Elisa’s dad Dan gave up his career to become her full-time carer after she was born with cerebral palsy. Here he talks about the impact this has had on his life…
When dad Dan realised his daughter Elisa, who has cerebral palsy and complex health needs, would need to wear nappies for her entire life he began to comprehend the lifelong impact of her condition and nearly had a breakdown. Shortly afterwards, he quit his job and started caring full time for Elisa. It was, he says, the only way he could provide the care Elisa needed and keep his family together.
Caring for a seriously ill child who needs your attention 24/7 means it can be impossible to get the physical, emotional and mental rest and recharge that you need. This is why families like Dan’s rely on short respite breaks – like the ones his family receive from Julia’s House Children’s Hospice – when trained nursing and care professionals take on the care of the child, so the parents get a chance to breathe out.
Knowing someone is there for you, your child, all of you, just makes the most unbelievable difference to the mental and physical wellbeing of the whole family.Elisa's dad, Dan
Dan explains what life was like after Elisa’s diagnosis:
“When you have a disabled child an awful lot of doors close – society judges you. You constantly have to explain what’s wrong with your child and people usually just give you a wide berth.
“And that’s if you even manage to get out in the first place. There are so many logistics involved in leaving the house with Elisa: will there be changing facilities? Can we park close enough? What is the going like – sand, gravel? It is like planning a military operation. It is all too easy to just give up and not go anywhere because the thought of trying to organise everything becomes overwhelming – it’s a big part of that feeling of isolation.
“I suppose I became trapped in a cycle of exhaustion and anxiety. Sleep is virtually impossible. You try not to think about it but you go to bed every night not knowing if your child will wake up in the morning.
“I would go to work worrying about Elisa, having only managed two or three hours sleep and got to the point where I just could not carry on. It became impossible to balance work with my relationship, Elisa’s care and my mental wellbeing.”
For Dan’s family, the respite they receive from Julia’s House Children’s Hospice is a real lifeline:
“When you give up work to care for your child you lose your status, the support and friendship of colleagues and your income. You become so isolated it’s like falling out of society – and once you are out it is really difficult to find your way back in. Julia’s House is the entrance into a new world full of friendship.
“Even though there’s no peace of mind, no break from the sickening worry of having a seriously ill child. With Julia’s House we always have that respite to look forward to, the hope of a bit of time to recover.
When Elisa’s nurse and carers come to our home it is our only chance to have a meal together as family, really simple everyday stuff like that – but it’s these little things that make the difference.Dan
“Knowing someone is there for you, your child, all of you, just makes the most unbelievable difference to the mental and physical wellbeing of the whole family.”
Dan and Elisa’s story has been shared to mark the launch of Give Me a Break, a new report from Together for Short Lives and Julia’s House Children’s Hospice detailing the positive impact of short breaks on parents’ physical and mental health, their demand for NHS care and family relationships.