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.

I did not choose this disease, but it is mine.

This has been the weekend that felt like a gut hit: when you found your school had been turned into an hair-gel warehouse, and your family home is now a set for TV ‘comedy of slum dwellers’ pulling in 26 million viewers. And they haven’t even taken down your posters or your ‘third place pretty miss junior high’ award from the wall. It wasn’t pretty. Linda is sick. I got a fever and wrote the last postcards to post on the floor after I fell over and was too weak to get up (don’t even remember what I wrote so if you get some scrawl, you know what happened).

The Specialist, my last hope for treatment said he WOULD have helped us if only we had seen him 18 months ago….except we did see him 18 months ago….and then he wouldn’t help us. ‘Not my inch’ I went in INDY. Specialist actually said, “Well, you know there is no treatment for your condition…” Well, not the autonomic part. I passed out tonight because my heart stopped. It now has an evening habit, if I breathe, it stops, as I don’t have the strength to breath and have my heart beat at the same time. It is surreal, watching it on ‘the big screen’ I call my heart monitor now – “oh, it’s stopped!” Linda says, while I clutch my chest, old news to me.

Friday Linda and I spent seven to eight hours because with she is the primary care giver and sometimes it is hard not to hate the disease, and also hard not to fuse the disease and the person. It is hard not to feel, when any forgetting causes others pain, that you are failing. I am failing because I cannot remember three days ago, she is failing because the medicine isn’t here, etc.

I decided that I am not actually responsible for getting this disease. I did not buy it, or test drive it, or pick it out at a factory. I can’t remember things. If a person makes a snide or pointed remark about that, then that is their problem, and they need to go somewhere and solve it, like therapy.

I did not know if Linda was going to build walls in her heart, if this was as far as she went or not. It feels to both of us like the big descent. The top of the roller-coaster where there seems no bottom as the car keeps turning further and further towards the ground and then you start to drop. For me, there is no ‘chicken line’ for getting out, there is no closing the eyes, there is only what I call ‘The Fire’ and that is all. And few if any will go the distance, and I know that. It hurts, to be alone, to know the isolation will get worse, but people don't want to see what it looks like when all falls down.

We talked, and expressed fears, and anger, and irritation and I am trying to create multiple weekly respites for Linda, I am going to try to be more positive. She is going to make a place where I can feel safe. And I am not going into a Care Home. Because there is a fantasy that if I go to Home that we can spent the time together as ‘quality time’. Except the same paid people who don’t care for me here will be caring for me there, and for me there is only one thing keeping me going: Survival. And survival in a Care Home would be doing what it takes, and that isn’t sitting on the porch in case Linda drops by so we can have quality time. And what is that? Talk about five years ago when I remembered things.

This IS the time. If we want quality time or better quality, we have ourselves to find it. This, right now, might be as good as it gets. The people who are here, like Linda, get so used to me in pain, and so tired, very tired, that me in pain has no meaning. Linda would run to help someone who twisted an ankle but after several hundred nights of tears running down the sides of my face, or moans, I am just a lump that stops sleep. That is what it is sometimes. Hopefully not all the time.

“The Fire”? It takes you to the limit of what can be survived, both as a human being living it, or someone watching it. And that is FAR beyond what can be stood. What can be borne. At some point you have to turn away, if only a bit, to shield yourself. There is something for each of us that we can’t stand to watch. For most care workers it is ME, in a level 2 seizure (a level 6 would rip muscles, leave bruises, or internal bleeding). And knowing that EVERY single thing will get worse, will stop working, or hurt more, whether it is simple as swallowing (3 days or an IV), or new ways of pain. And there are so many types of pain. At some point, the eyes and heart need a break. For those who care.

Except for me. I am strapped in and will ride the whole way. If I want to survive, not just as a body in a bed, but as Elizabeth, as I AM then I must always turn to face the fire. No matter how hard or impossible, I HAVE to do it.

In the Bible, Daniel , three of his friends are to be thrown into a fire so hot that it kills people who even approach it. It is made because the king made a gold image of himself and only three would not worship the king every time he felt like it. Shadrack, an ex-prince of Israel, tied like cordwood faced Nebuchadnezzar and told him that even if their god did not save them, it changed nothing, and they would not worship him. The king in a rage had them thrown into the fire, so hot that the soldiers which threw them in fell down dead.

Weird story right? But for me, it means so much because Shadrack said he COULD be saved, but did not expect it. Nor did how he feel change, or how he choose change regardless. He would not do whatever someone who bullied and threatened wanted.

I never wanted to have Autoimmune Disease Autonomic Failure and Peripherial Neuropathy with a Seizure disorder. I didn’t ask for it. And yet, unless there was a way to stop or cure it, I would not give it up. There is no way I would ask for another to carry this, if giving it up meant that some other person, some other statistic got what I have already lived. Even though I pray, I beg, (at times) for death, for not waking up from sleep, or a seizure, for a massive stroke, but then I work full time on surviving again. It is MY path. I will not accept that I deserve it, or that it is my fault.

In a world where ‘someone must be responsible’ that is so ‘wrong’. I do not deserve this disease. You do not deserve your disease. I will do everything I can to improve my quality of life but I will not tolerate another to mock or abuse me or another because of a disability and disease I or they had no control over. Yet, this is where I am. And while I could have been saved, I likely will not. So now it is time to face the Fire.

The Fire means that my ‘right now’ may get five or 10 times worse. On my 1-10 scale, for almost all, my 2 is your 15. It is your worst fear, going on for days, then weeks, then months. Why do you think I have guys who hit my head for 9 minutes in boxing and LAUGH while it is going on?

Even what I can’t feel hurts. The bone hurts, the bone marrow hurts, the muscles ache, they scream, they explode like a strike of lightning and that is just one of the over 200 bones in the body. Does my pelvis hurt? Yes. Does my horsehair nerves hurt? Yes. Does my FACE hurt? Yes. That is just life.

The worse things get, the less I can get out, the less I can have fun – Oh I tried to go to see the squirrels twice recently, but it was a disaster, the less people want to watch. But I will keep trying. Always trying, always striving to be more, to be MORE. To grin more. To watch me crawl across 50 feet of broken glass with a grin between the other expressions, the blood coming out my mouth, it would make people ill. I spat out the blood this morning from a couple bad ones last night. It is what isn’t filmed or photographed. And it will get worse.

I am lucky. Linda and I have made a pact. I don’t know how much longer I can keep going, or what it will look like, but I will keep breathing as and when I can. Orwell said in 1984 that "In the face of pain there are no heroes." I don’t believe that. I believe that hundreds to thousands of homes, behind the veil that we as a society pull over the sick, dying and disabled, that there are plenty of heroes. I watch the Olympics and I envy them, knowing the hours of practice at a sport they love. People think they are heroes, doing what they love? I think of those who competed while injured and that is hard, and yeah, inspires me on a bad day, but that was just a day or two or a while, but some people, they face the pain and go on for months, years. Orwell could not imagine a world where someone would face the pain and chose it anyway, and then do MORE.

‘Enter the Hero’ says one of my favorite characters, Peco, in a film called Ping Pong (nominated for 8 Academy Awards). He says it every time he enters the competition in Ping Pong, only he has natural skill but is lazy, and loses. And then he pouts….and throws things. And some point, having dropped out, almost, he starts again, and trains, and trains. Meanwhile, his friend, nicknamed ‘Smile’ as he never smiles, and has no natural skill, just pure hard work, starts winning. Smile kind of hates Ping Pong but likes friendship, and at the final competition sits in the stairwell, while Peco has worked his way back into the quarterfinals.

“Do you believe in Heroes?” Smile asks his coach. Who tells him no, just hard work.

Smile says, as he listens to the crowd, cheering Peco win to the next level, “I’ve been waiting for you.” Sometimes it is enough to be a hero to just one person.

When things are bad, very, very bad, and all I can feel is a hand, or smell something, or see white, I go on, and try to think of a joke, between the pain. I will hear myself scream and wonder why there are so many ways to hurt and not near enough to orgasm. Ha. See, I did it. To be gone for a time, to come in, dopsy in my face, in INDY and have someone, without hesitation say, “Good to see you” and grip my hand, it is, something that is valuable beyond words.

I work so that I may be ready, to be the arm, the voice, the person who reaches out when there is nothing left to hold. I work so that I am that again with Linda.

“Enter the Hero”

Where I have been, a bed on fire, and late remembrance

I am still alive…I can tell because parts of me hurt. I finished, just 3 minutes ago, a 4 day marathon of listing items for ebay (92 manga lots!) in hopes for getting some funds to save and enough to pay ebay sellers and get gifts. Sorry I have been not communicating, as it has been: get up, work, take pain pills, sleep, repeat. Over and over I worked until fingers, wrists, arms, forearms, shoulders, back, pelvic bones stopped working, just ached. Until I was not all here. I don’t know a time where I haven’t known only working and pain...literally, I can remember vague things in the past, but my recorded short term memory can’t believe it is over! Now this is what I WISH Linda and I had been doing. I mean, someone, well two someone’s has to do it, why not let it be us! Oh wait, I have the lacy thong, woot! I get to be on top! Sorry, fantasy distraction, late night thing.

The items and lots for sale on ebay (was over 90) include Yaoi (which are boy/boy love manga books come'on they are CUTE, and there is a KITTY! Most of Yaoi are buy it now or choose to bid and hope you get it – postage is included) and Shojo manga lots (Female romance, falling in love stories, couples stories) and Action manga lots like Vampire D’s oversized 200+ page mangas. I tried to list only complete sets as I know the frustration of buying half of a set and not knowing the rest of the story. Some of these I bought before I got sick, I think, or started. The ebay listings are HERE if anyone is interested. There is quite a lot that younger teens would like, high school romance, even 9th grade romance, plus books for singles in the big city, college romances – Venus in love is that one, where a girl is going after a guy in college, only to have the guy in the dorm next to her, her friend, in love with him too! Lots of Ghost story style ones (3 stories solves a volume or one a volume), and some cult ones like Lunar Legend, or Eureka Seven (famous anime) or The Girl who Ran through time (an alternate story on the famous Anime Movie: Girl who Leapt through time).

Sorry, it is all I have been staring at for um, days? Weeks? When did I start taking photos? Wow, I have a LOT of Yaoi. But you know most of the Deux Yaoi (and others) are more like fun boy love light romances, (isn't the build up and the moment of first kiss the tingly 'aww' moment particularly when the uke/femme is trying to be all butch! A "I don't know what you are talking about" - response: KISSED!) often the best yaoi is with no heavy adult scenes (or few), I recommend Manzai Comics, Idol Pleasures and Part Time Pets!
I am off to bed at 4:00 am, and tomorrow to the doctor, and then two more appointments later this week – no sign of any treatment in sight yet. But I keep working at it. The night worker who came on Wednesday and said she would come back told the schedulers she would, and then would not, so we will see tomorrow if it is just a timing conflict and get that changed.

I have been going through a long dark patch. Sort of self harm fantasy, compartmentalized, then lying in bed or when I was alone or with people every night, every afternoon, I thought about setting myself on fire. I believed it was the only way to help Linda and myself and get out of the loop I was in (I didn’t say I was very sane at this point!). I held the bottle of spirits I was going to pour over me, and then over my sheets in the bed before I lay in it and lit it. Now I look back and think that might not have been a very um, (I can’t think of a word that isn’t a horrid pun: ‘bright idea’, ‘illuminated thought’, ‘flash of brilliance’) good. Sorry, thinking about setting yourself on fire for dozens of hours is NOT GOOD, but it is sort of very ME, which makes me glad I didn’t do it. Got to stop listening to the voices, whether they be inside (like the ‘Bad Beth’ and Guilt Inc. voices) or outside (like the questions, insinuations, harassment, and basically abusive relationship doctors can hold over us: and health officials).

I hope you had a better weekend and I really hope all this work brings me the financial security I am hoping for. Now I really am low on manga! Seriously. I also hope all these doctors appointments bring SOME sort of treatment. Linda got a link to treatment for MS people to give remissions (not a treatment that would be approved here however) – still advances continue, treatments will come but until then, I have to live, to find balance – and to pray that the insanity of Black Friday (Thanksgiving is this Thursday, the day after that, Friday, is the most busy shopping day of the year) crazy spending in the USA spreads to ebay!

I sort of missed Remembrance Day. I wanted to remember on Nov 11th and did and do now, all those who worked as nurses in the field and in the stations all the way back to the home country on both sides of WWI and WWII. These women, who had PTSD and ‘shell shock’ went unrecognized and unappreciated. Florence Nightengale’s experiences in Crimea left her in bed – Shell Shock, M.E./CFS? I also want to remember all those families and spouses, communities who assisted in the caregiving of those who returned from war with impairments from psychological to the physical: the lungs, the limbs. There are millions to remember those who fought, let me and those who chose to remember those who tended men ripped apart by shrapnel, or who died holding their hands, and they went back to their cot, cried, then got up and went back to work.