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.