Sunday 22 September 2019

State failing in its duty to help hidden army of carers

The carers in Ireland are people who get up early in the morning, says Brendan O'Connor, and often they won't have slept much either. We should support them more

We celebrate carers and their selflessness is admirable. However, they deserve more support and they should receive far more help from the State
We celebrate carers and their selflessness is admirable. However, they deserve more support and they should receive far more help from the State

'A hidden army' is how the front page of the Indo described them. It was apt. Sometimes, one of them will break rank to speak to you. They don't moan but it comes tumbling out. They are grateful of anyone they think might understand, anyone who they suspect is vaguely in the club, too. Because they don't like to moan. It feels disloyal. It feels especially disloyal to moan to an outsider, who wouldn't get it. But between those who are in the club there is an understanding, that you can bitch a little without it meaning you don't love the family member you care for.

Like so many heroes, they don't see themselves as heroic, they just think they are doing what anyone would do. They do it out of love and duty. But not a duty they wear heavily. According to the latest Census figures just released, there are nearly 200,000 of them that we know of. That's nearly one in 20 of us. But the thing is that many carers don't identify as carers. They are just doing what anyone would do, looking after a family member who needs them. Family Carers Ireland thinks there could be 160,000 more in the hidden army.

Sometimes you meet them and you can tell they are on edge. Because when you are caring for someone else who has intense needs, you often don't have the time or energy to care for yourself. And you don't get to take a break much. And you have to keep going beyond the point at which you are stressed out, or burnt out, because you can't stop. There is no alternative. Many of them keep going until their own health breaks down, until their mind or the body forces them to stop. This army has its casualties.

These are people who get up early in the morning. Sometimes they won't have slept much. Sometimes there might need to be someone awake all the time to watch for fits, or stoppages in breathing, or a host of other things most of us are blissfully unaware of.

And when they do get up early in the morning they often face a long day of thankless routine as they see to every need of someone they love. There is little dignity in it sometimes, but they fight to give their loved one a shred of dignity. And even in this constant washing and toileting and stimulation and often slow and painful feeding, even when every day they feel like giving up, even in the resentment that must often creep in, there is often more love than you and I can imagine, a real love that has given up everything to mind someone who can't mind themselves. Sometimes it's payback. Sometimes they are minding someone who minded them once, before the tables were turned.

A lot of the people in this army are experts on all kinds of drugs, medical equipment and procedures. They know far more than they should about medicine. And they also know the cost of a wide range of things, from nappies for people who shouldn't need nappies, to feeding tubes and oxygen tanks and a whole regime of paraphernalia.

Thousands of this army are child soldiers, who do everything from feeding to washing to minor medical procedures on parents and siblings every morning before they go to school. After school, instead of hanging around or playing football, these child soldiers rush home, often to do for a parent what the parent should be doing for them. You can be tempted when you meet these kids to think they are different to us, special in some way. They are often so cheerful and serene and positive about it, you can be fooled into thinking these kids have been granted a special grace the rest of us do not have. But they don't.

They're just kids like you and I were, but somehow they give up a typical childhood and seem to be happy to do so. It can often challenge our assumptions about what we think makes us happy when we see how much joy carers seem to get from caring.

Equally though, the cheerfulness these kids often display can make it easy to think that it's OK that they do what they do, that it's OK that they may miss out on getting a proper education, that they may be isolated from their peers, that they may have to grow up far, far too quickly. It's a tricky one. Yes, we celebrate them, and their selflessness is admirable. But equally, they shouldn't have to do this. There should be more help. The rest of us shouldn't be able to ignore them. And the more than €10bn worth of free labour that they and their fellow carers do for the State every year should be acknowledged a bit more.

Lots of parents, too, give up a lot to be carers. They make huge sacrifices in terms of normal family life, in terms of their own relationships and intimacy, in terms of their relationships with their other kids.

They turn their houses into hospitals at times, because they want to keep their loved ones at home. And it's lucky for us that they do, because if only a fraction of carers couldn't keep going tomorrow, hospitals and care homes in this country would be swamped. Indeed, without the hidden army, the economy would collapse.

I didn't realise for a long time that my wife and some of her friends are carers of a sort. Obviously you could argue that all parents are to some extent. But there's more of an element of caring when there's a child with a disability. I stress, we are in the very shallow end of the caring business in our family, the FCA as against the Army if you will. We are among the lucky ones. My wife would certainly not identify as a carer.

But her life is very different to that of the mother of a typical child. There's always something extra to be done, some medical or therapeutic appointment. And in a low-level way everything about your day is different because everything is that bit harder. And all the time doors are being slammed in your face and in your child's face.

Luckily the world is much more enlightened than it used to be and there are lots of fantastic people who welcome kids with disabilities into schools and gymnastics and art classes and whatnot, but still you are at the mercy of people's kindness.

The parents in the shallow end get worn down by all the things we take for granted. When the kid refuses to walk and has to be carried, even though she's too big to carry, the constant vigilance for bolting every time you leave the house, exhausting in itself. The meltdowns when there's noise or too much light or some form of sensory overload, the torture of doing the homework when you've already done speech therapy, or physio or OT, because you have had to learn to do all these things. The homework is all the more torturous because you are being reminded all the time while doing it how your kid is diverging from the others, how incredibly hard it is for her. You know that one day she won't be able to do it any more, but you have to believe it's worth keeping going. You have to believe in her.

Then there's the sleep deprivation that is part of the gig, sleep deprivation that doesn't stop when the baby finally starts sleeping through the night, because she never does, though you keep imagining breakthroughs, that you will one day get a full night's sleep. And then the constant guilt that the other kids in the family are missing out, which they probably are, even if only on attention.

Because the one that needs you most is like a stalker. It's like some intense co-dependent relationship. They need you all the time. And then there's the guilt about your other children turning into carers, and even though you explain to them all the time they don't have to do that, that they are not responsible for their sibling, that they are not the parent, they do it anyway.

They learn early to fight the other one's battles, to always help them along. The upside is that they learn kindness and tolerance and humanity as well. And the guilt tells you they will need that, because they will be caring in some form after you are gone.

And that's just the shallow end that I see up-close. It's frustrating and exhausting and relentless and then every now and then they crack. My wife and her friends call it a DS day, when the challenges all get too much - when officialdom seems particularly cruel or intransigent, when you seem to be constantly reminded of how your child is not enough, when someone is an asshole to you, when all the extra work and appointments seem to pile up together, when the child just won't cooperate with anything, or seems to regress in front of you - and they turn to each other, because they know the others understand, and they can speak freely.

And they let it all out, with black humour that only they are allowed, and tears and rage sometimes, too. And that support allows them to pick everything up again and keep going. And they think of other people who have it much harder, the ones who aren't in the shallow end.

We all know people in the hidden army. And we all think they're great. We probably forget to show them this sometimes. The State doesn't do enough to help them either, because they're not a sexy issue and they don't have much time to get out and complain. So the least we can all do is support them on their often lonely, frustrating road. There's no doubt most of them wouldn't change their situation for the world. But that doesn't mean it's easy. And they operate out of incredible love. But that doesn't mean it's easy either.

They probably wouldn't ask you for it, but a little bit of support, a listening ear, offering to give them an hour or two of respite from the relentlessness, to let them get away for a while just to stop thinking about it for once, all these things could be invaluable.

And we probably don't think of doing it, but sometimes maybe we, as a society, should remember to say to the soldiers in the hidden army, thank you for your service.

Sunday Independent

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