Why should you care about carers? Because some day it might be you
Sympathy and admiration are all very well - but that is not what Ireland's 200,000 carers need, says Brendan O'Connor
Imagine wishing your own child would die. Imagine wishing they would die before you. Imagine if you prayed for that every single day. Imagine if she died and you were sad but you agreed it was the best option for her. That's how Sinead McDonnell's mother Mary felt about her daughter's life and death. It's a pretty damning indictment of our society.
There are parents all over the country who feel like that, parents who are terrified of death only because they can't bear to contemplate what happens after their death to a child they care for, and parents who will experience, along with grief, some form of relief and closure if their child dies before them.
They have no faith that society will look after their loved ones. A lifetime of caring and of having doors shut in their faces teaches them that to have any faith in society would be foolish.
If you didn't see Sinead McDonnell and her parents Denis and Mary on the Prime Time special about carers the other night, you should go and watch it on the RTE Player. It is, in some ways, the most important TV programme you will have seen all year.
You should definitely make it your business to watch the first 45 minutes where Miriam O'Callaghan, displaying her peerless empathy and steeliness, shone a light into the often shockingly hard lives being lived by 200,000 people in this country who care for family members.
The programme is hard going. As in, it's actually hard to watch at times. And you will feel desperately sorry for these people. But then, as Siobhan Powell's mother Johanne will tell you, that's exactly what they don't want. They don't want anyone's sympathy. Neither do they want you to think how great they are.
Johanne will tell you that she and her fellow carers are no different to the rest of us. Some of them are good people, some of them are not. They don't have special powers. They don't have special reserves of love or patience, though you would suspect their capacity to love their children has been tested to the limits, certainly more than ours has. They do what they have to do because no one else will do it, and they don't get the help they deserve.
Sam O'Carroll's mother, Jacinta, could be up several times during the night changing Sam's bed. Most of the furniture has been taken out of Sam's room, the bed has been replaced, the floorboards have been replaced, because Sam jumps on them, bangs his head or his feet off them. There are locks on all the doors in Jacinta's house. This is to protect her from Sam.
One day, at the beach, Sam grabbed her by the hair and started head-butting her. He kept head-butting her for 25 minutes. She couldn't escape, and she worried if she did get away from him that he would turn on someone else. So she absorbed it all. She knows it wasn't personal. His head was just overloaded. Then, as another woman who is in the same position pointed out, Jacinta went home and made the dinner. The attacks went on all that summer.
Jacinta said something that many carers would identify with. "We don't live a normal life. We pretend to be normal." And, meanwhile, at every noise, every bang, she jumps, worried it is Sam harming himself or someone else.
If she had the odd bit of respite, if she even had a break to look forward to two or three weeks hence, it would help Jacinta to keep going. But there is no respite, no break to look forward to that would make it bearable. A respite centre has been set up near her. It's Hiqa certified and properly staffed. But she says the HSE won't buy respite nights there.
It was all so wrong. These were all people who have seen so much sadness in their lives, whose dreams for how life would turn out had been shattered. For them, the present is relentless and the future is filled with fear. And mostly what they get from all of us is admiration or sympathy, but nothing that might help them.
So Mary prays that Sinead will die before her. Mary, who has already had to watch her bright and happy little girl become uncommunicative and unresponsive as time took its toll, prays Sinead will not be left to the world to look after. Sinead did speak to Mary on Mary's birthday one year, to say, "You're 74 now. In six years you'll be 80 and who'll look after me then?"
And Theresa Kinsella (82) hopes in vain to get her daughter Fiona (52) housed somewhere before Theresa's Alzheimer's gets so bad that she can't mind her any more. But despite experts agreeing that Theresa is no longer in a position to be Fiona's carer, there is nothing happening. So she prays to Padre Pio. Because that's all you can do in a democracy these days is it?
But then why would we do anything as a society? Why would we decide to intervene to stop these people from saving us all billions? As long as they keep doing it, sure let them at it. We can't make everything our problem, can we?
Because Mary McDonnell made a very simple, very good point. "What's our problem today could be theirs tomorrow."
So while it's easy for us all to feel sympathy and even a bit of outrage and then move on with our lives, this is going to come to lots of us. One in 10 people is a family carer right now. It is estimated that figure will move closer to one in five in the next decade.
Anyone who is not a carer thinks it's something that happens to other people. But it's people like you and me, who end up as carers pretending to be normal.
I have some small notion of how these things come into your life. I always thought that having a child with an intellectual disability was something that happened to other people. It certainly didn't fit into my life plans, or my view of myself, or my vision for life.
Even when it happens, you tend to think: "No, this can't be happening, they've got the wrong people here. This is meant to happen to nice people, to good people, to people who have the love and patience, to people who have the time."
But folks, they don't pick who they send this challenge to based on those criteria. The universe sends out these twists of fate and changes in your story willy nilly. And while we have deeply engrained notions in our culture here that this "burden" is given by God to those who can handle it, or those who are chosen for their special qualities, I offer myself to you as living proof that they give them to the worst of us as well.
That notion of the gift from God given to those who have the specialness to cope with it, has translated in more secular times into a slightly more subtle, more insidious view. And it is the view that has left Ireland's carers on their own. There is a notion now, that no one will admit to, that, well, this is your burden to bear. You got a bit of a dud hand, a bit of bad luck, so it's up to you to look after the situation. Don't come moaning to us, we all have our own problems.
Which would be fine if we lived in some kind of survival-of-the-fittest society. Except we don't. We don't tell the people on the dole, "Sorry, there's no dole this year. We don't have the resources for it right now. Maybe in the action plan for next year we will see what we can do for some of you".
It doesn't work like that does it? In this civilised society, citizens have entitlements.
But we have a different paradigm when we look at carers and the ones they care for. If we do provide for their needs in any way there is an element of charity, sympathy. And they should be glad to have it. And in the end it's really up to them to look after their own families.
But remember. Your parents will get old. Your spouse could get sick or have an accident. Your child could get sick or have an accident. Something could happen in childbirth. These are not things that happen to other people. They are things that happen to people like you and me and then you and me would be living those unbearable lives we sympathise with, then we would be those people we admire so much.
And sympathy and admiration wouldn't butter many parsnips for us then, would they?