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What I Need to Tell…

2015.December.14

I’ve had a bit of writer’s block the past month or so, not because there’s nothing to tell but because it’s all just a big jumble of rubber-bands — not one of those slick rubber-band balls that you pick up and strip away one swatch at a time, but a crumpled cluster of enthatched rubber of indiscriminant qualities and age.

I told myself it would be easier if I just started posting the topics; whether I followed through was kind of unimportant. I just need a reference point for future conversations, future reflections…

So here are some of the topics that deserve full posts and rigorous conversations (but probably won’t receive them):

Why did I have to go to Washington, DC, for the funeral, and why did I only stay for one impossible night?
Why did I hide myself with the former colleagues I saw there, making no mention of my successful plural relationships, my workshops supporting the same, and my interest in the same sexual and reproductive topics that we struggled to include in our work a decade ago? It’s no different from my crippling identity crisis when I lived and worked there, is it?
Why didn’t I ask them to talk about themselves more when all I wanted was to NOT spend the whole afternoon talking about myself (and doing exactly that)?
How do I feel about the fact that our deceased mentor was the only one of them to stay in regular contact over these past four years of caregiving?

Healing is incredibly hard, and it’s impossible to know how much there will be until things are stable. My self-care and relationships are probably in critical-but-stable condition.
I am exercising restraint and caution when thinking past the holidays. I need openness and flexibility then and rest and low pressure now.
I have got to find a way to break myself of the old habits that became dormant during caregiving.
I really want to get back into reading.
My brain still doesn’t feel like my own. My mood and endurance know great heights, but I still mix up words and drop things as much as I ever have.

I was the first caregiver I knew of my generation, but I am far from last. Already, friends and peers are approaching me to share their accounts of dementia in the family and identify a path forward.
If I expand my umbrella of “caregiving” beyond just dementia/memory care, I realized I know quite a few part-time and full-time caregivers under the age of 30, 40, 50. We are not as alone as we think.
The first piece of advice I’d give any new caregiver might just be “Caregiving is not a spectator sport.”

Also under the category of “not as alone as we think”, I’ve discovered a lot of people were following along my adventures online these recent years who never once spoke up in support or comfort. My loved ones had already helped me understand before my peers themselves did that said peers simply didn’t know what to make of me and my circumstance, but I’m almost as resentful of their reemergence en masse now that I’m “normal” again as I am that they were ever absent. I just don’t think they realize how much of myself I forgot existed, and how many voids little notes and acknowledgments would have filled. I wish any one of them had said, “Hey, you’re going through a rough time, but I can’t hang while you’re going through this; drop me a line when your life isn’t consumed with old man smells and navel-gazing.” But this is literally all I want to ever say on the matter, because I love them all for being there now.

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2 comments

  1. So when I check my dreamwidth reading page, it has this blog as an RSS feed on it now. So I may not see your posts in a timely fashion, but I am gonna read them.

    In DC: Were you afraid of the people you wanted to understand you not understanding? Did you want to keep your illusions of them and theirs of you intact, and not have to fork over emotional investment you didn’t have the spoons for in the care giving aftermath? There are some options.


  2. I was afraid of the people in DC understanding, in part because I had so little time to say anything and follow through. I’m not so concerned with my illusions of them, nor even theirs of me, so much as I want to make sure there is proper space and engagement for that to happen without losing support. I definitely didn’t have a lot of spoons; the more I DIDN’T want to talk about caregiving, the more I couldn’t shut up about it.



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