Alzeihemers made my mother my child
Astrid Sharkey recalls her mother’s battle with the degenerative condition
Hermione Sutton always said that if she were ever to “lose her marbles” she wouldn’t want to keep living. As she plummeted into the haze of Alzheimer’s her children blurred into friends from the war and her last year was lived out in silence, punctuated only by snippets of old songs she could still hum.
Her daughter, Astrid Sharkey, who lives in Highgate, watched as the mother she knew as a vivacious and sociable adult, turned into someone who needed help like a small child.
It started around Hermione’s 70th birthday in 1989. She couldn’t grasp the plans for the party which her family had arranged and it spiralled from there.
Sharkey says that if her mother had been diagnosed today, modern drugs would have improved her quality of life in the 18 years that she suffered.
But back then doctors were reluctant to prescribe the newest drugs.
Alzheimer’s is the most common form of dementia in the UK with 800,000 sufferers. Though recent medical developments have slowed the onset, a cure is a long time coming.
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In August, two of the biggest drug companies in America shelved a drug they had hailed as a breakthrough after it failed several large trials in its last stage of testing.
It’s a meaningful loss for families who have faced the disease, but with early detection current drugs on offer can at least bide time. However, first signs are hard to detect and even more difficult to admit, as Sharkey explains.
“At first my mother would bluff her way through it, saying: ‘Darling, how are you?’ – all the things you’d expect your mother to say. But underneath there was the whole panic of where she was, the fog of it all.
“Imagine what it must be like, not being able to find yourself. You can’t boil an egg or switch on your own kettle but, at the same time, you look like your old self.” And the next step was worse.
“You feel terrible about taking your own parent for a test where they have to count backwards from 100 or are asked who the prime minister is,” says Sharkey.
A few years after diagnosis, Hermione began withdrawing large sums of money from the bank – she was forgetting who she needed it for or was convinced that she owed someone in moments of confusion.
It’s very common among sufferers and it begs the most difficult question of power of attorney.
“You’re disempowering the person,” says Sharkey. “But if you don’t try to take the reins, you’re leaving them in a very vulnerable state.”
When Hermione was moved into a retirement home, her greatest fear was realised – she was no longer able to look after herself and she became confused, doing things like throwing her jewellery in the wastepaper bin.
“I think she was making her world smaller,” says Sharkey. “Her world had been brought inwards. She had gone from living in a house to a small flat and then to a room.
“Gradually her world was shrinking and I think she was just getting rid of life.”
Underneath it all was a whisper of sense, a fragment of control through the confusion and the terror of forgetting a face, or getting lost outside your bedroom door.
As the years went on Hermione’s body gave way too, she became incontinent and could no longer move around on her own. One day she fell down and broke her hip. Still, her oldest memories didn’t quite crack.
Sharkey describes conversations with her mother towards the end as absurd, but lyrical, “like Alice and Wonderland”.
“She thought she was saying the right thing, but it was slightly off key. Someone once told me it was like hearing the right music from an out of tune instrument.
“Once, I told her, her birthday was coming up and I asked what she wanted. She said, ‘bank olivar.’ I put it together and I realised she was saying bank holiday.
“It made perfect sense because her birthday is August 29 which almost invariably falls on a bank holiday.”
As memory fades, there’s the tragedy of loss for everyone. Sharkey went from being a daughter, to an old friend, to being met with silence – and all the while, having to guide her mother through life, remembering what she’d said about not wanting to go on if she ever lost her mind.
“But my goodness, did she want to live,” says Sharkey. “Even when she had to be hoisted from her bed to her chair, she was relentlessly smiling.”
This month the Alzheimer’s Society launched its Early Diagnosis campaign, which aims to increase diagnosis by raising public awareness and helping families to recognise the early signs.
Only half of the 800,000 people living with dementia are diagnosed, but with detection, support and treatment from the start, quality of life and options for care can be improved.
More details at http://alzheimers.org.uk/