44 The Times Magazinet was on our “girls” trip to Cyprus that
I noticed something felt off with my
mum. We were staying in a sprawling
hotel, the sort with five pools. So the first
time it happened I put it down to her
being somewhere large and unfamiliar.
We came out of our room and Mum
turned right instead of left to go to the
lift. Easy mistake. But over the next five
days she did it every time. I started to
notice that she held back, letting me lead the
way whenever we went from pool to room.
“You don’t think she’s got Alzheimer’s, do
you?” I asked my sister on the phone, after
we’d got back, semi laughing it off.
Four years and countless wrong turnings,
missed appointments and one actual search
and rescue later, we have the diagnosis. My
81-year-old mum, the tiny, powerful centre
of my world, who’d know if she’d been short-
changed by two pence, has been diagnosed
with vascular dementia and Alzheimer’s.
Every three minutes somebody develops
dementia. There are currently around 900,000
people in the UK living with the condition – a
figure that’s expected to dramatically increase
in the coming years, despite diagnosis rates
falling to a five-year low because of the
pandemic. And while there is wealth of
information out there to help, from care
options to deciphering an LPA (Lasting Power
of Attorney), there is a black hole when it
comes to understanding the emotions of
watching the one you love slowly disappear.
In a very short space of time I’ve said
goodbye to the mother and best friend I used
to know. The Maltese ball of energy who,
as a single parent, balanced a full-time factory
job with lovingly steering three kids into
adulthood. The grandmother depended upon
to help bring up my own two boys. Whose
chocolate brown eyes twinkled at the constant
mickey-taking from those tiny lads who are
now six-footers – “cheeky buggers” being one
of her favourite phrases.
That sassy twinkle has been replaced by a
slack gaze, one of the many drip-drip signs of
a personality whose fire has been put out. It is
a huge understatement to describe dementia
as cruel. This illness creeps along before
pouncing in the most shocking way, and it is
the hardest thing I have ever had to process.
For a couple of years after the Cyprus trip
Mum muddled along, forgetting directions or
her door keys and writing appointments down
on random bits of paper that she would lose.
My sister and I started a running conversation
about whether we needed to have her tested
for dementia. I think another d-word was
running in the background too. Denial. Ours.
Her forgetfulness was a bit annoying, but not
horribly worrying, we told ourselves.
But then things began to happen that
couldn’t be put down to absent-mindedness.In spring 2019 my stepdad, George, died
and Mum nosedived into grief. It soon became
apparent that George had masked much of
her deteriorating condition. Weeks later, we
took Mum on holiday to Croatia and then
back to ours in Kent. One afternoon, while
looking at my bookshelf, she spotted The
Outcast by Sadie Jones, and asked to borrow
it. I thought she was joking. “Mum, you’ve just
read that book on holiday!” I told her. That,
as I now know, was the most insensitive thing
I could have said. Her eyes looked frightened
and she insisted I was wrong. But I had taken
a photo of her reading it on a sunlounger and
flourished my phone to prove the point. She
went very quiet. Dread gripped my stomach.
Soon afterwards we were plunged into the
pandemic, which kicked a doctor assessment
into the long grass, as well as any physical visits
to her bungalow in Shrewsbury. Like many
elderly people coping alone, Mum mentally
fell off a cliff, suffering from severe loneliness,
and having to make do with my sister, who
lives nearby, waving at her from a distance and
leaving supplies on her doorstep. Getting her
familiar with FaceTime turned into a really bad
sitcom, as she failed to understand that she
didn’t need to hold her phone to her ear to
hear us. You’ll count those laughs, believe me.
As soon as lockdown eased, we brought
Mum to ours for a few weeks. She looked like
a little bird. She said she’d had no one to cook
for and so hadn’t bothered. We noticed she had
also stopped reading, knitting and doing the
crossword, always daily hobbies. We hoped
with a bit of rallying we could reignite a spark
and one afternoon my husband suggested she
make a risotto, a dish she could do with hereyes closed. Minutes later he found her in the
kitchen, attempting to place an onion into
boiling water instead of chopping and frying
it. She turned to him, looking broken, and
whispered, “I’ve forgotten how to cook.” Given
that she’d made every meal I’d ever eaten from
scratch, this was a significant and heartbreaking
admission. It also explained the weight loss.
Ask most people with no experience of it to
describe dementia and they’ll probably tell you
it’s a memory problem that makes pensioners
forget names or put the iron in the fridge. It is
spoken about with gallows humour because of
ignorance. Or dread. According to Alzheimer’s
Research UK, dementia is the most feared
health condition for people over the age of 55.
To me it is a disease that invades your
loved one so completely – mind, body and
soul – that you are left with a faded Polaroid
when there used to be full colour.
The official diagnosis eventually came last
spring – via a phone assessment. I heard the
news while returning home on the train from
work and was shocked at my own distress.
Yet, while it felt like the beginning of the
end had been rubber-stamped, the diagnosis
prompted a positive shift in our collective
family attitude. It was official and we had to
deal with it. My sister immediately set about
contacting charities from Alzheimer’s Society
to Age UK, while I googled the hell out
of dementia. We were soon swimming in
practical advice. Yet making sense of the
emotional and psychological impact of
dementia was less straightforward. I tried
asking Mum how she felt, but the condition
had already robbed her of the vocabulary
needed to fully express herself.
It was only after reading Wendy Mitchell’s
book, Somebody I Used to Know, and her
follow up, What I Wish People Knew About
Dementia, that I began to emotionally embrace
our new relationship. Mitchell was diagnosed
with early onset dementia, so this was a
unique glimpse of the condition through her
eyes. I highlighted so much of her second
book that every page is bright pink.
It explained why Mum had suddenly
become hyper-sensitive to noise, jumping
every time the microwave pinged (it’s called
hyperacusis). I learnt that being asked, “Don’t
you remember? You must remember...” is
like a twist of a knife. I taught myself to stop
correcting Mum when she got a word wrong,
or answer on her behalf, for which she would
berate me with the words, “I’m not ga-ga yet!”
I’ve become more patient, and I try not to rush
her when she spends ages putting on her coat
or asking on a loop where the teabags are kept.
I can pinpoint the day that I said goodbye
to my old mum. Late last year, while going
through an extremely tough time with work
and my health, I just needed her to envelop
me with a comfort blanket of soothing words,I
In the kitchen Mum
turned to my husband
and whispered, ‘I’ve
forgotten how to cook’
MAKE-UP AND HAIR: JULIA WREN AT CAROL HAYES MANAGEMENT USING CHANTECAILLE AND T3 HAIR TOOLS. COURTESY OF MARIANNE JONESMaria and Marianne Jones in the Eighties