How my mother’s cruel stroke changed ME . . . for the better
Becoming a carer is a shattering experience many daughters endure. But in this honest and uplifting account, MANDY APPLEYARD says it can enrich your life in surprising ways
FOR my first night of freedom in eight months, I was looking forward to a relaxed summer’s evening alone at home, playing Bruce Springsteen at a disgraceful volume, eating an Italian takeaway, then lying for far too long in a bubble bath, sipping white Rioja.
That was the plan. Since November last year, I have been working as my 83year-old mother’s day and nighttime carer, after she suffered a catastrophic stroke six months earlier. Now she had left.
I walked into my house, aware of the smell of my mother (rose talc, Prada Amber perfume) and of how empty the house looked now all her stuff — wheelchair, commode, turner, clothes, photographs, medication — was gone.
I put on music, poured myself a glass of wine, sat on the step in the evening sunshine and spent the next couple of hours in tears. Floods of sobbing tears — nothing subtle.
Why was I so bereft? It had been hard work: my mother can no longer walk or talk, so my days were spent cooking, cleaning, ferrying her around the house — from commode to wheelchair, to riser-recliner, to lavatory and back again — helping with her ablutions and therapies, ordering and administering medication, wrestling with GP practices and health trusts.
The biggest challenge was helping a fierce and wonderful matriarch who had always been so strong, fit and independent to accept a sudden and brutal new life in which everything has to be done for her.
A woman who was still cooking Sunday roasts, baking lemon drizzle cakes, going dancing on Wednesday afternoons and power-washing her own driveway became, in the brief moment it took a tiny clot to damage her brain, dependent on others for every aspect of her life.
BROUGHT to our knees by the rollercoaster of hospitals, care homes and domiciliary care agencies, I’d eventually invited Mum to come and live with me for as long as it took us to find some equilibrium and, more importantly, hope.
It made sense for me to become her main carer: my sister has a nine-to-five job and lives in a one-bedroom house, whereas I, as a freelance writer, can be flexible. And my fourbedroom bungalow was ideal for her needs.
I soon learned that the life of a carer can be lonely and bleak. Depression and anxiety now dog Mum’s life and therefore mine: a ringside seat at a loved one’s suicidal sadness is an awful place to be.
So when Mum took the brave decision to try living back in her own home (with significant input from carers, as well as from me and my sister), I expected my first night at home without her last Saturday to be a celebration of the by-now unfamiliar taste of freedom: a relief from the on-call responsibilities and worries of the past eight months.
Having dropped Mum back at her home and settled her in, I drove back to mine across the countryside, sunshine blazing on fields of ripe corn and barley.
I knew I hadn’t had time to grieve fully for what had happened to Mum on one otherwise ordinary Wednesday morning at her local bus stop.
So focused had I been on the practicalities of her life and helping her move from hospital, to rehab, to home, to care home, to my place, that my emotions were routinely sacrificed on the altar of today’s to-do list.
But here I was: exhausted, wan, sad and empty, sobbing on my step for all that has been lost.
A life in which my mother, always a big presence, cooked, consoled, laughed like a drain, nurtured her garden, came with me and my dog for a Sunday afternoon stroll on the beach, or
I lost my temper (not something I’m proud of) on occasions... carer strain is an ugly beast
popped to the beach on the bus for an ice-cream cornet on the seafront, then phoned to tell me what a lovely afternoon she’d had. All of that lost.
And for me? A much-relished career (as a journalist) on hold, meeting friends and going out things of the past, a once-in-alifetime railway trip across Siberia cancelled, never a moment to myself — not even to brush my teeth or comb my hair, some days.
My life became an anxious parade of what-ifs every sleepless night, the days a blur of lifting and carrying, comforting and reassuring, trying to offer hope when I had none myself.
And, yet, something else had clarified inside me — something profound and unexpected.
Worn down as I was, I had found a new purpose and fulfilment. And I suspect there are many others who feel like me. There is a silent army of unpaid carers out there, most of whom are middleaged women.
It’s just what people do for those they love (and perhaps just as often for those they don’t).
By no means do I claim to be a heroine but, when tested to the limit, I did find reserves of kindness and perseverance that I didn’t know I had.
My life has never been a selfish one but it has been joyously free. I have never married — my choice, I never wanted it — and I have no children (a thwarted story of miscarriage and illness because I really did want them).
Consequently, I had never lived a life in which someone else’s needs took precedence over mine.
I don’t think that makes me a selfish person but I have been in the unusual position of being able to please myself for the past 60 years. A busy job on a Hong Kong newspaper? Yes please. A long sabbatical living on a sailboat in San Diego? Definitely. A magazine editorship in London, requiring a 300km move? Count me in.
That said, I have always been a loving and dutiful daughter. So when my mum’s hour of need arrived in all its grisly misery, there was no question that I would be at her side.
And so it was that she came to stay with me, neither of us knowing how long for, both believing it was the only possible next step to try to help her find some stability in her life.
She was traumatised when she arrived with me and I tried to think of all the possible ways in which I might create moments of peaceful contentment, if not of joy, in this limited new life of hers.
I served her favourite foods: sticky toffee pudding with luxury custard; Thai green chicken curry with coconut rice; slices of buttered toast and hot chocolate in bed at 9pm to close her day.
We had a movie matinee most afternoons, watching cinema classics from Sunset Boulevard to One Flew Over The Cuckoo’s Nest; from Sophie’s Choice to Seven Brides For Seven Brothers.
As time passed and Mum’s speech improved, I was able to understand much more of what she was saying.
I encouraged her to reminisce about her childhood; about her happy years as a young war evacuee; her feeling of abandonment when her father walked out on the family; her sense of achievement at forging a life of her own after my father’s death in 2014.
We have always been close but I hadn’t spent long periods of time with my mother since I left home to go to university at 18. Once we’ve flown the nest, most of us don’t look back, do we?
So I felt privileged to have time with her to chew the fat: to watch films on what felt like stolen afternoons, to help with her speech and language therapy, to read the newspaper to her, to be a hand in the darkness post-stroke.
Not that it was plain sailing. I often saw an unpleasant, exasperated side of myself when I was tired.
I lost my temper (not something I’m proud of) on many occasions, usually when Mum was anxious about small stuff or asking me the same question for the fifth time. Carer strain is an ugly beast: irritation becomes an easy bedfellow.
But I will give myself credit for finding stamina, resilience and good cheer even on the toughest days. Giving up my bed, my room, my space, seemed natural. Putting someone else’s needs before my own wasn’t a struggle: it just felt right.
Living an unfamiliar life — part-care worker, part-nurse, part-cleaner, part-babysitter — just felt like something I had to get on with.
Millions of people — children, teenagers and adults — do this bone-wearying work every day of their lives for no thanks or acknowledgement. It’s tough. Damn tough.
Mum would wake me several times in the middle of the night — too hot, too cold, hungry, heard a strange noise, had a bad dream. That was a terrible strain but, for a while, it was inevitable until, at some point, she found that stability we had hoped for and could make it through the night.
Someone asked me if I am a better person for what we have been through.
No, that would be too bold a claim, but I have seen the best and the worst of myself and been surprised by how deep I have been able to dig on my mum’s behalf.
Am I less selfish? Certainly less self-absorbed but, actually, I have come to see myself in a more positive light.
I had to make the shift from busy working woman to unpaid fulltime carer in the blink of an eye, and I did so more smoothly than I would ever have thought possible.
Mum is not a big giver of advice, nor is she a woman of bon mots: she has always led by quiet, stoical example.
BY HORRIBLE irony, having a stroke was always her worst nightmare. Her father had survived one but with such awful brain injuries that he spent the last years of his life slumped in a hammock in a care home, unable to speak or move.
So when Mum had a stroke, it was no surprise that she turned her face to the wall.
Unable to speak a word in a hospital bed, she constantly mimed shooting herself in the head — her way of telling us she wanted to die when she had no words.
When she did find the words, a few months down the line, she asked me to take her to Dignitas in Switzerland to die.
Today, thankfully, she seems to have found reasons to live. Back in her own home, looking at the garden that is her pride and joy, surrounded by the stuff accumulated over a lifetime, she will hopefully thrive.
My home is an emptier place in all senses and I wonder where I am now in my own life. Relieved of unrelenting 24-hour carer duty, I am free to do what I want again — but I don’t know what that is.
I am 60 years old, never more aware of my own mortality and feeling rather lost, if I am honest.
Travel has been my great joy, whether with friends or on working trips, three or four times a year, to explore unusual destinations for magazines and newspapers.
I don’t envisage travelling again any time soon: I can’t take the risk of being on the other side of the world when/if Mum suddenly needs me.
Life has become quieter, more home-centred, simpler: part of me is happy with that, part of me wonders if I have just forgotten how to enjoy myself.
As has happened so often in my life, I will follow my mother’s lead. She has had to learn how to live differently. And I will do the same.