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.