Garry Williams would like nothing more than to be able to go outside – but it’s easier said than done.
The 47-year-old had a stroke in 2017. It left him paralysed in his right arm, unable to speak or walk and he is now bedbound.
He was struck down by the cruel condition just three years after his husband, Robert Fionda, was hit by the same thing.
Robert’s stroke left him with aphasia, which affects his speech and writing, and a weakness down the right side of his body.
Despite his own limitations, Robert has become Garry’s carer but after six years the couple, of Ingle Road, Chatham, say simply existing has become a real struggle after a series of setbacks.
Garry is fully cognisant but has to communicate through gestures or typing on his phone or computer.
“He is non-verbal but he’s 100% aware,” said Robert. “He’s smarter than me.”
Physically, he went downhill during the pandemic when his physiotherapy and speech and language therapy sessions were stopped.
His muscles have now deteriorated so much he has leg lock and cannot get out of bed into his wheelchair.
Robert, 52, said: “I used to be able to stand him up to get him in the chair, then get him out of that and into the car.
“Now he can’t bend his legs, so he can’t even leave his bed. I used to take him out for coffee but I can’t do that.
“He only leaves the house to go to the hospital now.”
Garry, who is 6ft 6in, has lost nearly a third of his body weight, going from 16st to just 11st.
An occupational therapist has told them it is too late for physiotherapy to fix the damage to his legs as he does not have enough muscle left.
Robert said: “I got told it was a complicated case and that was the end of that.
“It feels like people just tick all of the boxes then put him in the corner to die.”
Garry now spends all day in his bed in the living room. Robert sleeps on the sofa every night to look after him.
Their bathroom is through the kitchen, but there is a steep step down.
Even when Garry could use a wheelchair, he could not access the bathroom.
A ramp provided by occupational therapists did not help and a corner bath meant there was little room to manoeuvre a chair anyway.
Since his stroke six years ago, Garry has only been able to have bed-baths.
The pair, who married in 2009 and have been together more than 20 years after meeting in a nightclub, say they need their bathroom adapted but previous attempts to secure changes have failed.
There is hope. A housing improvement agency visited the couple in November last year and is in the process of tendering the contract to do work on the bathroom, with a view to carry out the changes later this year.
But for any bathroom changes to be worthwhile, Garry needs to be able to get there.
Securing a specialist chair that can carry someone with leg lock has also proved a problem.
The couple say they have been asking wheelchair provider Millbrook for a solution for three years.
Robert said: “They keep telling us to go here for this appointment, go there to get him assessed, but we can’t actually get him there because he can’t use his wheelchair or get in the car.”
After speaking to KentOnline, a Millbrook spokesman said its Kent team would contact the pair and review their case, adding: “We will endeavour to resolve his current difficulties as soon as we can.”
To get Garry out of the house the pair also require a new accessible car.
They have looked into getting one via Motability, a charity that helps people with grants towards the cost of buying a car, but say it would still cost them £2,000 which they cannot afford.
Garry, a superfan of actress and singer Diana Dors, said: “I would kill to go out. I can’t enjoy life, I want my life back. You’d think that getting me out of the house would help my rehabilitation.
“I feel let down by social services. I was a palliative carer for 15 years, you’d think they would help me. The fact I worked for them, and I was a good carer.
“I had my stroke when I was 40 and I was treated like an OAP, which is wrong. But I’m still here and I’ve still got fight.”
Robert, who worked part-time at a school as an interpreter for deaf children, became reluctant to leave his husband and is now his full-time carer.
He said: “Some of the carers don’t know how to put butter on a cracker, or they don’t fill his water bottle or give him food. I don’t want to leave him alone.
“Some carers would come in to see him, and they’d ask me what I wanted him to wear that day. I would joke that I wanted him to wear a leopard print leotard and a pink tutu. Just let him pick his own clothes!
“We’re just being told to get on with it. Garry’s stuck in bed and he’s really p****d off. I feel really bad because I have to go out, but I can’t even put him in his wheelchair.
“All he says is he wants to be dead. It makes me feel bad because I want to help, but we’re at the end of our tether.
‘I can only spin so many plates and it’s gotten to the point where I can’t spin them all anymore…’
“He’s having no life. I feel like I’m letting him down and nobody seems to be helping us.
“We want to do normal things but we’re stuck here. We used to go to clubs and the cinema. Now we exist, we don’t live. We don’t know what more to do.”
Robert said he and Garry had been failed “on so many fronts”.
He continued: “There’s so much that needs to be done and so many forms to fill out, but I’ve also had a stroke myself. I just can’t fill the forms out all by myself.
“I can only spin so many plates and it’s gotten to the point where I can’t spin them all anymore.
“I don’t care if the house is a mess, at the end of the day the only thing I care about is Garry.”
A Medway Council spokesman said: “We are committed to doing everything we can to help adults live independently in their own homes.
“We are continuing to liaise with the couple, and the housing improvement agency, and works to adapt the residents’ bathroom are due to take place later this year.”