I just read Lesley Austin’s thoughtful, beautiful post about respite at her blog, Under My Wing, and was so inspired by her phrase “sweet burden”, describing caregiving.
You know when there’s a torrent of words and feelings you can’t capture to communicate to others and it feels exhausting to try? I’m not very verbally eloquent, especially on the spot ~ a recurrent feeling throughout my life. That’s why I write.
And that’s how I felt the other day when I ran into an old friend at the grocery store and we were doing the oh-so- awkward trying to catch up in 6 minutes routine in front of the banana display. As soon as I mentioned that my mom was in the state she is, I could see him pulling back with pity. Not unkindly, but guarding himself and putting up a psychic boundary against the further details he was already visualizing – probably because we’re not close anymore, and he knew he couldn’t help. All entirely sensible under the circumstances of what he was probably imagining.
I wanted to stop him right then and rewind, wanted to yell “wait, stop, you have the wrong story – it’s not the one you’re thinking!” But I got frozen like I usually do when I feel people putting my experience with Mom in a compartment of their head, slowing the conversation to a creep, not realizing how many variations there are besides the plight of the woeful caregiver. I had a mouthful of words that wouldn’t fall out of my mouth in any pattern that would be intelligible, so I didn’t even try to explain.
Very unlikely I’ll ever see him again; not worth it, maybe, were some of the thoughts running through my head.
But my old friend is a good person, a thoughtful man, a writer/thinking/poet, and though I hadn’t seen him for 10 years and may not ever again, he was a “heart” friend, and I felt we were both cheated in that glossed over exchange that didn’t do anyone justice (him or me or Mom), and I felt just a little emptier than I had before.
How to communicate the riches of dementia caregiving? ….the crazy huge world between life and death where you fall into the rabbit hole to a dimension that you didn’t even know existed. Where a minute of time moves eons slower than the hour hand… and your worst nightmeres turn into poems and acceptance and just enough space to take another breath…
None of us ask for this experience, but for me, it’s endlessly rich in a way that only perhaps music without words or silence or a heavenly piece of art can get anywhere close to expressing.
Sadness, while always hanging around the corner, is only one aspect of this wild life that never turns out to be what you expected. For me, that’s true almost every day I see Mom.
But thanks to you, Lesley, if I ever see Isaac or any other stranger from my past again and start to feel frozen in those pity headlights, I’ll be empowered by your words. I’ll say that my life with Mom in the crazy right now is a sweet burden. And I think anyone with the least bit of emotional intelligence will GET it.