Today, in the midst of Carer’s Week, I sit down to write this article after having just administered my profoundly disabled son’s 7 medications for the morning, writes Tracy, as part of Wexford Weekly’s new Carer’s Column…
He’ll get another round of the same medications this evening. These are the medications that keep him alive; keep his intractable epilepsy from being completely out of control.
I have a confession to make: I didn’t watch Part Two of RTE’s Unsung Heroes program about carers like me. I watched the first one and ended up sobbing. I wasn’t going to put myself through that again. At the heart of the crying was something you, the reader, might not expect, but it’s the unvarnished truth: I cried because watching the program only reminded me that I’m amongst that segment of carers who aren’t free enough to participate in such activities. No respite. No family to care for our loved one which would allow us to attend the choir practice and performances. Nothing.
So, I sat there last week, crying, wishing I could be free.
This morning on Twitter I wrote: “I wish I could go for a walk every day. Is that too much to wish for? That’s #RealCarersWeek for you. I’m not a hero. I’m just a #carer during #CarersWeek who is trapped in the home trying to keep my head above the murky waters of depression, anxiety and isolation.
That summed it up in one short tweet.
My concern about Carer’s Week, and the platitudes carers receive one week a year, is that non-carers aren’t really listening to that desperation which goes on behind our closed doors. The government, if they are actually listening, is choosing to ignore our pleas. The public, watching programs such as Unsung Heroes, cry and sympathise for the hour long viewing, but generally speaking, that is where it ends.
So what needs to be done?
Here’s what I want everyone who watched Unsung Heroes and had their heartstrings tugged on to consider. Here’s what I want the politicians to act upon. Here’s why I want everyone interested in Human Rights and Worker’s Rights to join in advocating for reforms for carers and their disabled family members.
There is a cohort of workers who are forced to work without pay, often around the clock, often with no assistance. These workers aren’t even building up a pension for retirement…if they even live to see retirement years, that is.
These workers do have an option to leave this job, but it would literally require them to give up one of their children or their spouse to be free to live a life apart from this unpaid, constant work.
Can you imagine that being the only choice?
These workers must perform their duties full time if they are to get any financial assistance from the government, and even if they do that work, they may not receive that (very meager) assistance if they have a working spouse or a decent savings to fall back upon.
These workers go days, weeks, sometimes even months without seeing their peers, without having interaction apart from the job they do often 24/7. Their own physical and emotional health slowly eroding as the years of work continue.
Are you still with me?
These workers are family carers.
In Ireland, we save the state approximately €10 billion annually by providing this care v. if we decide not to provide it and instead put our loved one in residential care (that is, IF it is even available). For many of us, for many reasons, the latter isn’t an option.
This is Carer’s Week. Or as many of us carers call it, Real Carer’s Week.
When you advocate for a better society, please remember those workers who are hidden away behind their doors, often silent, always exhausted, and usually ignored by the government.
We don’t need platitudes, and we definitely don’t need platitudes for one week a year.
What we need are reforms.
More services to support our work, both in home and out of the home. Respite services. Day services. A fair living wage that gives us the ability to have credit, the ability to apply for home and vehicle loans, all while we have a pension accruing. We need more disability suitable housing, both social and private. Timely access to required equipment and care.
We need mental health services made available to all family carers, including home based services as many carers are unable to avail of these services outside of the home because of their full time caring work. We need wraparound palliative care for the entire family.
This is just for starters. We need many things, for what we give 24/7 is so much more.
We aren’t unbreakable. We aren’t superheroes. We are human beings who are being exploited because we LOVE and CARE. It’s time for it to change.
I am the mother to 2 amazing boys: Declan who is 12 and Brendan Bjorn who is 15. Brendan Bjorn was born with severe brain damage as a result of congenital CMV (cytomegalovirus) which has left him profoundly disabled, medically fragile and with a life-limiting condition. I write about our journey together and I advocate for Carer’s Rights and Disability Rights. I am a Co-founder of Profound Ireland.