Husband shares how he grieved for life he’s lost
OPENS UP TO HELP RAISE ALZHEIMER’S AWARENESS
AN ALZHEIMER’S Society survey revealed that last year a sixth of people with dementia spent Christmas Day alone.
The same research said this left nearly a fifth of families struggling with feelings of guilt and anger over their “lost Christmas”.
It announced these figures on launching its Christmas Appeal, calling on the public to donate what they can. Funds raised will help the charity reach more of the estimated 39,080 people living with dementia in the region.
For Bill Wilson, of Jesmond, the festive season has become a time when feelings of loneliness and anxiety are heightened and a time when the loss of the lifestyle he and his wife once enjoyed comes into even sharper focus.
The former career civil servant and his wife Jo, a high-flying businesswoman and Doctor of Philosophy, would spend their Christmases abroad on luxury cruises or enjoying sun-drenched beaches in the Caribbean or Far East.
But their lives were turned upside down when Jo was diagnosed with Frontotemporal lobe dementia with Alzheimer’s in June 2020, aged just 66. Bill is her sole carer and, while he wouldn’t have it any other way, admits the pressure has taken its toll.
He said: “Last Christmas was the first we had spent at home in many years and I found it really hard.
“I wanted it to be a traditional Christmas, but it was a lonely day for me if I’m honest. I wrapped the presents and put them around the Christmas tree – the ones I bought for Jo and the ones I bought for myself – but she wasn’t really aware of what was happening.
“I suppose I had my rose-tinted glasses on, thinking we would have a lovely day, not realising how isolated I would feel.
“We did visit Jo’s older sister Philomena, who lives in Wallsend, but it still didn’t feel like a traditional family Christmas.
“At one point over the festive period I hit rock bottom and, for no particular reason, fell to my knees on the kitchen floor and cried for about 45 minutes.
“I just felt no one cared or understood what I was going through. My world was crumbling around me and I was struck by the realisation that things would never be the same again. I suppose I was grieving the life I’d lost.
“Jo deteriorated rapidly in lockdown and her condition is even worse now, so she isn’t able to hold a normal conversation.
“Nowadays, she doesn’t even know I’m her husband – she refers to me as ‘Uncle Bill’ because that’s what our great nephew and niece call me. But I keep trying to reach out to her because she’s my wife and I love her, and nothing is going to change that. We’ve been together nearly 50 years.”
Bill, 66, who counts working on
London’s 2012 Olympic bid as one of his career highlights, believes talking openly about dementia is vital to raise awareness of the condition and tackle stigma.
He added: “There is definitely a stigma associated with dementia and there shouldn’t be.
“It’s a brain disease and, like cancer, can affect anyone. I want to shout about it from the rooftops to raise awareness and help organisations like Alzheimer’s Society, whose information and advice I’ve found really helpful.”
As for this coming Christmas, while Bill is under no illusions that it will be hard and lonely, he feels better prepared.
He said: “I think I will cope better this year because I know exactly how things are likely to pan out.
“I’m much more resilient and I certainly won’t have my rosetinted glasses on this time.
“Jo will open her present and though she’s unlikely to get excited, there might be a flicker of happiness on her face. I’ve learned to grab on to those small crumbs of comfort. She may not know I’m her husband, but I know she’s my wife, and her personality is still in there somewhere, you just have to look harder to see it.”
Alzheimer’s Society’s survey also found that of those who did see someone during the week of Christmas, nearly a third merely had a 15-minute visit from either a neighbour, family member or paid carer (30%) and nearly a half only had visitors to drop off Christmas dinner and presents (44%).
Over a sixth of families are having to change this year’s celebrations to adjust to an increase in symptoms (17%) in their loved ones.
Two thirds of family carers (66%) are already feeling anxious about Christmas, with a quarter now having to cope with increased caring responsibilities due to an increase in their loved ones’ dementia symptoms (24%).
A third are worried they will be left exhausted and won’t get enough respite (30%). This comes after family carers in the North
East spent 3.9 million extra hours caring for loved ones with dementia during the pandemic.
Alzheimer’s Society saw a significant spike in demand for its services during the ‘lockdown Christmas’.
Calls to Alzheimer’s Society support services soared to double the previous year during the Christmas week, remaining high after Christmas too.
Danielle Cooper, Areas Manager for Alzheimer’s Society in Northumberland, Tyne and Wear and Durham, said: “As the North East looks to go bigger and better this year to compensate for a Christmas in lockdown, people with dementia need us like never before.”
Help Alzheimer’s Society be there for people affected by dementia during one of the hardest times of the year by donating at alzheimers.org.uk/xmas