‘Being a carer is terrible and wonderful’. Penny Wincer’s life has been defined by caring for others

Penny Wincer’s whole life has been defined by caring for others. Here she shares the joyous highs and heartbreaking lows of taking on a role she never asked for 

My mother was a brilliant and adored woman who had put us first throughout our lives. She spent huge chunks of time solo parenting while my father travelled for work, then looked after us full time after their divorce. She made the kind of home that was always welcoming and open to all our friends. She was beautiful, sociable and kind.

She had her first panic attack when I was 11, and when I was 13 things started to spiral downwards very quickly. Mum would start to cook a meal then fall asleep before she had finished, so I would rescue it from burning. Other days she wouldn’t cook at all and I realised the only washing being done was once a week when the cleaner came. I started doing more of it so I had a clean uniform to wear.

Periodically, Mum would become so low that she would go as an inpatient to a private psychiatric clinic. As my dad was now living in the US, my two brothers and I would either stay with friends, or a babysitter would come to look after us. When Mum was at home, I would sit by her bed each evening, holding her hand while she cried and told me she wanted to die. Some days she would scream in a drunken rage at me for not being supportive enough. Other times she would beg my forgiveness for not being the mother she had been before. Each day, I would catch the train to school and carry on as if our life was the same as it had always been.

She remained in this cycle of deep depression, drinking, crisis, hospitalisation, improvement and back again for many years. She had good times, but somehow they would make the bad times even harder. As time went by, I became accustomed to the way our relationship had settled into something else: mother and daughter who loved each other very much but for whom the balance was always going to be flipped.

Eleven years – almost to the day – after she had that first panic attack, my mother hanged herself. I was 22. I heard the news late at night in London, where I had moved only a few weeks before, having just finished university. I was 14 when she made her first suicide attempt; I had been waiting for this call for years. Waiting for it and dreading it – and now the waiting was over. Amid the shock and the acute pain I felt at the permanence of it, a part of me deep inside released a breath I’d been holding for years. It was no longer my job to look after her.

Thirteen years later, I recognised the panic I felt as it became clear that my son Arthur was going to be very dependent on me. This time I was no longer the child who needed to care for her mother, but a mother who felt like a child as so little did I know about how to support my autistic son.

It had been a creeping realisation. Small things slowly pieced together. When he was around 18 months old, I was speaking on the phone to a girlfriend in Australia and she excitedly asked what he was interested in these days. My mind went blank. Then I thought, ‘That’s not right, is it?’, that I had no answer to her question. And there was a time I now look back on as the first obvious full-sensory meltdown – it had us both sobbing and clambering to find our buggy in an overcrowded, stiflingly hot playgroup.

By the time an official diagnosis of autism was given, when Arthur was three, I had already become accustomed to the idea that we were going to have to do everything a bit differently. I hadn’t driven in the car with him for a year after his sister Agnes had been born, just after he turned two. I had yet to leave them alone in a room together, even for a moment. I couldn’t trust him around her; not until she was old enough to run away if she needed to.

Even though I was more than ready to accept the diagnosis when it came, desperate for any help possible, it still loomed large and overwhelming with an impossible number of question marks attached to it. In some ways Arthur seemed joyful, delighted with the sensory world, and was the sweetest, most affectionate boy I could imagine (yes, autistic people can be very affectionate). But he was also incredibly distressed a lot of the time, easily overwhelmed, barely able to communicate – even nonverbally – and found it impossible to engage in anything other than very high-energy play. I joked that with Arthur it was like living in an opera, all high drama and extreme emotions with nothing temperate or in-between. No calm engagement or quiet play. It was squeals of delight or wails of agony.

Like any parent with very young children I would be flat-out from start to finish, and only when I collapsed in bed at night would the thoughts all finally descend on me. A disabled child. A nonspeaking child so dependent on me, who had no guidance from anyone and had never been a parent before. I was expected to know what to do and how to deal with it. I had absolutely no idea what I was doing… and yet I had been here before.

The feeling of claustrophobia that hit me at night – that I so desperately wanted to escape – was not just because I had no idea what I was doing as a parent, but because I knew what it was like to be a carer. I had already done this and I couldn’t do it again, I thought to myself. But I am doing it again. This time it was my precious little boy.

And it was all my responsibility. It was becoming clear to me that my marriage was going to end and that I had no mother to call for back up, no extended family who weren’t thousands of miles away. As Arthur’s father and I settled into a new routine with me as the children’s main carer, taking a break every other weekend while he spent time with them, I knew I was going to have to figure out a lot of this on my own. In my area, the NHS offered almost nothing in terms of advice and support for a developmental disability. Arthur was given four speech therapy sessions, then another four the following year. I was told there was no funding for occupational therapy for autistic children.

I was expected to support him myself until he was school age, despite everything I read saying that early support was vital to an autistic child’s development. I felt I might implode under the pressure. It felt insurmountable. I had done this before and it was so hard. The situation now was very different, and yet I felt a similar sense of being out of my depth in holding someone else’s wellbeing in my hands. I had and still have so many fears. How would I look after myself while looking after my son’s high needs? What if the pressure became too much?

I had seen what can happen to a person when they struggle with anxiety, depression and addiction. We might be better at talking about mental health than we were 20 years ago when my mother felt like a pariah, but I had seen the ugly, painful mess close up. My mother had lost everything. And I had lost her bit by bit from that first panic attack to the day she died. Her illness had dominated half of my life with her. At times it had made her completely incapable of being there for us. Looking at my children in those early days after Arthur’s diagnosis, I worried about how little support I had. How was I going to cope? What if I ended up like my mother?

Through my experiences I have had my eyes opened to the most beautiful and ugliest of human emotions. I have been racked with fear and guilt, resentful of what has been asked of me, seen the most incredible joy, loved harder than I could have imagined and picked myself up sobbing from the floor more times than I can count. The reality is that for most, caring is exactly like the rest of life: sometimes wonderful, sometimes terrible and, often, very ordinary.

The carer’s emotional toolkit

Golden rules that Penny lives by… every day 

 ★Speak up. To share the conflicting feelings around caring is to peel away some of those shadows and form connections with others. Carers are seven times more likely than the general population to report feeling lonely; they are also twice as anxious. Apart from being able to take regular breaks from caring, the next most important thing that carers report needing to help combat loneliness is more understanding from society. We will never have more understanding if we remain silent and hidden from the world.

★Take breaks. I love being a mother to my son and I can’t be his carer all the time without support and breaks. It feels hard and wrong that these two things are true, but they are. I want a few sleepless nights not to affect me. I want to always remain calm during a stormy, sudden meltdown. I wish I was never fazed by the constant mess created by Arthur’s sensory-seeking behaviour. I wish I didn’t need breaks from the planning, the anxiety prevention, the hyper-vigilance to keep him physically safe. But I do.

★Let go of control and perfectionism. I still wish for the impossible: to be a perfect parent. For a long time I didn’t think I had particularly high expectations of myself as a parent to a disabled child. I was just doing what I thought was needed but it was never enough. It never even felt close to being enough. However, letting go of control and outcomes help us live more fulfilled lives as carers.

★Challenge negative perceptions of disability. It is not about denying the difficulties of living with an impairment or chronic illness. It’s about recognising that the lives of disabled people are just as valid, just as varied and just as full as those of non-disabled people.

★Caregiver burnout is a thing. It is now widely recognised by medical professionals. We cannot function in long-term caring situations if we do not rest and take care of ourselves. We are worthy of a little time and priority spent on ourselves and our own health. If you cannot give yourself permission to rest, then you must do it for the sake of the person you care for.

★‘What is the kindest thing I can do for myself right now?’ Get into the habit of asking yourself this question during difficult times. Sometimes the answer is a very early night, reaching out to a friend, going for a run – or skipping a run and going back to bed. It’s not always what is easiest or what I want, but what is kindest. When I treat myself with kindness, I find the energy to advocate better for Arthur – and I find more patience on the hard days, too.

★It is our collective responsibility to care for carers. It should not be up to them to move heaven and earth for their loved one, only to receive nothing themselves – becoming depleted and feeling used up by a culture that would rather not see or hear the difficulties that caring can bring. As end-of-life doula Anna Lyons says, there needs to be a pyramid with the cared-for at the top, the carers underneath them and a layer of support under the carers.

★It is possible to be both full of hope for the future and not fixated on certain outcomes. Arthur’s future will be different to how I imagined it when he was a chubby six-month-old baby meeting all his milestones. Accepting difference does not mean giving up hope. Accepting that I will never be a perfect parent or carer does not mean giving up on being a good parent. It means accepting my limitations with kindness – the sort of kindness I hope my son gives himself when he struggles to achieve something his peers find relatively simple. Just as Arthur will be OK, we will all be OK if we can look at ourselves and remember that we are enough, just as we are.

National Carers Week is 8-14 June. This is an edited extract from Tender: The Imperfect Art of Caring by Penny Wincer, to be published by Coronet on 11 June, price £14.99. To order a copy for £7.49 until 14 June go to whsmith.co.uk and enter the code YOUCARING at the checkout. Book number: 9781529331219. For terms and conditions see www.whsmith.co.uk/terms