Saturday, July 09, 2011

Is Elizabeth Dead Yet?

Am I alive? Well no, or not really fully alive, since I’m marked as Palliative but not 'the last three weeks' Pallative, or so they are guessing, based on not knowing the disease. That means I don't have to move into the hospice.

I had to drag myself out of the bed yesterday as the worker wouldn’t come, not to calls or bell ringing. I could hear her on the phone. She had ignored everything on the note, and when I asked her phone Beacon, the care agency for me, she said, no, and “you don’t take that tone with me. Once you change your attitude..”

I pulled myself off the floor using the kitchen jam. “Do NOT blackmail someone in their own home. Just now you were on the phone with Beacon….call them again!” and I fell to the floor.

“Move away, you're blocking the door.”

“I can’t” I told her between breaths, “I’m on the floor, assist or call Beacon.”

She tried our phone, then started slamming it against the counter “JESUS CHRIST! …ohhh" the worker growled, "that she would say that to me….then blocks…..ahhh!” (she didn’t know how to turn off the phone so this actually ended up on Linda’s messages.

She got Beacon and told them I had threatened her and then put all the locks on the door (it was still unlocked). I was still curled by the door in panties as I hadn’t had care to dress, food or drink. It is becoming a rather odd and similar experience to end up that way after ‘care’ from a Beacon worker.

I finally got to talk to the RN. “Hello, is this Elizabeth?”

I said, “This is Dr. Elizabeth McClung.”

There was a long pause and then, “Can I please speak to the client.”

“This is Dr. Elizabeth McClung”

With a question in her voice she asked, “Are you receiving care?”

“No. That’s what I wanted to speak to you about.”

Another 30 minutes and another RN later with me in panties and nothing else and the worker standing in the hall with the door fully open.

“No, she ignored the instructions on the daily note.”

She stepped in from the hall and said, “Lie! There was no note.”

I pointed to her bag, “Odd, since you put your bag directly atop about 1/3rd of it.” She grabbed her bag and tried to destroy the note.

There is a certain ‘ass covering’ action from some workers. The regular worker was moved elsewhere and she was another who had been thrown in, hadn’t read the care notes, hadn’t read the care plan, just put her bag down, and called beacon about what pills to administer (written in the care plan)

Eventually Beacon wanted to speak to her, she grabbed the phone and leaving the door open went quite a ways down the hall. Since it was her phone I slowly closed the door and silently locked her out. A Beacon manager called me and needed to see the kind of note that DAY. I told her that we had sent it to her, then sent it AGAIN last month when this happened, and the VIHA manager had it as well. She understood what went wrong, and I asked her to stop sending replacements and stealing the regular person or have the person READ the care plan before coming (they can download it or access it online). I said, since she wanted this all resolved, could I have her name so I could know who to refer the RN’s to next time.

“Oh, I’m just a temp filling in and there is no point, as I won’t be here next time.” She said not giving her name.

Sigh. I called Linda to let her know she would need to do both her work and my care later.

There have been a lot of rapid declines in health in the last two weeks. Beyond the problems with heat, now the autonomic function to tell me whether I am hot or cold is dead. I alternate between chills and full body goosebumps to overheating in minutes and then back to freezing for three hours, all in the same bed. The kidneys stopped, have been not working off and on for a while, but stopped, bulging and pushing the skin in the back out. I lay on them, the pain bearable because of the amount of pain elsewhere. The Fentynal has been increased 1,000% from the first prescription and I am over the maximum of the ‘breakthrough’ pills also, taken ever 3-4 hours.
Edema of the brain, chest, upper arms, groin, and face could be both lymphedema – a failure of the lymph system or Super Vena Cava Syndrome or something else all together. This week I didn’t really eat and lost a lot of weight, last week too. The nausea makes it hard, and often I am paralyzed when I wake up, so unless someone comes, there is no way to move. My hands wake in fists or clamped to my other wrist, due to the pain.

I have been having seizures of the body, arms shooting off into space or my lower legs and feet going onto point, and waking me up from the pain. I’ve woken three times from biting my tongue in my sleep and also my lip, my cheek. There are strokes which make the face droop and it harder to swallow anything. But no, no body yet.

When I can, I fight, and when I can’t I resist, and if I can’t do that, I just hold on, or try to find a handhold.
That’s all there is. Except I decided I am a queer pirate: I’m here, I’m queer, run in fear!

I watched Machete, and while it gets 71% on IMBD and 73% from critics at Rotten Tomatoes, none of those critics were female. I must miss the part of the brain which finds a guy who attacks people with garden implements (in three to four different times of the movies), has sex with naked women every 20 minutes, and goes against the anti-illegal Hispanic vigilante group with a Hispanic collective… jacked up bouncing cars as a super film. (I watch it so you don't have to - I showed part to Linda, she was....less than impressed).

Because what else is there to know about Hispanics except they like to have cars that bounce – bounce, bounce, bounce: there are the prolonged shots of outside the vigilante base with cars and trucks bouncing, bounce, bounce (and the guy pushing the freeze ice cream and drink cart in the back). Bounce some more, then break through and lots of shots of vigilantes being bounced on by those ‘wetbacks’: bounce, bounce, bounce. Oh look, Machete has an extra large machete (5 feet long) to attack with (which has no symbolic meaning at all).

Quote: “Oh, he is a Federale, don’t you realize that is like the FBI, CIA, NSA, police and SWAT all rolled into one but tougher!”

The vigilantes hire a ‘pro killer’ who has a late night commercial showing him doing push-ups.

Spare your eyes and watch The Man with No Name DVD’s with Clint Eastwood. Sergio remakes the Seven Samurai, while Machete remakes the song “Speedy Gonzales”. Ug.

I’m off to sleep more and then and go see the outside world.
Surviving is hard. Some weeks it takes all I have to do that.

It is when I feel most alone.

So close, but no, the dying didn't stick.

Port Townsend trip next time, okay?


wendryn said...

I'm glad you are alive, at least. I'm sorry that the care workers have been so awful, and I hope at some point they manage to figure out how to do their jobs.

I'm really glad you are still here. *hugs*

Raccoon said...

Isn't "Machete" the one where Rose McGowan's character has a machine gun for a leg?

Yeah, I saw the ads. Obviously didn't impress me. I like some of Clint Eastwood's stuff, though.

I think that, here in California, Beacon would have been shut down a long time ago. Heh. Hard to believe that the government down here feels more responsibility for healthcare agencies than they do in Canada.

Baba Yaga said...

Good grief, Beth. I cannot conceive what makes people behave in such ways. unfortunately, they do, and it's people like you who pay.

"That tone" is terribly telling, isn't it?

(I like, though, that you don't roll over. Not rolling over is a lot to require of someone who needs the level of care you do, though.)

It does strike me that that level of neglect counts as abuse, and might be worth reporting to the police, rather than the agency. Maybe not. 8-(

Yes, surviving is hard. And lonely. You do it remarkably *actively*, but .... wish we could take away that pain. It seems almost impossible that it should keep getting worse. Blasted disease.

I hope you get to enjoy the outside world.

Elizabeth McClung said...

Didn't make it outside today. Up six hours, the writing made me dizzy and my head, the edema has nowhere to go so it can press so hard that the brain actually moves center, pushing the right and left hemisphere's off line. Can't read when it is like that, all the words go to garble, lose function of the hands and what is up and down.

I went to take my two hour nap.....I woke up seven hours later. I will try again. I want LIFE, not just a breathing body. It was as hard to write the blog today as it was to get through that lava and back a year and a half ago. One key stoke at a time, focus on target, focus and ignore the body, when you fall, when your face hits the keyboard get up, and keep typing, until you hit publish. Without Linda to almost carry me, I wouldn't have made it to bed.

Tomorrow I go out, first thing.

Wendryn: Still here, just not so sure about surviving the 6 days linda is gone.

Raccoon: Beacon has expanded and expanded since the government here in BC went into freefall. Linda said in her group, who all hate Beacon, one person said that they practice the art of 'Sphinctus Protectus'. The lack of ability to sue, the lack of workers to wear name tags (supposed to be a requirement) and the avoidance of giving away any names from RN's or supervisors mean that the whole, 'not my problem' culture of call centers has now moved to not just basic care but Task 2 care of life sustaining drugs, opiates, and access to things like water. Home care is still better than facility care, which makes no provisions for the differences in diseases, all are treated as 'sick' - a willing ignorance.

Machete came out last year I think, it is the guy who carries a machete and chops it up, suppose to be 'Grindhouse' of Drive in's and dollar theatres (only I WENT to dollar theatre's and Drive in's and they showed Chucky, not this - besides, a Drive in is only as far away as Port Townsend). I don't understand the ratings.

Baba Yaga: Yes, it is the reason I fear my weakness but anger and adrenaline can make me SEEM more able for a short time, but the payback is huge.

I have tried reporting workers to the police based on actions before, and when they hear 'care' involved, they say 'talk to the agency' and hang up, but I should try again.

I just wanted people to know that a black screen or a date from a week or two ago doesn't mean I've gone, it means bad things are going on, it is like the curtain you hear screaming coming from behind.

SharonMV said...

Dear Elizabeth,
For the bad things - I can't express the depth of my sorrow or anger on your behalf. I fervently wish that you didn't have to endure bad things from other people on top of the illness. I just don't understand how someone could treat you like that. You do fight back, you demand the respect that is due you, making the RN have to remember that you are a human being (and an educated one). But that means nothing to them. They are the ones lacking humanity, not you or the other "clients". It is true that the agency creates the culture, but the individuals go along with it.
I don't like the black screen. When you aren't blogging, I hope that you are resting or doing something you like, but I always fear it means bad things & it tears at my heart. I miss you, but that would be OK, if you were OK. I'm sorry the blog takes so much out of you. I know it is important to you. You are a writer. Your life is important, your story is important.

Hope the regular workers will come every day and do a decent job.
So glad you're NDY.

Love, Sharon

Elizabeth McClung said...

Apology: Comment mod has been added due to some spam attempts lately, I hope to clear this up and get back to completely open commenting again.

It means I or link just has to click, approve, on your comment - for a few days, sorry.

Neil said...

I'm not much for movies these days, as I find the soundtracks kinda weird: why does the music have to be so much louder than the dialogue? I'm also not a slasher or horror movie fan at all.

On the other hand, I'm addicted to Torchwood, but it's only because of Eve Myles's accent. Yes, she's attractive, but it's her voice that does it for me. Now, if she'd only do a movie with Sean Connery, both my Beloved and I could melt at the same time...

It's good to hear you're not quite dead yet. And I can't understand how Beacon stayed in business for more than a week or two. There's a serious lack of care in management somewhere.

If Linda has a recording of the woman, a visit with someone from the human rights commission might help. But ANY change will take a long time, because Beacon is so entrenched.

Oh well, you're alive and we love you and I hope you're alive for a while.

Love and zen hugs,

Tobi C said...

Oh Beth. It is horrifying to me that some people go into care work who obviously do not care about any one. Beacon sounds just horrible. NO ONE deserves to be treated like that. Being a temp who doesn't know very much would be understandable (we've all been rookies at least once), if they were at least honest, RESPECTFUL and kind about it. But this is just shameful. I am so sorry you are not only suffering from your illness, but suffering even more from the lack of proper care. I hope, hope, hope you get a reprieve both with your help, and with your so-called caregivers. Have you or Linda ever taken this up with your MLA? Maybe Linda could on your behalf when she has time.
I pray you get to have more LIFE, not just existing and enduring.

Anonymous said...

Dear God, what kind of bozos do they have 'caring' for ill people? The actions of that agency are just horrendous. If someone did that here in the States, they'd be liable to lose their license.

You have NO idea how much I wish I was able to come and help. If I was within driving distance, I would. Stopping this kind of shit is one of the reasons I became a nurse in the first place.

As for Machete: my husband and I loved it. We both have little tiny 13 yr old boys inside of us though (probably why we are such a good match), and well, Machete was made to appeal to 13 yr old boys. We both giggled through the entire movie.

You are still very much present in my life. I hope you can get out very very soon.

Bonnie (from Columbus)

Lene Andersen said...

I wish some intrepid reporter would do an expose on the state of homecare in Victoria based on stories from your blog. It's shocking. But based on my experience with care, not unheard of. Sigh.

Glad you're still here, hate that you're suffering. Sending you hugs.

Kate J said...

Shock horror, a 'client' who has the audacity to complain when she doesn't get the 'care' she's supposed to be getting from the 'carer'?!

I do hate the way that the word 'care' has been distorted, corrupted and devalued. When I was caring for my mother, I was doing just that, caring. Linda cares for you. These 'carers' at best provide essential services (and at worst fail miserably to do even that).

There are huge debates in UK at the moment about 'care'. At base, these debates are all about numbers and money, with occasionally the distant and faint voice of a family member - or even, heaven forbid, of a 'care-recipient' - being heard. Recent example, a woman who has had her night-time 'care' cut and is being told she'll have to wear incontinence pads. She isn't incontinent, just needs help in the night to get out of bed to reach the loo or commode. She's a former ballet dancer who has had a stroke. She just lost her case for the night time care, and has described, graphically, the misery of having to lie all night in a soiled nappy.

I do hope, so much, that you get some people who genuinely care... but even where they do, I'm betting they're on a too-tight schedule, and continually having their rota changed because the care company is employing too few people on too little pay and with too little training.

Not making excuses here, Beth, you deserve proper care, as does the ex-ballet dancer and thousands of people who sadly have no voice, no blog, no advocate, no loving partner to fight their corner for/with them. I hope things pick up for you.

Looking forward to hearing about your weekend... I assume some good times there?

Love & peace

tara said...

I'm glad you're still here! The way that your "care" workers are behaving is completely appalling and you deserve so much better than that.

Diane J Standiford said...

I am learning about caregiver companies and their "caring" employees...sigh. Your story makes me want to grab a machete and...well, Port Angeles is so beautiful. I hope you are there right now.

Anonymous said...

I wish I was closer to help in any way I could. Am sending you both my love and prayers xx

Noisyworld said...

OMG there are STILL human beings (let alone carers) who treat other people this way. Grrrr >:(

I'm always glad to see another post, I hope you feel well enough to tell us about your trip soon, gentle hugs :)

Tina Russell said...

Hey there, Beth. Ugh, sorry to hear more “care” worker horror stories. I’m so mad at them for mistreating my friend. You do so much to preserve your dignity while dying and they keep trying to break it. That’s so unconscionable, it makes me wanna hurl.

Sorry that movie sucked. I hate being disappointed by movies, especially ones that everybody else liked and then I’m just left wondering what I’m not seeing.

Caroline Stickland said...

Dear Beth,
I've been reading your courageous blog for a while but I haven't commented because I don't know what to say that would be of comfort. I'll just say now that you and Linda are in my thoughts every day.

JaneB said...

Thinking of you! Beacon are a dsgrace... but you're still here, which is very good news.

Elizabeth McClung said...

I hope to tell about the trip soon, many of the pictures are ready, just need enough hours where I am not punked.

Have met several people who use Beacon since I wrote this and all have strong negative feelings - I do wish there was SOME story or investigation, as with 6,000 people dependant on them, it seems how we treat the 6,000 most vulnerable citizens isn't a story unless a WHOLE bunch of them DIE.

Thank you for your care and concern, tough going some days but working so things will be better one day soon, I hope.

Anonymous said...

Still watching, reading, caring... loving you and Linda.

Lorna, Bob and Liam said...

Frick. I'm the most recent "Anonymous" comment. Apparently, I am also "still learning how to use this technology." *sigh*

Aviatrix said...

You go girl. These "care" workers are crazy. I guess the 'normal' care visit they are expecting is to someone who lies placidly in bed and takes the pills they are given?

I would think that "Assist client to dress and perform personal hygiene," "provide client with food and drinking water on request" and "client is an intelligent human being with mobility and occasional speech difficulties; treat her with respect," would be a pretty normal set of orders.