Tuesday, December 16, 2014

One Thing at a Time, Over Twenty Years Worth of Days

Temecula, CA December 2014

So, I was talking to a fellow caregiver yesterday who was having a particularly grim and hard day. Milestone birthdays were involved as was squabbling with The System, and my friend was feeling crabby and exhausted. I told her that as I've grown older and the years have ticked by, I find myself tackling The System in bits, handling maybe one thing a day -- or week or month. Maybe I should say that I handle only one thing a day or week or month not because that's all I can do in any given day or week or month but rather because the effect of doing that thing is generally so debilitating and stressful that it takes at least a day and sometimes a week and maybe even a month to recover. And maybe the reason why the effect of doing that thing is so debilitating is because I've been doing that thing or some other thing for nearly twenty years -- meaning, the effect is or has been cumulative. Meaning just the thought of being on hold and then dealing with Medi-Cal or Anthem Blue Cross or Assurant or the State of California or Accredited Nursing Agency or The Neurologist or The Wheelchair Broker or The Los Angeles Unified School District or The Powers That Be or The Diaper People in St. Louis or the $9,345 chariot bill or the texts from the teachers and aides about seizures or drooling or bowel movements or knees out of joint or constant stimming and humming is enough to have made and continue to make me just this side of crazy.

Or maybe I'm just burnt out.

The one thing I did today was make a call to the agency that helped me to fill out the paperwork and gain conservatorship of Sophie two years ago when she turned 18. I called an attorney at the agency to ask her whether she could help me to figure out Sophie's Medi-Cal situation (and I prefer to pronounce the word situation like the French sit U AH SEE ON with an emphasis on that last syllable because that's what people just this side of crazy do to cope). I'm not going to tell you why I need help with Sophie's Medi-Cal sit-u-ah-see-on because that would be another thing, and that another thing happened last week when I spent three hours with Medi-Cal themselves trying to figure it out. I told myself when I hung up the phone then that I would deal with the sit-u-ah-see-on next week, because I knew it would take about a week to recover. So, I made the call today and left a message and that's it for today. That's all I'm going to do as far as sit-u-ah-see-ons go.

I hope someone out there finds this helpful.

For the rest of you, here's a funny story.

Oliver has been using the word dildo in a joking, obnoxious, thirteen year old boy way for the last couple of weeks, and during one interminable stretch of it, I said, Enough! Enough with the word, Oliver! Just enough! And he stopped and said, Mom, do you even KNOW what a dildo is? and Reader, I controlled myself from bursting into flames or laughter and then told him that if he asked me another dumb question, I'd give him a lecture on onanism.


17 comments:

  1. All about balance, eh? And pacing yourself.
    Oh, Oliver.

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  2. "I hope someone out there finds this helpful"

    Yup. Just the fact that I realized I am not alone in my way of dealing with 'the system' makes it somehow better. But you knew that. (o;

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  3. I cannot even begin to tell you how healing and helpful this post was is and will be again when I next read.
    xo

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  4. Right there with you - taking it one day at a time around here.

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  5. I can so totally relate to the doing something one day and needing a month to recoup. ERGH.

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  6. I had to look up onanism. You should give him a lecture on it anyway.

    And forms and bureaucracy, fucking hate them!

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  7. Oh if only our children knew what we know, they'd burst into flames.

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  8. This is helpful to everyone I suspect but especially to people dealing with overwhelming, constant red tape crap in the midst of care taking roles that don't let up. It is actually unbelievable to me that when I was helping a friend who had cancer the paperwork they had her fill out got harder and more cumbersome the sicker she got - and she lived alone. It was ridiculous to witness. I feel for you and think you have to approach these things as you can to keep your sanity. I'm sorry it never lets up. Sweet Jo

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  9. I hope your situation (pronounced the French way) is soon resolved and that the next one and the next one will be eased too. Love that Oliver!

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  10. Ha! Well at least you have Oliver for some comedy relief, as unfunny as it may occasionally appear.

    When I was a kid my mom had an office party at which her colleagues all gave each other gag gifts, including an egg vibrator. My brother and I thought the egg vibrator was the funniest thing we'd ever seen. We talked about it for years. We STILL talk about it.

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  11. Well, those powers that be are just a bunch of dildos anyways. ;)

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  12. I'm just going to focus on the last paragraph and laugh. Oh, and wish you more of that sort of sit u a tion instead of the one(s) you are faced with daily.

    Best,
    Bonnie

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  13. Thank you for both the giggle and the I-get-it. Not enough can be made of the recovery periods.

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  14. Yes, I have to recover too and the only way I can get it done is by pacing myself. It is also healing for me to know I am not alone in feeling like this...

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  15. I wonder how much the people who work in those behemoth bureaucracies feel akin to you? Bubba recently quit his very lucrative job with a ginormous corporation because the endless paperwork and labyrinthine rules to follow actually made him want to set his hair on fire every night when he got home. He never felt productive or proactive, so he decided it wasn't worth it. I spoke to someone else last night who made the same choice with regard to another corporation. Nice that they have the choice when you don't, but it is interesting to me that these systems rarely work for anyone except perhaps the folks raking in the money at the top who design the counterproductive systems and never have to use them. Ugh.

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  16. Just a year or so ago, I had to start working for Maybelle's care in a variety of assertive ways. Good cop? Bad cop? Sweetie with a hard spine? What's the saying, hard fist with a velvet glove?

    I'm lucky enough to have found (and/or am passionate friends with) advocates. Attorneys. Fighters. Let's hope I can keep them.

    Exhausting. Furiousness-inducing. Motherfuckers.

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