I used to have the VON logo here, but they told me to remove it.
Hello world,
Yesterday the nurse manager for my area of the Victorian Order of Nurses (VON) came to train two women to do my care. She asked what I’d been up to and I mentioned I’d started this blog. She told me “Just don’t talk about us.” To which I replied “I won’t talk about individuals because that would be inappropriate. If a visit gets missed or something though, I am going to blog about it so the whole world will know I’m pissed. Isn’t the internet grand?”
She just stared at me with dead eyes.
The way I see it, people only say don’t talk about it when they have something to hide,and I refuse to let this skeleton hide in the closet any longer.
First, a word about my needs. I have Spastic Quadriplegic Cerebral Palsy, which is quite severe so I need help with all my daily activities to varying degrees (dressing, showering, eating, getting in and out of bed, I could go on forever…).My parents used to help me with everything, then as I got older we decided to get the VON to come in to do the main stuff to take some of the work off them.
We used to have them come in when I was in high school so we knew to expect
Is this my Special Team?
some trouble. We didn’t expect this shit storm though. Because I need a fair bit of care, I have to have what they call a “Special Team” (I always knew I was special). This is because I have ceiling lifts in the bathroom and bedroom to help them to transfer me out of and into my chair. This Special Team means that they can’t send just anyone over here, they need to be trained on the lift.
Training. Don’t even get me started on that. Suffice it to say, the training takes several stages – the Nurse Manager “trains” them, and then I train them, with the assistance of my Stepmother, who is a pro Vicky Wrangler. In all fairness, I understand that training all these people and arranging schedules for the whole district etc., is really hard. I get that. But – two things: 1) if you can’t do it, find someone who can, and 2) I. Don’t. Care. This is not my problem. That should all be invisible and behind the scenes and I should not have to worry about your logistical and staffing issues.
I don’t have a problem with the individual workers. True, some of them are smarter than others but they’re almost all VERY nice. There are some issues though: sick time being one of them. Now, I understand that people get sick but a pattern is developing where when the weather’s good a flu sweeps through the VON staff, funny eh? One of the “perks” of their job is that the VON is generous with sick leave, largely
How much pain is my Aide in this Saturday night?
because they work with a population who is vulnerable. However, they seem to get sick quite often, on summer long weekends…. hmm. I also get the impression, and I’m not sure sure it’s true, that we get more sick calls than other people using the service. I don’t know if it’s because of the “special team” or if it’s because they know my Mom is here and will do the work for them. My father does my care when he’s home on leave from Kandahar. So, what a fun leave for him, huh? Thanks VON.
Oh, Buffy's dead? Call the emergency contact!
The way this service works is that in order to sign up for care, you need to have what they call an “Emergency Contact”. This person will take over your care in case of – you guessed it, an emergency. Seems to me that there are an awful lot of emergencies, and my Emergency Contact is starting to feel like she works for the VON, for free, on call 24/7 (sorry Mom). In my mind, an emergency is like, you know, a blizzard, or a death¸ or an… apocalypse.
One other note: the Emergency Contact is never allowed to call in sick.
I’m lucky because I live with my folks so I will always get the care I need, but what about the people who live alone? How many other innocent people are at the mercy of this unreliable organisation? Why is it that people are being treated like second class citizens just because they require help? Don’t they have enough to worry about without having to wonder if they’ll get dinner tonight? This, in my mind, is a form of abuse or neglect and cannot continue to be swept under the rug. Even knowing that I have care living here with me in the form of my parents, I worry. I feel guilty when they have to do the work. I feel helpless when the aide just doesn’t show up. I feel panic when I lie in bed in the morning, wondering if someone will show up to get me out of it.
I feel like the VON, for the first time in my life, has made me a cripple.
I never felt like that before, but now I do. I spend most days, holding my breath, waiting for the other shoe to drop. Will my aide show? Am I helpless? Will I have to apologize to my Mom again because my care will fall to her? How do I deal with the anger I have? When I complain, aides often disappear from my Team. This makes me feel like I’m being silenced, or punished for wanting care with dignity.
My family and I shouldn’t have to fight for my right to live my life with dignity, and without fear.
-That Chick in the Chair
Smart, funny, horrifying.
As your “emergency contact” you know I’ll take care of you for ever and a day, but it would be nice if we could have reliable care.
You’re my hero,
XOJ
Aww i know but u shouldnt have 2
Vicky I must say I am impressed with your writing skill….you get your point across but you do it in a interesting and often amusing way…I truly enjoyed reading your blog….good for you!
Thanks ruth
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the “dead eyes” part made me laugh. not because it’s funny, but because it’s so macabre, that truth about power and secrecy and how it gets wielded.
the part where you said “I feel like the VON, for the first time in my life, has made me a cripple”, though? that made tears spring to MY eyes. for me, blogging has given me a voice to speak aspects of myself that i wouldn’t have found ears for, otherwise. that has helped with the anger. it isn’t enough. but i hope this place to speak helps. am listening.
Thanks Bonnie
Your writing sparkles and sparks… and the perspective honest. Information that is a an eye opener for a lot of people. I’ll be reading.
Thank u so much it means alot
My son is now only 7 years old and though ambulatory, requires the skilled care of an RN or excellent LPN. I wonder if he feels/will someday feel the way you do, as we are also all too often called that our son’s Nurse will not be showing up. Additionally, we have been chronically short-staffed for 6 out of my son’s 7 year life. Being that I am a SAHM, there is definitely an attitude on the Nursing Agency that my son’s care can just fall to me or also to my husband, if I am unable…even at thecost of his job!
Oh my God, this is what I mean. People sometimes forget that caregivers have a life outside of who they care for. My sympathies to you and you family. I don’t know if this helps but you’re not alone.
My advice to theblondeview? Advocate long and loud, now, on behalf of your son. Teach him to self-advocate, and never stop.
Like my very wise daughter said to you – you aren’t alone.
And don’t be afraid to call in the big guns if you’re getting jerked around. We have a great MLA (provincial member of parliament) who we contact quite often to help us kick bureaucratic ass. I’ve also been known to write a letter or two to the ministers responsible for health or justice or community services pretty early in the “being jerked around” process. It doesn’t hurt to cc: these letters to local media as well. Bureaucrats like to take the path of least resistance and that usually means just saying no to people who try to access services. As the first “no” is exiting their mouths, I make sure they understand that giving my daughter what she’s entitled to IS the path of least resistance.
So, I’ve just finished reading Box 761′s blog and felt weepy. This one totally did me in! Dear VON: If you don’t wanna do your job, then quit! I’m sure there are other people out there who would be willing to step in, take the training and do the job. The thought of someone having to lie in bed all day because their VON team (or a member there of) decided to take a “sick” day, just pisses me off.
I remember when I was about 17, still living at home. The “Asian flu” was making it’s round and BOTH my mother & I got it at the same time. With raging fevers, the doctor (over the phone) told my mother that we needed to take tepid baths to try and bring the fever down and if that didn’t work we would have to go to the hospital. My mum got into the bath first and I lay in bed wishing I was dead, waiting for her to get out so I could have my turn. I don’t remember anymore how long Mum was in the tub but at some point, I got out of bed and went into the bathroom to say or do something, and promptly fainted on the bathroom floor. When I came to, I had to crawl back to bed because obviously my mother wasn’t able to help me.
My point in all of this, is simply What the hell would happen if your “care giver” decided “to take a sick day”
This isn’t right! And don’t let Miss Dead Eyes intimidate you The pen IS mightier than the sword
Keep it up, you are doing good!
What happens if the caregiver is sick? The ideal would be that they send a replacement and that it all happen seamlessly behind the scenes. It doesn’t always, which is where I come in. I’m always here for her, or pay someone I know we can rely on.
What we object to is not knowing – are they coming today? Will they call at the last minute? Makes it hard for me to make plans out side of the house, it’s almost impossible to work outside of the house, and it makes Vicky feel worried and guilty (misplaced though it may be).
It’s a systemic issue within their organization. I have no idea how they’ll go shout fixing it.
Don’t worry miss dead eyes dosn’t scare me
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Hi Vicky , love your blogs you always were a very strong person . The V.O.N. is NOT ALL IT’S CRACKED UP UP BE .With Nanny we never know when or if the are coming either it really makes it hard to make any plans for anything or for them too have any QUALITY of life I think for anyone with mobility issues this would be terrible , I still remember the time when they did not show up and you were left in bed all morning and all they could say was sorry , well not good enough if we as parents had done that we would be charged with neglect but somehow if they do it it’s o.k. .It only add’s to the daily stress that you have too deal with on a daily basis and SHAME ON THEM and Miss Dead Eyes for trying to intimidate you shame,shame,shame .Keep up the great work and take compfort in knowing people are behind you . xox m
Thanks mom xo
you guys are blamming workers…ever think that maybe they are stressed out too and that “sick” days come from part of what they have to deal with??stress,not getting paid,terrible scheduling,…ever take that into consideration??ever think that the nurse managers are being jerked around too?something you need to think about before posting…workers NEVER getting days off requested…always working..mandated on weekends and NOT getting compensated with a day off in place of those…they have it rough to dear vicky and mom!!
I’m sorry if I upset you. I just wanted people to hear about this from where I sit. Like I said most of the women who do my care are excellent. Most of my issues lie with managment, I understand their job is stressful but why should clients pay for this? Answer… no good reason.
To Freedom of Speech:
I think that Vicky’s blog post was really fair toward the aides, and she took pains to make sure that it was clear that she thought this issue was systemic, and not due entirely to the Aides. It’s clear to me, from reading your comment, that you are probably an HSW or CCA – we thank you for the good work you do, but I think that she wanted to make sure that the VON in its entirety understood what it’s like from the perspective of a client.
It’s scary to be left without care. It’s frustrating and angering to be left at the last minute and having to rely on family. It’s scary as hell to be helpless. And most importantly, your issues with the VON (mandating, vacation time, payroll issues) are none of our business. They should be invisible to the clients who rely on you for care. If you have problems with your employer, it is not the CLIENT who should pay for that in fear, and frustrated helplessness. Vicky shouldn’t know that you’ve been mandated to work with her. All she needs to know is that she has the care that she needs to function. She should not know about your payroll issues – it’s not any of her business. That’s between you and your employer. Your stress levels are understandable – we’re all under stress too. Your stress is not, however, Vicky’s fault or problem to solve.
I’m sorry, because you seem angry. I’m pretty sure that’s not Vicky’s fault either.
Systemically, the VON seems broken. It’s a very complicated system, and we tried to be patient but nothing seemed to get through to them, until this blog post. I congratulate Vicky on exercising *her* freedom of speech.
Vicky the victorious. Nothing like blogging something that gets right to the heart of the matter and makes a kind bold (but kind) statement right out of the gate. Awesome job my friend! I can hear your voice when I read the words …..excellent! I can’t wait to read more.
You rock Vicki! Nicely said
You are pretty courageous Vicky to take this bog on. I have no experience with VON, yet. My mother has dementia and has been able to stay in her apartment because of an Independent Living program here. If it wasn’t in place I don’t know where my mom would be. We would have to find care through CCAC or VON. Be strong and do not become discouraged with negative feed back. This will happen but you have a great example of strength from your mom and I think she’s pretty cute too. I hope to meet you someday and thank you for giving a voice and forum for this important issue.
Thank you so much. Somebody had to speak up.
WRT: Freedom of Speech:
you poor person, you really sound angry, pissed off and mad! I certainly hope that if you are working with disabled, sick or some type of helpless person, that you are able to leave your anger at the front door before you go in and “administer” care.
me 2
Augh. You know how I feel about that kind of stuff. It makes me SO SO mad! I’m a nurse, and though I work in a hospital setting, I really would love to be part of one of those teams for peeps like you Vicks. I would also love it if someone would hire a couple private nurses to cover for them in case of sickness. That is my dream.
I’m really digusted and saddened with VON. I see this all the time. People can’t get the service where they live because they “aren’t in the area of coverage” What!? That shouldn’t freakin’ matter! These people, some who are extremely vunerable, REQUIRE this assistance. It’s not like the asked to be in this poition, and they all deserve someone who will give them the care they need, and VON needs to step up their policies and and and…….
*ends rant because of increasing rage*
*HUGS*
Preachin to the choir sister MISS U THIS MUCH