At the risk of receiving a boatload of backlash for being negative, I’m going to be completely honest.
While I make every effort to share the good and difficult parts about being a lifelong caregiver to my adult son with severe, nonverbal autism, sometimes the tough times stick around longer than I’d like and make it impossible to just slap on a smile and move forward.
During every challenging moment, I try to maintain a positive mindset by attempting to identify the teachable moment or look at all angles and perspectives. Telling myself, this too shall pass right?
Well, during this season of my life, it seems there are no obvious silver linings and things have become so overwhelming that even my minimal level of patience has deserted me.
My son’s Crohn’s disease has been in flare mode for a solid 6 months with no relief in sight. We’ve changed medications, given him countless suppositories, enemas, and bowel cleanouts with no success.
His most recent bout of constipation lasted for 9 straight days!
He’s suffering . . . and WE are suffering. It absolutely kills me that I can’t take his pain away and fix this for him.
“You’re the strongest person I know,” is a phrase I hear literally every day.
I take the intended compliment in stride, smile and say thank you even though I feel deep down that most days lately, I’m at my breaking point. I feel like running away.
I’m exhausted.
I’m stressed.
I’m angry.
I’m afraid.
Fighting for my son’s rights for the past 20 years – to have an education, to be included, to have his medical issues properly addressed, for his nonverbal communication to be recognized and to have a future full of opportunity, among countless other battles, has taken its toll.
Although I thought I was appropriately managing my own physical and mental health, my body is indicating that I’m failing at that too.
Over the last few years, I’ve experienced random medical issues – shingles, countless kidney stones and now significant hair loss (Telogen Effluvium).
Every single one was a result of stress with the medical advice being, “You have to reduce the level of stress you are carrying. Your body is warning you that it can’t take much more.”
I feel like screaming, “Really? How exactly do you suggest I do that? Perhaps I’ll just call the respite hotline and they’ll send someone right over.”
Okay, I’m being snarky, but most of us know that handing over the caregiving duties to someone else is next to impossible. So, here we are.
I’m not sleeping more than 4 hours a night, concerns about the countless ‘what ifs’ of the aging out process and future always on loop in my mind.
Will he be surrounded by supportive people who encourage and love him when I’m gone?
Will he finally make some friends who make him giggle and smile like we do?
Will he be able to clearly communicate on his own behalf his desires, needs and feelings to every person he encounters?
Will he live a long, pain-free life where his Crohn’s Disease is no longer a burden?
As caregivers, we take on SO MANY extra responsibilities and uncertainties while simultaneously worrying and pre-planning for potential issues and concerns 5-10 years down the road.
If not us, then who?
Who else will tolerate being the target of his frustration and aggression, trying to not take it personally?
Who else will fight for his life to be recognized as valuable, worthy of resources and respect?
Who else will sacrifice their retirement plans, finances and having a social life to ensure my son has the best chance at a meaningful future surrounded by love and kindness?
I wish I could rely on a psychic reading or crystal ball that reveals everything will work out perfectly, so I don’t have to spend another moment of my life in panic mode. But that’s just not reality.
I don’t need a prize, medal or declaration that I’m doing a fantastic job as a lifelong caregiver, a role no one would willingly apply for no matter how much it paid. What I do need is for the system to change.
None of us are built to withstand this level of stress and exhaustion without any help.
Sadly, our kids need us to live forever, but at the rate we are mentally and physically burning out, we will soon need caregivers for ourselves.
