Friday, February 24, 2012

And then I cried.

A day of having VIHA tell me that no, it must be person Q, while person Q tells me it is Person T at VIHA, who says, “No that is definitely Q.”

“I just talked to them”

“Well then it must be F.”

“Actually,” I say, “they were the ones who transferred my call to you.”

“Really!!? Oh, well um, call back Monday.”

And then one organization kept shuffling me by phone back and forth from Victoria to Vancouver. Victoria person asks manager, then sends me to Vancouver, tell story again, told to wait and finally get manager in Vancouver, who asks me if I have the number for the Victoria office. They transfer me, I get another person who then gives me to another manager, who says, ‘Where do you get this information?”

“Your web page.”

I was on the phone or talking, trying to find ANYONE who would put something in writing (none so far), having people yell at me, hang up on me, tell me this wasn’t for me, that they didn’t know or care but not my inch.

Because there was a secret meeting, with people who won’t say they were there, even when I talk to them, and won’t put it in writing. They want me to see a psychologist. They want me to be labeled. Because that will improve my quality of life? It gives them a lens though which to distance themselves from me, and to justify actions. But actions not honest or noble enough to be done openly, or with us present, in case the reality shake the foundations of a self convinced fantasy.

I have moved from having a disease which is all in my mind, to having a extremely painful, debilitating and terrifying disease which can be ignored if I am the mental disease. Somehow having a mental disease trumps whatever physical might be killing me. And here I thought they had given up on controlling me.

After so many hours, always calm, always explaining, always persistent, the last person of the day asked how it was, being me.

“Sometimes I am in too much pain to fully appreciate all that people do for me.” I said.

“That sounds hard, for your caregiver, for you. It must be very hard.”

It was the only person who let themselves risk caring, to speak of the personal, intimate.

“It is,” I said, trying not to let my voice break, “Thank you for your time.”

13 comments:

GirlWithTheCane said...

Fucking government.

Sorry for the language.

*hugs if okay*

- Sarah

wendryn said...

That really sucks. I mean, red tape and confusion is awful at the best of times, and this is definitely not the best of times, so everything is even worse.

I'm sorry you have to put up with this.

*hugs*

JaneB said...

I don't know how you do it! At least ONE person showed that they were human... but still, I couldn't've stayed clam and reasonable that long...

Elizabeth McClung said...

It is what it is. I used to be surprised at workers who were RN's or care individuals who were so callous and how not one of them seemed to actually CARE about anything but going home early. VIHA for example doesn't answer phones for 20 minutes before 4:30, except on fridays when they don't answer phones for 30-35 minutes before 4:30 (just in case someone calls who needs something).

So when someone does care, when someone does genuinely seem concerned, it catches me, frozen in a spotlight.

As for the rest, VIHA was rated by the ombudsperson office and asked to improve in 25 ways (like not charging people they have committed to asylums for the beds which they are not using - due to being committed - a double dipping charge: VIHA has responsed by agreeing to change 5......in the future...but not the double dipping one).

Baba Yaga said...

Your persistence leaves me in awe. That you need so much of it leaves me rather gnashing my teeth...

The desire to psychologise people into non-existence - eh, one more form of power play. A singularly nasty one, but far too convenient to be missed. I'm almost impressed that they can apply it to your situation: you'd think minor details like stopping breathing might interfere.

I'm glad one person recognised you as human, for a moment. It's just that that really ought to be a given, oughtn't it?

What a waste of your energies.

Kelly said...

Great post. Thick. Solid. Tight. Keep us all posted on your continued progress with any new posts. Wanna see how freakin’ huge, solid, thick and tight your posts can get. Thanks for the motivation.

Raccoon said...

...

I'm just...

I mean...

Being human… Wouldn't that involve emotion?

There was the infant/toddler in China that people walked past and ignored... The woman in New York whose screams were ignored as she was raped & killed... The man who couldn't walk because his leg had been broken, people walking past him...

I know, "Not My Problem..."

Olivia said...

More proof that we (humans generally) so often want others misfortunes to be their own fault somehow - without looking into the logic too carefully - because that means we can somehow avoid the same misfortune. It comes from fear and ignorance.

Hugs to you, Beth. Great post. And your socks will be on the way tomorrow!

Bonnie said...

Sigh. This is just so, so wrong.
The difference between the hospice I've seen here in the US and what you're describing is just horrific.

I consider it an honor to help someone live near the end of their life, and 'walk them to the door' between this world and the next.

It shocks and shames me that so many workers act so callously.

I live way, way too far away to do anything, and wish I could. I KNOW I could give better care, even with making newbie mistakes. I have to say I have made a pledge to myself to give the BEST care I can, to my patients.

And yes, I am seriously looking at hospice as a career choice. Thank you for showing me how much it can make a difference.

Bonnie in Columbus

Lorna, Bob and Liam said...

*sigh* Just... *sigh*

virtual hugs to you and Linda

Lorna, Bob and Liam

SharonMV said...

Dear Beth,
I'm sorry that you have to deal with such uncaring "care" workers yet again. You are amazing to keep your composure during all those phone calls. It seems like the whole VIVA system is set up to frustrate the people they are supposed to serve. I'm glad at least one person asked how you are doing.
It's ridiculous trying to classify you as having a psychological disease (just another way they can distance themselves from you & having to do their job, providing care. Perhaps they can try to say that psych problems are not their inch, or that psych issues make you to "difficult" to care for, so they won't have to do it. I hope you don't have to go to an evaluation.
Your time should be for doing what you need and what you like to do.

Love,
Sharon

Neil said...

You want a label? I can label you: intelligent, persistent, insightful, tall, beautiful, reasonable, questioning, dying, married, wheelchair-using human. Ca va?

Lene Andersen said...

bastards. The very system that is mandated to help you and funded to help you want to pigeonhole you, label you and put you in a jar. Which they will then no doubt dropkick to anywhere but their agency.

WTF would a psychologist do that is at all relevant to VIHA?