Dementia campaigner: Sally Magnusson (RII SCHROER)
“With dementia you cannot comfort oneself with the reality that the brain shields you from what’s going on,” says Sally, who presented BBC Breakfast Time in the Eighties and now co-presents Reporting Scotland for the broadcaster. “She would say items this kind of as, ‘I don’t know how to hold onto myself I seem to be to be going further and more away’.”
A single in three of us will finish up like Mamie, battling the dehumanising effects of dementia, a situation Sally likens in her guide to a boat broken free of charge from its moorings. The condition, for which there is no remedy, manifests itself in several types such as Alzheimer’s, when protein “plaques” and “tangles” build in the structure of the brain, leading to the death of brain cells, or vascular dementia, caused by restriction in the movement of blood to the brain. It is costing taxpayers in the Uk far more than £23 billion (a lot more than cancer and strokes mixed) and is the most significant challenge facing Western nations. In December, when David Cameron, the Prime Minister, hosted the very first ever G8 dementia summit in London, he named for greater care and far more analysis into a condition that, he mentioned “steals lives, wrecks families and breaks hearts”.
Given how numerous households it unites – some 800,000 Britons suffer from various types of it – dementia is a lonely, isolating expertise, in accordance to Sally, largely since of the stigma still connected to it. “It’s shared by so a lot of millions of people and however when you’re in the middle of it you feel so utterly alone,” she says.
As unmistakable indications of the illness showed themselves in Mamie, the Magnussons neither mentioned it nor sought a formal diagnosis. It was too agonizing. They knew how this story ended having witnessed one more of their relations – Mamie and Anna’s older sister Harriet – rocking back and forth in a chair in a care residence, fists clenched, pleading for assist. “If you don’t title anything, you can pretend everything’s standard – that was my father’s way,” says Sally.
Behind the scenes though, Magnus, who was born in Iceland and had fallen in love with Mamie when they had been junior reporters in Glasgow, did all he could to safeguard his wife. He took discreet action to draw an finish to her public speaking when she started out to ramble, and ignored her more and more “distrait” behaviour.
Holding on to the past: Mamie in her prime
Meanwhile, her young children – Sally, Jon, Margaret and Topsy – vowed that when the time came they would care for her at home, an choice for which Sally was grateful. “We imagined what ever it will get we will do and luckily we had every thing going for us: two of us lived relatively close to my mother and she had her twin sister residing with her.”
Cocooned by Magnus and with the adore and consideration of her household, Mamie remained reasonably coherent right up until her husband’s death in 2007 aged 77. But afterwards she grew to become a danger to herself, creeping out of bed at night or stepping out into the street without hunting. Desperate to protect the fragile thread that held collectively Mamie’s identity, Sally and her sisters (by this stage Jon’s time was taken up caring for his wife, Dale, who had cancer) devised a rota making sure a family members member could be with her at all occasions. Mamie was at her worst when lethargy took over so they engaged her continuously with music and previous stories, an encounter that so effectively brought back Mamie’s radiant smile and throaty laugh that Sally has because set up a charity, playlistforlife.org.uk, encouraging families to compile perform lists of meaningful music for their loved ones. “We really don’t have medication but we have each other,” Sally says. “Henry Simmons of Alzheimer’s Scotland was proper when he said that interaction is the chemotherapy of dementia.”
As a freelance journalist Sally discovered it less complicated than numerous to find time to care for her mom but when Mamie began to require 24 hour assistance, the pledge to preserve her at property grew to become a lot more challenging. Sally turned down a number of career options and spent perilously little time with her husband and children.
“I felt as if I wasn’t doing anything particularly well. But if we were going to hold on to her and proceed to be responsible for choices, we required to be there,” she says. Even Sally’s teenage sons were drafted onto the rota to entertain their grandmother. “Part of me did not want them to bear in mind her in this way but certainly it can only be good for youngsters to recognize what it is to have to care for older people?”
Marnie as a new mother, with Magnus and Sally
It would all have been so significantly easier, Sally says, if there had been dementia professionals on hand to help them – an initiative the Government is now introducing inside of communities – but the guidance they received at the time was negligible. No a single told them what to assume or how they could make Mamie much more cozy. “We have been three articulate professional females who aren’t afraid to select up the cellphone and request queries but we have been utterly lost in the bureaucracy of it all,” she says.
Even though Sally did not encounter the neglect or mistreatment that has been reported in hospitals across the country, at Mamie’s regimen appointments she was met by “endemic thoughtlessness” from medical workers. When Mamie broke her hip and was admitted to a hospital outside Glasgow, the family was discouraged from spending time with her. “Wards devoted to children actively encourage shut loved ones even though in previous people’s wards, where there is the same require for a acquainted encounter and touch, relatives carry on to be regarded as a nuisance,” Sally says.
The situation is bettering however. In an work to boost the high quality of daily life for dementia patients in hospital, the Government is deploying “dementia champions” and investing in online staff education – initiatives endorsed by this paper’s Action On Dementia campaign. Meanwhile, expert dementia units are opening at numerous hospitals, taking the stress off elderly care wards: C22 at New Cross hospital in Wolverhampton is a light, roomy 20-bed annexe, with a garden, day rooms and skilled workers. But such innovations will only make a big difference, according to Sally, if healthcare pros understand to engage with sufferers as men and women rather than infants.
“In some hospitals family members are getting encouraged to display images of how the patient utilised to search before they got sick, and the things they enjoyed doing,” she says. “It helps the workers see the man or woman behind the Zimmer. They never ever stop being the man or woman they were prior to, even if we can no longer see them.”
Showing her mettle: Mamie, with daughters Sally, left, Topsy, back, and Margaret
The disappearing act is the cruellest part of dementia. How does a single engage with a particular person who no longer understands who they are, let alone who you are? Sally concludes that the sickness has the capacity to flip even the most saintly of outdated folks – and their carers – into monsters. She recalls the time when she went to kiss her mom on Christmas Eve, only for her to hiss “get your hands off me”. Sally broke down in tears – Mamie’s eyes were cold with hostility – but at other occasions, when her mom was being specifically uncompromising, she’d get rid of patience and snap. “I come to feel awful about things I mentioned, times I misplaced my temper and the harm look in her eye,” she says.
In her bleakest moments Sally wondered how prolonged the predicament could be endured, a believed she is not proud of having but shares with countless carers. Yet another component of her didn’t want to shed her mother, ever. Mamie was nonetheless Mamie appropriate up until the end of her existence she repaid her family with flashes of her old character. “It was occasions of crisis, such as when I overheated the bath and nearly killed her, that her previous strength and feistiness would surge back,” she says. “She liked to be put on her mettle.”
It’s impossible to say whether or not the Magnusson’s assistance, from the commence, meant they were ready to hold on to her for longer. She died on twelve April 2012 aged 86 surrounded by her grandchildren but Sally admits that the last days weren’t any much less agonizing: her mother suffered as much as her older sister Harriet as the illness consumed her thoughts and physique, severing her from actuality altogether. “For a extended time I was haunted by those photos. It is taken a extended time for the memory of my mother prior to she was ill to come back,” Sally says.
What the experience convinced her of, nonetheless, is that the Government should be focusing care on living, rather than dying. “If you can maintain people connected, they can have a good good quality of lifestyle,” she says. Her journey with Mamie was a challenge, there can be no denying it, but along the way they sang and laughed. And regardless of her fragmenting thoughts, her mother could nevertheless beat her at crosswords and table tennis.
In which Recollections Go by Sally Magnusson (RRP £16.99) is available from Telegraph Books at £14.99 +£1.35 p&p. Get in touch with 0844 871 1514 or go to books.telegraph.co.united kingdom
Go through more: Dementia diagnosis: Britain’s national shame
Read through a lot more: ‘Dementia map’: how diagnosis prices vary across England
"We have to give dementia sufferers a very good high quality of life"
