I’mterrified Isoonwon’t recognise mydaughters
Mum Shelley has Alzheimer’s at 44. Here, she bravely gives an interview that will make you want to hug your loved ones very tight . . .
‘Most of all I’m worried for our children’ ‘At least I know what’s wrong so I can get help’
WITHOUT the whiteboard stuck to her fridge with a ‘to-do’ list and Post- it notes dotted around her home, busy mother-of-five Shelley Sheppard admits she’d be completely lost.
There’s a note of the phone calls Shelley can expect, deliveries due and the names of people who’ll be visiting — including me — in case she mistakes them for random strangers, having forgotten why they are there.
On a second whiteboard stamped with the words ‘Remember It!’ are meal planner reminders left by 49-year- old Paul, her devoted husband, before he leaves their Nottinghamshire home for work each morning.
Sometimes he will also stick brightly coloured Post-it notes over the cooker to make sure she doesn’t forget to turn off the gas hob — as she has been prone to do lately, accidentally setting fire to tea-towels or leaving food to burn dry.
Shelley’s daughters — Alesha, 25, Chloe, 23, Keira, 20, Kaylea, 16, and Shannon, 15 — are also on alert for any sign that the calm, capable, unflappable mum they know and love is slipping further away from them.
For these days, no sooner does a thought or task come into Shelley’s mind than it disappears like water through a sieve, leaving no trace in her memory.
Conversations are forgotten almost the minute they are over. The books that Shelley once loved to read no longer leave any impression. TV soap plotlines are totally baffling to her.
‘To look at me, you’d never imagine there was anything wrong with me, which makes it so much harder for people to understand,’ says 44-year- old Shelley, a former hairdresser who, at first sight, seems no different from any other overworked, slightly scatty, middleaged school mum.
‘I never thought that at this age I’d be waking up terrified of losing every precious memory I have, and one day not being able to recognise my own family.’
Like most people, Shelley used to think that Alzheimer’s disease happened only to much older people. But in November last year, a brain scan led to the shocking conclusion that her symptoms were consistent with early onset of the disease, which is the most common cause of dementia.
Snuggled up on the sofa with three of her daughters, tears roll down Shelley’s face as she confronts the frightening reality of what her new future looks like. This, she fears, is just the beginning.
‘I used to joke that when our last two girls had finished school and left home, I’d go travelling with Paul in a sports car and enjoy middle age before we grew old together,’ says Shelley.
‘But now I’m too nervous to leave the house on my own in case I can’t remember where I am or where I am going. That’s my biggest fear. I used to be so confident, but I feel very vulnerable now.’
Kaylea and Shannon still live at home, while Chloe lives just around the corner with son Jaiden, four, and Shelley is a big part of her grandson’s life. Alesha is a paediatric nurse based in Reading, while student Keira lives with her partner and son Layton, four, in Lincoln.
‘It’s our children I’m worried for most, rather than myself,’ says Shelley. ‘ What’s going to happen to all the happy memories I still want to share with them? Who, if not their mum, can tell them about the day each one of them was born?
‘The joy I felt at meeting these new little people? All the things that happened when they were growing up, but were too young to remember?
‘What will happen on their wedding days? It’s unbearable to think of them walking down the aisle to see someone who looks like their mum, waiting with a vacant look in her eyes.
‘I have two grandchildren, who I adore, and another due in May. I was there for my grandsons’ births and I’m petrified that one day they’ll run up to their Nan and I’ll say, “Who is this child?”
‘My husband is a wonderful man and I know he’ll always love me. But Paul’s only 49 and it just seems so cruel for him to lose the person he married so soon. I’d hate to end up a burden. I’ve told them all to put me in a home when I get really bad. They’re young and I want them to enjoy their lives rather than worry about me.’
But Paul, a store assistant, won’t hear of it.
‘Shelley sat me down and told me she wasn’t going to put me through having to look after her and said she could always take her own life,’ he says.
‘I was devastated to hear her talk like that. The worst thing is that I couldn’t tell her it would get better. I felt helpless.
‘All I can do is explain to her that no matter what, she will never be a burden. Shelley has always looked after us and she’s always been able to keep on top of five things at once. This illness has taken that away from her. Now she needs our help.’
Shelley’s two youngest daughters, A- level student Kaylea and Shannon, who’s studying for her GCSEs, hug their mum and start brushing away their own tears, while sister Chloe, a support worker, furiously shakes her head, echoing her father’s words.
‘We’d never let her go into a home,’ says Chloe. ‘ No way is that going to happen. Mum has always been there for us, not just as a wonderful mother, but as a best friend, and we’re going to be there for her when she needs us.’
Kaylea adds: ‘Mum has always taught us that when life is hard, you just get on with it. She’s always had a fantastic sense of humour, making us laugh when all you want to do is cry, so we’re not going to change now. We’re in this together.’
And, remarkably, Shelley somehow manages to replace their tears with laughter, by joking: ‘You’ll feel differently when I’m wandering down the road, confused and in my nightie.’
In turn, they affectionately tease their mum over her entertaining ‘random’ conversations — making light of the slow, but unmistakable, change in her.
‘The minute something comes into Mum’s head, she has to say it immediately, otherwise it’s gone, even if has nothing do with what everyone else is talking about,’ says Kaylea. ‘Remember what you said last night, Mum?’
But Shelley doesn’t recall any of it. Not the conversation about forgetting to walk the dogs, or her joke about having to spend an hour on the treadmill instead to make up for it. Her face is blank: it’s all gone.
Often, during our interview, she struggles for the right word or suddenly loses the thread of what she’s saying. When more than one person is talking, she looks overwhelmed.
While her long-term memory remains intact, her short-term memory is virtually non- existent — to the point she would swear blind she’d never seen a film she’d only watched the night before with her family.
All of them agree that such a drastic and rapid decline in Shelley’s cognitive abilities would have been unthinkable not so long ago.
For years, Shelley was regarded as a mistress of multitasking, effortlessly juggling household tasks, school runs, extra- curricular timetables, voluntary work and care for her dying mother — all the while relying on nothing more than her own mental diary.
She never forgot a date, a birthday, a face, a name, an appointment, who was where, what time they’d be home and what she’d be cooking for dinner. A lifetime of recipes were imprinted on her brain, rustled up on auto-pilot.
Today, she shows me a handwritten book of family favourites which she and Paul painstakingly compiled when she started to lose her memory — and she admits: ‘I’ll look at
the recipe, go to the fridge to get the ingredients, open the door, then forget what I’m supposed to be looking for and what to do with it.
‘My occupational therapist is now going to make a cookbook using pictures to make it easier for me.
‘Sometimes I’ve made a cup of tea and put the kettle in the fridge. I don’t know if I will stay like this, or get worse.
‘I feel very unlucky to have this disease, but at the same time lucky that at least I have a diagnosis and know what’s wrong with me so I can get the help I need.’
Shelley first noticed problems with her memory and organisa-tional skills four years ago when she was caring for her elderly mother, Anne Nisbet, who died from lung cancer aged 72 in November 2015. Initially, she put her difficulties down to stress, age-ing, hormones and dieting.
During the two years Shelley cared for her mother, with support from her sister and brother, her weight ballooned from lack of exer-cise and comfort- eating to cope with the trauma of losing her mum. Diagnosed with high blood pressure and pre-diabetes, one of the last things her mother said to Shelley before she died was to ask for a promise to look after her own health and lose weight.
Shelley kept that promise. Over two years, she shed 6 st and dropped from a size 20 to a size 12-14 by joining a slimming club and exercising more. But even though she reversed many of her physical health problems, she still often complained of feeling dizzy.
Her family, who thought she’d just been pushing herself too hard to lose weight, also noticed that she was becoming very forgetful and disorganised.
Shannon says: ‘Mum would get letters and emails from the school reminding her about parent-teacher meetings and I’d come home from school and say, “Are you coming to the meeting tonight, Mum?” And she’d say, “What meet-ing?” She never used to forget.
‘Once, I brought a friend from school home, but the next time Mum saw her she insisted they’d never met before.’ Kaylea adds: ‘At Christmas, we always used to give each other a £5 joke present. A couple of years ago, Dad bought Mum some “Memory Mints” because she was always forgetting things. We all used to laugh it off, but the more it happened the less funny it became.
‘Mum was a hairdresser, so we never used to trust anyone else to cut our hair. It was really upsetting when she cut mine unevenly, then couldn’t work out how to make it right. She’d get really frustrated and none of us could understand what was wrong with her.’
It was Paul who, increasingly worried, kept pressing his wife to make an appointment with their GP. The GP referred Shelley to a consultant, and in March last year she also had an MRI brain scan.
‘I didn’t want to go for a scan. I thought there was probably nothing wrong with me and that it would be a waste of NHS resources,’ says Shelley.
She was shocked to be told that the scan had revealed pockets of brain damage caused by a silent stroke. Silent strokes often have no obvious symptoms when they occur, but can leave lasting damage to areas of the brain deprived of oxygen from a blockage or bleed. Memory and cognitive function can be affected.
Shelley was put on blood-thinning medication to prevent clots, which might trigger a more devastating stroke, and referred to a neurologist at the Queen’s Medical Centre in Nottingham.
There, Shelley underwent a more detailed PET (positron- emission tomography) scan.
Given Shelley’s age, the family was totally unprepared when they were told five months ago that the scan had revealed the presence of amyloid protein plaques in Shelley’s brain — a hallmark of Alzheimer’s disease.
According to Alzheimer’s Research UK, around 520,000 people in Britain have Alzheimer’s disease, but only 4 per cent of those are under the age of 65. However, Shelley wonders if there could be other people like her who just haven’t been diagnosed.
‘Many women who have memory problems go to their GP only to be told it’s stress, or the menopause, or something else,’ says Shelley.
She has been prescribed donepezil (Aricept), which is used to improve the cognition and behaviour of people with mild or moderate Alzheimer’s, but which cannot cure the condition.
Shelley says: ‘There is no history of Alzheimer’s, dementia or even stroke in my family, so — although it’s devastating — I feel very fortu-nate to have a diagnosis and at least know what’s wrong with me.’
Although not all people with evidence of plaques in the brain go on to develop Alzheimer’s, further cognitive assessment left the family with little hope to cling to.
Daughter Chloe, who attended the assessment with her parents, says: ‘ Listening to Mum struggle to answer the questions I realised for the first time just how bad it was. Dad was in tears and I had to leave the room because it was too painful to witness.
‘ Mum is the one we’ve all depended on: she’s the one whose held us all together through the good times and the bad. We don’t know what we’d do without her.
‘She’ll always be our mum and we’ll always love her. And just as she looked after her mother right to the end, we’ll do the same. It’s our turn to look after her.’
‘It’s our turn to look after Mum now’