Monday 27 January 2020

'I've told social workers I would be better off if I just dropped dead' - mum of two adults with disabilities

Labour of love: Noeleen Cullen is a victim of budget cuts to support services as she looks after her two children, Mandy and Aaron, at their home in Jobstown
Labour of love: Noeleen Cullen is a victim of budget cuts to support services as she looks after her two children, Mandy and Aaron, at their home in Jobstown

Alan O'Keeffe

Noeleen Cullen, a mother of two adult children with disabilities, says: "I don't think I can go on like this."

For decades, she has been changing the nappies of her incontinent children, Mandy (36) and son Aaron (29), several times a day.

The 57-year-old gets up early and walks on tiptoes to avoid waking Aaron. She acts quickly to get Mandy up and washed and dressed and into her wheelchair.

Aaron has severe autism and is "full-on" all the time. When he wakes, he demands his mother's full attention constantly, so she must act fast to get Mandy her breakfast before Aaron wakes.

"The stress can get very bad. I've told social workers I sometimes feel I would be better off if I just dropped dead," she says.

Respite breaks for carers like Noeleen were dramatically cut in recent years due to "budgetary" reasons.

She has now resorted to making a public plea for an increase in her breaks that involve placing Mandy and Aaron in supervised residential care for brief periods to enable Noeleen to get a rest.

"I badly need more respite services for the sake of my mental health and to get my energy back," she says.

Mandy has Down syndrome, spina bifida and an irritable bowel. Aaron has severe autism, epilepsy, and Attention Deficit Hyperactive Disorder (ADHD). Both are double-incontinent.

When the Sunday Independent arrived at Noeleen's home at 9am on Thursday, Noeleen had already changed both of them twice that morning. She fought back tears as she spoke of her stress.

"I'm a positive person, but there are times when I feel there's no light at the end of the tunnel," she says.

Each weekday morning, she gets Mandy and Aaron ready before they are brought to daycare at Cheeverstown House which provides services for children and adults with intellectual disability.

Noeleen then leaves her house in Jobstown, south Dublin, to work as a part-time cleaner to help pay the household bills and is back home for the return of Mandy and Aaron in the afternoon.

The HSE funds three hours a week of evening care for Mandy and six hours a week of evening care for Aaron.

Until the crash of 2008, Noeleen got one-week respite breaks four times a year and up to five weekends a year.

Week-long breaks are no longer available. Many of the respite breaks now consist of a couple of days midweek. Last year, Mandy received 22 nights respite care spread over 365 days and Aaron had 18.

The lowest point for Noeleen was in 2015 when respite houses on the Cheeverstown campus were closed for renovation, and Aaron was undergoing chemotherapy for testicular cancer. "It tipped me into a deep depression and gave me suicidal thoughts," she says.

In a letter to Noeleen's local TD, Children's Minister Katherine Zappone, Deirdre Murphy, general manager of community healthcare disability services in South Dublin, Kildare, and West Wicklow, said: "Cheeverstown respite services are running on reduced capacity due to budgetary restrictions.

"Currently, families receive respite mid-week and not weekends. The respite is usually of between two to four nights as the budget cannot meet full demand.

"The HSE and Cheeverstown are currently exploring options regarding restoring full capacity. The family's needs will be reassessed accordingly."

A HSE spokeswoman said: "The HSE will make direct contact with this family to discuss matters raised.

"The HSE is working with Cheeverstown to develop a strategy that will accommodate increased respite placements by the end of 2018."

Meanwhile, Noeleen has to cope with the stress. Respite can't come soon enough.

Sunday Independent

Editor's Choice

Also in Irish News