By Rose Barrett
A mum who is full-time carer for her son has hit out at Budget 2021 which failed to make any real difference to the lives of thousands of families.
Sinead Tighe from Tallaght in Dublin provides round-the-clock care for her son Daniel, 13, who has a rare genetic condition called Soto’s Syndrome.
Along with her husband Keith and 15-year-old daughter Shauna they organise their days around Daniel, who has severe intellectual disability, epilepsy and a sensory processing disorder.
Daniel is non-verbal, incontinent and visually impaired with challenging behaviour and feeding difficulties, and he often lashes out.
Sinead told Dublin Gazette: “The respite grant was increased by €150. That can be used for us to have a break – but in the current situation during the pandemic restrictions, there is nowhere to get respite.
“And really, spread over the year, it’s a little more than 40c per day.
“There was also a small increase in the number of hours that a carer can work or study every week (outside the home) and still get Carer’s Benefit. Carer’s Allowance will increase from 15 hours to 18.5 hours.
“But you have to be careful around this too, because if you work the full 18.5 hours, it could push up your family earnings’ allowance if you are means tested.”
Sinead is one of thousands of carers who took part in a recent survey which shows that more than half are in debt and almost half are under constant stress.
Outlining her typical day she said: “I get up every night at 2am as Daniel is incontinent and needs changing, then he likes to play for a while.
“So I stay awake from 2am, I give him his medication, shower him, dress and prepare him for school.
“Shauna is doing her Leaving Certificate and Keith is working so they need their sleep. I’m functioning on three to four hours sleep a night.
“I probably should go back to bed during the day but I usually need to check emails/correspondence regarding Daniels’ appointment and care.”
Running is Sinead’s relaxation therapy and she tries to get out for a five to ten mile run each day to clear her head.
Daniel attends St Joseph’ School in Drumcondra, which closed on March 15 due to coronavirus, so he was at home for six months and only went back in September.
Sinead said: “Returning to school was wonderful for Daniel who was bereft when his daily routine was broken.
“Daniel was upset when there was no school, he was pulling and head-butting Shauna and I with his frustration.
“In the mornings, we made sure to go out for a walk, or I jogged with Daniel in a buggy, we went out three times a day, morning, afternoon and evening. When Keith came home, he’d take him out to give me a break.”
Mental health and well-being
She added: “I’ve lived this life for 13 years, so I’m used to it. It’s like groundhog day every day but I’ve adapted and with my running, I make sure to stay fit and healthy.
“If I got sick or were no longer here, how would Keith cope? He’d need a full-time carer, day and night for Daniel, and a housekeeper.
“Daniel has major challenging behaviour, and when he got sick during the summer, we had to call an ambulance.
“When Daniel arrived, hospital staff were only in masks, and then they put on the PPE gear.
“Daniel couldn’t feel their sensory touch, he knew there was medical intervention coming. He feared something invasive, he flailed and kicked – it took six of us to hold him down that day.
“I put my head in close to him, to reassure him and to block him from seeing what is happening.
“So if I weren’t here, all these things would be so traumatic for Daniel. We, the carers of Ireland, need respite supports, we need carer hours restored.
“I’ve been told that for the duration of Covid, we won’t be having those support hours reinstated. I had eight hours in August per week only when restrictions were lifted. But have had none since or prior to that.”
Sinead added: “There is no specific identity within the social services or allowances for carers – we’re not classed as care ‘workers’. Yet we are acting as nurses; we’re social workers, advocates, transport managers and organise the logistics.
“We’re everything to the person we care for.” For more information see https://www.familycarers.ie/publications/research-hub