The reality of life as a carer – why we need to reverse the respite grant cuts


Protest against Respite Grant cuts outside Dáil Eireann, 11th December


Eighteen months ago, in a professional capacity, I undertook a piece of research that involved speaking to carers, both paid and non-paid.
The aim of the project was straightforward – to evaluate their reactions to some communication material and, based on that, suggest amendments.
But it turned into much, much more.
Over the course of a week, I spoke with almost 40 carers, broken into four groups.  Some were caring for elderly relatives, usually parents, but sometimes uncles, aunts. Others were caring for their children, some with physical disabilities, other with intellectual disabilities, some with both. They spoke openly, passionately, and above all, honestly.
The conversations I had with those people that week floored me. What they told me shocked me, and in sometimes, horrified me.
The group discussions were scheduled to run for 90 minutes each.  But such was the level of engagement, so eager were these people to be heard, that the sessions greatly overran. Timekeeping’s usually quite important when conducting qualitative research.  In the last 30 minutes of a 90 minute group discussion, you can sometimes sense a respondent fatigue. Not so, here. Two hours, two hours and fifteen minutes – two and a half hours. They didn’t want to stop. This was the first time they had ever had an opportunity to air their fears, their frustrations and their exhaustions, and have somebody really listen to them. And I couldn’t stop listening.
In light of the cut to the carers’ annual respite grant announced in the Budget last week, I want to share some of what I heard, and learned in those groups
Caring is a full-time job.
The first thing I learned is that being a carer is a full-time role. There is no downtime. And by full time, I mean for some, they were on alert 24 hours a day, 7 days a week.  There is rarely any respite. Family carers spoke of how they shouldered all the burden. Siblings did not contribute fairly, or take any responsibility for the care of their parents. The load typically fell to one family member. They spoke of their exhaustion. How they were on high alert, all the time. “I don’t know how to relax”, one said. “It’s been so long since I relaxed, that I don’t know how to, anymore.” Respite was an essential. “Just a few hours to do your own thing, spend time with your own children, clean your house. Just to have that freedom from each other for a short while.”
Carers don’t always choose to care
The second thing that struck me is that many of those who care for others full-time do not make a conscious decision to do so. Rather, it happens. A parent falls ill, and, needing full-time care, moves into their house. Their child is born needing full-time specialised care. Would these people have chosen caring roles as a career choice? No. Rather, they do it because they have to. Often – and they are willing to admit this – they have no aptitude towards caring, and it does not come naturally. Neither – and this is important – do non-paid carers get any training. Paid carers are trained, but family carers are thrown into the deep end with no support. But they have no choice. They have to do it, and they get on with it.
Isolation is a huge issue
Because being a full-time carer is pretty all-consuming, it’s often impossible to have any kind of a social life. Carers spoke about how gradually, as the caring role subsumed all leisure time, their opportunities for socialising had declined and friendships had waned. Often the sense of isolation was the worst, they said. This is felt particularly in rural areas, where transport can be an issue. Having no-one to talk to is the hardest thing of all. Nobody cares, they felt. The media doesn’t talk about it. “No-one knows what it’s like, and no-one wants to know”. Support from the HSE is non-existent. “Sometimes you can’t even get to speak to a real person.”
Carers are human too – with human reactions
The carers I spoke with were unflinchingly honest. They were willing to admit that sometimes they got angry and frustrated. Sometimes it might be with a parent calling them numerous times during the night. Other times, it may be with a child who had wet the bed for the second or third time that night. Sometimes sheer exhaustion and frustration led them to say things they regretted to those in their care. Sometimes they shouted. Sometimes, they had shocked themselves. “Anything can happen”, one said, “when people are deprived of their sleep”. With no support, no respite, this is exacerbated.
Society ignores those who can’t speak for themselves
Carers felt angry on behalf of those they care for. “What’s missing in our society is dignity and respect for our old people”, one said. “Once they’re past their sell-by date, they’re thrown on the scrapheap. They’re only an inconvenience”.  Unanimously, carers felt invisible. They were shouting into a void, and no-one can hear, nor does anyone want to listen.
What does the annual respite grant really mean to carers?
Remember; however that caring is a full-time job. Carers often work around the clock, and do not have the means to earn an income. In addition, by providing care, they are saving the state the cost of providing this care on a residential basis. This care is provided for an allowance of as little as €200 a week (this can sometimes be the only household income).
So, what does the respite grant mean?
·         Respite means a break. It allows a carer to pay for supervision, either at home, daycare or residential care, so that they have the peace of mind to take a break. Be that a holiday, or just some time free from the responsibility of caring. Reasonable in anyone’s book.
·         Respite grant money is often used to pay for additional therapy for the person in care, to improve their wellbeing, either physically or mentally.
·         The respite grant is not always used for “respite”. Because carers are low-income earners, sometimes it’s used to pay for car insurance, heating oil, or home repairs. Everyday expenses. And yes, often carers depend on it for this.
What can we do?
There are many, many compelling arguments that can be made in favour of reversing this cut. We can express our outrage all we like, but it’s time to stand up and start doing something about it. There is still time to make a difference. Write a letter to your local TD. Or pick up the phone. Come out and protest (there is another protest outside Leinster House on Thursday 13th December at 11am. It’s not easy for carers to come out and protest – so we need to do this on their behalf.) The real mark of a society is how they treat their most vulnerable.
Don’t give up. Speak up for those who can’t speak for themselves. And let’s tell our government what kind of a society we really want.
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Our elderly deserve better. An open letter to our TDs

This is a letter I have today written to my local representatives in government, and have published here, for wider circulation.

Reading Marese McDonagh’s piece in today’s Irish Times has made me so angry. Angrier than I ever recall being over the past five years. Enough is enough.

Because I have had a home, and income, my health and my independence, I selfishly haven’t done enough to protest against injustices over the past five years.  But this is my tipping point. I can’t stand by any longer.
____________________________________________________________________________

Dear ….

I write to you, as my local representative in government, including the link below to an article in today’s Irish Times.

http://www.irishtimes.com/newspaper/health/2012/1204/1224327432416.html

If you have not already read this article, I urge you to take just two minutes to read it in detail. Absorb it. And think about what it really means. Put yourself in the shoes of someone who is housebound and dependent on an hour of help a week to maintain just their basic dignity. Really think about it.

I urge you strongly to reconsider the decisions this government has made with regard to the provision of home help cuts in our country.

Enough is enough. What your goverment is doing to the weakest and most vulnerable in our society is wrong, and it has to stop. These cuts must be reversed.

No, providing for the most vulnerable in our society won’t help the economic recovery. But the way we care for our elderly tells, more starkly than any economic indicators ever could, the type of society we really are. 

Is this really the type of society you want to preside over? Really? The type of society that will leave an incontinent woman lying alone in a bed, waiting for her home help to arrive to attempt to restore her some dignity in the space of half an hour? Really? Is this really what we have come to as a country?

Yes, families have responsibilities to older members, but sadly, these responsibilities for whatever reason are not always met. That absolutely does not mean it is acceptable to abandon the people who have called this country home for decades, who have contributed to its economic growth, have raised children and grown their businesses here. To leave them to the mercy of their own physical and mental frailties. Like it or not, we have a duty of care towards these people. They are our parents. Our grandparents.

As a direct consequence of your actions, thousands of our elderly will become directly reliant on the HSE to provide them with care, at the expense of those with chronic illness. Can you not appreciate how short-sighted this is? Remember, this is the same HSE that thinks it is perfectly acceptable to place cystic fibrosis patients, at high risk of infection, in shared wards and in rooms with shared facilities. In a hospital that is suffering with a severe outbreak of the winter vomiting bug. A HSE that has already shown itself, many times over to be inept at bed management. Yet you appear to fail to realise the potential impact of adding more long-term patients to the system, both in terms of bed availability and overall standards of care.

Is this really what you want to leave as your legacy? Really?

We will all be old one day. We may not all be privileged, or have a voice to speak up for ourselves. But we will eventually all succumb to the limitations of our bodies, and possibly even our minds.You cannot in all good conscience argue that this should mean our dignity should also be sacrificed.

This is only one of a number of letters I could have written. I could have written in anger about how your government has not delivered on your promises on mental health. How education aids for those who really, really need them are being cut, quietly, all around the country. I could have written about how your government continues to justify the payment of €30+bn of OUR money to a dead, gambling entity, in order to fulfil the conditions laid out by our European friends. I understand that patience is necessary when dealing with Europe, and that demonstrating prudency and economic discipline can only help in our quest for debt restructuring. But what you are doing to achieve this is wrong. Wrong on so many levels.

I’m a “middle earner”. I’m not well off. By no means. I drive a car that’s 10 years old, can’t afford health insurance and have a certain level of personal debt. But for goodness’ sake, I have a job and an income and I am not reliant on anyone to care for me, and I can stand up for myself when I feel I am being unfairly treated. I’m the person you should be targeting for cuts and levies, if it needs to be done. No, it wouldn’t be popular with voters. I know, and am not dismissing the plight of many middle earners – particularly homeowners – are already under severe pressure. But we are not confined to beds or empty houses with no independence. What you are doing is not right. It is just not right.

I’m tired of being angry. I’m tired of feeling that we are merely postponing the inevitable sinking of our society. But I’m not tired enough to stop fighting for the care of those who need and deserve it the most, and, as representatives paid by us, to represent the interests of EVERY citizen in this country, neither should you.

I want to know what you, as a paid public representative are going to do, to restore this tiny amount of dignity to our elderly by restoring home help hours to their previous (already woefully inadequate) levels. Writing to you is the first step of many. I, like many others have been silent for too long already. I will not stop until I hear evidence that you are taking definitive action to improve the circumstances of those fellow citizens who rely on their home help to provide them with a minimal level of dignity.

I await your reply.

Anne-Marie Flynn.