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

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 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-oflife 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.

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.

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*

ARTHUR AND AGNES IN 2018