safely moved upstairs.
While 51-year-old Caroline was in hospital fighting for her life just before Christmas, Stuart was dealt another devastating blow when South Ribble Borough Council rejected the couple's application for a disability grant to fund the home amendments. He was told he could afford them on his own.
"It was like the ground had pulled out underneath me. It was worse than not having any hope," said Stuart, who has no savings or disposable income.
The 47-year-old added: "Last year was a wake-up call because I nearly lost her. In the hospital, I was thinking about how I'd cope without her and started having panic attacks."
Caroline, originally of Lostock Hall, was suffering from a mysterious illness when the couple first began dating.
"When we met she was being treated for stress and anxiety, even though she was struggling to walk. The doctor said she was walking like a 90-year-old," Stuart said.
Little did they know the mum-of-one had Multiple Sclerosis (MS), a condition that affects the brain and spinal cord. In MS, the coating that protects the nerves is damaged, causing symptoms like eye problems, pins and needles, fatigue and pain.
In fact, it wasn't discovered until she set up home with Stuart in Bamber Bridge and switched doctors in 2006. Her new GP then identified the condition in just two appointments before immediately referring her to hospital for further tests.
"She was relieved when she received a diagnosis as she thought she was dying. But since then, her illness has been very aggressive," added Stuart, who became one of his wife's carers.
When the pair married in 2007, she could only walk up the aisle with assistance. And a decade after her diagnosis, she was completely reliant on a wheelchair. Her other symptoms include fatigue, short-term memory loss and difficulties co-coordinating her limbs.
The past year has been one of the worst for the couple, with Caroline being admitted to hospital eight or nine times because of a kidney infection and sepsis, the last admission being just before Christmas.
"The doctors were talking about resuscitation options because she was that poorly," Stuart said.
Caroline's now bed-bound, has lost two stone in a month and requires 24/7 care. It's a world away from the person she once was, according to her spouse, who added: "She used to be very physically fit. She was the life and soul of the party and enjoyed going on holidays and out for drinks.
"But MS has chiselled bits of her away at a time and when I sit back and think how we were when we met, the change is a big shock and upsetting. There's not been much happiness for us recently."
In fact, Stuart has struggled at times with the demands of being a carer and his mental health has plummeted over the years. Severe depression and suicidal thinking have resulted in calls to both the local Crisis Team and Samaritans, as well as trips to A&E.
"I thought she'd be better off in a care home without me," he said.
"But then I realised I'm doing a pretty good job, and being at home with her husband and our cats meets her emotional needs. We're married and said our vows so we're sticking together."
Despite his own struggles, Stuart continues to work in IT, volunteers with first aid charity St John Ambulance and runs a sanctuary called North West Animal Rescue Services at home.
"People have said, 'Give up the cats,' but it's not easy. They're part of the family and keep Caroline company. If it weren't for them, I can't guarantee I'd still be here," he said.
He's also made numerous alterations to the couple's home, including fitting and replacing a stair-lift, wet room and downstairs toilet.
"We've never really had any support," he said.
"We've been given a hoist, wheelchair and hospital bed but most of the adaptations have been self-funded."
And so, with his own health crumbling and Caroline's condition rapidly deteriorating, Stuart decided to reach out for help. That's when an occupational therapist working for Lancashire County Council advised the couple to create the downstairs space.
"It will help give her a more normal life and make it easier to recruit carers in the future," Stuart said.
"If I was confined to a hospital bed in one room, I don't think I could do it. She's a strong person and has always been a fighter."
Coun. Bill Evans, cabinet member for planning, regeneration and city deal at South Ribble Borough Council, said they received the referral for adaptation from the occupational therapist on October 22 last year.
He added: “A survey was arranged and carried out at the property on October 23, 2019, and additional application forms (which called for details in relation income) were left with the customer to complete.
“We received the completed application with the supporting documents from the resident on 25 October, 2019. The application was assessed by our team as per procedure and following a means test, the application was refused as the annual income for the family fell above the particular funding threshold.
“Contact was made with the resident via email on October 30 to advise that the application had been refused and followed up by a letter confirming the outcome.
“We are aware that the resident currently has a live planning application to complete the works via self-funding.”
What makes it more frustrating, Stuart said, is if he didn't work, the couple would be entitled to the grant as the current system only goes off your wage and doesn't take into account other commitments like mortgage payments.
"But if I didn't have my job, I think it's lose it mentally," he added.
"We're hard-working people who give. I've always had a job, we pretty much self-fund the animal rescue and I'm happy to do some of the refurbishment work.
"Caroline would do anything to go out and work as she's always been independent but she's even lost the ability to pick up a TV remote."
That's when he decided to set up a fund-raising page, with people quickly rallying round to offer help.
He said: "I was moved to tears by people's generosity and when you have strangers reaching out to you, it restores your faith in humanity. It means absolutely everything to me."