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‘I became too much of a carer and not enough of a daughter’

Unlike many people who were forced to stay away from elderly relatives during the first lockdown, I spent it with my mother and two children. My father had been Mum’s carer for more than 15 years, so when he succumbed to lung disease just after Christmas last year, I unwittingly became head of the household and in charge of my mother’s wellbeing.

Dad was a gentle soul whose cheery demeanour shielded me and my brother from the true extent of my mother’s pain, caused by the pernicious effects of trigeminal neuralgia, a disorder often referred to as ‘suicide disease’ and linked to her debilitating multiple sclerosis.

My father and I were especially close, but my relationship with my mother, though loving, has never been as naturally open – something that has troubled me since I became a mother myself 12 years ago. Mum was diagnosed with MS in her late forties. As her mobility gradually deteriorated, I became more and more frightened by this cruel illness and felt particularly helpless when, in her late sixties, the trigeminal neuralgia really took hold of her nervous system. It is a condition that causes such excruciating pain, she is often completely silenced by it; often even the slightest vibration or movement sends burning hot shockwaves down her face, neck and arms. It’s a given that an illness that strips you of your voice is truly isolating, even if you are surrounded by loved ones.

Over the years, then, my mother’s disability has created a divide between us. I have never known what to say or do. I have avoided sharing my problems with her, and she has not wanted to be a burden to me, plus my father’s caring and cheerful presence created an aura of calm around the house – which, in retrospect, helped us all to cope in our own way. But then my father died – and, shortly after, the pandemic hit. In lockdown together without a professional carer, and with my brother living abroad, my mother and I found ourselves in a tense situation, both of us grieving, with me having to ‘parent’ her, and her wanting to claw back some independence.

For the first couple of weeks, I went into autopilot mode and busied myself with a list of practical tasks. I familiarised myself with her pills – nine a day including methadone, amitriptyline and lacosamide – ordered her a new wheelchair, updated my parents’ joint policies, looked into reducing our bills and applied for a new car through the Motability scheme. In the evenings, once the children were in bed, we watched television together. But we hardly spoke.

On week three, she had a fall in the bathroom. I didn’t find her until 10 minutes after the event, which really shook me up. Apart from a small bump to the head and her “bruised dignity”, as she put it, my mother had a lucky escape. I, on the other hand, became ultra-paranoid about her having another tumble, and especially tetchy when I found her doing things that she really ought not to be, such as opening her wardrobe to get her clothes.

This may sound overbearing of me, but given that she is unstable on her feet, prone to sudden tremors, dosed up on painkillers and reliant on a Zimmer frame to walk, witnessing my mother trying to perform this simple task was akin to catching someone with two left feet attempting to cross a high-wire without a safety net. I let it slide the first couple of times but by the third, I lost my cool, and I lectured her on the grim possibilities: a fall, broken limbs, head injury, a spell in a hospital riddled with Covid – I didn’t hold back and I certainly wasn’t sensitive.

It was the wrong approach. My mother is a very proud woman and remarkably alert. She was visibly upset and berated me for behaving like a bossy school teacher. I apologised for being insensitive, but really nothing was solved. I still felt on edge.

As a parent, patience is something that gradually develops in you as a quality. In that first year of your child’s life especially, you learn to be patient with the crying, the crawling, the walking, the teething and so on. Each stage requires a slightly different approach, and each builds on the last. Caring for my mother during those two months was a condensed version of this: the need for patience was urgent, inexorable and challenging. By no means am I comparing my mother to a child – I do still think she knows best (most of the time) – but as a carer, you have to battle against your instincts, and mine are primed for organisation and efficiency.

I learnt quickly to accept that I was unable to follow a schedule. There were just good days and bad days; days when I could help Mum get dressed and downstairs before 1pm, others when it was closer to teatime. But we didn’t chat or interact much; I felt driven by the need to be somehow professional – a misguided way, I now see, of trying to make my mother not feel like our roles had been reversed. In effect, I became too much of a carer and too little of a daughter.

But, by the third week, something strange happened to change all that: an explosive row that shifted the dynamic of our relationship. She told me she didn’t like my skirt. It sounds like a ridiculous thing to be bothered about, but lockdown was an unusual time of frayed nerves, and I was exhausted. I had what can only be described as a meltdown – a sort of eruptive return to my teenage angst – which is quite a big thing to admit when you’re a 44-year-old woman and something I’m not especially proud of.

I snapped at her, saying that she hadn’t supported me through motherhood and had never once shown an interest in my career; that she hadn’t earned the right to comment on my fashion choices. I cried, I raised my voice. I even slammed a door. It was a full-on temper tantrum. Then things took a turn for the worse. My mother screamed. Her voice was loud, powerful and enraged. “I hate the body I’m in. I hate it!” she exclaimed again and again. Part keening, part battle cry, this was a visceral sound that been suppressed by years of silent suffering.

I wish I could say that I hugged her there and then, but I left the house shell-shocked. I’ll always regret that because, when I did come back, my mother apologised to me, and I should have been the one saying sorry. Home had become a pressure cooker environment, and it’s no wonder, really, with a global pandemic thrown into the domestic mix.

There was nothing left to do but laugh – and, strangely, we did. That night, we watched a film together (The Favourite, with Olivia Colman). I winced like a teenager during the risqué bits; my mother, whom I’ve always thought of as being rather proper, giggled. Later, we spoke about my father – his eccentricities and wicked sense of humour. Maybe his love of dark comedy helped him through some of the heartache.

That evening, my mother and I connected for the first time in years. I’m no expert in psychology, but I’d hazard a guess that our row pushed us back into place: I may have become her carer but first and foremost, she is my mother and mothers are supposed to have a voice; they are allowed to be opinionated, obstinate and, yes, even annoying when it comes to their children. I know I am. Sometimes it feels like a turf war but ultimately it’s a bond that I’m grateful for, especially in a world in strife.

And I will remember that on Christmas Day as we spend it together, alongside my two children, and see where our emotions take us. It may never be perfect but that’s OK. My father taught me that humour should always win the day. So I’ll concede that she was right about that bloody skirt..

Read more:  Our second NHS: Britain’s invisible army of unpaid carers needs your help

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