When Sheila Haynes first heard the diagnosis that her beloved husband Ron had got vascular dementia, with Alzheimer’s she admits: “I cried for the first 12 months.”
That was four years ago and Sheila has been her 76-year-old husband’s full time carer ever since.
The tears haven’t gone away but these days Sheila is so busy “getting on with things” that her own feelings have taken a back seat.
To say that her role is demanding is an understatement as she literally never stops tending to her husband’s needs – be it helping him wash and dress, helping him to eat his meals or taking him to medical appointments.
But the most demanding part of her role is the relentless day in, day out, demands of her husband who won’t sit still for very long, asks repeatedly to go to the toilet and never sleeps for more than a couple of hours a night.
“I am on the go all the while,” said Sheila, 68, who lives in Walsall.
“It’s hard to describe to someone what it’s like – unless they were a fly on the wall they wouldn’t have a clue.”
The couple have been married for 31 years and Ron used to be a woodworker before getting a job at Goodyear in Wolverhampton.
With his award he decided to set up his own haulage company, Ron Haynes Transport, based at Goodyear and he worked there until his retirement at the age of 55.
Sheila explains that for 20 years they enjoyed holidays in Tenerife and used to go out shopping together. Ron was a keen golfer and she describes them as “a tight unit.”
When Ron became ill four years ago Sheila hadn’t particularly noticed anything was wrong, although now, with the benefit of hindsight, she realises there were signs.
“He would forget where he’d put the car or his keys but I put that down to absent-mindedness,” she said.
It was on the couple’s last holiday to Tenerife that things came to a head.
They always kept to the same holiday routine of Sheila cooking the breakfast while Ron fetched the paper. But one day Ron went out in his pyjamas, returned with no paper and said the shop was shut.
“I teased him about being in his pyjamas but could tell something wasn’t quite right,” she said.
“We had been going to the same place for 20 years but another day he became lost and confused and the staff had to bring him back to our apartment.
“When we returned home we went to the doctor and were referred to Bloxwich Memory Hospital. An MRI scan confirmed Ron’s condition and, because I used to work in hospital after care I knew what we were up against.
“I cried for the first 12 months because it is impossible to forget the Ron I married, the Ron who loved a laugh.
“He used to be a keen footballer and played for Staffordshire Youth, winning cups. And he’s had his picture taken with famous footballers like Jimmy Murray.
“He was the strong one who took care of everything and now the roles are reversed.”
Sheila said one of the most isolating things about being a carer is having no-one to talk to.
“I can’t sit and have a chat and a laugh because of looking after Ron. I never finish a cup of tea because I’m always up on my feet sorting something out or trying to occupy him so he is safe.
“I would hate him to have a fall and hurt himself so have to be alert all the time.
“He has good days and bad days and night times are particularly stressful as he really only sleeps for a couple of hours. He constantly wakes me up and I am shattered every single day.
“I miss our old life and I worry about how I will cope when I’m ill or under the weather myself.”
Sheila also gets anxious about going out with Ron as people’s ignorance about his condition can cause her more stress.
“Ron tends to stand very still, very close to you, fixing his eyes on you and people don’t know how to react. Once when we were out someone took their coat off and was ready to fight him because he thought Ron’s behaviour was threatening.
“And we never go shopping on a Saturday, only when we think the shops will be quiet.
“We have also found that people with dementia are not welcome everywhere which is why I love going to the dementia cafe at Furlong House because I can take Ron, no-one is judgemental and we’re all in the same situation.”
Sheila is also full of praise for the Ace Centre in Brownhills where Ron goes on a Monday and for the kind-hearted staff at the Scott Arms who let Ron use the toilets when the couple are out.
“Nobody knows what’s round the corner. This could happen to anyone and I have chosen to share our experience to give carers a voice and raise awareness.”