Monday, September 22, 2014

Cat on a Hot Tin Roof That Jack Built, Part Three***



There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,
I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?
Love, Elizabeth

Dear Joan,
I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.
Love, Elizabeth

Dear Joan,
I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.
Love, Elizabeth

Dear Joan,
I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.
Love, Elizabeth








***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.





10 comments:

  1. Well. I love you. That's all I can say about that.

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  2. There is a rather profound resemblance between you and Maggie/Liz. I'm not kidding.

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  3. In full agreement with Miss Moon. Know that you lighten my day....

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  4. Ha! Now that's making lemonade out of lemons. Or "limones," as Javier might say.

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  5. So, I see I am not the only one who thinks you look like Elizabeth Taylor.

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  6. I have another suggestion:

    Dear Joan, I spend those 'respite' hours on the phone with various governmental and insurance agencies, filling out paperwork and justifying my requests, defending my very existence, and taking Prilosec to quell the heartburn they induce. In fact, I spend so much time navigating bureaucracy in order to get such things as respite care and wheelchairs and interventions that might help my daughter, I'm thinking about doubling the number of hours of respite care I am asking for.

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  7. Yep, laughter and friendship. That's the secret.

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  8. I like your friend's responses, very much. Especially the crying one. God knows I cried a river when I cared for Katie at home.

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