Living with Alzheimer's: 'Jan doesn't understand, but I know she loves me.'
3:50pm Thursday 13th August 2009 in Your Town
Living with Alzheimer's: 'Jan doesn't understand, but I know she loves me.'
A HARWOOD man has become a national campaigner in the fight for more help for dementia sufferers and their carers.
Former headmaster Jim Swift, who lives in Hough Fold Way with his wife, Jan, has not only been asked to speak at national and regional conferences but has been filmed at home for a new TV series being screened this month.
“I’m not just doing this for me but for all the carers who may not be able to speak up for themselves,” explained Jim, aged 63.
He is urging the Government to “genuinely look after” carers and dementia sufferers, and in particular is fighting against the loss of the carer’s allowance when individuals reach 65.
“It’s a ridiculous situation,” he said.
Jan — a former primary school teacher and now aged 65 — was just 52 when the first signs of dementia surfaced on holiday in Italy, when she suddenly asked her husband where they had been the previous day.
“We had visited Venice on a memorable visit,” he recalled.
“But I looked at Jan and saw the utter fear in her eyes as she struggled to remember this fantastic day.”
The symptoms gradually worsened and, eventually, Alzheimer’s disease was diagnosed.
“I think I imagined in those early days and months that Jan would be reduced to a vegetative stage very quickly,” said Jim.
“So I rushed around making wills and getting Power of Attorney.
“We had farewell parties and I tried to make every day Christmas for her.”
Instead, there was the long, hard daily routine of caring for someone, who as Jim described, “suffers from a horrible disease that just eats away your humanity bit-by-bit, day-by-day”.
Each night, Jim has to get up as many as six times because Jan wakes frequently.
She has no concept of putting on clothes –“she’d put a t-shirt on her feet” – so Jim supervises her, then makes her breakfast.
Jan can feed herself but often stops when Jim has finished, assuming the meal is “over”. He has to look after her in the special shower he used the couple’s savings to build, “otherwise I’ve found her washing herself with the plug”.
And Jan follows him around all day, whatever he is doing.
Jim’s lifeline is the help he receives each week, especially from the Admiral Nurses who are trained in looking after dementia patients. He also has help from the Crossroads organisation and the couple’s daughters Helen and Claire visit regularly.
Jan also goes to Firwood day centre and occasionally has respite care. But, as well as being a frontline carer, Jim has turned himself into an advocate and campaigner for other carers and dementia sufferers.
He has lobbied Parliament, spoken to former Health Secretary Alan Johnson on Radio Five Live, and more recently been filmed for Saints and Scoundrels, a TV series about people who abuse the benefits’ system and people let down by it.
Jan has a monthly disability living allowance of £477.80, and Jim has a carer’s allowance of £212.40. This, however, will cease in two years time which Jim says is a “crazy situation” as he will still be caring for Jan, and her condition will have deteriorated.
“To care for Jan 24/7 as I do would cost at least £400 a week otherwise,” he said.
“The system desperately needs to change.”
Back at home, Jim makes Jan’s days as happy as he can. The couple recently celebrated their 40th wedding anniversary with a low-key event.
“Sadly, Jan didn’t understand what was happening, but I know that, even when she gets angry at me, she still loves me,” Jim said.
Jim’s work has also seen him strike up a friendship with TV newsman John Suchet, whose wife Bonnie also suffers from dementia.
Mr Suchet, brother of Poirot actor David, spoke of Mr Swift’s invaluable support when he went public over his wife’s condition earlier this year.
l For details about Jim’s fight and the Bolton Early Onset Alzheimer’s Group which brings carers and their charges on the third Monday afternoon of each month at Farnworth’s Brooklyn Hotel, email him at james.swift2@ntlworld.com.
