24. Hugs and Eggs
August 30, 2022
EGG!
This is not a demand for breakfast.
This is one of my son’s latest warning words – like banana, channel, or bug-bee – that give me a heads up that we’re heading into irritation-territory.
My son’s moods are hugely unpredictable.
From one day (or hour) to the next, I could be writing a different description of life within these walls.
Sometimes his voice is happy as he repeats, “Cows and Pig on the farm” or “Don’t touch the cactus.”
But in a minute, his voice becomes tense and tearful, the words twisting with a sinister vibe: “Cows and STOP on the farm” “CACtus-CACtus.” “Knock it off-stop it-stop it-right now-EGG!”
This past month, he’s been doing so well trying new experiences, new foods, new skills.
And, he’s cranky on and off every day.
I don’t understand the mechanics beneath his changing moods. Is it related to being locked in his own head, not able to say what’s on his mind? Or is it some other kind of chronic discomfort?
I watch for underlying medical causes; suspect loneliness or boredom or anxiety; worry over lack of good sleep, proper nutrition, and exercise; wonder whether to make adjustments to his meds or activities or diet.
I don’t always know how to help him.
He doesn’t yet have the skills to control his anxiety, so it dumps out across our house, manifesting in stomping feet and muttered “curse” words and slamming doors and perseverations over the placement of the faucet, the condiments, the paper towels, our glasses, phones, and shoes.
It can be exhausting to live with.
We used to love watching the sitcom Everybody Loves Raymond. There’s a great scene (in season 4, episode 22 “Bad Mood Rising”) where Ray’s wife Debra has been in PMS-mode – emotional and with zero filter for her reactions to her husband’s many offenses. The couple is arguing after he foolishly attempts to tape record her rants – she is upset by his lack of empathy; he is frustrated by her mood swings.
Ray desperately asks what he is supposed to do. She screeches, Have you ever thought about giving me a hug!!Ray is stunned. A HUG?!?...Look, this is not huggable!
“Bad Mood Rising” - Everybody Loves Raymond, season 4, episode 22
(The scene is at about 13:00 on this clip, but watch the whole episode if you can, Patricia Heaton is fantastic.)
Our son doesn’t want a physical hug when he’s in pain or struggling.
But he sure needs compassion. Even (or especially) in his most pissy state.
I know he doesn’t want to feel irritated or imbalanced. He would also rather see those cows and pigs happy on the farm.
And still, his over-the-top reactions to his own discomfort make it very hard to help him.
I hear myself using a stern voice when I should be modeling calm.
My exasperated tone echoes and amplifies his distress.
I remind him to breathe…and remind myself to step out.
I’m with Ray when he pleads, “What do you want me to do?Tell me what to do?!?”
They say that compassion is felt most strongly if a person believes they are capable of helping. The longer you go when your efforts don’t help – or if the problem is too big for you to make an impact – human beings instinctively begin to step away.
Compassion fatigue is real, and impacts even those who care for their own loved ones.
I’m certainly feeling some fatigue.
I’m tired of tracking behaviors that do not seem to have clear patterns – no matter how much data I collect on what he eats, how he sleeps, his activity, changes in our routines or even the weather.
Tired of strategizing for every outing, every meal, every skill-building lesson and having those plans only work intermittently.
Tired of taking the blows of his agitation when I’m just trying to cook his dinner.
I’m tired of not being able to kiss or console my child.
I know, of course, that he is doing better, and we have been able to help him.
We’ve worked hard to create this home with enough space for him and us. We have family and friends who love him, and wonderful programs that welcome him, no matter his mood.
He does show contentedness in between those grumbling curse words. His outbursts are far milder than they used to be. And he is enjoying the fitness, social, and music lessons we’ve been able to find for him.
I remind myself of all these very good things, and I check in on my own nutrition, exercise, and all those healthy coping skills that I am always harping on my son about.
But in the kitchen yesterday, I was listening to a podcast and taking notes like “catch yourself before you judge someone else’s behavior” and “compassion comes one breath at a time” and “we belong to each other” – and I turned and snapped at my son for interrupting me with his repetitive perseverations.
Compassionate caregiving is necessary and hard work.
I’ve got some more practicing to do.
If you’re a caregiver, or know someone who is, here are a few places I’ve found that offer support to those who are caring for family members. If you know of others, please drop a comment or respond with an email, I’d love to know about them and to update this list.
Care 4 the Caregivers (Arizona)
The Lucas Project (Michigan)
Pivotal Ventures – Move Care Forward (Advocacy campaign by Melinda French Gates)
The Caregiver’s Living Room (Blog by Donna Thomson)
I have been mulling over what to say as I really want to say something and not read and run. But all I can come up with is that this all sounds so incredibly hard and that it sounds like you are doing an amazing job even if you feel fatigued. Because just showing up every day to do all the essential caring is doing an amazing job. And it’s impossible for anyone to be a caregiver and be a picture of happiness all the time. It’s exhausting and undervalued. So yes, sounds like you are doing an amazing job, giving what you can and being there day in and day out. I hope you get some time to relax and rejuvenate.