It has been 7 years since I worked outside of the home. It has been 10 years since I worked in my profession as a Child and Family therapist. And I can’t tell you how much longer it will be…if ever again. Instead, I am home 24/7 caring for my beautiful son Brendan Bjorn, who is now 13 years old, severely disabled with profound care needs and has a life-limiting condition. That is my job. Clarification: My unpaid job with no security and no opportunity for financial stability in the years to come.
Today, as I drove back to our newly acquired rental home in Co. Louth after collecting Brendan Bjorn from respite in Dublin, I did a lot of thinking. The title of this blog came to me as I was driving, in fact, as I was trying to put into words how I feel today. Alas, the title of this blog is what it is. Being a lone parent carer 24/7, especially considering today is day 106 of Brendan being bedridden with this terrible pressure sore that won’t seem to heal, is its own form of prison. Not just prison, but solitary confinement.
My mind wandered even more the further we drove. The film Notting Hill came to my mind. It’s not the romantic part of the film I was thinking about, though, before you all think I am total sap (which may in fact be true anyway). Instead, I was thinking about why that is one of my favourite “feel good” films to watch – the friendship amongst the characters in the film. There’s one particular scene that came to mind where Julia Roberts’ character is invited over to dinner by Hugh Grant’s character. They are sitting around the dinner table – all of the new and old friends – talking, laughing, joking with one another, and there’s even a serious moment or two. I smile just thinking of it.
THAT is what I desperately miss – the camaraderie of friends, the joy of sitting around a dinner table and just being together.
THAT is the silence of solitary confinement I find most difficult on this journey of being a full time, lone parent carer.
Last week, I had the pleasure of being on the Echo Chamber Podcast to talk about all things carer. As I listened back to myself speaking, my ever self-critical internal voice cringed. “God…I used to be a much more fluid public speaker” said that voice. And it’s true. Solitary confinement can do that to a carer because we can go literally days on end without speaking to another adult, never mind the kind of conversing had where your intellect is actually stimulated to a level it has long forgotten.
THAT is also what I desperately miss – vibrant, verbal conversations that stretch your mind in ways nothing else can.
THAT is the silence of solitary confinement which, as time goes on, slowly hides away your former self, leaving you to wonder if it will ever been seen again.
Brendan Bjorn is back in his bed here at home now as I type out these fairly random thoughts. My other son, Declan, will be home in just over an hour. Time to get busy. Tomorrow, there will be a meeting here at my house between the new disability team and the previous one. Yes, yes, I will have adults to talk to then. But I just want to talk about something other than caring, at least once in awhile.