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


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.

One thought on “Disrespecting and Discarding the Profoundly Disabled and those who work caring for them

  1. Deirdre

    Tracey , I hear you , every word the truth , but unfortunately I think we see day in day out that our government only does the right thing when it is brought kicking & screaming to the courthouse steps or mutters some token words if empathy when there is a scandal or tragedy. Keep writing your beautiful articulate words & may you all stay strong & Well, bonded together with love .

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