‘Getting letter [about respite] sent me into a meltdown’ says Tallaght mother

By Mary Dennehy

Only getting 22 days respite in the past two years has forced one carer to speak out.

Noeleen Cullen is up every day at 6am to get her two adult children out of bed, washed, dressed, fed and provided with their medication before they head to day services and she starts her part-time cleaning job.

Noeleen and her husband Martin care for their children Mandy (34), who has Down syndrome and spina bifida, and Aaron (28), who, in recovery from cancer, has autism, epilepsy and ADHD, in their Jobstown home in Tallaght – with both Mandy and Aaron, who attend day services in Cheeverstown, doubly incontinent.

This week, Noeleen has spoken out about the efforts made by carers in the home and the need for respite, after changes were made to the respite hours provided by Cheeverstown – which currently provides respite to 139 adults and 48 children.

In July 2015, the two respite houses on the Cheeverstown campus were closed to accommodate renovations recommended by HIQA [Health Information and Quality Authority], which impacted on the respite offered to families – including Noeleen, who only got 22 days respite in the past two years.

Before the renovations, families were offered 25 days of respite per year, which saw carers like Noeleen receive three separate, full weeks of respite and one weekend.

Due to the renovations, respite was re-structured to two mid-week days per month, a system which, despite one respite house re-opening in May and the second due to open this January, is remaining in place.

Noeleen told The Echo: “All of the families were very patient during the renovations and understood that the work had to be done.

“We were under the impression that the respite would go back to normal once the second respite house re-opens in January, but we have received a letter saying that nothing will improve.

“I am a very positive person and I don’t complain and get on with things.

“However, getting that letter sent me into a meltdown.

“I was shaking reading it, I couldn’t breathe. I’ve told management that I cannot cope without proper respite, two days mid-week per month is no benefit to me.

“I need a week to get away from my environment and completely turn-off.

“Knowing that you’re getting a week away gives carers something to look forward to, it keeps them going.

“What have I got to look forward to now?”

Noeleen added: “I would do anything for my kids and will continue to do so, that will never change.

“However, management should have asked parents what works for us in terms of respite, asked us what would be the best way to allocate the budget if there is funding issues.”

A spokesman for Cheeverstown did not reply to The Echo’s questions about funding issues.

However, he did reply that: “Cheeverstown completely understands the importance of respite care for families and people who use respite services.

“In a perfect world we would provide residential respite services seven days a week. However, with current funding this is not possible and Cheeverstown have looked to put in place the best possible solution.”

He added: “Respite services are currently provided from Tuesday to Saturday, providing two-day breaks for people.

“We recognise that this may not be the ideal solution for all families but we will continue to work with and support families and people who use respite services in the best way we can but it has to be done within the budgets set down.”