Emma Cartwright’s Mum, Alison, died from Benson’s Syndrome at the age of 53.
Mum was ambitious and she was always going on courses and learning something new.
Her work as a facilities manager for a water company meant she drove all over the country and she also worked with schools, helping them with their IT.
She was always busy and her brain was sharp.
Despite living an hour’s drive away from Mum, we often went for walks and meals together, and we spoke or emailed most days.
Mum and Dad had got divorced when I was 21 and I’m an only child, so Mum and I were close.
The first time I realised that something wasn’t quite right was in 2010 when Mum (then 46) came on a course with me in London and kept losing her tube ticket.
‘Put it in this pocket and then you know where it is,’ I told her each time we got to a ticket barrier.
But even then she forgot where it was and I could see the panic on her face.
After that, I noticed little things like when she put a cup on the table it would hang off the edge.
Mum was a Yorkshire lass who didn’t show much emotion, but she started crying for no reason.
Alison, 47, at a wedding before she was diagnosed.
When we went on a course in Bristol, I’d heard the shower being turned on in our bathroom, but she came out dry, with a towel round her as if she’d had one
She also seemed forgetful and I’d find her in the kitchen, confused.
A competent cook, she’d have ingredients but wouldn’t know what to do with them.
She called it ‘Alison’s lurgy’ and made light of it.
Then she stopped phoning when she said she would. That was odd.
Mum had never let me down in any way.
When we went on a course in Bristol, I’d heard the shower being turned on in our bathroom, but she came out dry, with a towel round her as if she’d had one.
At first, I thought she had depression as she stopped seeing most of her friends.
Those she did see thought she might be going through an early menopause.
They said it gave women mood changes and made them forgetful.
Mum was also having hot flushes, so I assumed her friends were right.
In my darkest moments, I wondered if she had a brain tumour.
Alison had always been good with numbers but it became clear she didn’t know what day it was.
Ironically, that would have been a better option because at least there might have been some treatment.
In the end, I went with her to her GP, where she had to answer a set of 10 questions.
It became clear she didn’t even know what day it was.
And when she was asked to take seven away from a hundred, she couldn’t.
My heart sank.
Mum had done some book-keeping – she’d always been great with numbers.
After having brain scans at Crawley Hospital in West Sussex throughout 2012, she was eventually diagnosed in 2013 with Benson’s syndrome – a rare form of Alzheimer’s disease.
There was little information about it, but it felt so unfair.
I thought of Alzheimer’s as an old person’s illness, but Mum was only 48.
Around that time, in January 2013, my dad Neil suffered a double aortic aneurysm and died at just 51.
I’d been in Florida and as I got off the plane at Gatwick, I knew something awful had happened.
My world had been turned upside down.
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My dad had gone and I was losing my mum as I knew her.
I needed to process what was happening and who I was without parents and I went to Southeast Asia to teach English for nine months.
I spoke to Mum as often as I could but when I got back, having put my life into storage, I had to unpack it and deal with what had happened.
I realised I desperately wanted to make a difference to people’s lives and maybe help them through similar ordeals, so I trained as a life coach.
By now, Mum knew that she had Alzheimer’s and I tried to reassure her.
But how do you reassure someone that they’re going to be all right when you know they’re not?
There’s no treatment for Alzheimer’s.
All I could do was be strong and spend as much time with her as possible.
Every day, Mum was losing her vocabulary, and she often couldn’t think of the words she wanted.
Her writing, once neat, was now like a two year old’s.
It took 20 minutes to get her into my car because she couldn’t judge how low to go to sit down and she’d panic at zebra crossings because she thought there were black holes in the road.
Emma, 14, with her mum and dad at a family party.
She started getting up in the night and falling.
The condition really affected her co-ordination and balance.
She tried so hard to hide it.
When I phoned, she’d say breezily: ‘I’ve been decorating and I’m just doing some ironing.’
I played along with it.
I knew she couldn’t do those things but I didn’t want to make her feel bad.
The hardest thing of all was watching Mum slip in and out.
Sometimes she’d be the old Mum I knew, then she’d fade away into someone I didn’t know.
In 2015, Mum and her second husband Richard moved back to Pannal in North Yorkshire, where the rest of her family are.
But her descent after the move was so steep, it was like she’d fallen off a cliff.
Dame Barbara Windsor has recently been diagnosed with Alzheimer’s.
Her parents and sisters tried to get her out and about, but she was too anxious.
She paced up and down the house and she talked to some imaginary person, telling them, ‘They made me do it.’
She started getting aggressive and throwing punches, and speaking her mind tactlessly to her carer.
She’d let out ear-piercing screams.
I didn’t know how to be around her so when I visited, I would clean and make food.
Now I wish I’d spent more time with her.
Alison’s parents and sisters tried to get her out and about but she was too anxious.
Luckily, by December 2016, an early-onset Alzheimer’s home opened virtually on her doorstep.
Mum was its first resident but she wasn’t there long.
She spent a month in Harrogate District Hospital where she sat, staring into space, not wanting to eat or drink.
The end came quite quickly on January 2 last year.
Mum was at the home, with my grandad by her side, when she suffered a pulmonary embolism.
Afterwards, people told me I should be glad for the time I had with my mum, that it was for the best and she was no longer suffering.
I wanted to scream, ‘Why should I be happy? I’ve lost my mum. She was only 53.’
There are so many things, like marriage and children, that I’ve yet to experience, and neither my mum nor my dad will be there.
Emma, eight, on holiday with her mum in the South of France.
I find that hard.
Since losing my mum, I’ve needed a focus, so I have signed up to do a 100km walk in Dorset this summer and next year I hope to do a Machu Picchu trek to raise funds for Alzheimer’s Research UK.
If I could have had one wish, it would have been to spend a day inside my mum’s head so I could understand what she was going through.
She couldn’t tell me because she didn’t have the words by then, but I hope that one day, with funds like the ones I’m raising, researchers will understand more.
Hopefully a cure will be found for this condition, which is not only devastating for the people who have it but also their friends and families robbed of their loved ones – as I was with my mum, far, far too soon.”
For more information, visit justgiving.com/fundraising/trek2remember and alzheimersresearchuk.org.
Benson’s Syndrome, the facts.
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