How do I recycle these, Minister?

“We have noticed that your bins tend to be extremely heavy. To be honest, disposing of your waste is costing more than your current charges.”

I received this email from my private bin collection company in 2014, and my annual charges were increased from a bargain €99 to €275 overnight. I’m expecting more of the same with the new pay by weight system announced yesterday by the Irish Government.

My bin is heavy because it is full of used adult nappies. Which are very heavy. But what options do families like mine have?

Nappies, pay by weight,

Apparently people with lifelong/long-term medical incontinence issues like my disabled daughter will get a €75 annual waiver. Anyone betting that will cover the likely increase in charges? No me, neither.

The Irish government keeps claiming that core social welfare payments were not touched during the austerity years, what they fail to mention is that many non core payments were cut. And many new charges were imposed. Including bin collection charges for many families for whom the service was previously free.

Of course there was no corresponding tax reduction or social welfare increase to reflect the savings made from outsourcing to private companies.

The result is that many people are struggling, and the imposition of pay by weight bin charges will just make things worse.

In my part of Dublin we have three bins for ordinary rubbish, food waste and clean recycling. There are strict rules about what can go in each, that few people seem to know about or follow. At the same time, some people are dumping more and more of their waste wherever they can.

There’s no incentives to recycle, it’s all about profit and punishment.

I used to be in favour of it, but now the whole thing feels like a con, with recycling being rejected due to contamination, and all the carefully sorted bottles being thrown in together by the collection truck.

It all smacks of a State that enjoys exerting control over its citizens, and not about saving the environment at all.

Because if it was about saving the environment, surely families like mine would be helped to source and use adult cloth nappies?

Disclosure: I am lucky, I will find a way to absorb or reduce these costs, but not everyone will be able to, and I wrote this after hearing a sneering radio presenter this morning predicting that the poor would be bleating on about their inability to pay. Something like that anyway. Also I am very happy with the service from my current bin collection company – just concerned about future price rises.

Outdoor fun for disabled kids with Rabbits and Runners

Disclosure: this is NOT an ad, NOT a paid review etc etc

I could have been packing for a week away, I was that laden down. The buggy was full, the buggy bag was full, and so was my new Mia Tui rucksack (which I can confirm is perfect for running!). Actually my disabled daughter and I were just going to Malahide Castle for a Saturday morning supported walk/run with a new group called Rabbits and Runners. But as usual I didn’t know what to expect, so I was prepared for anything.

You may have noticed that I’m back running again, and that I’ve also run while pushing my disabled daughter’s chair, and I’m sure I’ve made promises on here to take her running regularly, but it just hasn’t happened…

It always seems too hard.

I could always find something else to do.

Until last Saturday.

A friend had mentioned Rabbits and Runners, and I had nothing on that morning, so the two of us headed out to Malahide for 10.30 am.

As usual, bringing my severely disabled daughter to a new event made me feel anxious. Would it work? Would she like it? Would it be truly wheelchair accessible? Would we really be supported?

Well I can tell you now that the answers to those questions were Yes, Yes, Yes and Yes.

The worries I had melted away as I pushed her chair into the Avoca courtyard and a member of the Rabbits and Runners team found us, welcomed us, and immediately put us both at ease.

So what are Rabbits and Runners? Well they are a new volunteer group of young people trying to make a difference. They are organising monthly meet ups following the 5K Parkrun event at Malahide Castle. They use the same route, and support special needs children (and adults) and their families to get around the course in any way that works.

B and I were at the front (of course) and members of the team took turns to push her while I jogged alongside and chatted to her. As did anyone we passed or met along the way. She LOVED all the extra attention, and we both enjoyed the fresh air, exercise and pleasant company.

For me it was a joy to feel supported in a way that is rare. Usually it feels like it’s just me doing everything and responsible for everything.  Especially when we leave the house. On Saturday morning the load was shared, and that was a wonderful thing.

B and I loved Rabbits and Runners and want to go again, but the group needs more families to take part to make it worthwhile – so why not give it a try?

Find our more about the group on Facebook by clicking on the link below:

https://www.facebook.com/rabbitsandrunners/

 

 

55 and still alive

The title of this blog post was going to contain lots of ‘F’ words – not 4 letter ones I hasten to add – because I am feeling pretty fabulous right now. But it sounded a bit too cheerful for a birthday I was not looking forward to – because even though I’m actually a fairly optimistic person (except when under extreme stress) 55 just sounds old to me.

My 50th birthday was fine, because lots of us can expect to reach 100, can’t we? But now I’m half way to 110, it’s time to embrace the idea that I have more years behind me than ahead. And that’s a scary thought.

And I’m finally, definitely middle aged. I should be grumpy, grey, gloomy and saggy. Eeyore with a paunch.

Luckily that hasn’t happened yet, thanks to author and blogger Office Mum who passed on a free month’s gym membership that got me over my gym phobia, and a friend who encouraged me to join her running group. And this week saw confirmation that I have lost over a stone in weight over the past 18 months with no calorie counting involved and I haven’t given up eating cake.

Life has also been slowly improving – with a number of deep dips – and so between the exercise, and a restricted menu due to stomach problems, I’ve been able to tear up my regular prescription and ditch everything on it, including stuff I’ve been on for ten years or more for a number of different diagnosed medical conditions. The weaning process wasn’t easy, but I’m glad to be rid of all the horrible side effects from the medication. Of course I’m not the same person I was: I’m stuck in never ending menopause and I need to get my cholesterol level checked and I still have anxiety, but it’s manageable for now, though that may change once school begins again…

The sad thing is that the physical and emotional problems needing medication were probably the result of severe stress, most of it caused by the State and other people. And most of it completely unnecessary and avoidable. And many of my friends have experienced similar issues, or are going through hell right now. It’s so wrong and leads to so much misery. Just why????

Worse still the state expects carers like me and my friends to keep caring indefinitely, and yet the messages from politicians tell us that our health and fitness is our responsibility. How does that work if you don’t have respite or a service for your loved one, or spend your days at appointments and form filling? Or have lost your home and income due to your caring responsibilities?

It doesn’t make any sense, but enough of the ranting as this is supposed to be a cheerful post, and back to the birthday and the reality of being 55. I seem to be healthy, I’m comfortable with the way I look, I’ve accepted that I’m socially awkward – and luckily my friends seem to have accepted it too – I’m a stuck at home carer, but when things are calm, it’s not a bad life, I can see that now. So this is me, looking forward and feeling very much alive.

Joining in with Reasons to Be Cheerful, which is hosted this week by Lakes Single Mum.

 

“See me, hear me, support me and value me.” A carer speaks

Note: I loved the speech by family carer and co chair of the Special Needs Parent’s Association, Lorraine Dempsey, at the launch of Carer’s Week, so I typed it up, and she gave permission for me to share it here.

“I have a daughter who is nearly 14 and has multiple disabilities and she has brought me on a unique journey. I wouldn’t have always identified myself as being a carer. Carers week was not on my agenda, and it was only recently that I looked at the role of carers and asked do I fit with the title carer? Is that who I am?

I began to identify as a carer when I recognised that my role far outweighs that of a typical parent. It was also the loss of other roles that I once had in my life: like having to leave the nursing profession that I’d worked so hard to join. I was now providing nursing care for my own child, but without the same level of recognition, and certainly with no money for my efforts.

So what needs does my daughter have that go above and beyond?

When she was a baby she had to be fed, watered changed, caressed, cuddled and comforted, but she also had to be had suctioning and tubefed.

I was handed a tiny 5 lb baby and told: ‘There you are, go home.’

I kept my nursing hat on and for me that was my protection against the all the pain we were facing with a baby that was being sent home to die.

That was the beginning of my journey as a parent, and all the while I had this beautiful other twin who expecting me to be mummy, and nothing other than mummy.

As the years went on, I still didn’t see myself as a carer, things improved slightly, and the medical equipment left the house piece by piece. But the mobility equipment came in, getting bigger and larger, and less child friendly as the years went by. The bright colours were dropped and everything became black plastic.

My daughter is now entering her teens, and I have a one year old who is in nappies, but I also have a 13 year old in nappies, who still requires support to be fed, who requires support to enjoy her life. And she does. She rules the roost at home, and she really does enjoy life.

I now identify with the 11% of women between 40 and 55 who provide unpaid care.

I also identify with the 2/3 carers who don’t work full time. I left a well paid job as a nurse, I left my own income and my own identity and I’m lucky that I have a partner who can support both of us, but that means the state doesn’t support us, we’ve had to struggle to find everything for our daughter, and I want the best for her, and the best sometimes means basic equipment like hoists, ramps and toileting facilities.

Being a carer can be made a whole lot easier by simple things, by providing services in the community so we can go out and enjoy things in the community. We’ve all heard about care being provided in the community instead of residential settings, but the community isn’t ready for that and we need to fight for the community to be open. I want my daughter to live with us in the community, but I need support for that – I am never going to drop my caring role until I die or her life is extinguished early, and all I’m asking is to be heard, to be seen, to be respected, to be provided with some level of dignity for the role that I do as a family carer, for my children to have dignity to be supported as siblings of someone who needs life long care.

My baby who is learning to walk, talk and climb has been watching me and I have a video of her spoon feeding her nearly 14 year old sister. That’s normal for her. But I don’t want her as an adult to feel any imposition that she has to look after her sister, I want to know that the State will support her to be just her sister.

Carers Week enables us to shine a light on carers’ roles, our needs, our aspirations, it gives us recognition for the selfless role we have on top of our roles as mothers and fathers, wives and husbands, brothers and sisters, sons and daughters.

My name is Lorraine Dempsey, I’ve been a carer for just over 13 years: see me, hear me, support me and value me.”

Her speech is here from 37 minutes.

 

My Sunday Photos: It’s Festival Time

Sunshine, live Rock ‘n Roll, dressing up, hot chips, cool ice-cream, vintage cars, stalls selling bric-a-brac and festival essentials (retro sunglasses for a fiver) and even beer if you bring your own. Just €10 to get in and all in a good cause. What’s not to like about the Rockin’ Road Festival? It’s Drumcondra’s answer to Electric Picnic. but without the crazy crowds and rip off prices. Especially brilliant when you have a disabled daughter who loves music, crowds and being out…

Louisiana 6
The Louisiana Six
view at the Rockin' Road Festival
You can even see the mountains!
S and B at the Rockin' Road Festival
B and a pal shootin the breeze 🙂

Sticking my old head in the sand and having fun doing it

I *may* have mentioned that I have a fairly scary birthday coming up soon, and I am in complete denial. I’m in fear that I may have to begin acting my age, wearing beige cardigans, and going to Neil Diamond concerts (not my thing, apologies if it’s yours). So if this post seems a little crazy, that’s why. I’m having a last hurrah, with the expectation of old age descending like a metal shutter some time next week…

In the meantime, I have all these reasons to be cheerful:

…My disabled and non-verbal daughter B clearly said ‘mum’. I don’t know if it was a word or just a sound but it was lovely to hear.

…Being asked if I was B’s sister at a communion party – it’s amazing what long hair and sunglasses can hide!

…The house now has two ramps for B, so she can enter and exit through the front door, like everyone else. And she’s enjoying it too.

…A flower in bloom, one I planted myself, and trained up a trellis that I put up myself, with the help of my eldest daughter and a drill.

Bloom, flower,, clematis, trellis.png

…Beating the kids at a fitness challenge at a local Family Fun Day, and B loving every minute of it.

Smiley, B, disabled daughter,

…Climbing the Wishing Tree on the top of the Hill of Tara to tie a wish for a friend, after much coffee, madness and cake…

If you enjoyed reading this, why not head over to Mummy from the Heart for more reasons to be cheerful.

 

On celebrating the saints and scroungers during Carers Week

Because that’s how the public sees us.

Every story about the selfless middle aged woman* caring for elderly parents and disabled children feeds into the saint narrative, which reaches its peak during Carers Week and the annual carers’ awards. And while I’m very happy for those who win and enjoy the accolade, there are carers like me who find the whole thing a bit patronising: it’s like society feels that all we need to keep going is an annual pat on the head.

No mention of real support, pay for the work we do, pension arrangements for when we are too old to care, or anything that really matters.

The rest of the year we’re painted as scroungers.

Of course keyboard warriors like me were blamed when Leo Varadkar (likely to be the next Irish PM) had to row back on his rhetoric about being a leader for people who get up early in the morning. He had to add in carers, and others. But the genie was already out of the bottle, as the above article shows, giving permission to portray carers as whingy costly parasites, so long as it’s not Carers Week.

I write about my life as a carer, and luckily the words pour out of me head like a torrent: I don’t have to sit down and wonder what to write, instead I find myself jotting down thoughts whenever I have a spare few seconds, often when I’m doing something else as well!

But it is hard to find the time or energy to write when you’re a carer, so there’s very few of us who do, but I’d like to introduce you to two friends of mine. Like me, neither will be attending of the events for carers during Carer’s Week. Because they can’t.

This week is Carer’s Week. There will be a wide variety of events across Ireland for carers to attend – lunches, coffee mornings, walks, pamper events with manicures and massages, nights out with music and dancing – all to celebrate and treat the much deserving carers. But, how many of the nation’s carers can attend? I can’t. I’m housebound while my son is bedridden. I have no one to relieve me so I can go to any of those events.I have no one to relieve me so I can go to any of those events.

Read more at Transitioning Angels

We’re back to no sleep. But with Luca I think he has constipation issues again, he’s back on movicol.

Emmy was supposed to go for a blood test today but no one up to the hour drive there and hour drive home and we’re still a bit under weather so I cancelled the appointment, all I seem to do lately is cancel appointment after appointment

We’ve reached the stage where we get no energy boost at all, just permanemt tiredness and feeling flat, the weather isn’t helping. 

I bought cbd capsules for myself during the week, they should be here today, can’t wait to get started as I’m in a shit heap, constant fibro flare and pains in stomoch from IBS.

Read more at the Spectrum Facebook Page.

Both write about the harsh realities of extreme caring in a world that doesn’t really want to know, doesn’t want to think about it, doesn’t want to imagine that it could happen to them too. Even though it could.

 

*The peak age for caring amongst women was 45–49, with 11.2% of women in this age group providing unpaid care, amounting to 572,680 hours of care every week, according to the 2011 census.

 

My Sunday Photos – a ramble up Killiney Hill

Killiney Hill is a local beauty spot and viewpoint in South County Dublin. From sea level it is a good climb, but there is a car park near the top, which is where this ramble began.

This is the first in a planned and agreed series of summer outings with one of my other children 😀.

Killiney Hill looking south 2
Looking south
Wild flowers on Killiney Hill
Wild Flowers
Scots Pines, Killiney Hill,
Scots Pines
Dublin, Killiney Hill, View, 2017
Dublin City

 

A Family Affair at the Mini Marathon

How to explain the Mini Marathon and why it’s so loved by so many women? After all, isn’t it just a 10K race that takes place every June Bank Holiday weekend through the streets of Dublin?

Yet it’s so much more than that.

For me the highlight is the countdown to the start, with the nervous smiles among the runners, the anticipation, the watches being checked, water bottles discarded, goosebumps from the strains of Sisters, are doing it for themselves, and knowing there’s 30,000 more women at your back.

The Start Line, Mini Marathon 2017,

You feel like you’re part of something.

And you are.

It’s the biggest women only race in the world and one of the biggest charity fundraisers in the Irish calendar.

I’ve probably told you before that I ran it many times in the past, until life got too complicated! And that my first attempt was in 1992 when I was 5 months pregnant with my eldest. This week she walked it pushing her disabled sister, with the help of a couple of friends. And despite the rain that set in as I finished and they reached half way, we all loved the experience.

For me, almost everything went right. I wasn’t feeling well, but with the help of a really fast course, I crossed the line in a very satisfying 57 minutes and 15 seconds. Which means I qualify to enter as a runner again next year. And if I can keep that up, I will do it every year (once I have someone to mind my disabled daughter – or push her round for me).

And having something special to look forward to every June from now on is my  reason to be cheerful for this week. Head over to Lakes Single Mum for more.

The Other Side Of The Wall – a book review I HAD to write

Disclosure: Andrea Mara, the author of The Other Side Of The Wall is a Facebook friend, but I paid for my Kindle download and I was not induced in any way to write this review.

The other side of the wall, psychological thriller, Andrea Mara, Office Mum.png

An exhausted mum of two young children thinks she sees something in her neighbour’s pond during the night shift. And so begins a chain of mystifying and worrying events, which tap into every woman’s fears about her children’s safety and her own, but the author of The Other Side Of The Wall handles them with a lightness of touch that means most readers should not get nightmares, unless you’ve got some very strange people living next door…

There’s a deserved buzz around this book, and even though I don’t usually read psychological thrillers, I was drawn to this one. Perhaps because its themes of motherhood, juggling, living in the suburbs, and worrying about the children are so universal.

The story has all the twists and turns that you’d expect and side plots including difficulties in the workplace, a young man with a troubled past, and a mysterious case of domestic abuse.

As a reader it feels as though she is telling the story to you alone, whispered confidentially in a quiet corner of a coffee shop in leafy south Dublin. It did not feel like a tentative first book by an aspiring writer, instead it has the confidence and sure touch of an established author.

I genuinely could not put down The Other Side Of The Wall, and I have the dark circles to prove it, from late nights when I had to read just one more chapter…

The pace kept up until the very last page. And left me wanting more.

—————–

The Other Side Of The Wall is available now in all good bookshops and from Amazon.

Author Andrea Mara is a mother of three and lives in Dublin. She also writes the award winning blog Office Mum.