Stephen McNeice
Stephen McNeice

10.19 30 May 2020


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A mother caring full-time for her son says they've 'no clear roadmap' yet for when their care and support services will be able to resume.

Sinead Tighe is a full-time carer for her son Daniel who has a rare genetic condition called Soto Syndrome and is non-verbal.

She spoke to Newstalk Breakfast with Susan Keogh about the impact of the COVID-19 restrictions on their day-to-day activities - saying she feels the Government hasn't looked after carers during the crisis.

    

She said: "It has had an absolutely huge impact on us in our daily life.

"The worry and stress, daily for us, is huge."

Sinead explained that the closure of schools "took a huge chunk" out of Daniel's day, while they also suspended other external care service as Daniel was unable to go outside.

She observed: "With the likes of all his hospital appointments and respite, they were all then in turn cancelled.

"Any support we would have got is all gone, so it's just us on our own now doing everything."

She said the first two weeks of summer holidays are always "like hell" with Daniel, and that was also the case when the pandemic began.

She told Susan: "We were to cocoon. Daniel had caught a virus in that time as well, and thankfully it wasn't COVID, but we were told to [stay] in.

"For Daniel, who is an outdoor person, it was just a nightmare. His challenging behaviour - his headbutts, his slapping... he just didn't understand, and there was no way I could make him understand."

Sinead has now put in place a structure, and being able to get outside has been a small relief.

However, she said: "The whole day is relentless - it is all about Daniel. It always was about Daniel, but I did get a little break.

"It's [now] ensuring that he can cope with the day.

"I'm so concerned his development is going to regress in this time, not having that one-to-one support he needs.

"I'm sure in his own little head, he has his own anxieties that we don't know and we have no way of explaining to him."

She also said that the lack of visitors has made her feel very "lonely and isolated" - noting that the whole experience has been "so, so hard".

Sinead said carers like herself feel the Government hasn't looked after them during the crisis.

She observed: "They haven't looked at us as a group... I think we've kind of slightly been forgotten about through this pandemic.

"We as family carers really stepped up to this challenge, and tried to do our best... but no, we've no clear roadmap going ahead of when our services will be reinstated.

"We were already worried about our services before this.

"With what everyone has to do to get back to a new normal, what will it be for us because it was so hard for us anyway?"

She said carers get promises all the time, but they now need to be recognised as a priority group.

Main image: Sinead Tighe and her son Daniel. Photo via Family Carers Ireland

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