Saturday, July 26, 2008

I am ordered to create a DNR so I can be killed, plus I get postcards!

Well, this is how I started the day, which indicated that I am plain tuckered-out. This is also my first appointment, an early morning wheelchair seating call for my new computer chair with recline and headrest for post-seizure and the hours of fatigue. We will be submitting for a basic electric one, as this manual will only service me for a few months at best, until I can’t self transfer anymore. But when the government is paying, if all they will pay for is manual, that gives more months to come up with a solution (which I guess could be me sitting there all day until care come with a catheter and bag). The wheelchair meeting also fixed my indoor chair so it can go right into the bathroom now, full access.

This was followed by the “big meeting” which was then followed by calls from many people and organizations. This included the BC epilepsy society (now a member) who said that 30% of people become epileptic or have ‘seizure disorder’ later in life due to brain injury, stroke, etc. Also talked through some seizures my GP was saying some of mine weren’t Clonic Tonic, and they were. His seizure info is sort of out of date (by like 40 years) and she said that currently there are about 200 types of “common” seizures for people under the epilepsy umbrella, and 2,000 more uncommon ones. I am getting a packet of info called, “Why it seems you spend your life recovering from your brain going “FITZZZZ!”?” But also got clarification from them on what an “emergent” seizure parameters are, as the care giver agency started with “any seizure requires 911” and we started asking about absent seizures (where I stare into space on a pause button for 10-30 seconds), and they said, “oh no, not that one.” And we asked about another, and it was “oh no not that one.” And then it turns out all they really know or care about are Grand Mal’s.

The afternoon ended with a call from my Case Manager saying that the Executive Director of Beacon, has unilaterally decided to negate the collective care agreement VIHA, Beacon and my Medical Care Executors agreed on and now has limited my care, retracting the agreement until I go to my doctor and give her a BLANK DNR (Do Not Resuscitate Order). This was timed at 4:25 so all the people at the meeting were gone and will not be back until Monday or Tuesday.

What the executive Director has personally asked me to provide is a document which dissolves Beacon and or its workers from any liability, up to and including if after a seizure when I am helpless, a care worker puts a pillow over my face. Or if I fall face down and the care worker doesn’t turn my head so I can breath. Seriously.

The care plan we crafted was to the specs of the Epilepsy society of Canada; using PT equipment and headrest, along with tilt and recline to make sure airways are clear, and aspiration into the lungs does not occur during recovering. What the Executive Director has done is choose to discriminate on my care BECAUSE I have epilepsy. She wants it so that I MUST give her a piece of paper so that even IF the care workers do NOT follow the plan we have crafted, and do not clear my airway (for which the care plan was created) and I die, then Beacon will not be liable. Why? Because they have a paper saying I have told them NOT to resuscitate me (which is the opposite of the two hours of meetings between the three parties today). Except the Executive Director is blackmailing not all of the clients, just ME, in order to get that DNR. I will be talking about this in length on the BBC, because you may remember a story about a school who made a student in a wheelchair who had seizures sign a DNR (So Not Resuscitate) in order to attend classes. That was on CNN. I think the emotional trauma was several hundred thousand dollars worth. Having the people you pay to make sure you STAY alive blackmailing you to give them a paper to ensure that they can watch you die…..gosh, I guess Xmas came early for me. Because, she didn’t choose to discriminate against me because I am an abrasive, arrogant and aggressive person who irritated her (or even a lesbian, or left handed). Nope, she is discriminating because I have EPILEPSY! OMG! Gee, I wonder your Honorable Human Rights Judge if there is any precedent to follow regarding discrimination due to Epilepsy in the last hundred years in case law?

Yeah, I was mad for two minutes, but then I thanked the manager on the phone for making my weekend. As by the end of Next Week, I will try to make sure that on CNN, BBC, CBC, and up at the Health Ministry, the name of Isobel Mackenzie, the Executive Officer of Beacon Community Care is synonymous with Mengele. Hahaha! Seriously, if I wasn’t dying, I would be happy I am about to be so rich; but at least I have the satisfaction of watching her squirm over the next few weeks with hatred of me. I am making up my, “Isobel Mackenzie wants cripples to die!” placard for my protest (got to be Camera Ready) in front of Beacon!

Anyway, that consumed a great deal of time today and the rest has been spent in anime, and the arrival of my 150 postcards from Japan! Hooray, I am just starting to enjoy the variety, like this school trip postcards!
Or then again, what about a nice goth loli card, that would be fun too yes?
Serious, I am very exhausted and near to another seizure and since I have every day until next Thursday already booked, the chances that I will have a health breakdown are very high. Beacon Home Support asked us that they be immediately notified when I am taken to ER and the hospital. They even want all the medical details. Is this so they can immediately update the care plan? No, it is because, if I cancel care within 24 hours, VIHA has to pay anyway. So if they KNOW I am at the ER, instead of MY careworker waiting at MY place, they can reassign them to another location and double bill for the same hour. Do you feel the love? Do you? I do! I know there is probably a banner in the office covered with dust with the phrase, “Care comes first!”

Okay, now what would postcards from Japan be like without some Traditional Japanese girls, like Shrine Maidens and School girls?
And finally, we also picked up some Yuri (girl/girl love!) and some (yaoi) boy/boy love. Mmmmm, anime goodness. And yes, when the post card arrives, just tell your significant other that “they are JUST good friends!” Yeah.

Tomorrow is Luminaria – I am hoping I will be conscious! (Dream big!)


SharonMV said...

Dear Beth,
Sorry your day was so hard. Today I was thinking about you & the horrible meeting. I will not comment on that "care" organization or director, as i do have to try to get some sleep tonight & after talking about them, I'd be far too angry to sleep.

Having all the up-to-date info and the support of the epilepsy society will be a definite benefit. Isn't a pain that we so often have to educate our doctors? But at least your GP seems willing to listen now & that is good. Got to keep at least one doctor on your side.

I'm glad all your pretty postcards arrived. Glad that something nice happened today. There should be a package from me in the PO box now or very soon.


rachelcreative said...

Oh yer I am feeling the love! Another example of a bullying system.

I like the girl postcards. From an artistic point of view of course ;o)

Today in the England it is actually like a summer July day. Sunny hot and I am sure many bright red crispy skinned persons by the end of the day. Oh and everyone saying "cor it's hot isn't it?".

Hard to know whether to get me some fresh air and sunshine or stay in the cool semi darkness on the sofa!

ismith said...

The mind boggles. I've seen a lot of stupidity and ableism, but I still can't figure out just how they justify this sort of thing. Demanding a DNR because you have epilepsy? What. The. Hell.

Anonymous said...

Amazing when you consider that Beacon in essence has a monopoly in "coordinating" care having successfully swallowed up all the other agencies. And which member of city council is Isobel the spouse of.

Tom P. said...

Mikey had absent seizures earlier in the spring. His would last a couple of minutes and then he would be fine. Our doctor put him on Depakote and he hasn't had any seizures since.

Neil said...

I will not comment on the bad stuff; it st doesn't bear commenting on. But when you're rich and famous, WE can all say "we knew you 'when', and you were just as sweet and concerned for your friends as you are now."

Lovely cards, all of them. I treasure the cards I have received from you, dear Beth.

For a little smile, please go to and click on "Dancing 2008." Matt Harding travels the world to dance and record the reactions. He has a short clip from Japan, where he appears to be dancing in a school room; just watch the clothes on the students!

We went to a baby shower last night. The young Finn was presented with the strangest, and most appropriate, gifts I have EVER seen. Among them: Dr. Seuss's Green Eggs and Ham, in Latin; a hand-crocheted baby Chthulu squeeze toy; a rubber bust of Shakespeare with duck-beak lips; a boxed toy set labeled "Frogmen Vs the Radioactive Octopus" (with glow-in-the-dark octopus); a couple of frog-green rubber ducks; plus the usual booties and clothes (many with frog themes), and a (non-froggy) t-shirt labelled "Spit happens." My Beloved is still knitting an afghan for mom and baby, and feels rather mundane and almost boring because all she's doing is rolling a die to choose the colour she knits the next row with.

Praying for better days for both of you,

Meredith said...

Gahh. Must be every "healthcare" system be so weird?
Though....... I'd totally sign that now. I'm just accepted into university - but there is so much administrative bullshit and uncertainty and I would need WAY more money that I have.....eek! It would be so easy to let some illness or nurse destroy me instead of all this BULLSHIT paperwork...
The postcards rock, btw. The yuri one made me smile :)

FridaWrites said...

Well, pulling out my droll voice again, I'd say they're attempting to make you sign under duress. Withdrawing care for not signing a DNR, which should always be voluntary? Yep, sounds like bad press for them. Proud of you for fighting back, difficult as that is when you're ill.

Lene Andersen said...

Sigh. Just... sigh.

sly civilian said...

that is some messed up bureaucracy.

hope you can get some rest.

saraarts said...

My blood pressure shot up as I read this post, but then I started to laugh at about the same point in the story when you did. A delicious plan, my friend. Still, though, I would urge you to see if you can get a lawyer. I cannot believe any of this is legal, and I also hope there is another agency from which you can obtain care. I also think you need a hired gun to protect you from all this "health care" management.

Big squishy hugs that would probably kill you and thus make Isobel Mackenzie and all the other fine, compassionate and conscientious people at Beacon very happy --

Your Eccentric Aunt

JaneB said...

Hi Beth,

You look tuckered out! Sorry it was another hard day, but at least things seem to be changing rather than being told 'wait a year and we I might do something', even if the changes aren;t all good...

at least you have lovely postcards to feast your eyes on when you are conscious!

yanub said...

I am very glad you have contacted the epilepsy group, and that means you won't be fighting this alone. What you are going through is exactly why people with disabilities are skeptical of "right to die" laws. There are too few protections to keep financially interested parties from using them as "right to kill" laws. Beacon needs to be known far and wide as an organization dedicated to the spirit of Dr. Mengele.

Maybe the epilepsy folks can also help you find a doctor who isn't put off by your case and has some actual interest in epilepsy and seizures in general. That would be novel and refreshing.

And any day that comes with getting something nifty in the mail can't be all bad. So, yay!

Carapace said...

Wow. That "care" director is really impressive. The whole care system is so....ugh. I knew it was designed to siphon out anyone who actually gives a hoot. I didn't realize it elevated people dumb enough to ask their clients for permission to kill them.

But hey, postcards! Yay! Is that one Aria?

cheryl g said...

It's the next day and I am still apopleptic and frustrated over Beacon.

Here we have a nice productive meeting and are feeling like things have been resolved and then wham

Anonymous said...

best of luck

Gaina said...

Oh woman, will you please get your ass to North America!

I can't believe they are basically trying murder you by stealth...makes you really feel the love for disabled people doesn't it?

Never mind, tomorrow I shall be uploading a short video of 2 chinese men having a ketchup fight in a plastic box...yeah, I didn't get it either! haha Hope it gives you a chuckle anyway :)

Dawn Allenbach said...

I have a couple friends who'd LOVE to know where you get your Yaoi postcards.

When your protest of DNR-bitch is setup, let me know so I can send chants from here.

Lisa Harney said...

Oh my god.

She's doing everything she can to set it up so they're not required to provide you with the level of care that you need. It's just so beyond the pale, demanding that you arrange for a DNR order. WTF? It's like she doesn't even see your life as human.

I'm sorry if that's slightly incoherent, but I'm angry. :(

Many sympathies, yet again. :( I hope you get someone who's trying to help people, not treat them as inconveniences.

Perpetual Beginner said...

My desk is developing dents. Someone seems to have forgotten the "care" part of healthcare. Best of luck with a) publically mortifying this disgrace to her profession, b) getting the actual care you need.

Nice postcards - I love the variety of really beautiful cards you manage to lay your hands on, and getting to see other people's is fun.

Tammy said...

A DNR? I just don't get it. How does having seizures lead them to believe that a DNR is even a remotely appropriate response to the care you need?? FOR SEIZURES!!! Holy crap. Un-
be-freaking-lievable. Oh Beth, get a lawyer.
I'm sorry you had ANOTHER shit day thanks to your "care".

Elizabeth McClung said...

SharonMV: Thanks, sorry I posted so late and got replying even later, but I am pretty punked. Even I however can feel the difference of saying, "I talked the BC epilepsy society" and "I have a 1 in a million disease" - while one tends to make people back away, the other means you are part of a group and there are people and relatives and friends of people with seizures....ergo, power.

My GP called after I talked to them and they recommended a specific neurologist (no, not AP), I passed that on and he is doing the recommendation.

Yes, nice pretty postcards, now I have enough for at least 4-5 weeks. Wee! Oh goodie, I like your packages, as they are gift that keep on giving usual! No, not vibrators, I meant your stickers.

RachelCreative: I would like each of the board of Directors to have to do an "intake", a "care plan" meeting, and a week of "Care" under the "care" of thier agency. Inject them with something to partially paraylze them and see, once they are dependant and somewhat or more helpless, if they "GET" it.

Oh yikes, English Men without shirts, - on vacation we called the UK tourists: "The lobster men and the leather women" - in that the men seem to burn almost instantly into bright red while the woman look like worked leather handbags, both slightly creepy, but since the British abroad tend to spend thier time drunk and on scooters hooting while driving on sidewalks (We were in Turkey), we tried to stay far away. (and we were from WALES - where the men are barrel chested and covered in hair!).

Yeah tough choice.

Ismith: As I pointed out, it wasn't just me, obviously some US principal thought this was a good idea for a student too - when your mind is focused on "liability" then anything idiotic and callous seems a good idea.

Anon: Exactly, after running everyone out of business and now they seem to be telling VIHA what to do, instead of the other way around - I thought VIHA who pays had some power - but I guess the Beacon's plan of "Hold the weak hostage" allows them to do what they want?

Tom P: I will look up that drug and mention it to my doctor, as we are trying to find something to help lessen the seizures.

Neil: I AM nice to my friends, I just don't like people who want to kill me, or leave me instructions to let them kill me.

That sounds like a GREAT baby shower - can all YOUR friends come and do a birthday present for me, it sounds like they all have fab taste!

Meredith: actually it is sort of tie between which causes more misery, student loans or chronic illnesses - on the one hand, you can still go to another contintent with a chronic illness, it is just when you get there, a student loan officer will be waiting with more forms to fill out.

Fridawrites: it isn't the most subtle of diabolical plans is it? now really, "Hey, sign this DNR so we can be incompetant and kill you or.....we will be incompetant and kill you.....or not treat you at all" - sort of makes you want to ask, "where is the 'Good cop' in this routine?"

Lene: Yeah, well Exactly!

Sly Civilan: Thanks - I did try today, hard, when you see little dancing DNR's in your head. But no major brain go boom so far today.

Neil said...

Sorry, dear, I didn't say it right. I was trying to say that in the future, when you're rich and famous, and POWERFUL, we'll be able to say that you were just as nice to your friends then (by which I mean the present, today) as you are now (or will be, in the powerful, rich future).

Cor, I think I'm catching it from Francesco da Mosto.

I KNOW you care about your friends. I also know that we'll brag about you forever.

Okay, I'm shutting up now. I'll just go back to my preafrooding.


A Bear in the Woods said...

Way hot postcards. Such pretty little pink knees kneeling on the carpet.
I hope you skewer the wicked Dr.McKenzie.