A man caring for his wife with dementia was faced with a £3,000 bill for two weeks of respite after his "hip collapsed".
Dad-of-two John Ball, 85, is largely alone in looking after his wife Shirley, 87, who's wary of letting carers into their home. Originally from Anfield but living in Ainsdale in Southport, Shirley was diagnosed with dementia, which involves a progressive decline of memory and cognitive abilities, 17 years ago. Her condition has rapidly worsened in recent months, leading former Vauxhall worker John to say: "If she could see herself now, she'd be horrified."
Previously a "very neat, tidy" person, Shirley now leaves a trail of cold or milkless tea and switched on lights that add to John's caring role, from which he rarely gets a break. It also adds to mounting bills, like the grandparents' energy bill rising from roughly £2,000 to £3,000 a year in just 12 months, let alone the cost of care.
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John is facing this rising cost of living, and the rising cost of caring for his wife, while dealing with the financial, emotional and physical cost of his own health conditions, like glaucoma and a cataract in his eyes. Sometimes this is a weeks-worth of heating spent on a taxi to Ormskirk Hospital, but other costs are more significant. In May this year, John found himself unable to care for Shirley after his "hip collapsed". He said: "I was on the floor, I couldn't move at all, I couldn't do anything. I had to go for an operation."
For two weeks after John's operation, the couple moved into a respite centre until John could resume his caring responsibilities. He said Shirley "was looked after and the beds and all were brilliant", but "for a fortnight, that was £3,000".
After seeing friends' conditions "suddenly fall off", he's worried about needing to put Shirley into a care home one day, and the uncertainty of when this might be. With the cost of residential, home or day care rising an average of £1,200 a year for people with dementia, according to a new survey from Alzheimer's Society, this could rapidly deplete John and Shirley's hard earned savings.
Only then would Shirley be eligible for publicly funded social care, which, unlike the NHS, is means tested, leaving people with dementia and their families to pay two thirds of care costs through unpaid care or private social care, according to Alzheimer's Society, a charity supporting people affected by dementia.
John does get a pension to live on, and the Department for Work and Pensions (DWP) pays him £69.70 per week in Carer's Allowance. But this allowance, paid to people who care for an individual for at least 35 hours a week, only rose by 3.1% in April this year, which John described as "peanuts" compared with rising prices.
Inflation now stands at 11.1%, with some of the biggest price rises seen in food products. This has driven the cost of John and Shirley's weekly shop up from roughly £70 to £100. John, a grandad of two, said: "I try not to worry about it. I feel all these things coming and I just carry on living as I normally try to do. When the money is gone, it's gone."
Alzheimer's Society warned this "perfect storm of rising care and living costs" will leave people with dementia "stranded in their own homes" over Christmas. The charity's survey of 1,166 respondents across England, Wales and Northern Ireland in October, found many people with the condition, who are often already isolated, were spending more time at home and restricting themselves to one room to reduce costs.
Among the respondents struggling with the cost of living, roughly one in seven had cut down on social activities while roughly 10% had cut down or stopped social care, which the charity said is "leaving them at real risk of crisis this winter".
Kate Lee, the chief executive of Alzheimer's Society, said: "The rising cost of living has left people with dementia facing a perfect storm of rising care costs, leading many to reduce their crucial care services and social activities, while also struggling to heat their homes.
"For people with dementia, cold and isolation can have a devastating impact on their condition, leaving them at real risk of crisis this winter. Christmas for most of us is a time of joy and togetherness, but for far too many people living with dementia it will be desperately lonely this year, with many isolated in their own homes.
"No-one should have to choose between heating their home or getting the care they need, but as people with dementia face rising care costs, many are choosing to reduce or even stop vital social activities and one in ten have reduced or stopped using social care.
"We were disappointed that Government has delayed the care cap for two years, which would have set an £86,000 limit on what people contribute to their own care. This was a first step towards tackling crippling care costs, at a time when people with dementia are facing even bigger bills.
"We appreciate the additional investment for social care announced recently by the Chancellor but as we approach the difficult winter ahead, we need a long-term solution to fix our broken care system and deliver the quality, affordable care people with dementia deserve."
Kate added: "People with dementia can already feel abandoned and isolated and this winter it is set to get worse. No one should have to face dementia alone. Alzheimer's Society is here to support people at this difficult time and we're asking anyone in a position to donate to help us continue to offer vital services this winter."
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