Back in May, Jane Johnstone, who was taking part in David Brophy’s choir, featured in the TV programme, Unsung Heroes, spoke to Ray D’Arcy about her two sons Evan and Daniel, who both have special needs. Jane has been caring for her sons by herself since her husband, Rod, died six years ago. And Jane spoke to Ray again today. Like most of the country, Jane sat down in front of the TV on Monday night to hear what the Taoiseach had to say about Covid restrictions. Like most of Ireland’s 360,000 carers, Jane wanted to see if carers and care services were even mentioned in Micheál Martin’s address to the nation.
“From my own point of view, as a family carer, and I know a lot of family carers will have felt similarly, in that, how will it directly impact, I suppose, on disability services, say, for my son Evan, who goes to a day service.”
Day servicers for people with disabilities never fully reopened after the initial lockdown, Jane told Ray, and are currently running to only 30-40% capacity. Transport is also similarly affected for a lot of families.
“We were already on our knees, being honest, Ray, so there was an awful lot of anxiety as to what restrictions were going to be announced and how those restrictions were going to further impact our loved ones.”
In the event, the Taoiseach didn’t mention carers or care services in his speech. Jane said that this caused further anxiety among the carers she’s in contact with, as they struggled to understand how the move to Level 5 restrictions affected them. When the child or the teen or the adult in your care goes to a day service – and one that’s already operating far below capacity – any threat to that day service potentially means the loss of precious care for your charge and equally precious respite for yourself. Fortunately, as the Minister for Health later clarified on Claire Byrne Live, day services will remain open, news which was quite the relief for Jane and her eldest son, Evan, who is clinically deemed as having complex disability:
“He has quite profound autism. He also has a profound intellectual disability, so he would have a developmental age of around 18 months.”
Evan, who is completely non-verbal, also has an eye disease, which has left him visually impaired, with less than 50% visual perception. He is, as Ray says, a big lad, as well, at about 6’4”, while his brother Daniel is also over 6 feet. So, Jane is caring for her sons – these two men – on her own. And Evan, she told Ray, doesn’t have the intellectual capacity to understand that there’s a virus, he only sees that his routine has changed to become much less predictable than it used to be.
“The way that Evan understands the world and negotiates the world is through consistency and through routine. So, the same things happening on the same days, allows him to follow that pattern and then gives him that sense of security. But I suppose, we really haven’t had that since the 15th of March.”
The service reduction has meant different things happening on different days and Evan’s routine is gone, which has led to Evan losing sleep. He gets overwhelmed, Jane said. “Are you afraid of him?” Ray asked her. Jane said that she does feel fear when Evan gets emotional, but the fear is less for herself and more for Evan and Daniel:
“It might sound strange, but sometimes when you’re a carer, you kind of lose the sense of yourself in the person you’re caring for, the people that you care for. But my first fear, if we’re in a situation where Evan and I are in very close proximity together and he has me kind of – he’s holding me, or whatever, and I’m worried that he’s going to strike out and what will happen if, God forbid – the awful things that go through my head – if I end up unconscious or something, my thought isn’t, ‘Oh my God, what’s going to happen to me?’ My thought immediately goes to, ‘What’s going to happen to him then? And what’s going to happen to his brother?’”
Today is the sixth anniversary of the death of Jane’s husband, Rod – “probably the best friend I’ll ever have in this world” – and because of that, Jane told Ray:
“Today is just one of those days, I’m just letting myself be sad and just say that this is absolute rubbish, you know?”
Jane is one of those people that you just listen to and marvel at, because not many people could do what she does. But marvelling isn’t enough for Jane and the many thousands of people caring for relatives. They need proper state support and they need it now more than ever.
To hear the full conversation between Ray and the amazing Jane Johnstone, go here.
Niall Ó Sioradáin
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