Beacon Home Support, (Victoria B.C).: Where ‘Care’ becomes ‘Callous’

“Who do you want?” The voice at the end of the central line asked irritated (250.658.6407).

Beth: “The supervisor’s manager please, I’d like to make a complaint.”

“They aren’t here.”

B: “Um, yes they are, it is ten minutes until end of shift (4:50 pm). I’m naked, I’m on the floor, I need oxygen, I haven’t water or food, nor have I had care for two days. I’d like to make a complaint.”

“(sigh) They are here, but they don’t want to talk to anyone, they are off soon.”

“Who DO I talk to about complaints”

(pause) “I’ll put you through”

CLICK “You have reached the voice mail of Beacon Community Services, please input the four digit number of the person you are trying to talk to…or press zero to return”

(different voice), “Hello”

B: “Hello, I called to make a complaint but was put into the voicemail system, can I please speak to a manager.”

“They have all gone home.”

B: “It is 4:55 and they were there five minutes ago.”

(long pause), “They don’t take calls after 4:30”

“I am naked. Naked. I haven’t eaten in two days. The worker (temp as regular is on vacation) didn’t come yesterday.”

“Hold on……”

Night RN: “Hello?”

“Hi, My name is Elizabeth McClung and I’m naked and on the floor, I have no water, I have had no water, I am desperate.”

Long pause, “Elizabeth….you had care today.”

“Yes, and though I asked and asked, she didn’t give me water…or food…or panties. In fact I spent a 33 minute conversation with a manager there about it. Do you know who that was?”

“No. This is the night nurse, I can’t do anything for you.”

“I’m helpless, I have had no water, which my condition requires, no oxygen though it was asked for repeatedly, and no food, and I’m naked. NAKED.”

“No, you’ve had your care. I could send someone to you.”

Beth: “Thank you.”

Night RN: “…except you are three hours over for this month.”

B: “I am over for the month coming up?”

“Yes”

“How can I be ‘over’ for care for the next three weeks of care I haven’t even gotten? Can’t you take some off.”

Night RN: “That is not Policy.”

B: (desperately) “Did you count that worker that NEVER CAME yesterday? And the worker that had two manager calls on them today? The one who didn’t give water?”

Night RN: “No, you had care today.”

I start to talk but am cut off as she continues, “I’m the night RN, I can’t discuss policy.”

B: “So should I tell emergency that ‘Beacon sent me?’”

RN confused: “What do you mean.”

B: “When I call 911, do you want me to tell them that ‘Beacon Home Services told me call.’”

RN: “But it isn’t an emergency.”

B: “I am end stage with a neuromuscular disease, with no oxygen, and I have had no food or water for two days, I’m stuck naked on the floor and according to you and the manager I want to complain about, I’ve HAD ‘care’.”

RN: “Can you hold on?”

B: “YES!

15 minutes later, Linda comes over, and put on the oxygen, and asks me what I am doing. I try to tell her, she gets the drift. After finding out how long I’ve been on hold she says, “I’ll call them on the cell phone, they sometimes just put you on hold if they want to get rid of you.”

Beth: “No. Really?”

Linda gets through, “Hello, my partner Elizabeth McClung called you 15 minutes ago, can you tell me where you are in regards to resolution of that issue? Oh?”

The never ending hold music suddenly ends, and the night RN is back, “I’m going to try to connect you with someone.” She says and leaves me wondering what she was doing before.

I finally connect to Supervisor Rational. In fact that’s what I say, “Thank you! You’re the Rational one.”

I had talked to two supervisors, one when the care worker was there for an hour, a new and temp worker (as I was still naked, I had no water and no food, nor did it look like I was going to get a bed transfer and after five asking for water to which she said yes, no water), and the second when she refused to leave or help but OCD’d on washing the same dish over and over again (which I think might be why she is available for filling in for vacation shifts). This was the first supervisor, who had told her to get me water, food and clothes, and authorized extra time. I explained that she didn’t, but would just keep washing over and over again, and when I called in to report this I was threatened by the Beacon supervisor who said ‘Now dishes has been a reoccurring problem, you aren’t asking her to do dishes used by Linda?”

“No,” I told her, “I asked her NOT to do the dishes, the note Linda left asked her NOT to do the dishes, I need WATER, it hot day after day and I haven’t had water for two days, or care, I need water.”

Wacko Supervisor: “It still seems that the dishes are a problem though.”

B: “Has ANYONE made a complaint of dishes? I know of only one complaint of dishes THREE YEARS ago, and you saw my apartment, I have exactly 26 inches of counter space…how many dishes is that?”

Wacko Supervisor: “Yes, three years, an on-going problem.”

Beth: “Water?”

The next 33 minutes were spent with the supervisor reading my care plan which says lines like “please do not rip chunks of hair out of Client’s scalp when brushing”, and asking me where the care plan was, then going into a panic because it is in a red holder on the fridge when the folder is yellow. There was much furious typing about whether it was at ‘eye level’ or not. Care? No. But I passed out so I guess that is how the call ended, as I have no memory.

Rational Supervisor: “So she didn’t get you any of those things?”

B: “No. I asked for panties three times, but no go, water five. No, no food or water, or clothing assist or oxygen.”

“We’ll make sure never to send her again.”

B: “Yes, but again, now past 5:30, no food, no water, and no one yesterday.” I pointed out that when Beacon came to force me to sign waiver on all task 2 for workers (like if they give me triple the amount of drugs and kill me, they aren’t liable – if you don’t sign it, you don’t get care), I got a signature from them which accepted all liability for task 1, which includes food, water, oxygen, dressing, showers, etc. How did they want to pay? In court? With VIHA? Or could I get someone to HELP ME.

By this time I was exhausted and Linda took over. The individual was to call her back by 7:20, so she could get a nap. He called later and then asked if I was lying, “We are having some inaccuracy in reports.” Well, yes because when I told the worker after almost two hours that the manager wanted to talk to her, she opened the fridge instead and took out the water and said she had been trying to get me water. Linda confirmed that no, no one had come yesterday and that I was paralyzed all day due to the pain and heat locking my nerves and muscles and could just lie in bed in pain for 27 hours, not even sleeping. And that she had found that the worker had taken the note, folded it and put it aside, including the writing on it, “Do NOT do dishes”. Wacko Supervisor had earlier been obsessed with the fact that she didn’t have a copy of the note, can that I fax to her.

“Well, I’m on the floor…”

Wacko S: “I’ll try and get it from the case manager….”

It has been rather up and down here, if up means down and then further down. I didn’t think anything could be worse than those hours lying there, unable to cool off enough to sleep, in extreme pain. Not able to drink Tuesday, I was desperate to drink on Wednesday, if only the worker knew how to pour water. Am I dehydrated? Check. Have I not eaten a meal since Monday? Check. (Linda did break three small lemon cookies into my mouth, and watched to make sure I didn’t choke on them, at 4:00 am Wednesday Morning, as I couldn’t use my arms or hands). Are my fingertips purple, and hands dusky with the last two fingers purple to dark blue/black? Check.

How do you avoid this from happening if you are alone as I am most days? Check into a facility EXCEPT not just EVERY worker but others who get care from Beacon say, “Do NOT check into a facility…if you want to live.”

Why then could not Beacon Home Support send someone over to do what the person was sent to do, help me get in bed, get water and food? Because according to them, the worker HAD been sent, and if they didn’t do the tasks, as the Wacko Supervisor and RN Night said, “That is something we look into and get back to you?”

Beth: “When? Like Tomorrow, two days, three days? How many days until I can get underwear?”

Previously, when asking the Executive Assistant of Beacon Home Support of the CEO Isobel Mackenzie (also trustee for the Victoria School Board, so enjoy..) if ANY worker had been let go for incompetence, she said she was unaware of a single incident. Wacko Supervisor had told me that if my workers couldn’t understand me or English, to have them call her. Which begs two questions: why send workers who can’t understand English to a residence with all notes in English and two, how am I supposed to tell them to call her?

Because Beacon is subcontracted by VIHA, a government body, even though Beacon Care is the ONLY care support for the City, there is no way to make an official complaint. As only those in VIHA can have a complaint done against them (though due to backlog, the 30 day required has been stretched to six months or longer for a reply). So there is no complaint system in place at Beacon. And though it is requirement on paper that VIHA not Beacon if annual ‘satisfaction’ surveys are not done payment should not be made to Beacon. But none have been done as long as I have been able to find anyone receiving or giving care. The Manager at Beacon said it was ‘due to cost’.

When the file for a person with a known late stage neuro-muscular illness (they were aware of my status in the limbo of entry into pallative care – requiring letters from many people away on vacation) shows up and they say they are on the floor, and haven’t eaten, drunk water, or received the oxygen the condition requires they say they ‘can’t’ send anyone. Why? They ‘project’ my care will be 3 hours over the allotted hours by June 30th, so no one can give me a drink NOW, not until the NEXT care worker comes. And since the worker came then those hours are credited against my hours, whether they worked or not. And it is a policy and no they can’t explain it or discuss it.

The network of family caregivers and those receiving care paint a picture that would result in a class action suit in the USA, as they service over 6,000 ‘clients’. But knowing for example that I need oxygen, the Wacko Supervisor had me talking for 33 minutes until I passed out. The more they talk, the closer to 5:00…..I mean 4:30 and end of shift. While no regular staff is on during evening or night, when the highest amount of medical problems will occur.

I have the strongest feeling against hypocrisy and wonder if Beacon’s parking lot even HAS a blue badge spot (if typical of Victoria that would be a no). However, besides the half dozen thrift stores, several care centers, homes, meals on wheels and all ‘client’ care (but no way to make official complaints?), Beacon now issues the Blue Badges required for parking.

Linda says they don't have Blue Badge spots as they don't like 'Client's visiting the offices. She worked hard to find the parking lot at all.

Beacon also is in charge of Triumph, the 'agency' that is supposed to help those with disabilities find jobs (they don't), but has no contacts, no lists, just the 'behavoir training' written about on the BBC in from subhuman to able bodied (one of many experiences with Triumph, they changed the 'contact' webpage after being linked in the BBC)

Beacon RN’s, managers and supervisors who have forgotten that it is people not numbers, and people who are at their most vulnerable and desperate, need the kind of fiscal spanking and humiliation that they so oft provide (at a cost of $35 an hour) to their clients. The imp in me wishes to get better so that with an outline and a spray paint can of blue they would arrive one day to find no parking…..as every spot in the lot has magically turned to a blue badge spot.

A type of hero: a brush with greatness.

I think many people as they are children, as they grow up, pretending at heroes, or reading about heroes in comics decides they want to BE a hero. I think of the story of one woman who had heard so much about Abraham Lincoln and admired him that when she was finally shown him close up pass by the woman said, “Well, he’s not much to look at is he?”

There are different types of heroes. Yes, there are those who train to go into burning buildings, who we call upon in times of need, who are there for our medical and other emergencies. That is one type of hero. I have to admit I was attracted to the Welsh police for if not for the stupid hats the women are required to wear.

Then there are the types of heroes that change lives in quiet ways, those like David of the Japan Cat Project, like Tammy with her Cat Refuge and Shelter; like the teachers, parents, the pastors, the people who by day to day work make this world a better place. Those who change lives by reaching out, by noticing the quiet child or the acting out child and work to help them instead of label them a problem. These are heroes and a lot of us have memories of a teacher who made a difference, emotional, intellectual, the gift they gave change from person to person but those people are heroes too.

Someone today said that often people choose the easy answer over the complex one. That’s how we like our heroes, to be Supermen, or people with extraordinary ability. People tend not to think about what someone like Stephen Hawking had to overcome to educate and revolutionize the way we understand our universe.

In the film To Kill a Mocking Bird there is a scene after Atticus has fought hard, fought clearly in a trial against a black man sexually touching a white woman. The courtroom is empty except for the gallery where his two children young female Scout and her older brother Jem are with the black community. “Get up,” one man tells Scout, and she looks at him in puzzlement, and he just says, “Your father is coming.” And as Atticus walked out of the courtroom, empty but for the gallery where every person rose to stand as Atticus passed by. He was a man who spoke for those who were denied a voice; a person who would not relent or compromise himself to public opinion, a person who gave it all, even when the outcome was predetermined from the onset. He was a hero. A rare and special type of hero, and for once, while still living, he was recognized as such. He, for a time, wore the cloak of greatness.

I knew when I read that book and saw that film, what kind of hero I wanted to be. The hard kind. Don’t mistake me, the people who do all those things, day after day for 10 years and change the world, they are heroes, unacknowledged heroes. But to act, because you know it is right. Not because you believe it is right, but because you KNOW it is right, and everyone else knows it too, but no one else will act, and you do. That is hard. That is greatness.

I know the feeling because there is total terror inside. Because you have no idea what will happen next, and that is terrifying. And yet you still have to act. Perhaps, probably there will be violence against you, perhaps, probably you will be hated, spurned, rejected.

When I was a child and I was being hit, and cut, and tortured and raped, I waited, I BELIEVED that someone would come. That a hero would come and I would be saved. No one came. I have ached looking out over the city to be the person to break down the door and save the girl or boy who is lying there thinking the same thing. They have been told they will be protected, or that God is watching over them, or if there is trouble the police will come and yet no one comes.When I started to talk about my sexual abuse experiences, I talked to my therapist/counselor about talking about it, and I was warned, told that I could be physically attacked. I was told that it is not uncommon for mothers to try to shut up the voice that is saying what they don’t want to hear so badly that they try to strangle the person. That the family would rather believe the person crazy than it is the truth. That idea is EASY, the truth is complex and difficult. But for every man or woman who writes, or speaks, or publishes about this; 5, 10, 100, 1,000 – I don’t know how many children won’t have to lie there begging inside for a hero to come. That’s because one already stood up; they took the abuse for talking about it and the anger from the family and society about this taboo subject so that the world would change. They speak for themselves but also for those who have no voice. They speak to give fear and pause to those who would sexually exploit or rape, that what they do in darkness will be examined in the light.

Talking or writing about it gives you panic attacks; it makes you feel like vomiting as you do it (at least it does me). And when you realize that the people you are talking about would rather kill you than hear you it is terrifying. But it isn’t really for them. And yes, the parents, the protectors often would rather hurt you, any way they can, from abandonment, to gossip, to verbal and physical attacks in order to just SHUT YOU UP. There is ALWAYS a reason for ‘not now’ or to not talk about it. What reason is there for the children who lie tonight praying for a hero? What is so important, what reputation, or unpleasant, or social taboo subject is so important that a person really has a valid reason if 100 of them live without that hell, if 50 could, if 10 could, if 5 could, if just one life could be changed?But to speak, to write, to change the world, until there are no children or others to need to wait for a hero to come and save them from that particularly hell, that makes these people are heroes. They save lives. Yet no one will say, “Stand up, SHE/HE is passing.” But heroes all the same.

I have only wanted to live and die in service. To die knowing that the other person was safe. I learned late that simply living the truth, and refusing to give in to demands to shut up about it (whatever ‘it’ happens to be this time) or pretend otherwise can produce the most extreme reactions. Day upon day and month upon month of vicious attacks simply because you are still alive. I am finding that when my care agency threatens to remove all care because I call the police on a worker, that maybe there is another group which has no voice. That people seem to think ‘keeping my job’ is more important than ‘doing my job’ and when not doing the job causes potential injury or suffering to people, a person who speaks about that is hated by all those ‘keeping their job’. A person, like me, who opens up investigations by the government branch against their own care manager DOES feels a bit sick in the stomach. Particularly when the care manager tries four times in one meeting earlier this week to get me put into care; a care center where I would be younger by 50 years than others and bound to my bed and finally UNDER CONTROL. I mean, under care.

I realize that I am not exactly going to be killed leading the charge of the resistance, or saving a drowning child. That is not my fate. That for me now, staying breathing is often the battle. That degenerate diseases and disabilities have their own battles which are unseen, unimagined. Yet, oddly it is here, that I can honestly say I have met heroes. People who, in pain, affected by disease and impairment, go on, regardless and bring purpose and joy to others. It does not diminish the pain, the fatigue, the progression of the symptoms, the medical debt, the thousand little things that drain away energy. No, but they continue on, doing their jobs, or waiting lying in beds, building, planning for the days they emerge again, because they have a heroes spirit. Just because they are trampled, they are crushed under the weight of social alienation and medical conditions beyond bearing, not for months but for YEARS, for DECADES and yet they go on. Sometimes just surviving the day is going on, sometimes preparing just ONE MEAL for another is going on, sometimes they take care of others if only just for a day. Or for some days they have a job, they share part of themselves. They resist the call to give up. I find myself in a company of heroes, in wheelchairs, in braces, in scooters, in beds, in hands covered with bits of superglue.

No, you will not be recognized for your actions. Nor your resistance, your going on. Instead you will pitied, or looked down upon. But I can see who you are. And while you will not likely receive it elsewhere in your life; know this, that inside I am standing because I recognize that a touch of greatness is passing by.