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.

My 10k adventure – and a thank you

Two months ago, I took a mad notion and decided I’d run 10km for charity.

Okay, I lie. I did no such thing. I decided I’d repeat the efforts of previous years, and sign up for the Women’s Mini-Marathon, do some token training – consisting of running 500m down the road and back while feeling faintly ridiculous – for the week preceding the big event. Then I’d turn up on the day, togged out like a pro. I’d jog a little and feel smugly fit and healthy before starting to wheeze, and would happily succumb to a(n albeit brisk) walking pace around the 2k mark. Then I’d finish triumphantly by jogging across the line at a respectable 1 hour 40 minutes and head to the pub to smugly celebrate my achievement.

This year was different, though.

I work for a large multinational corporation. I’ll openly admit that this is not necessarily the career path I’d have chosen as a young idealist, but it’s worked out well for me. While I work hard, and sometimes excessively long hours, I consider myself pretty lucky that I can work with some great clients who do fantastic work in the social arena. I’m glad that as part of my day job that I get to meet people who inspire me, and I’m grateful that I’m able to play a very small part in helping them achieve their aims more effectively and successfully.

One of the single biggest positives of my job is that as part of our corporate social responsibility programme, I with a small team of others have been able to work closely with the wonderful people at LauraLynn House, Ireland’s first – and only – Hospice for terminally ill children. Social responsibility programmes within big multinationals sometimes get a bad rap among cynics, who suggest they smell a little of tokenism and are simply part of an effort to generate positive PR, but I say, if I can contribute to a cause like LauraLynn House, even to a tiny extent, as part of my day job, then that’s good enough for me.

I’m sure by now that most of you have heard Jane and Brendan McKenna’s tragic story, but if not, you can read it here where you can also find out a little more about the work that the Children’s Sunshine Home and LauraLynn House do.

Three weeks ago, I was confronted with an image on the front of the Irish Independent that stopped me in my tracks. Tiny baby Leo McWade, aged 6 months old, gazing up at his dad with his beautiful big eyes, had been born with an inoperable heart defect. Told he would have very little time, his parents, Catherine and John had brought him home to care for him side by side with his twin sister Molly. I won’t deny that I cried when I read of his dad John’s feeling of panic when, on a particularly awful night, he phoned the hospital desperately looking for help and was told not to bring him in, that there was nothing they could do. I don’t have children, but I can only imagine the how horrifying that feeling of helplessness must have been.

John and Catherine subsequently moved into LauraLynn House with Leo and Molly, where Leo has received specialist care. The twins are now six months old. John, during his interview with the Irish Independent marvels at Leo’s resilience. “Now we have gotten to know this little boy. We can hold him and he looks up at me and he smiles”, he says. They can now tell Leo’s little sister that they did everything they could for him.

I hope John and Catherine don’t mind me telling their story here. But I don’t mind saying that nothing I have ever read has affected me so much. I hope Catherine and John get some more time with their little boy, and when the time comes, I hope sincerely that they’ll get the support they need at such a terrible time.

LauraLynn House is a wonderful facility. In their recently-opened new hospice building, they’ve thought of everything. It’s full of natural light. The bedrooms are decorated so as to make them feel as homely as possible. While every room houses essential medical equipment such as hoists, they are discreetly housed behind doors so as not to serve as a reminder that this is a medical environment. Large recliners beside beds enable tired parents to rest in comfort. Computer screens where staff can access medical records double as interactive screens for children to play games. There are guest rooms, with small kitchens where families can avail of privacy and retain some dignity at that most terrible of times. And in the most poignant of additions, there is a beautiful room called the Butterfly Suite, where children close to death are brought to die with their families around them. Importantly, LauraLynn House is not a sad place, nor is its sister organisation, the Children’s Sunshine Home. Though the facilities between provide care and respite for hundreds of children and parents, they are places of light and laughter.

LauraLynn House receives NO direct government funding. Not a cent. Apart from some funds diverted from the state contributions towards the Children’s Sunshine home, on whose grounds LauraLynn House sits, the hospice relies solely on the goodwill of fundraisers to pay its staff, and maintain its buildings and equipment. Running costs for the Hospice amount to over €2m annually. That’s a lot of money to raise.

When I read baby Leo’s story, I’d already started fundraising. I’d already raised quite a bit, having beaten my original target of €250, which I’d thought ambitious when I set it. But reading this made me more determined than ever. So I started to make a nuisance of myself, and it paid off. I’ve known from years of getting soaked outside churches while shaking buckets and selling raffle tickets at table quizzes, that we as a nation are an incredibly and unerringly generous people. I’ll always remember the old gentleman with no coat and a jumper that had seen better days who, outside a north Dublin church on a freezing cold, rainy night with a shy nod pressed a €50 note into my collection bucket. Once people are asked, they almost always respond with genuine enthusiasm for a good cause. But when times are that bit harder, and money is tight, I’d have understood if people were more reticent. I was prepared for that. But the opposite proved to be the case. In the end, I’ve managed to raise over €1,200 for LauraLynn House, and to say I’m delighted is an understatement.

One of the most amazing elements of my fundraising effort was the response I got from my efforts to promote the cause using social media. Anyone who knows me will know that I’m  an avid fan of twitter. I’ve been using it for about three years, and during that time (once the initial rite-of-passage novelty of celeb-following wore off), I’ve gathered over 1500 followers, and enjoyed thousands of fascinating, bite-size conversations with people from all walks of life on lots of interesting topics. (And politics.) I’ve even had the pleasure of meeting some people who I can now safely say will be friends for life. But despite my already strong conviction that the people you meet on twitter are among the best you’ll ever find, nothing could have prepared me for the response I got there to my fundraising efforts. In total, nearly half amount came from people who follow me on twitter. Astoundingly, a third came from people I’ve never even met. Some even passed my fundraising page on to friends and colleagues who in turn, also contributed.

Just… wow.

So when I togged out last Monday, I felt I owed it to those who donated to put in a bit of effort, over and above my usual laid-back ambling through the route. Work commitments meant training time was minimal, so I approached the day with some apprehension. (By minimal, I mean non-existent.) An old injury didn’t help, but along with a good (and annoyingly, infinitely fitter) friend of mine, I vowed I’d give it socks. (I even bought special socks for the occasion.) The first kilometre was a breeze. I was starting to wonder what the big deal about running was. By 2k, I was getting a wee bit sweaty. At 3k, I was starting to wheeze and feel a bit dizzy. By 5k, parts of me I didn’t know existed were starting to hurt, and I had to slow down for a bit. (By slow down, I mean stagger to the nearest water station and consider catching a bus.) Around the 7k mark I was definitely starting to hallucinate and reminiscent of the Lenten episode of Father Ted where everything appears to Ted to be a giant cigarette, I was having visions of tantalisingly cold pints of liquid. (Swithwicks.) The firemen cheering us on at Donnybrook at the 8km mark bolstered the spirits somewhat, despite being somewhat of a distraction. By 9k, every single part of me, including my eyeballs hurt (and didn’t stop hurting for four days). But I crossed the 10k mark having managed to run a good 90% of the route, and clocked a time of 1hr 18 minutes. Not exactly impressive, but bearing in mind that I absolutely detest running and avoid it at every opportunity, I was pretty damn chuffed with myself. I was so chuffed that I even contemplated running a victory lap around the Green.

So, this post is a thank you. To anyone who made a donation to the cause, thank you, thank you, THANK YOU, from the bottom of my heart. I’m humbled by your generosity towards what is a wonderful cause. LauraLynn House value every cent of the money you donated. But in addition to that, the past few weeks served to remind me that despite all the negativity and cynicism that pervades the news, the papers and our everyday discourse, there is still an intrinsic goodness in us, and a desire within us to help out others less fortunate than ourselves. And it’s for that reminder that I’m even more grateful.

You can read John McWade’s interview with the Irish Independent here.