Maybe you can tell me why?

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Why are family carers expected to settle for crumbs when a majority of them are working more hours per week than typically-employed people?

Why are family carers thought of as ungrateful or greedy if they believe they deserve more than 10, 15 or even 20 days off per year, even though a typical worker gets 104 days off just in weekends alone, not including holiday time, sick time or national holidays?

Why are family carers considered by some people as ‘welfare scroungers’ when in fact the skilled work many carers do is nursing-level care which saves the State literally billions of euros every year?

Why are family carers left with no chance of earning credit toward a full pension, left only to scrape by day to day, trying to keep an extraordinarily expensive household with disability costs afloat on what equates to less than a euro an hour pay for their 24/7 work?

Why are family carers constantly having to fight for basic rights for themselves, as well as for their disabled loved ones, despite those rights supposedly being protected and enshrined in various conventions or laws?

Why are family carers forced to give up their careers and be relegated to poverty on meagre social welfare payments rather than full, proper services being provided for the disabled loved one which would thus enable the family carer to continue with their career, to continue being an active part of society, and to have the full life they indeed have a right to live?

Why are family carers allowed to continue struggling while their physical and/or mental health declines to such a point they can no longer care, or maybe even worse yet, no longer care about caring for themselves or their loved one?

Why are family carers left with no options but to provide the care work, even if they reach the point of burnout and breakdown and just don’t want to do it anymore?

Why do our politicians, who could so easily see the lives of family carers and their disabled family members change with the stroke of a pen pushed simply by political will, do nothing to change our desperate situations?

Why do our fellow members of society, who march in protest together in the thousands for other causes time after time after time, fall silent when it comes to the plight of carers and the disabled, even though one day odds are they too will be one or the other, if not both at different times of their lives?

Why do advocacy organisations ask for crumbs for carers rather than asking for what carers truly deserve and in fact need?

Why does anyone think any of this is in any way acceptable?

Maybe you can tell me why no one seems to care?

Flipping burgers at McDonalds pays four times more

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I’ve come to the conclusion that society as a whole simply doesn’t give a damn about the plight of carers like me. I include governments and politicians in that assessment. Because if society did care, there would be protests on the street helping advocate for our rights and indeed those of the disabled, incapacitated, family members we work around the clock to care for and keep out of hospitals (note: which in turn helps keep hospitals free for you and your family members).

I get half-rate Carers Allowance. I can’t get full rate because as a lone parent I get that social welfare payment. Let me stop at this point and say how humiliating and degrading I find it personally to be on welfare. I did not put myself through university to earn a BA and then a Master’s Degree, all while working full time, so I could give up my career and live in poverty on welfare.

I hate it.

But, back to my point. Half-rate Carer’s Allowance in Ireland is €109.50 per week. That is what I get paid to provide nursing-level, around the clock care to my profoundly disabled, medically fragile, life-limited teenage son who is now considered an adult.

€109.50 per week.

If I were to break that down to 40 hours a week of work – which by the way is completely unrealistic as it is literally 24/7 – that would equate to €2.73 per hour.

Let that sink in: €2.73 per hour.

Now consider the average starting pay at McDonald’s is €10.51 per hour. (see here)

My first job at 16 years of age was at a fast food place. Never in my life did I imagine that at nearly 56 years of age I’d be “earning” a fraction of that at this stage of my life. I’ll mention again the humiliation.

I have 17 years experience as a carer now and am a Certified Nursing Assistant (CNA). The work (and yes, it is WORK) I do every day is nursing-level work. End of. In hospital, it is only a nurse – or actually, two nurses – who are allowed to carry out the work I do at home…alone.

So let’s talk pay. I’ve written countless times about carers and pay, but it clearly needs said again: We work, we are drowning financially (and other ways) and we must be recognised with proper, fair, equitable remuneration.

There are a few ways this could happen, but the most ideal way in my opinion is to have carers like me, who provide nursing-level care, be trained and certified as Health Care Assistants, then employed by the HSE and paid a salary complete with the benefits package of any other HCA in a hospital setting. (This is the model program from Colorado where I was trained and certified as a CNA mentioned above). The starting salary here is €30,921 annually (see here). That breaks down to approximately €14.87 per hour for a 40 hour work week. Time for the reminder that carers like me “earn” €2.73 per hour for nursing-level work.

If carers were employed, not only would it provide more financial stability, but it would allow us to pay for necessities which we can’t currently afford, everything from hiring someone to mow the lawn because we can’t get to it, to house and vehicle repairs, to paying for the mental health counselling we need for the depression the majority of us are challenged with, to saving for our hoped for one day retirement years. And as employed people, we could apply for credit, for loans and build a more secure life for our families.

As it stands now, carers live in poverty, unable to do any of those things…which even someone flipping burgers at McDonald’s can far better afford to do.

I started this blog piece saying society, governments, and politicians don’t really give a damn about the plight of carers. I’ll end this piece by saying this: If that statement offends you, if you DO give a damn, then please help advocate on our behalf. Contact your local TD. Contact the relevant Ministers in government. Organise a protest (because so many of us carers can’t get the time away from caring work to do that). Share this piece on social media.

But please, if you do give a damn, do something.

26 August 2021: It’s been a long time coming

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Today I sent off my application for Irish citizenship. Having first moved here way back in 1995 (yeah, I’m old), it’s been a long time coming. But, here it is! Or rather, there it goes via registered post.

And now the anxious wait begins.

Preparing the final packet last night and this morning has me in a very reflective mood. For anyone who follows this blog or who knows me personally, it doesn’t take much for me to be reflective (you can stop laughing at me now).

Anyway, this morning my thoughts are with my Grandmother, Mae. She was the child of immigrants. English was the second language in her childhood home, not the first language. I wonder now, how did that shape her and, in turn, how did it shape my Mother, her daughter?

Being only a couple of generations from an immigrant, and being one myself, I then wonder how does that shape me as a parent and my sons as young adults in the world?

Surely it impacts our worldview, both in a smaller community context and the world at large.

And I think that is a good thing indeed.

My Mother had asked her mother to teach her the native language she grew up with, but my Grandmother told her no, you are to speak English. And so it was, my Mother never learned Norwegian. It’s taken years but I’m still trying to make up for that by learning the language of my Grandmother. After all, it’s never to late to learn new things, right?

So, here I am in Ireland, my closest relatives are those in Norway, I’ve just sent off my application for Irish citizenship, I’m learning and teaching my son Declan how to speak Norwegian while he also learns Irish and Spanish in school, and I’m reflecting on all of it; reflecting on my Grandmother and my Mother, both long passed away now and wondering what they would say to me about anything and everything? Like I said, a lot to reflect upon today.

What a day it is.

Me with a photo of min bestemor, my Grandmother, Mae

Could you work 24/7 for 17 years with less than 4 days off per year? Forget human rights. It’s your duty.

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I am a mother to two sons.
I am a nursing-level carer 24/7 to one son.
I am solely a mother to the other son.

For 17 years, I have been working around the clock – literally – to keep my son alive: to medically rescue him when he stops breathing in a seizure; to clear his airway when he’s choking; to carry out deep wound care; to monitor his vital signs daily; to watch emergency services…more times than I can count…rush in the room, bag him, take him away in the ambulance with lights and sirens on; to administer life saving medications multiple times a day, every day, for 17 years. And so much more.

I’ve said good bye to my son more than once as doctors told me he may not make it through the current illness or infection. I’ve signed DNRs and most recently, signed an advance directive so that all of the past 17 years of emergency interventions will no longer happen as his very fragile, beautiful but failing body continues to decline in health.

After 17 years of this high intensity, nursing-level caring, I am, without a shadow of a doubt, burnt out.

Last night I lay in bed thinking about the past 17 years, and indeed of the future. I thought of how it’s been so far and how I would dream of it being some day. Can dreams become reality, even after the past 17 years? Am I even allowed to dream? I don’t know.

I thought of how tired I am, which led me to wonder how many days/nights off of caring work I’ve actually had in 17 years. I added it up. The fact that it wasn’t that hard to figure out says much.

The first 10 years of Brendan Bjorn’s life, I had a total of 4 days off of caring duties…AND I SPENT ALL 4 IN HOSPITAL AFTER SURGERY.

Can you imagine working a job where you must be on constant high alert, around the clock, on call, ready to jump up and save a life, without any time off for 10 years? Seriously think about that: there are no weekends off, no holidays or vacations or bank holidays or such. Nothing. You are working or at least on call (ie: at night when trying to sleep) the entire time. Could you do it? (And note: this is part of the reason so many carers struggle with anxiety and depression.)

More numbers: in 17 years, I’ve had a total of 77 days off so far. 17 of those were while I was either in hospital or too sick to care for Brendan Bjorn so he got respite care.

That means I’ve had just 60 days/nights off of non-health related respite in 17 years.
LET THAT SINK IN.

That’s 3 + 1/2 days off of 24/7 nursing-level work a year. Work which has grown increasingly more and more complex and difficult as the years pass, mind you, unlike being a parent where a child grows more and more self-sufficient and independent. Being a carer as I am is not the same thing as being solely a parent. Not by a long shot.

I want to quit this job. I dread the work now most days. I’m bored, frustrated, exhausted, suffocating, feeling caged and as if my life has passed me by to a great extent the past 17 years. But, dear reader, do you know what? None of the above would ever have to be said or felt or occur if our societies and governments rallied around families like mine, around children/adults like Brendan Bjorn, so that we each could live the fullest life possible.

Think full nursing supports for a carer to continue with their professional career if that’s what they choose (oh, and that would add to the tax base for the society for those thinking fiscally). Think 2 weeks of overnight respite every month for children like Brendan Bjorn so that parent carers working 24/7 don’t get to the point I’m at and could continue caring work without collapsing. Think residential living communities which could medically, socially and holistically provide safe, loving homes for children like Brendan Bjorn as they enter adulthood and as the aging parent(s) no longer are able to, or frankly want to, provide the 24/7 intensive care.

This is what we as a society should be doing. Why aren’t we?

Maybe if politicians only got 3 + 1/2 days off of work per year, as I have, things would change.

A day of broken angels and an advance directive plan

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The morning started off with me discovering the item I had on the wall above the fireplace having fallen in the middle of the night, knocking down the Waterford Crystal piece that was sitting on the mantle, aptly named the “Angel of Hope”. Her hands, which were held outward together, had been broken off in the fall, shattering into countless tiny pieces and unable to be mended.

This afternoon, Brendan Bjorn had his last appointment with his Paediatrician in light of him turning 17 in just two month’s time. We also completed an Advance Directive Plan for him to restrict all medical emergency interventions.

It could be a story from a novel, but it’s not.
It’s simply my life today.
It’s Brendan Bjorn’s life today.

I’m not sure anyone can truly comprehend what this journey is like unless you’ve walked on this very same path. Decisions formalised today have been thought out long and hard, exploring every recess of my mind and heart in an attempt to reach the most reasonable, right, and loving decisions. The reason for an Advance Directive – or at least what is stated on his – is to promote dignity when it is his time to die.

Seeing those words in writing hits straight into my soul. There are no words to adequately describe the emotions felt. Still, I know it’s time to not prolong the many years of constant surgeries and treatments, the frequent illnesses resulting in hospitalisations, the multiple failed IV lines resulting in central lines, the intestinal failures and of course, all of the pain that goes with each challenge. He has been through more medical interventions than the majority of adults I’ve known in my life, and he’s only 16.

He deserves peace and dignity as he lives out the remaining days, months, maybe even years, of his journey, however long it may be.

I’ve often said Brendan Bjorn is the happiest, most loving soul I know, and indeed he is. He is my angel. Our angel. And unlike the Waterford Crystal angel that fell and shattered her outstretched hands, Brendan Bjorn will always be whole in my eyes. He will always be perfectly who he was meant to be, teaching us all of the lessons he is here to teach us. And I have no doubt that in his death some day and when he becomes the angel watching over us, the lessons will still be taught, for that is the gift that my son is to me, to our little family, and to those who choose to see what his journey has so beautifully offered.

It’s been a long, emotionally draining day. I’m exhausted and, truth be told, I wish I could be held in someone’s comforting arms this evening to give me just a moment of tranquillity, forget the day, and like the now-shattered Angel of Hope, provide me with a glimpse of hope.

I look up and see the angel on the mantle, no longer perfect. That’s ok. Her new imperfection will serve as a reminder for the day it is and what it means for this journey.

The carer’s clipped wings

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A golden eagle soared high over the canyons of red rock and the mountains with pine forests stretching to the sky, her spirit lifting in the breeze.

A parakeet with wings clipped, she battered her body against the confining walls of the cage in a desperate attempt to escape.

The cage door unlocked, she flew to the pine covered mountains and her spirit was unleashed. She caught a glimpse, or a memory, of what it was like to fly high amongst the beauty she knew once upon a time when she was free.

She was returned to her cage, the duty of being bound by wings not allowed to fly.

And now, the cage is even more confining than before, as she yearns to be free once again, to soar with wings unclipped.

Creating too much noise, the cloth was placed over the parakeet’s cage, and in the dark, surrounded by bars, she grew silent as her spirit went back to sleep, dreaming of becoming an eagle once again…

Dreaming of unclipped wings.

10 minutes, 9 years ago, 10 minutes today.

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I was talking to a friend/fellow carer the other day. She understands where I’m at emotionally as a carer. She said something that has stayed with me. She said that whenever she sees me write about being exhausted and wanting to give up as a carer, she thinks of this photo and how once I had – even for those brief 10 minutes – the ear of one of the most powerful men in the world (no comments re: politics, please) and was running a national charity foundation in America.

Now, just 9 years later, I can’t get 10 minutes with anyone who can make a difference here in Ireland and I do nothing other than exist as a carer behind closed doors, unseen, trying to make if from one day to the next working around the clock providing nursing-level care that I know I can’t keep doing on my own for much longer.

So yes, I’ve been thinking a lot about what she said. This journey changes a person in a lot of ways. One of the ways is how we see ourselves as carers. For me, these last number of years have really drained my sense of self-worth, self-confidence, or the feelings of contributing to the greater good that I may have once had; that sense of self and identity which comes with fulfilling work, whatever it may be.

To be left now constantly fighting for the slightest of crumbs and to be heard is soul-destroying. It can also make one question what is their value.

I’m trying to rediscover that sense of self-worth, that confidence in who I am as a person – not just as an invisible, forgotten carer. But, it’s hard…damn hard…when the years have repeatedly brought battles which knock you down time and time again.

Too many politicians feign interest and concern. Frankly, so do many activists who claim to care about human rights. Where are they when it comes to the profoundly disabled and their carers? They are nowhere to be found.

As I sit here tonight waiting for Brendan Bjorn’s feeding pump to finish its course so I can begin his nightly medicines routine, I type this quick blog realising it will likely be read only by those who are also carers. Like many aspects of this journey after 17 years, maybe it’s nearing time for me to stop fighting so hard for politicians to hear our plight in hopes of affecting change. Maybe it’s time to just focus on a new journey to rediscover myself, and indeed to build myself back up as a person outside of my caring role.

Just maybe, it is time.

Perfect timing. Brendan’s feeding pump just began beeping and the caring work continues.

That was a quick 10 minutes.

Disrespecting and Discarding the Profoundly Disabled and those who work caring for them

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I’m not one to mince words, so I won’t start now. If society and the elected governments genuinely thought profoundly disabled people and those who work caring for them were of equal value, I wouldn’t have to write this blog. I wouldn’t have to ask…strike that…beg for help at times. I would be able to live, not just exist. I would be healthy, physically and emotionally. My younger son would have a much fuller life than the one he’s had to consistently sacrifice in his short 13 years, and continues to do so.

That is it in a nutshell.
Society, as a whole, doesn’t value people like my son nor me as his full time carer.
Full stop.

I’ve written for years providing alternative methods to financially and holistically support family carers. It has gone nowhere, other than garnering support of fellow carers. Even the one and only carers association in Ireland hasn’t engaged. I’ll say this: Things will never change if we aren’t willing to think outside of the box, beyond the status quo, and be open to possible solutions which have been proven successful elsewhere in the world.

Ireland, you need to wake up when it comes to family carers.
Full stop, again.

The work I do literally keeps Brendan Bjorn alive on a daily basis. The work I do is nursing work, to be clear, for example: constituting life-saving medications, measuring correct dosages, administration of medications; open wound cleaning, care and dressing; clearing the airway; seizure rescue; administering oxygen; PEG replacements; and so very much more.

If I was considered (let’s make that valued and respected) as a nurse, I would have days off, holiday time, a pension accruing, and a salary commensurate with the skilled, intensive work that I perform on a daily basis.

But I, and other carers like me, are not valued or respected in this way.
Full stop, yet again.

Let’s consider an average worker who works 5 days a week and an average of say 8 hours per day, with 2 days off which are usually the weekend. That’s 104 “weekend” days off per year. Now let’s consider Ireland’s employee entitlements for annual leave. That is 4 weeks paid time off per year. ( See here ) We are now up to 124 days off annually without even mentioning bank holidays.

Now let’s look at a family carer in my situation. There are no weekends off; it’s 7 days work per week. There is no annual leave, let alone paid, so forget those 4 weeks. As for bank holidays, what are they? Did I also mention that there is no clocking out of work after an 8 or even a 10 or 12 hour nursing shift? Nope. No time clock here.

So, when last week I saw the family carers association mention on social media that they were lobbying for a statutory 20 days of respite per year for family carers, I felt a range of emotion – and none of them were positive. 20 days off in a year of providing 24/7 nursing-level care is shameful. In my opinion, that is actually abusing carers and it’s certainly not respecting or valuing carers.

If you, dear reader, need more convincing, think of it this way:

20 days off per year is 480 hours off of work per year. You will be working the other 8,280 hours of the year. Day and night. Nursing-level care on a very medically fragile, profoundly disabled individual. You can also think of it as 1 & 1/2 days off per month. The rest of the month is working, and yes, remember that is around the clock, 24 hour per day.

Should I again mention that this is without any pay or hope of pension?

Considering all of the above, is it any wonder that I wrote my last blog piece (see here) saying that I’m ready to stop caring now?

Just imagine, if carers had the same employment rights as everyone else – the 2 days off per week, the 4 weeks off per year, the help so not to have to work around the clock, the financial security, etc –
we might just not get to the point of giving up.

It will take society and government truly valuing and respecting the profoundly disabled
and the highly skilled work we do for them as their carers.

I hope those with the power to make changes will truly hear this message.

When a Carer considers no longer Caring

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As I type this difficult blog piece, it is a quiet Tuesday morning. My youngest son is still soundly asleep in the comfort of his bed. My eldest son, Brendan Bjorn, is in Dublin for a few nights at the only Children’s Hospice in Ireland. He’s there on a “crisis admission” so I can have some respite. I look at that word, crisis, and my first thought is that it’s too dramatic. In fact, it isn’t, for how else are we to describe that point of exhaustion after 17 years of lone parent, nursing-level caring, when the carer says aloud, I don’t want to do this anymore?

It is indeed a crisis.

I wrestle with not wanting to do this anymore to feeling like I simply can’t do this anymore. I’m not really sure which one it is. I only know that I am exhausted, my body is aching, my mind is weary and my spirit sees the point of either breaking or being free again to be what it could be, or should be, to live fully; not merely exist as a carer working around the clock with no end in sight.

Is there an end in sight? When is it? There is no answer.

Brendan Bjorn has, since my last blog piece, had his formula feeds slowed even further, his gut unable to handle what it was even a few weeks ago. He’s now down to 40mls per hour. I’ve spoken with the relevant members of his healthcare team and disability team. I’ve asked for an advanced directive to be written up now, before he might turn 18 in just 15 months time. It needs to be done while I’m thinking from a place of logic, not emotion. My precious, beautiful son has been through so very many struggles on his journey. He doesn’t deserve to go through any more of them. He deserves quality, comfort and to simply be surrounded by love – not invasive interventions or pain or yet even more operations.

No, he’s had enough done to him to prolong life. Now is about peace and comfort.

Until that time comes…whenever it may come…I must also consider myself. How can I carry on this work? For how long can I continue? I’m taking this time to reflect and consider as well as attempting to relax and remember myself.

When Brendan Bjorn turns 18 in 15 months (that is, if his journey is meant to go until then), he will lose the respite at the Children’s Hospice. He will also lose his Special Needs School. Currently, those are the only two places which give me some reprieve while he is in either setting.

What happens when he turns 18 and there is no place for him to go? What will happen to me?

These are not selfish questions. I’ve come far enough on this journey now to accept that these are necessary questions. Mind you, it’s taken me awhile to get to this realisation. If I don’t ask them, no one else will. And if I don’t take care of myself, no one will be there to take care of Brendan Bjorn. I can’t allow that to happen.

This point of fact is what the government and related disability sector services don’t seem to realise. Maybe they do realise it, but just don’t care. I’m afraid I think it’s the latter.

But I do care. I must be proactive and figure out what I can do – and indeed what I can no longer do – then see what can be done. I’m at a point in this journey where I would actually consider residential community living for Brendan Bjorn if such a place in Ireland existed. The government seems hellbent on closing them all down, which is a complete disservice to families such as mine. (Search the fight that St. Mary’s of the Angels has had to undertake to remain open)

If, God forbid, I died tomorrow, the government plan would be to put my son in a nursing home which is the worst solution possible. Who ever thought that would be a good idea? It terrifies me, which is one reason I’m now going to actively seek a sensible, compassionate, appropriate solution to the “what if” and “when I can no longer care” questions.

There has long been a saying amongst the special needs community of the world who have had to fight tooth and nail for the supports they and their severely disabled child require. I’ll end this blog piece with that quote. Some of you may understand. Some of you won’t and may find it shocking. Let me just say, none of us should ever have to say this – but we do. We do so because we know that so often, there is tragically no place for our special children to go if we can no longer care for them. Let that sink in.

“May I live at least one day longer than my child with special needs”

photo by Tracy McGinnis

Carer’s Week 2021

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It’s that time of the year again. Carer’s Week in Ireland and the UK. Or, as many of my carer friends here and there prefer to call it: Real Carer’s Week. This is the week we take to social media and share what it is REALLY like to be a carer.

You know, the non-patronising, cold hard facts of the struggles we face which the media and even carer related NGOs like to gloss over.

So to “celebrate” Carer’s Week, I’ll use this blog to just list some of those hard to digest facts as they pertain to my individual life as a carer.

  • I’ll be 56 later this year and my profoundly disabled son, Brendan Bjorn, will be 17. He’s a man now and I’m an aging woman whose body has taken the brunt of caring duties for the past 17 years as a lone parent. It’s left me with degenerative discs in my back, pain, and other health issues.
  • I’ve had to give up a professional career I loved, lost my pension, lost my financial security, lost my sense of self-worth, lost my freedom to be an individual outside of the role of being a full time carer.
  • As a lone parent carer, I provide around the clock nursing-level care which in any other setting it is required that TWO people provide said care, one of whom must be a nurse. My son’s care is that complex. Despite this fact, and despite carers in Ireland save the State literally billions of euro annually, there is no respite care provided for me other than that of a charity 15 nights per year (less with the pandemic). Hear this: my son is too complex to receive care at the regional respite centre. You really couldn’t make it up, could you?
  • To repeat myself, despite the fact that carers in Ireland save the State literally billions of euro annually by the care we provide, Carer’s Allowance (if you qualify – it is means tested and you must prove you WORK full time provided care) is at the poverty level. Do I really need to point out, again, that disability comes with many additional financial costs to a household?
  • My son is life-limited. I spend each day, month, year, never knowing when that day will come when all my efforts to keep him healthy, happy, and alive, will be in vain. Once that happens, I (and many other carers, to be sure) will fall off that financial cliff, cut off from the meagre social welfare, while grieving and having been out of the workforce for countless years, and be required to somehow magically keep afloat. It’s a thought never far from my mind.
  • Carer’s Week and platitudes. Please stop with the figurative pats on the back, the words of being a hero and the backbone of society. Actions speak louder than words. Always. So, let’s see some action, dear politicians, to back up those words which are said once a year during this week.
  • Lastly, please DO NOT FORGET the older disabled children and/or adults who are being cared for by a parent or spouse when highlighting the plight of carers! It may not be as visually appealing in media as a cute 5 year old child, but let me assure you, the work of caring becomes much, much harder the larger the child becomes. Feature that in your media presentations for once.

To my fellow carer friends in Ireland and the UK this week, I say this: I am so very thankful to know you, to be empowered by you, to share (virtually) tears of our journeys and the small joys as well. Wishing you strength to get through not just this REAL Carer’s Week, but the year ahead. Thank you for your solidarity and love.