Saturday, October 15, 2011

Day 44 of the shattered city: Beacon's care agency zombies continue onward

Beacon just called. Tonight’s evening shift, our only shift with a regular worker, is cancelled with less than 12 hours. Three hours notice is common. We only have a vague idea of how they make the plan, as the workers we like never end up on it. We think a Ouiji board might be involved.
No consistancy in care for 1 or 2 weeks is sad, over six weeks is as one supervisor states, "Appalling." it means I won’t get a shower today (read ‘this week’ – still waiting on the one for last week). I ate my second meal in four days. Thank you Linda.

This is NOT Linda’s fault. This is why Linda is emotionally shattered, and I was, ‘paralyzed with body in shock’ when Linda returned today to find me with a ‘grey face and your heartbeat is too slow.’

The worker they sent yesterday did not know how to dress me. I still hadn’t seen that worker after three hours and found her as she was getting ready to go. “Have you read the care plan?” I asked.

“Oh yes.”

“How many health checks did you do?”



A blank look.

“Someone in this apartment is sick,” I asked her, “right?”

“Oh yes.”

“Did you check her health?”

“Oh yes!”

I tried to keep a blank face, as I looked at this person who I had not seen at all, and not once came to check on me. “And how many did you do?”

“I did a couple.” She said, her eyes drifting away.

“And how were they?

“They were very good. All okay!”

I nodded slowly. I was naked except for socks. I was waiting for help to dress, and had gotten most of the clothes off, but not on. She didn’t seem to think that a naked woman asking how the ‘sick person’ was doing was unusual.

This is one of the better workers they have sent. She is not coming back.

Rule #1: The sick person is always the number one priority of the care worker.

That is absolute. Dishes are not more important, whether there is good computer access in the apartment is not more important, reading what other workers have written for three hours is not more important (another keeper, that one). I am. They are paid to: Assist me in basic living care including DRESSING, SHOWERS, TOILETRY, FOOD and MEAL PREPERATION, GIVING MEDICATIONS AS NEEDED, CLEANING UP FROM ABOVE INCLUDING WEEKLY LAUNDRY.

I put that in all caps because this is not rocket science. Every worker sent is, Beacon tells VIHA, trained in oxygen. Only 1 actually is. I have not had assistance dressing since they cancelled (with no notice) a worker and sent, by accident, one of the better workers. Which I have not been able to have since.

If you can’t help someone dress, help them put on some jogger bottoms, and a top, then why are you still employed?

Linda is emotionally and physically exhausted by up to 24 of these ‘temp’ workers all of which are to arrive having read the care plan AND ready to work. Except they haven’t and aren’t. Linda put a sign on the door last week saying, “DO NOT wake Beth, note on counter.” On the counter the top of the note read, “DO NOT wake Beth!!!!” And what to do once I did awake. The worker turned on all the lights, and shook me upon arriving saying, “I’m here.”

I am getting less meals a week than days, and we are both emotionally frayed. My body is collapsing from the inability to have a regular sleep and wake schedule, much less exercise.

Linda is emotionally depleted and physically exhausted and simply stares at the phone as it rings, and rings, every day. We are to adjust our schedule, until 2 hours later, and we are to adjust it again. No one is ‘in charge.’ They are ‘all doing their best.’ The daily appointments, with palliative, with doctors, with whomever it is today means stolen sleep and 12, 14 hours without food or medicine. Except my heart starts to fail at 4.5 hours without medicine. My palliative hypersomnia is seen an offensive inconvenience. Some have postponed indefinitely. After all, one only works one day, 4 hours a week, another works 3 days, but only 9 to 3. “Why aren’t I working around their schedule?” They demand, threaten my care.

Does that mean you can improve it.

I don’t do that aspect.

I lie, less like a fallen angelthan a feral Zombie, tongue poking out of a mouth making eerie moaning noises. Everyone seems to have forgotten the point of this: Patient care and quality of life.

Linda isn’t paid to deal with these lists of calls to be made. Of cleaning up the emotional and physical mess the workers walk out on. Nine workers at three agencies are changing the wording sent to workers. One worker followed the instructions and ended up trying to assist the neighbors.

It is Monty Python, a world upside down (calling Terry Gilliam for illustrations!). A world with a line of seething Care workers, prying the door open, demanding that we take care of them, assist them, help them until we are drained.

I can assure you, these vampires don’t sparkle


Noisyworld said...

I'm impressed either of you are anywhere vaguely-near sanity.
As I know virtual hugs don't hurt like real ones here are some to save for when you need them: ((hug)) ((hug)) ((hug)) ((hug)) ((hug)) ((hug)) ((hug)) ((hug))

Vanessa and Gang said...

I should move into your spare room and pop out and taze the careworkers to make sure they are awake and doing their jobs.

*zap* *zap* "get to work!"

GirlWithTheCane said...

Document everything. Write a letter to the agency, tell them that you're going to cc: both you MP and your MPP, and that you'll be going to the media if the situation doesn't improve within a week.

At the least, your file will be flagged as someone that needs more attention; they don't want negative publicity.

It's a bullshit system when it comes down to tactics like that, but neither of you can keep going on like this.

I'll blog something about this, if you like. Let me know what you'd like used.

- Sarah

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wendryn said...

Crap. This whole thing is crap. I wish there were some way to get tit through their heads that you are the person who needs help and that they need to actually do from work.

I agree with Vanessa - zap! Heh.

GATE Exam said...

very nice sharing.

Emily M. said...

I've been reading your blog for a few weeks now. You amaze me, but I also know just a small fraction from multiple surgeries for Crohn's and having to rely on other's that words like that can't help the physical reality you are going through.

I am so sorry and every time I read your blog I send you prayers and thoughts and support, but I also know that can't really help, but I think of you and appreciate your words.

Your blog is done so beautifully and your writing is amazing. Your blog with the crit for that article you read reminded me of the best of my days in grad school.

So thank you for your words, the gorgeous anime art and I wish you somehow better care and better support. It angers me what you have to go through.

SharonMV said...

It sounds like a repeating nightmare.
So awful for you both. I no you and Linda have tried so many times to get a set schedule and some decent workers. Did the "I'm here" worker do anything for you after she woke you up?
I hope you get some decent care and help tomorrow.

Love, Sharon

Anonymous said...

As a RN myself for 37xyears and now retired this sounds like a scene out of a horror film!
I do not live in your country and just cannot imagine that these things are going on or are allowed!!
You need to seek the media for stat attention!
This type of treatment to another human being is totally unacceptable!!
I have no words!
I am praying for you Beth and for you Linda.
God be with you;
He is your only hope.

Baba Yaga said...

Merciful heaven.

I wish I were closer. I'm pretty useless, but evidently not as useless as those paid to, um, attend to your needs. Pretty simple and readily identifiable needs, too.

cheryl g said...

I am told these careworkers must have training but I am beginning to doubt they are tested for basic reading and comprehension skills or even common sense. Naked client - help them dress seems obvious.

I do wonder what the name of the course they seem to all be given in baldfaced lying is - Prevarication 101:CYA For Self and Company Benefit?

I am thoroughly disgusted by Beacon and wish your case manager would do something to help instead of coming back to Linda with a list of supposed improper use of workers claims.

I am glad I cood do some cooking and stuff this weekend to let you both have some rest.

Kate J said...

Shocked beyond words. Again! Plus, your other friends have said everything that needs saying... but I am horrified at the lack of basic humanity in the way you're being treated by these so-called care-workers.
Just hoping you'll get maybe one or two who do care and actually do what they're supposed to.
Love and peace

annette2 said...

How about their Better Business Bureau rating? I see it's an A+ which is totally undeserved from everything you say.

You are both doing a stunning job of telling us what you are going through. I wish, like others, that we were not a virtual village and could bring you casseroles and help


Alma (formely from GCN) said...

Beth, I'm totally appalled by the lack of care you are getting, and it seems to be generalised with most of the carers that you get. Wow !

There must be somewhere you can complain about this, as that is just not right.

I too wish I lived closer to you. I have no training in care, but helping someone dress, wash and eat is basic human care, it doesn't require training and it seems I'd do a better job than they are doing.
I do wonder at times if these people ever put themselves in YOUR place.

I pray help comes from somewhere, that they send better carers for you, and I pray for Linda to be able to find a way to recharge somehow.

I don't always comment, but I keep reading your blog (the only one that I do read), because you're such an incredibly inspiration to me. You have to be THE strongest person I have ever known.

You are Loved.

Massive hugssss

Neil said...

I realize that you may not be a typical terminally-ill person, and that your needs are a little more specific that some of Beacon's clients, but TWO notes get ignored? I sit here stammering and incoherently muttering oaths at them.

It would be interesting to know if Beacon treats all the clients the same way they do you. I suspect they don't, for that would require too much organization.

Beth, would you object if I sent an email to your provincial Minister of Health, with copies to your MLA and Premier Clark? I would have to explain a little of who you are, but I'd mostly explain that one of their citizens is not receiving the basic health care needs.

The two of you need some sort of advocate to deal with VIHA and Beacon on your behalf; someone with the clout to get proper care for you.

Oh, I wish I could be there to help you two somehow!

Love and zen hugs,

Lorna, Bob and Liam said...

Neil and I are on the same page... I was struggling with who could possibly intervene with various authorities on your behalf. I was wondering if there might be a disability lawyer in Victoria who could be convinced to do some pro bono work - specifically, writing a letter to Beacon, cc'd to VIHA and the Ministry, threatening legal action. If you'd like me to pursue this with a few phone calls, I will - but like Neil, I would need your permission to disclose some of your personal information.


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