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
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
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.
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