I reversed Mum’s dementia ... just by moving her in with me
She was in a care home but being showered with love at home has transformed her
THIS morning, I took my mum out in her wheelchair for our daily walk, and we got chatting with a passing dog walker. ‘What a beautiful dog; what kind is it?’ Mum asked, before telling this chap about the many pets she’d owned over the years.
Five minutes later, we went our separate ways, that friendly dog walker no doubt oblivious to the fact he’d just been chatting to someone with dementia.
Indeed, were anyone to visit my home, I doubt they’d realise the old lady helping me fold the laundry, chatting about whatever story she’d just read in the newspaper or dictating where in the garden I place the plants she’d picked out at the garden centre, had been diagnosed with this horrible disease at all.
How different Mum, who’s 94, is today compared to four years ago, when she was in a care home and declining rapidly. Back then, she’d lost the ability to read and write, had been put in nappies, and wouldn’t have known what to do with the tea towels she now carefully folds into neat squares.
In the home, she was spoken to kindly, but as though she was a baby, rather than the intelligent woman she really is. certainly, no one had time to discuss the day’s news reports with her — although, back then, she wasn’t interested in them herself.
I couldn’t bear to think that was how the end of Mum’s life was going to play out, and so, after just a couple of weeks, I started making arrangements for her to live with me.
From the day she moved in to my Surrey home, my approach was simple — I would focus and build on what she could do and, above all, maintain her dignity. That meant chatting to her constantly about what I was doing when I got her dressed or prepared a meal; insisting she let me help her onto the toilet rather than rely on nappies; and putting her daily newspaper in her hands whether she felt like looking at it or not.
To say that, over time, Mum has improved is an understatement — she can read and write again, chats to her old friends on the phone and rules over what we watch on the TV. and to the great confusion of her doctors, Mum is much better now than she was in 2015 when she was diagnosed with dementia.
BACK then, she had a score of 16 on the Mini-Mental State Examination (MMSE), which is used by the NHS to assess a patient for cognitive impairment. That indicated moderate to severe dementia, and would be expected only to go down as the disease ran its course.
and yet, last year, when she was tested again, she had a score of 20, which is a huge improvement. People don’t tend to increase their score in this test, which is why her GP is so stunned by it.
Of course, Mum hasn’t been cured, and never will be, but she has her dignity back, which I’m determined she’ll never lose.
But I do have to accept that dementia is a degenerative disease. Recently, I’ve noticed she’s sleeping much more in the day, and she repeats herself more often. She makes things up — stories that feel very real to her, and so I go along with them, too.
For example, she seems to think that this is her house and that
I’m the one who needed to come and live with her. I don’t know what she thinks put me in that situation, but I make sure I thank her regularly for having me.
Meanwhile, if she suddenly tells me that today’s her birthday, I congratulate her and make us a celebratory cup of tea. It doesn’t matter if she mistakenly thought the same thing just a week ago — I still jump up and give her a birthday kiss.
If she says, in all seriousness, that she personally knows the newsreader we’re watching on the TV, I ask her: ‘Tell me, then, what’s he really like?’ For the next few minutes she’ll bring him to life for me.
It doesn’t matter that she’s never even met the man; the way her face lights up as she talks is a joy to see.
Harder, of course, is when she used to call me ‘mother’, but still I didn’t set the record straight — even though it was incredibly difficult to deal with, knowing she had temporarily forgotten that I’m actually her daughter. I just nodded and smiled at her, then left the room so I could compose myself. Thankfully, that difficult scenario hasn’t played out for many months now — another example of how much she has improved. I’m less shocked by this turnaround than her GP, but that’s because I’ve witnessed her become chattier and more engaged with life instead of things going the other way. Mum stayed at home with me and my younger sister, Sarah, who’s 56, until we went to school, then she worked part-time as a doctor’s secretary. My dad, Peter, was managing director of a large manufacturing company, and died of cancer in 2005. I treat my mum like the quickwitted, intelligent woman she has been. That’s why I never correct her when she gets things wrong — I think that would only knock her confidence and set her back.
I let her choose what she eats and what she wears, helping her if she struggles. She also decides what we watch on the TV.
That said, I only ever give her a couple of options, just as you would a child who’d become overwhelmed with anything more. But the point is that I make sure she always feels that she’s in control. I’m certain that has all helped her to improve, too.
I won’t pretend living like this, at the beck and call of someone who can’t take care of herself, having had a busy career and fulfilling social life, hasn’t come at a cost. I’ve had to reject residential care and put my own needs aside so I can look after her myself.
Through choice, I never had children, so I can devote my time to her. But this has meant selling my successful company — I was the founder of a business networking organisation — so I can be with her all day, every day.
We manage on mine and Mum’s savings, but eventually we may need to look to the State for help. as well as losing my career, caring for Mum has also impacted on my relationships, both romantic and with friends, because my time is devoted almost entirely to her. My sister lives abroad, which adds to my feelings of loneliness at times. But I wouldn’t have it any other way.
In the months leading up to Mum’s diagnosis, she’d become a bit forgetful, sometimes repeating herself. But nothing you wouldn’t expect in a 89-year-old.
But, then, she had a nasty fall, requiring surgery to have her broken hip pinned. By the time she left hospital two weeks later, she had full-blown dementia.
The doctors explained that this rapid onset version of the disease generally happens after a shock or accident like Mum had.
Up until then, Mum had always seemed to me a force of nature.
She continued working as a doctor’s secretary until she was 80 and, even in her incredibly late retirement, still volunteered a couple of days a week in a charity shop. When she wasn’t working, she ran errands for her similarly aged friends who weren’t so active. She was still driving up
until that fall, and i always found her great company.
But, suddenly, she was a frail old lady. Back home, even with NHS carers coming in, it was clear Mum couldn’t cope.
at first, a good care home seemed the most sensible solution. But i quickly realised that, even in the most pleasant surroundings, Mum would have to fit in with how they did things. i didn’t want her to have to relinquish so much control over her own life, however nice the furniture or interesting the menu.
When she first moved in with me, she seemed horribly confused. She’d get dreadfully upset if i left her alone, even for a few minutes. and i struggled emotionally with the intimate care she needed help with.
Showering my own mother made me feel physically unwell and emotionally fraught. it felt like a horrible breach of the mother/daughter relationship. Over time, i’ve found a fantastic team of private carers who Mum likes and who i can trust to do the bulk of that side of her care, so i can concentrate on keeping her engaged with life.
Mostly, that involves us chatting together and getting out for short walks. it’s simple, but it’s working.
People say: ‘aren’t you marvellous’, when they hear how i’ve devoted myself to my mother — and the success we’ve had. But the truth is, she was an incredible mum to me, so really, it’s a privilege to have the chance to pay that back.
COPING STRATEGIES THAT WORKED FOR ME AND MUM
RESPECT THEIR RITUALS NIGHT-TIME routine can help someone with dementia go to bed feeling secure. Mum likes her bedroom curtains open a little, and has a cup of tea, milk and a banana next to the bed. She often doesn’t touch them, but knowing they’re there reassures her that if she gets hungry or thirsty in the night she has everything she needs and so she doesn’t start wandering, which can be a problem with dementia sufferers.
ALWAYS OFFER A CHOICE THEY might like to eat the same thing all the time, but i’ve seen how giving options helps Mum feel as though she has control over her own life.
ROUTINE IS EVERYTHING THE time on the clock can lose meaning to someone with dementia, which is why routine is so important. Doing the same things at the same time each day — from meal times to going to bed — gives a sense of time and place.
CREATE A SENSE OF PURPOSE THERE is nothing worse than feeling useless, so Mum and i write a shopping list together. in the supermarket we take our time in the aisles — seeing familiar packaging seems to trigger memories. Folding laundry, asking for the best spot for a plant in the garden — simple tasks create self-worth.
KEEP THEM INTERACTING I STRUGGLE to get Mum to interact with people her age, but she happily engages with the five-year-old twins over the road. Her eyes light up when they visit and they love the attention.
JANE Hardy’S book, Pink Slippers: Mum, dementia and Me — a Story Of Hope is published by Practical Inspiration Publishing, £9.99.