Thursday, May 17, 2012

‘Complex’: the Bane of dehumanized Bureaucracies (and my Birthday)

Linda and I have told ourselves, ‘well, we’ve hit bottom’ only to have, at least once a week, news that something we hadn’t even considered is being taken away. It is like living in a house on stilts, and after weather, rot and government agencies knock the stilts down, so we are merely floating in muck; we get mailed a fine for removing the stilts along with an ‘muck disruption’ surcharge.

‘Dying ain’t for wimps’ – a quote that made Linda give a short, bitter laugh, “That’s the truth.” We just don’t understand why the pragmatic obsession for the easy pigeon hole is the noise which fills people’s head. The quote is from the short article by Kath Murray’s ‘Three Things Every Nurse Needs to Know to Provide Excellent Care for the Dying’ the advice of ‘Stop (empty yourself of ‘YOU’ and see ‘them’), look and listen’

The view from my housebound internet window of how other people engage or spend time is brash, always busy and a bit bizzare.  There is always the 'click here', visual and magazine/TV/'minute news' mismash of entertainment/news that isn’t news/passions and treads which is the ‘stuff’ that OTHERS, other people seem to fill lives with. Does what a late night talk show person said matter?  It does to millions of people (I'm told), along with what this or that politician's spouse/offspring/sibling/sex toy has to say?  Does a star getting mad matter? Does what President Obama said about gays matter? No, because DOMA stops Linda getting a green card. And a green card could be a job in Seattle.  So do I have the energy to care about American Idol or Dancing with the Stars? No. Have I EVER had energy to see just one episode? No.
You (the RN) might hear, “It’s not being dead, it is the dying I fear”. You might receive questions about timelines, “How long do I have?” Or preferences, “I don’t want to die in pain.” Or limits, “I have had enough. I am tired. No more tests. I want to die.”
I cannot read from Kath Murray aloud without the quiver of tears affecting my voice, or the slow exhale from Linda. This is where we have been for months. Living isn’t hard; it is like when Shackleton used a carpenter’s plane for three days and nights to cut steps to climb over an iceberg in order to survive. Impossible, yes, but then so is everything that if oft done to survive.  Like Shackleton, sometimes it seems I won't, and will fall, and that's out of my control; yet it sometimes manages to keep going, this body (also out of my control when that low).  And sometimes I seem to progress, but that is what I do, all I do, every day now: survive. And when I have time to look up, or an hour out of a week of staying alive, I write and send postcards.

Yesterday Linda called Shaw Cable to tell them that the new phone/internet/cable bundle meant that we didn’t want to pay for TV cable, having had six months free.  Because, in the last six months Linda estimated watching less than six hours. The Shaw rep told her that she still had it free until December. ‘Oh well, Olympics are coming’ she said to me, and I shrugged in agreement.   Maybe we will see an hour of the Olympics, or two.  It feels like we are padlocked inside darkness, only able to glimpse what others call 'living'. 

With no job, dozens to hundreds of applications already out and rejected and getting around by putting her knee on a walker and scooting with her unbroken leg, after taping down all cords, Linda has more to worry about than TV. As for me, I finally was able to do the sit ups and push ups which the specialist recommended I do in order to push back the edema enough to skim on the edge of keeping me alive. After that, I had the energy for the next two days only to sit, to quiver, to shake from hundred of thousands of erratics and muscle spasms, and breathe.  Then for two more days, exhaustion. That is it.

From Kath:
“if we have stopped, looked and listened, we are invited to cross the street with the dying. We journey with them for a ways. We provide a safe place, a sacred place… When we listen, our role becomes that of advocate to communicate and ensures patients preferences and desires are met."
Linda and I know nothing of ‘a safe place’ – Shawn Tan of the highly recommended book, The Arrival, wrote The Red Tree, a short visual story about alienation, displacement, and the emotional landscape of depression and hopeless. “It was written for today” said Linda, reading it this afternoon.

But my birthday week was coming. I looked forward to when I would smile again. The knowledge of being alone, staring at my ceiling in the night, would recede for a day, or a week – May 19th-26th.  Birthday: Celebrate!

I was woken instead this afternoon by the VIHA care manager and my GP/Victoria Palliative GP on Linda's bed.  They tried to rouse me, verbally prodding me, questioned if my eyes were open enough, if I was 'aware.'  Once decided, they informed me they visited me to officially tell me that I was not dead. And in not dying by today, I had failed.  I was to be punished.  My care options were removed, care and caregiving for Linda removed and our financial burden doubled by the GP/Vic announcing he was acting to take me out of the plan which pays for meds.  For this, they visit.  Then leave.

It doesn't even hit me until hours later that this is the first time my GP has seen me 'normal' (as the few times I am well enough to visit him are the 'up' hours used for that month), or touched me in evaluation, or taken decisive action on my behalf.  He acts the zealous anti-advocate.

Linda was irked that while the GP promised home visits, he never comes, or even responds to desperate phone calls.  His one response arrived weeks after a week where I was fevered and my kidneys failing, I go a week into renal failure.  He decided he would only come when I am unconscious and Linda is not home.  I think Linda, polite as always, declined, then hopped back to her work desk.

We are both hurt and confused because we trusted them, and the system, and were honest, up front and obedient: if the specialist said 'do this' we did it, when the web page or handbook said 'ask X for assistance', we did.   We have asked and advocated for transparency and compassionate care.  We asked for appropriate edema medication only after it was noted by the GP doctor and waited several appointments before asking for medication for symptom management; the same with pain medication. And yet, while we were offering on paper and online everything from massage, counseling, volunteers, people to simply visit, to assistance in washing, in dressing, in transfers, in educating us on likely problems, no one ever acted, ever came, ever even pretended to care. Even during crisis, when we called the Emergency Response Team from Victoria, BC Palliative Hospice to aid Linda instead of going to hospital (as we were instructed to do), no one came.  So I was left lying in my hospital bed at home for days, overheated, fevered, unresponsive with the body shutting down.  And Linda alone to worry and wait.  Why treat us this way?

We couldn’t understand why?

But we accepted it and moved on, trying to find a new equilibrium, accepting that they were only allowing a partial assistance for meds. And now, that is taken away. Why?


Because Elizabeth is still alive, we are told.  And I was supposed to die after six months, maybe seven. 

We were ‘informed’ that our GP who is part of Victoria Hospice palliative team is removing me from the palliative program (though we never were able to access it, reasons yet unknown but regardless to any BC resident the BC government pays for most medicines if the patient is end stage terminal, needing to get 50% or below – the tests showed this; the standard used by the Victoria Hospice on ‘palliative’ I am between 20% and 30%, dipping into the 10% of unresponsive light coma).  By removing me anyway this financial burden has been added, not because the tests show improvement, nor that they demonstrate I am going to live longer than six month but solely because the doctor estimated I WAS going to die by now….and I haven’t.....yet. Therefore, we were informed, I am ‘complex’ (in the same tone people used to talk of ‘gays’, 'pride parades' or ‘mixed race’ or like relatives say ‘you know….those people’).

“I am not engaging in silliness” the doctor said, speaking over us as we attempted to clarify what he said, like: had he consulted with that name, address and number of Canada’s specialist on autonomic diseases? He plowed through us, almost physically pushing Linda’s broken leg aside with force to get away after saying, “I thought it would be six months but Elizabeth isn’t dead. So I took her out of the Victoria palliative program. And out of the BC palliative program.” He stopped to complain again how Linda’s need to use ice packs to rouse me to consciousness had made him late.

The journey with the dying is a sacred one. It has been for tens of thousands of years. Along with birth, coming of age, joining, it is the step into that great unknowing. Can that be crammed into the doctor’s eight minutes per patient, or the manager’s ‘alloted uniformity of care?’  Kath again,

“We need to stop. Put our agenda on hold. Get our issues out of the way. Quit worrying about the multitude of other things going on. Take a deep breath. Imagine clearing your brain of all the business and fussing.”
 In the rushing, pushing me awake, ‘just to say what I have to say’, there is no listening, only the flexing of ego. The GP disrespected his profession, his loved ones (those who have and will make that journey), and himself.

And in those few minutes, our lives suddenly got bitter hard. Hopeless. Our light barely flickering in a deaf world of constructed machinations.

"Who can receive care from Victoria Hospice?  People in Greater Victoria facing advanced stages of any progressive illness may register for Victoria Hospice care, provided that patients, family members and physicians all understand and agree that the focus of care should now be on comfort instead of cure. Typically, patients have a prognosis of 6-12 months. They can register with Victoria Hospice even before any of our services are actually required."
Linda yesterday found my grandmother’s passport. It was a birthday present of the taste of gooseberry pie mixed with salads topped by edible nasturtium flower blossoms: memories of sunday dinners.  Linda found it in the pink chair I dragged and pulled while lying on the floor in a fever, preparing for her return from the hospital.  Linda needed a 'safe place', somewhere to work, eat, put drinks down, I even wheeled to find romances at the library.  The Pink chair, extended, her leg up and resting showed Linda my grandmothers' passport: it had fallen not just under the cushion but down the crease and into the lining and stiches.  The passport lost when she and my grandfather moved into a care facility.  We have the chiar because my parents had already tried to sell it everywhere in town and had to get rid of it, and we were cheaper than the oversize garbage disposal fee. 

Each page a mystery and adventure: The Port of Sydney, Malaysia (been there!), Oman, Singapore (been there!), Philippines, Mumbai, Hong Kong just before it returned to China (been there!), and pages and pages of more stamps. The cruises, dreams and living of my grandmother passed to me through what my mother devalued to be thrown away.

I can relate to ‘devalued’ and ‘thrown away’

Dying was never meant to have timetables. Victoria Palliative Society, started as a cancer hospice, stated it became opened to “all” over 20 years ago, yet:
“70% of our registered patients have cancer. Other diagnoses include ALS, circulatory, neurological, respiratory and other chronic and progressive diseases.”
Cancer patients, ALS patients keep sane by realizing that while a stage four diagnosis or ‘five months to live’ doesn’t mean it HAS TO BE five months, it is also good to live each day, as best as you can. It used to be that once you were in the hospice society, you were registered for six years. That was changed last month to limit it to a year..or so. Still, for those who are alive after six months or nine, and yet still medically present as decling or show to be ‘a few months’ from dying, why are they not readmitted? Why were there not holter heart tests, blood tests for organ function done before this decision?  Why simply state that by being alive they are 'complex', discard them and walk away?  Or has this society determined, like forcing caesarians on women who are a day or week after expected delivery date, to demand force on this last aspect of life? Force or neglect the threat for those who still wish another day, and another. Is the ‘focus on care instead of cure’ mean that one must rush into death? To stop transfusions? Or taking insulin?

Is not life, however reduced from the daily hustle bustle, precious? Are those in that medical waiting place, listening as the body winds down, the song of the music box getting slower and slower not to be protected as the vulnerable individuals they remain? When a GP, a doctor aiding care of those palliative in that city, acts in a way which even APPEARS to act as bully or be punitive to someone in late stage degenerative disease, they represent the collective voice of the Province. Stating as leaving, ‘If you don’t like it, then find another GP’ gives that appearance. If he is the opposite of compassion, or an advocate, then who is there to advocate for the ‘complex?’ Or am I, to a cancer doctor, in a program built for end of life individuals with cancer, not the ‘right’ type of people? Are cancer patients who are still alive months later turfed as well?

I had assumed that neither were, it seemed the humane and compassionate model that the society was to be based on. And if we don’t ask these questions, who will? Who would want to make survival for the dying or those helping them more difficult? Is it not sensible, when finding those in authority who do make it more difficult, to find out WHY?

When my grandmother was alive the last thing she gave me her collection of postcards. It included the postcards that her father had sent her mother, as he traveled as a salesman. Four generation of sending postcards. Or three generations, as I do not have a number, an email address, a location address or a phone number for my mother, and that is how she prefers it.

The medico’s punish me because my birthday approaches and I haven’t died.
My birthday is here, and I haven’t died. For my grandmother, for me, for everyone out there who knows of isolation, of the times when noone understands, of troubles overwhelming, I will write. And post.

Life is precious, and so are people: share living with me. Celebrate. I’ll send a few postcards.


Baba Yaga said...

The truly strange thing is that the entire system seems to be there to serve the needs of the system, not of those in need of its services.

Oh, no, that's not that strange. But it *should* be.

Yea, I remember the weeks to respond to an emergency. Once you persist in surviving through crises, once your crises become too frequent or too disturbing or too difficult, crises seem no longer to be defined as crises. Surviving terribly is enough, or too much; living well isn't on anyone's agenda.

(But that was the psychiatric system, which is by definition based, though it doesn't admit it, on fear and force, with a hefty measure of blame thrown in. This is the treatment you get with a clear physical illness, of the sort society thinks it defines as blameless and meet for compassion.)

Kath Murray's article sounds well worth the read, and applicable to quite a bit of life.

"Hitting bottom" is a pretty empty phrase. There's always something below. And because humanity has almost infinite powers of not quite drowning, not quite drowned becomes a normal of its own. It's a terrible one.

Which is all a long-winded way of saying I'm listening, and wish I could *help*. Kneecap a doctor or two for you, maybe. Advocate. Something.

Denise (aka Jejune) said...

*Gah* your GP is a DICKHEAD.

We, at least, celebrate the fact that you're still here with us, and hope that you have as love-filled and happy a birthday as you can manage *gentle hugs*

Tina Russell said...

Man, that’s horrible. Nobody should punish you for beating the odds and _still being alive._ Ugh...

Happy birthday, darling!

Anonymous said...

hugs Happy Birthday
sorry things are bad please try to enjoy and rest a bit today

Devi said...

You are penalised for not dying on time? What is this, something out of Kafka?

Well, I for my part I'm glad you live. Happy Birthday week!

JaneB said...

Ah, how often 'the system' set up to serve becomes its own purpose, an ourobouros feeding on it's own tail whilst the people or need it is supposed to serve become it's enemy, a distraction from it's real purpose of eating itself and growing fatter...

While I celebrate that you're still here, and look to see if there are any dollars down the back of my couch I can send to help with climbing medicine costs, I am still so futilely angry with these people... maybe they hope if they get you angry enough you'll have a giant stroke and become simple, obedient and oh what an inconvenient side effect dead??

Sorry, not helpful, but oh, Elizabeth, you might live in a beautiful place, but it has some truely ugly, selfish people and systems in it.

Lorna, Bob and Liam said...

Oh, good lord, it just never ends, does it?

We're so sorry to hear about this latest travesty. We're truly at our wits' end to suggest how to cope with (yet another) bunch of ridiculousness. Yeesh.

It almost seems insensitive to wish you a happy birthday in light of all this... but we are glad you are hear to see it, and we do send our love and hopes for a better time.

Lorna, Bob and Liam

Wendryn said...

I'm so sorry to hear about even more crappy medical care. That's awful.

Despite that, despite the past few months, I hope you find a bit of happiness on your birthday. I, too, am glad you are alive.


Alex M said...

Horrifying treatment--I'm terribly sorry...

Happy birthday to a strong-ass woman!

Anonymous said...

This is why I am against socialized medicine - this stuff happens, because it doesn't benefit the system to take care of the terminally ill. If you can, you might consider a doctor in the US or Japan (though the US would be easier to get to). Please consider coming down this way - there have been others in Canada who were terminally ill who went to the Mayo Clinic here and were SAVED.

Stay strong, and fear nothing.

Elizabeth McClung said...

Anon: thanks - I keep on, keeping on - if I can hang on until funds for Mayo or some sort of sponsership fund - I already tried one US hospital which eliminated a lot of the diagnosis issues. Thanks.

Baba Yaga: I love your writing, as it fills in the gaps I have and the questions I want to ask, but didn't know how.

Denise: I cannot defend the actions of my GP - I have waited almost 4 years for SOMEONE, ANYONE to DO something instead of just going 'not my inch'.

Devi: Yes, becuase then I was assessed to determine if it was MY problem that I wasn't dying on time. haha. (crying and laughter the same).