Sinead's Story – Care for Carers this Christmas
My name is Sinead Tighe and I’ve been caring for my son Daniel since his birth 18 years ago. Daniel was born with Sotos syndrome, a rare genetic disorder that affects every part of his life. He has severe intellectual disability, sensory processing disorder, epilepsy, feeding difficulties, low mobility, and is nonverbal. He also has behaviours that challenge, and he needs 24/7 care.
"A typical day for us can start at 3am."
Daniel wakes and we tend to his personal care. He might play with his favourite toys — even though he’s 18, he’s toddler-like in development. I feed him breakfast, give him medication and fluids through his PEG, and help him shower and dress — a process that can take up to two hours.
He attends day service from 9.30 to 3pm, and when he comes home, the care continues — more medication, feeding, and attention. Evenings can be especially tough with behaviour, and we take turns to sleep beside him every night due to his seizures. Our routine has to be consistent so Daniel feels safe — but it puts huge constraints on my daily life.
Daniel is roughly 6ft 3 and very strong. His behaviours — headbutting, pulling hair, banging his head — are not intentional, but they hurt and they’re deeply upsetting. I’ve had support from a behavioural therapist, and I fight every day for the services Daniel needs — physiotherapy, speech therapy, respite. I exercise when I can, but there are days I don’t even get time to eat. Daniel has now entered the adult services system, and the gaps in care are even wider. As carers, we care from the cradle to the grave.
"I first came into contact with Family Carers Ireland when Daniel was 10. I had only recognised myself to be a carer a few years previous to this."
Family Carers Ireland has been a lifeline.
They helped me access behavioural support when no one else could.
They supported my daughter when she was struggling, and they gave me the confidence to speak out and advocate for Daniel and for carers like me. When I hit burnout, they were there.
They helped me seek help and fight for more support.
Christmas is bittersweet.
For years I cried walking through toy aisles, knowing Daniel wouldn’t even know it was Christmas.
I’ve learned to think outside the box and make it special in our own way, but it’s still hard.
What would make it more joyful? More inclusive events. More awareness of the loneliness carers feel.
We still carry out all our caring duties, no matter what day it is. If communities like hotels, restaurants, shops, could help us create special moments, it would mean the world.
This Christmas, I’m asking you to support Family Carers Ireland’s Care for Carers this Christmas appeal.
Your donation can help carers like me and families like ours access the supports we need — including counselling and other intensive supports. No one should have to care alone this Christmas.
Caring for Daniel is hard, but I’m amazed by my strength. It’s lonely and isolating, but his smile and laugh brighten my day. I’m truly blessed to have him in my life.
Wishing you and your family a peaceful and joyful Christmas,
Sinead Tighe, Mam & Family Carer