Friday, February 01, 2008

"Hi we are your health care please leave, your complexity annoys us."

There are days in which I wonder why Canada has a secret service when we have a health care system whose administrators contain, twist and alter information with the skill of the 1960’s glory day spies.

Okay, the meeting in my living room: First I had second ‘attack’ after coming home Thursday and was up till 2:30 a.m. and then slept until 7:30 a.m. at which point I fretted.

If there were Olympic medals in fretting, my mother, I believe, would outfret any of your mothers; it is a twisted pride. But I like to think I could win at a local level in fretting.

I had called Juan de Fuca the previous night to find out about H. who was coming. So the night scheduler and I gossiped and I found out that D., the other sub manager, who was obsessed with clients sexual orientation (including mine) had moved on. But I wanted to know exactly what H’s job title was. It was RN Supervisor. This meant that she was an RN and that she administered the LPN’s and the care workers and that the only person above her was Robin. I called my case manager and found out that the meeting which caused this Friday meeting at my place was a round table VIHA meeting and that it was sort of brain storming and that for instance the O.T. thought there might be a device to help me take pills with limited hand function.

Meeting time arrives. In comes E. from VIHA and H. from Juan de Fuca. Now E. is the RN for VIHA and has to authorize anything medically from the case manager. So, effectively, if E. doesn’t want things to happen, they don’t. So I start with H. and say, so you are H. the RN Supervisor, right? And she says, no, not really.

Me: “You are an RN right?”

H: “Yes.”

Me: “And you do have the LPN’s below you to administer.”

H: “Technically”

Me: “And the only person above you is Robin, right?”

H: “I talk to Robin, yes. Robin is in charge.”

Me: “So why isn’t Robin here?”

H: “This isn’t something Robin would do.”

Me: “So then what are you in the structure exactly?”

H.: “An administrator.”

See, what I mean, why is it a big secret what her job is? Anyway, the meeting progresses and E. who is representing VIHA starts doing a trick of my grandmothers, which is telling me things SHE felt but coming from other people like, “Your doctor said that he doesn’t want any care giver administering pills to you during the night.”

What my doctor had said to me the previous day: “They called up, I couldn’t go that day, I send what I had written up about the oxygen and the cooling and since I didn’t remember anything about the medication, I sent nothing at all.”

I asked about what the OT had thought, since I had heard there was a suggestion about help there.

E.: “The Occupational Therapist was invited as a formality because they had seen you more recently than others, but really had nothing to contribute.” (Which contradicts what my Case Manager said, however, the case manager can only ‘advise’ the RN E. It is E. who meets with H., the RN from Juan de Fuca and determines what care is actually given.)

So, what had they determined? They determined that the CISL grant, which I asked to apply for six months ago and was told if I did I would have my care removed was now something the ENTIRE team felt was the BEST OPTION for me. And everyone wanted to work with me to get me on the CISL grant (The Grant means I have to hire my OWN staff, inlcuding doing the pay and deductions for them and vacation and all them but the upside is......I don’t ever call H. again and complain). The problem was that every concern I had was then replied to, “Well, when you have your own caregivers on CISL, you can take that up with them directly.” For example, “What about clients with ALS, they must have problems taking pills in the middle of the night, what do they do?” Answer: “Many of them have a CISL grant.” Me: “Okay…but what do those who don’t do?” Answer: “We find most your age end up getting a CISL Grant.” Linda asks, “Are you going to help us find a similarly experienced night person for after Feb. when our person leaves?” Answer: “Once you are on the CISL grant you will be able to find your own night person.”

So, effectively they want to dump me but if they are going to give me a grant to have at least the same number of hours (or I don’t lose the hours I have if I apply and get rejected) then fine! It did seem however that VIHA and the OT, and the PT and the RN and the rest were like: “Get her a CISL grant and we won’t have to see her again.” Which kind of worries me as, hey, likely will still need an OT signature for adaptive equipment. Also, any time a entire group wants me gone THAT badly, I odd feeling of 'where is the love?'

E. however, as the VIHA representative was relentless is somehow making the entire care process MY problem. For example, the application of cold to avoid heat which H. had said was a Task 2, well, due to advice from my GP and Cheryl the EMT from Death Valley, I wanted to move to a cold pack instead of a ice pack. E., the RN had talked to my GP and agreed though she wanted a wet towel. I said that since one of my concerns is incontenence, I see a problem in covering my body repeatedly with wet towels while in bed (Long stare). Like I don't see how sleeping in wet water will solve sleep problems. (Long stare) “Any suggestions….” (E. gives long stare) “Couldn’t we get a cold pack from the fridge?” (E.: “We have determined a wet towel is the best”)

Then E. tells me that since a wet cold water towel is not frozen, it is NOT a task 2, and will not show up on the task care sheet.

Okay, since August 2007 or earlier, I have been TRYING, and BEGGING H. at Juan de Fuca to get the care givers to cool me down. But H. says, “No, because hot or cold application is a task 2”, now, on Feb 1st 2008, over six months later, E. and H. have decided that cold water towel application is NOT a task 2. Why exactly did not H. or ANYONE say, “hey, as long as the water isn’t frozen, we’ll just add that to the task sheet and you don’t need to spend time with three doctors and two case managers trying to get that added on as a task 2.” It seems oddly that they might care MORE about the procedures than actually, um, helping me with my pain and heat intolerance?

I mention my concern to them about this CISL by March thing as in MY experience NOTHING happens in home care much less government grants in a month. E. looks at me and says, “The timing will be determined by how long it takes you to fill in the forms.” (OW! Got the SLAP DOWN!)

I said, I have an appointment with my GP on the 11th, if you get me the forms, they will be completed including GP portion by THEN. (Back to you E.!)

E. gives me a long stare. (she is really good with that stare thing.)

Then I am informed that E. has ordered a training session for my oxygen. Horaay! Until she tells me she has ordered several workers to come to my place next Friday at 1:00. Seriously E., do you think this is an VIHA building because that is the second meeting you have “arranged” and informed me of without yet checking with ME! Where I come from (Earth) we call that: RUDE.

I bring up the whole, it took five weeks to get a shower, why? It wasn't originally on the Task Sheet. Okay, can we NOW look at the task sheet and maybe add some tasks that might occur in the near future? E. and H. look between each other. “I think with the CISL grant, that is something you can take up once you hire your own staff.” Round and round it goes. Ahh!! I feel that I am in a ring having one of those “catfight” wrestling matches and these two are COMPLETELY coated with vasoline. I can’t get a grip on them anywhere. I even try to get them to have the workers CHECK my temp as I can't feel my own core temp so they can know WHEN to apply the cold. Nope, "That is not something that we feel is in the assessment level of the workers."

Anyway, the news is that I can have cool applied to me, but that for some reason, I always could but H. kept it a secret from me so I passed out lots instead for six months and was in pain a lot (remember my secret service comment): and that there is a training session for Juan de Fuca staff at MY apartment next Friday. During the meeting, my case manager called to set up a meeting on Monday for giving me the CISL paperwork.

I’m sorry that was so surreal but since I lived it, now you can too. I now have meetings: 2 on Monday, one on Tuesday, one on Wedsnesday, one on Friday, one on the following Monday and Tuesday. I don’t know WHAT the meetings are, I can’t remember that, but I am having them. So, I don’t see my Zombie view of life getting better any time soon.

The good news is that I was NOT able to get to sleep this afternoon because the people in Vancouver regarding disability tech support who we (Triumph and I) had decided yesterday was NOT going to work, Vancouver had talked and decided that a) THEY ARE SENDING ME A DISC OF Dragon 9.1 so I can put in on my laptop. And b) They are sending me a computer which I will make a LAAN/LAN (?) connection to my current desktop and use both as a co-desktop and I am authorized because I am a “special case” to put ANY programs on the computer they send me that I might need, or want. Which left me with two problems, get ahold of M. my case manager at Triumph and get her to NOT call the Vancouver people telling them we weren’t going to use them and also figure out what a LAAN/LAN thing is and how I do it with my computer. Luckily, my EMT experience occupied M. yesterday until about closing and she wasn’t in today so I left an urgent message about her NOT calling Vancouver Monday and deep sixing all the equipment they are sending me for FREE (in 2-4 weeks).

At which point in today, I had fallen over about seven times and was so sick that I had to lie for 30 minutes to get well enough to sleep, and then I fell over twice more upon getting up.

After getting up, I turned on the computer, which made strange fan noises, very loud before making a “Whump!” sound as the screen went blank and the computer went dead silent.

So, I guess, all in all, a kind of average day around here. Even with the VIHA people who took five weeks to authorize a shower because it wasn’t “on the task sheet” telling you that YOU are the slow up to the CISL grant THEY decided on Wednesday you need to apply for (but didn’t tell you).

I guess my only real complaint is that when Alice was in Wonderland with the Mad Hatter, at least SHE got a tea party (I want CAKE!).

Also, I am planning to go insane, but only once I clear my schedule in order to have enough energy.


Sarah said...

hi elizabeth
i have been reading your blog for a while-- found it through Donimo. wow, you go through all this shit and still manage to write about it in such a snarky/funny/heartbreaking way??? amazing. thanks for sharing your words-- it does make a difference for a lot of people, including those like me, with a partner with chronic illness-- unfortunately i recognize a lot of the bs that you have to deal with from the ministry and healthcare "providers" ha ha, and i really feel for your partner too.

when i was in junior high and started to encounter teachers who seemed to hate kids and hate teaching, i would try and try to figure out why in the hell they became teachers. the only possible answer seemed to be that they were miserable power trippers who only got satisfaction from having people under their power to spread their misery to. i can only assume that the same is true for these fucking twisted health care people who just dick around with people's lives. god!

anyway, thanks so much for doing what you do.


Elizabeth McClung said...

Sarah: I am shamelessly flattered and I think as a writer you know exactly how to stroke the ego (by the way your piece on how to include the LGBT relations was brill, including that someone thought it was literal). But yours are the comments I keep going; that yeah, it makes some sort of difference. I have no interest in being a "brave little trooper" - I want to be (ego time here) to be like the place people can say, "Hey, you want to know what life is like for me, go read her and you will start to get it." Or the same with caregivers. Sure I wish Linda could do a blog too, but with her two jobs a) Govt. Manager and b) keeping Beth alive - she probably takes the time I write to do shots of rum or something.

The irritating thing is that if I HAD the strength to resist these people, I would show them what annoying condescension is really like, but I am too weak from trying to be SEXY. I said to someone today, "if I overheat, just take off some clothes, but not the last layer....unless it is a corset." and Linda said, "Are you planning to wear a corset to exercise? No!" and I was, "Um.....well, not OFTEN!" (I am so going to wear a corset to badminton just to drive her crazy). Wow, that went off track. But yeah, thanks for that comment, made the night!

lilwatchergirl said...

Bloody horrendous... but sounds vaguely familiar. I got a lot of crap from care agencies for the short time I used them, until I started employing my own staff (in a system that sounds similar to your care grants). It makes me happy to be able to dictate EXACTLY what I want done and EXACTLY how I want it done... Occasionally I get pissed off by the paperwork, but it's generally worth it.

And I hope the power-trippers get a taste of what it's like to be entirely at the mercy of other people sometime.

elizabeth said...

Wowsa. How frustrating is this? Sounds like they have no clue what they are doing... and they are supposed to be helping YOU right? This makes me angry. They should listen to you.

Neil said...

Good morning, Beth and Linda!

I'm more-or-less AB (for now - we're ALL going to be disabled in some way and some time in our lives), and it pleases me to think I can see the person instead of the chair, but I'm learning a hell of a lot from you.

I you don't mind that I'm recommending your blog to coworkers who might be might be able to avoid some of the bureaucracy you're stuck in. Maybe it'll help just a little here in darkest Saskatchewan.

Hmmph, just remembered the doctor who tried to rush me through a kidney biopsy; he was upset with me because I couldn't take deep breaths fast enough for him.
"Breathe in-breathe out-hold it!" then a jab while I was still exhaling the first breath. Three bits of kidney, he wanted, and it took a dozen pokes with that dirty great needle. (It's an interesting feeling when when someone wiggles your kidney for you.)

I hope today's better for you than the last few.

Zen hugs for both of you!

cheryl g. said...

Bloody bureaucrats... more afraid of any potential liability to their agency than truly providing assistance. I'm sure the liability thing is why they are so resistant to having caregivers help you with meds. They want to be damn sure they can't be held accountable for any dosage errors or drug reactions. Classic bureaucrat CYA (cover your ass).

A LAAN/LAN is a local area network. I think most wireless network systems are considered LANs. I strongly recommend you get geek help to set it up. I'd offer but I don't know how.

I guess all in all it is forward progress...

Keep on blogging sis! I love the way you so ably make the ridiculousness of the whole situation clear.

FridaWrites said...

Congrats on the dragon software--hope you get it soon.

That's ridiculous that they require so many meetings--if they didn't spend so much time scheduling meetings and not actually accomplishing work, they might make people's lives easier. And equally ridiculous that it would even have to be marked on a task sheet that someone needs a shower. Hello, daily hygiene is an important life function.

I think a couple of those slippery secret service people (love that alliteration) have made their way into the administration at my work. With the lies they've told about me (not completing paperwork), my direct employer's now completely pissed at me. Fortunately I have good documentation and am about to document with the EEOC.

What is it about administration that dehumanizes so many people, or do you have to be dehumanized in the first place?

Lene Andersen said...

I have an evil plan. Once you get direct funding (as it's called here in Ont) and are turfed from VIHA, write an expose/snarky column about them and submit it to a newspaper. Might that not be fun? Oh! And does that mean you'll be able to hire your good night person for times when she's not working for them or does VIHA have rules about poaching?

Sarah's right - in my experience, there are two kinds of people in the disability care/nursing field: those who genuinely want to help people and power trippers. It's the latter who do the abuse. And because you have a disability and are dependent on them, you sometimes have to decide whether it's worth it to complain or if you'll continue to suck it up.

So excited about you getting Dragon, etc (I actually screamed Woo-Hoo out loud)! To set up a LAN (Local Area Network), you need a router (wireless is best) and what happens after that is vague to me. You'll need a geek, but I believe it's fairly simple.

saraarts said...

Hey! E is a superfluously adversarial objectifying bitch! What fun for all involved!

What is this "Task 2" shit? Why can't your carers just, I don't know, care for you however you need to be cared for?

Also, who is/was the real Juan de Fuca? Every time I read this name I can't help but think it's some obscure saint, like St. John the Fucked or something.

FridaWrites said...

YES! Lena's right. Let other people know what's happening through newspapers and media if you can.

Gaina said...

I blame Mercury Retrograde. Mercury is the planet of travel, technology and communication and it appears to be going 'backwards' (although it's an optical illusion) between now and February 19th, so expect conversations to get more surreal before they get sensible again! haha.

LAN is a Local Area Network connection, basically a wireless network that connects all of your computers to eachother and allows you to get on the internet (this should also mean fast internet connections).

I wish I lived closer, I would come and set it up for you. In the meantime if you get any problems with it then you or Linda are very welcome to email me and I'll try and help from here :).

Raccoon said...

You Get Dragon! Yay!

Do these bureaucratic annoyances know that you write a blog? And that you detail their obnoxiousness? Once you get your grant, collect all of your columns into a book, and make sure they each get a copy. With more copies going to their bosses...

Elizabeth McClung said...

lilwatchergirl: I am glad to hear there is a vote on the side that IF it occurs, the grant will be worth it.

Those who forget history are doomed to repeat it. Do these workers who treat the elderly and physically dependant think they are immune to rotation of the earth, that they will never be old and the fresh faces which learned how to be "efficent" under them, will not show up in THIER living room to dictate how they may shower and pee?

Elizabeth: The ability to become a good social worker seems much more on meeting targets, going to meetings and appeasing government objectives that say....actually knowledge of patient's conditions. Which is sad, funny and very Canadian.

Neil: Good morning! I am glad you see (and hopefully like) the person instead of the chair. Though as I pointed out...rocking wheelchair since it is titanium and can probably be dipped in lava - I won't be there when it comes out but the chair still will!

Please feel free to recommend the blog and avoid the pitfalls of BC which is known as sort of a non nice province for PWD's - like a couple years ago they made EVERY single person on disability "prove" they were disabled - the program probably cost twice the amount to run than it "saved" in finding any cheats but now the public is happy that all the scroungers on the dole have been put through the wringer and meanwhile double leg amputees have had to be humiliated to force to prove that no, thier legs had NOT grown back again.

In Manitoba, where Linda's mother works as a caregiver it is completely different as all the caregivers and the manager meet as a team every two weeks to discuss the patient, how they are progessing, any new needs that have been noticed and how to address them - you know, how logically one might think to deal with caring for people.

Well, on oxy and opiates but today was better till I started visualizing and reliving (in my head with appropriate body twitches) your kidney biopsy story.

It must be the Zen that stopped you from keying that guys car!

Cheryl: Yeah, they have the CYA and liability thing down to an art; I seriously think if they saw a person have a heart attack on the street they might walk on by, so used are they to avoiding any potential liability ("what if I accidently moved them and was considered liable?")

As for Dragon, it is three strides back and two forward and until I have the mic in front of me and the words start appearing, I am just the emotional yo-yo in this - but yeah, must find a tame geek and trap him - will leave out WoW boxes that lead to my door.

Frida: Yes, well at least we know someone WANTS to give it to me, if that can make it through the maze is yet to be seen. Yes, it is not just the logic of "hey people need showers" but how no one asks, who made a rule about showers needing so much authorization, nope it is just kicked back and forth with yet another signiture required. Yet someone must have at one point said, showers need a case manager to authorize....who? And can we let the air out of thier tires? Good job collecting evidence - take it too them - I collect evidence too, but I find if you can get an AB to vouch for you, you get taken seriously - pathetically descriminatory but true - good luck!

Lene: You need to work on your evil plans more. I do that normally, for me evil plan are like sending in letters to the deputy minister of health claiming that she discriminated against you on the basis of your religion because it is a) virtually unprovable and b) anything which smells of Human Rights Cases drives government ministers and deputy ministers into a frenzy. Actually, I plan to hire my night worker to find and screen my workers (and poach them) - we've already talked about it.

I am not going to dignify you with a comment about how good I am at sucking or not except to say, when it comes to authority abuse, I have an odd form of poor impulse control verbally.

Woo Hoo! But, again, until my HANDS are ON the disc, I remain praying to the diety of tech assistance.

Sara: Well, I guess for E. she is so used to being the person that MAKES the decisions for care that she thinks that she matters (often known as Specialist Doctor complex) - which she doesn't since she isn't listening to my care needs, only trying to impose her decisions. And I'm not a child, I'm a human which has failing function, and if my heart goes into arrest, her demands that I act this way or that mean nothing.

Well, yes, they could care for you, but wouldn't making a WHOLE slew of rules be so much better? Many of my carers were required to take 6 months of training, some took 1 year, Juan de Fuca requires 3 months, but the new company requires only 10 weeks. When they kept saying, "Our carers have no medical training" I said, why not send them to St. John's ambulence and in one day they can be trained for basic first aid. They seem bewildered. I said, "You know, so they can act appropriately in an emergency situation?" They continued to be bewildered and said, "We don't send people for external courses." No, of course not.

Juan de Fuca was a Greek navigator who sailed for Spain under a Spanish name; his original name was Apostolos Valerianos. De Fuca sailed up the western coast of North America from Mexico to Vancouver Island in 1592, looking for a passage from the Pacific Ocean to the Atlantic Ocean. He was perhaps the first European to see this area. He sailed through the Strait of Juan de Fuca (which was named for him in 1725) and believed it to be the beginning of a route to the Atlantic Ocean (it is not).

Unfortunately no one believed him and he wasn't rewarded, it was considered a "mythical strait" until 200 years later Captain Cook found the same strait and noted the exact same route as Juan de Fuca - so basicly a guy screwed in history is now a company which screws its clients - somehow appropriate.

Elizabeth McClung said...

Frida: my plan is to get Triumph to get me the contacts so I look respectable then blast them once I have done a few "reviews of accessible movies theatres" etc columns - pretend to be nice for a few weeks, if that is possible for me.

Gaina: Well, I am glad someone knows what is going on - does this mean that things will suddenly become easy later?

Okay, Local Area Network - what I need to do is hook up two desktops to one monitor and be able to switch between them on the same monitor - is that possible? Do you work for software, like old games?

Raccoon: They all know I am a writer and I know that D. at Juan de Fuca used to read it since my workers told me so and told me he would grill them about stuff I blogged about and ask them if I was talking about them. So I am pretty sure H. knows and if these people ever googled me, they would know, but hey, I signed no condifentiality clause and they were in MY living room. So fair game, I am at least kind enough to make initials or nicknames. Mostly because this is just the view from my seat and I don't want to play the, "I didn't say it exactly that way game" - They are free to do blogs about all thier horrid clients (though that has historically been a quick route to getting unemployed). I used to read one woman in Texas who used to work in an asylum and talk about how she would torture her clients and put them in four point restraints until they shat themselves because her boyfriend broke up with her and she was so frustrated that it felt good to see someone else suffer. Made me NEVER want to get committed in Texas!

Dawn said...

Medical care here in the US is just as much a three ring circus. When I moved from Kansas to Louisiana, I was told by one Medicaid (state medical assistance) worker that I had to reapply for services in LA. I get the paperwork, fill it all out in one day, and mail it back. Two months later, the worker who had been assigned my case calls to tell me that if I simply change my address with Supplemental Security Income from KS to LA, my Medicaid will automatically transfer with no forms.


Gaina said...

Haha, no Elizabeth I don't work with computers I'm just a self-taught geek. LOL.

Do you have windows XP or later? If so then yes, you can run two computers off the same monitor. That however is major geek territory and I would advise you to speak to someone at a local computer store as monitor sharing is something I've never tried :).

Now about this mercury business...
Mercury will be 'stationary' on Feb 29th then start moving forwards again, so this will 'undo' anything that got fucked up during the retrograde. By march 10th it will be back where to was before the retrograde period started, then you can truly make 'new' progress after that.

Lisa Harney said...

"I blame Mercury Retrograde. Mercury is the planet of travel, technology and communication and it appears to be going 'backwards' (although it's an optical illusion) between now and February 19th, so expect conversations to get more surreal before they get sensible again! haha."

I remember in 2003 (I think) when a vast swath of internet gained massive lag for some reason, and became unusable for a lot of people while Mercury was in retrograde. The internet health report showed a big swath of red. Surely a coincidence...right? :)

Elizabeth, I'm reminded again of staff personality disorder. I also wonder if putting wet towels in plastic bags so you're not soaked when they cool you off would put cooling into the "can't do that" category.

Also, they do seem to like a bureaucratic shield against responsibility or duty.

Elizabeth McClung said...

Dawn: there is NOTHING more annoying to spend all that energy to do something party X tells you to face party Y who goes, "What did you do that, it is completely unneeded!" - so hearing you!

Gaina: I have XP but I still need to hunt and trap a tame geek. This mercury thing is depressing me, as I don't know if I can keep on until the end of Feb with the knowledge that all fuck ups might be resolved. Did I mention my short attention span - and my tendancy to obsess - that is a LOT of obsession days!

Lisa: Yeah, staff personality disorder big time, I will try the plastic bag thing but I believe there must be something we can just put in the fridge a few hours before I go to bed? Surely? Or just pour cold peas over me, I don't know. I mean, heat intolernace isn't rare, I will have to go forum searching and see what I can find. We WILL find a loophole!

Lisa Harney said...

I just want to say: I hate Mercury retrograde.

cheryl g. said...

You know those soft gel pacs they sell to put into the freezer? There are even really big ones to use with coolers. That's what we used in Death Valley. We just kept a bunch in the fridge available to use. They hold the cold well, don't drip, don't mildew and can be reused.

I'll email you a link for what I'm talking about.