Caregiver Burnout and Caregiver Self-Care
A Rant. Along the lines of "Oh for gawdsakes, just shut the hell up!"
When I spoke at the Alzheimer's Foundation of America's 2019 Educating America Tour conference in Portland, Oregon earlier this summer, I was asked a follow-up question: "How do you avoid caregiver burnout?" My answer was instantaneous and definite:
I probably should have thought that one through before I deflated the hopeful faces of about 300 caregivers and dementia folks looking up at me for guidance, but I'm new to the speaking-engagement game, and clearly need to work on my off-the-cuff responses to queries I have not planned for.
I stumbled through some explanation of what I meant, not wanting the attendees to file out filled with pessimism about their care partner future, but it was pretty lame. Since then I've thought a lot about that instinctive response, and what I really intended to convey about the yin and yang topics of caregiver burnout and caregiver self-care.
Oh, and I made a bunch of memes.
First of all, in case you were wondering by the tone of this piece so far, let me put your mind at ease -
I'm all for caregiver self-care. I think it a smashing concept, bound to be a world-wide phenomenon if any caregivers ever have the time to put it into practice.
But when you're in the thick of things desperately attempting to fulfill the never-ending needs of a dementia person, caregiver self-care becomes just one more thing you don't have time to do.
Have you ever thought "I'm thirsty. I'll just finish rinsing these veggies then get a glass of water before fixing dinner."
Forty-five minutes later you've redirected your dementia person from blowing their nose on the cat, 409'd their spit off the sliding glass door, gave out numerous hugs, poured them a glass of water, spent ten minutes attempting to administer a spoonful of children's ibuprofen because it looks like their back is aching again, discretely checked every time they've been out of sight to see if a bathroom break is imminent, saved the dog from being picked up by his ears, have repeatedly restarted rinsing off the veggies, and suddenly realize you still have not poured yourself a glass of water!
Okay, now drop everything and go have a manicure - knowing full well no one else will pick up where you left off.
Yeah, it feels like that.
So, it's not self-care I'm against, it's the constant reminders to do so with little to no understanding of what it takes to make it happen.
As caregivers we already know if we aren't healthy we can't do our jobs, we already know if we aren't rested we can't be our best for our loved ones, we already know if we can't get our needs fulfilled we're handicapping ourselves of any chance to successfully fulfill the needs of our dementia people. We aren't stupid, we're EXHAUSTED.
The last time someone said to me, "Don't forget to give yourself permission for self-care!" I fantasized about sharpening the end of that sentence and ramming it right back down their throats. Instead I gave 'em a frozen Pan Am smile and went on my not-so-merry way.
As caregivers we do our best to snatch moments to ourselves. When our dementia loved one finally goes to bed, and miraculously stays there, that is often our only opportunity for freedom. Early on in my caregiver journey I read that deep breathing exercises were good stress relievers - I totally do that! With a healthy pour of wine in one hand and a cigarette in the other. An hour later I'm remarkably relaxed.
There have been times in our Stumped Town Dementia adventures where I've been able to practice substantial amounts of self-care (well... my alcohol and nicotine fueled version of it), and desert-like stretches of time where there's been no self-care oasis in sight, and I can tell you: caregiver burnout happens in both.
Early in life I specifically looked at nurturing careers and dismissed them as not my strong suit, but when Mom was diagnosed with dementia I immediately made the choice to assist Dad in her future care. Then Dad died, Mom needed us. The "future" was NOW. The Other Girl and I showed up. We didn't even question it.
But it doesn't come naturally to focus all my happiness on averting another's sorrow, to center my day around another's desperate need for comfort and compassion, to bend my will to another's disease. I suspect it's the same for the majority of family caregivers; this is a job we want to do for our loved ones, this is a job we are doing for our loved ones, this is a job we burn out on fast, frequently, then pull whatever version of self-care we can muster out of our asses, and get back into the fray.
What I've discovered in my journey is that caregiver self-care has not prevented caregiver burnout.
However, it has not stopped me from being a good caregiver. In fact, it's helped.
It serves as the roadblock that forces me to work in self-care before moving forward. It is the barricade that makes me pause, reassess what's not working and identify improvements to implement. It is the stop light that won't turn green until I've managed some self-correction.
It's a part of the journey that I always survive, grow from, and soldier on with a little more wisdom and caregiver courage then before.
So, caregiver self-care? Yeah, I'll get around to it, but in the meantime, for gawdsakes, just shut the hell up about it! Can't you see I'm working up an epic caregiver burnout first?