I don’t want to be in the press or on social media anymore. I don’t want to be publicly pleading for services, human rights, treatments for my son, awareness of this or that…or for anything, to be honest. But, I know the power of the press and social media, so until I am finally done being a carer, I’ll have to remain.
But to be clear, I don’t want to be. In fact, there are a lot of things I don’t want to do anymore. And there are a lot of things I do want to do, but can’t, because I am trapped in this role I can no longer tolerate…the role which I have no choice but to do, it seems, despite the chronic pain of arthritis and degenerative discs; despite the high cholesterol and being overweight, both which can lead to a terrible outcome; despite the depression and anxiety and related medication that I wish I could stop.
I’ve spent the past 17 years in the public ‘limelight’, via national and local press, both in the US and in Ireland, advocating for all of the above concerns, all related to my son’s numerous conditions and my role as his carer. I’ve no interest in it anymore. Zero. I’ve done my bit, so to speak.
When my caring role is done, I simply want to fade away from any press or social media, and just live out a quiet, simple life focused on what is before me. Watch my younger son grow into the man he can become and leave the nest to soar on his own. Maybe finish those books I began writing ages ago. Maybe take those long dreamt of trips on my bucket list. Maybe spend my latter years quietly soaking up some peace and beauty tucked away on a spot of land far away from what life is like presently.
Tears roll down my face as I type that, thinking of what could be and terrified it may never be.
The pandemic has tipped me over the edge of that caring abyss which many of us as carers try to keep our balance on every single day.
I’ve been a lone parent carer to my beloved firstborn son, Brendan Bjorn, for nearly two decades. And when I look ahead for my own life, it’s about that same amount of time I figure I have left in good years. About 20 years. I’ll be 56 next month. My mother died when she was 60. Her mother died when she was 67. And yes, that scares the absolute crap out of me. That, and knowing I have a young 13 year old son who needs more from me now than ever before. I must take care of myself now, with my own numerous health conditions, or I likely won’t be there for him for very long.
So, now what?
Four months ago I wrote to Brendan Bjorn’s disability team telling them I was breaking and I asked for what I needed. I was met with a very matter-of-fact letter stating there are no services presently – talk of waitlists, talk of future reviews. As I tend to do, I didn’t let it drop and replied with more direct questions asking why there were no available services and reiterated my plea for help. It went nowhere. Nowhere, that is, until the social worker came to see me. The result was a wonderful 5-page letter supporting all I had requested. As well, there were letters of support from his school nurses and principal and from his paediatrician.
Those that see what I do daily understand and don’t know how I do it.
Those sitting behind their desks can’t even begin to imagine.
Again, now what? I don’t know actually. More waiting. More breaking down. More worry about what happens if (or more accurately, when) I am to the point of not being able to keep going on caring. The point of where I am broken beyond repair.
Why are carers be left to get to this point?
Because those with the power to reform needed services don’t care enough to do so. There isn’t the political will. Simple as.