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Thursday, December 30, 2010


When I was able-bodied I knew people who weren't and received services. Like housekeeping, errand-running, etc. And I thought, "That's nice; they get their needs met." Then I became disabled and needed services.

It took a while, for one thing. Several Dr appointments til I cried that I couldn't keep my home clean or do laundry anymore. Then the doc referred me to services, in the form of our local VNA. "That's a Godsend," I thought. And well, in a way it is. When all runs smoothly. Problem is, that's the exception, not the rule.

Every time my regular aide is off work my life goes to hell.

Ya see, there are things that Have To Be Done on certain days. Bill paying, meds, shopping... all have schedules in my life because that's how it has to be or I won't be able to function. The laws and regs surrounding meds are precise and stringent. Being one day late or early with anything will ruin your whole year. I'm not kidding. And any change of plans is a domino run.

First of all, I didn't know my regular aide was off this week. I saw her Friday and she said, "See you Tuesday." Last domino standing in place.

I had a brief visit on Tuesday but not everything was done. Still, an aide should be coming Friday, and that's when meds are filled and picked up, but it has to be done Friday. No later, no earlier. Medicare rules all.

Then yesterday the Dr's office calls to say my scripts have to be picked up today because they're closed on New Year's Eve. Here is the knocker domino. Why? Because getting anyone from the agency will be iffy. Because today- Thursday- is not my regular day for an aide. And because I was planning having dinner with a friend who has no time and today was The Evening She Could. She'd be here at 5:30, because the front door gets locked at 6 and she has to make it an early night anyway. But at 7:45 this morning I get a call (while I'm in the bathroom) from an aide who says she'll be here at 5 for a 3 hour shift- too late for the dr's office, or even the post office, but late enough to wreck my dinner plans. And she hangs up before I reach the phone, not leaving a number.

I call the office to speak to a scheduler, and get the voicemail, natch. 3 hours go by & I hear nothing.

In the meantime, a friend sweetly volunteers to pick up the scripts today and drop them at the pharmacy to be filled tomorrow. Worse case, I'll have to call & ask for the pharmacy to deliver tomorrow. Phew, that one's covered, thanks Cam!

Then I call my dinner guest & apologize my butt off for cancelling. I can't have guests here, by rule, when the aide is here. We won't be able to get together til the end of January now. But c'est la vie. Dammit.

I call the VNA again to tell them all this. They've already rescheduled yet another aide to come earlier today, but have no time frame to give me of her arrival and never tried to call to tell me of this new plan and neither had the aide. In light of everything now, the scheduler says she'll try to cancel the aide coming today altogether and get someone to come tomorrow, as the filled meds need to be picked up & I still need things done. There's been a package at the PO since last Friday that the Tuesday fill-in aide said she had no time to collect, for one thing. So yes, great, send me someone tomorrow.

Except my dinner guest, hours later, is unreachable. See you at the end of January, Ellen.

This is the craziness of disability. When you have to rely on others, you're screwed. It all still would've been manageable had the Dr's office let me know more than one day ahead that they would be closed. I would've scrambled to get covered and none of the above would've happened. They've had this holiday planned for months. I call them every 2 weeks- they couldn't have put the closure on their damned automated answering drone? My ass.

Services look very different when you're on the other side. You can't know that til you need them, I guess.

Well, I gotta go. Lots of dominoes to stand for the next knockdown.

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