To which I might add: Probably not a good idea to kill ‘em.
If you’re a quad with an injury level of C-6 or higher, you already know what I mean. When it comes to caregivers, we all share the same dilemma: We’re completely dependent on caregivers to provide us with some semblance of a “normal” life, and for the sake of common decency we must openly appreciate the essential function they serve in our lives. At the same time we have to suppress the urge to kill ‘em where they stand. One minute you’re thinking “Thank God I have this person to provide the crucial help I need,” and the next minute you’re playing out homicidal fantasies. Dependency + resentment = “I need you. I appreciate you. And I wish you were dead.”
We Love Them, We Love Them Not…
I’ll admit that’s a bit extreme, but we can all relate to the dichotomy: We desperately need caregivers and desperately wish we didn’t. They (and our wheelchairs) are the ultimate symbols of disability. That makes for a very complicated relationship, full of emotional contradictions. When you consider all the variables involved (reliability, experience, compatibility, competence, etc.), it’s no exaggeration to say that the caregiving dynamic is at least partially akin to marriage. The downside is that it’s a platonic and polygamous marriage to people you never wanted to meet in the first place.
As I’ve grown and matured, I’ve gained a healthier, more affectionate attitude toward those who make it possible for me to live from day to day, but some resentment still lingers: I think back on the dozens of people who’ve seen me naked, and only a tiny percentage involved a sexual encounter. Quite the contrary: The presence of caregivers (male or female) is about as sexy as an ice-cold shower. Forget modesty and privacy; those things vanished the moment we were injured. With caregivers (and doctors, nurses and ER staffs), our nudity remains clinical in context, and while we all must learn to accept this as necessary, it’s a constant disappointment. Before my injury, I was expecting most of my nudity to be a lot more enjoyable.
Then there are the horror stories. We all have ‘em – you know, those inevitable tales (best shared with other quads who can knowingly laugh about this stuff) about crappy caregivers and why we love them (not!). Here are a few of mine:
Tales From the Dark Side
• José, from Mexico, was my first caregiver, hired while I was still living with my parents. With his thick, jet-black hair he looked like a king of the ancient Mayans. He was good-natured, experienced and reliable… that is, until he arrived one morning in an alcoholic stupor. He’d been dumped by his girlfriend, and years of hard-earned sobriety were demolished overnight. He stumbled into my bedroom so obviously blotto that I was immediately terrified. He proceeded to bounce off the walls and starting to cry as he stumbled, slurred a few angry words and fell face down on the floor, totally unconscious. We had to call EMT’s to revive him, and for the sake of my own safety, I had to let him go.
• Up next was Kirk – or Captain Kirk, as I soon called him, because he was a total space cadet. As I gradually discovered, he too had a drinking problem, compounded by the fact that he was just plain weird. He shared his large collection of jazz records with me, but Kirk was only semi-reliable and prone to avoidable mistakes. When he absent-mindedly spilled hot cooking oil on a carpet, it melted through to the padding underneath (requiring expensive replacement), and Kirk knew his days with me were numbered.
• Doug acted like my best friend, but after a month or so I noticed that a couple of my paychecks for freelance film reviewing were overdue. I confirmed that they’d been sent, so I called the cops and they set up a sting. Sure enough, Doug was stealing checks when he retrieved my daily mail. His accomplice worked at a local check-cashing place, and both were busted for forgery and theft.
• Debbie wasn’t nearly so clever. She found where I kept my wallet hidden, and while I was in the shower she’d pocket some bills for herself. Did she think I wouldn’t notice? I confronted her and she tried to deny it, so I fired her on the spot. (In situations like this, my dad would fill in until I hired a replacement.)
• Kaylee was the scariest caregiver I’ve ever had. She seemed like a good fit, and had some solid references (possibly fakes). By the third day, however, her need to control everything (including me) had revealed the Nazi beneath her benevolent exterior. She was clearly bi-polar (I now know what to look for), and threw a frightening tantrum when I reminded her who was in charge. This was a case of genuine mental illness, and my safety was at risk.
Learning From Experience
I could share a dozen less alarming examples of poor matches and criminal incompetence, but for every bad caregiver I’ve had two or three good ones. Most of the worst-case scenarios occurred early in my quad years, long before background checks became standard procedure. I was hiring privately and subjected all applicants to thorough telephone interviews before choosing to meet the most promising candidates. Most of the time things worked out well, or at least satisfactorily .
Ironically, recent misfortune has made my caregiver situation better than ever: When serious physical setbacks led to financial disaster, I eventually qualified for COPES, a state DSHS program that provides caregiver assistance for low-income clients. Now my caregivers are provided by an agency, and their employees are subjected to thorough background checks. They’re professionally trained and supervised, and I can request an immediate replacement if they’re a bad match. I now enjoy the security I never had when I hired caregivers privately, offering above-average pay rates that drained most of my hard-earned income.
Still, the subject of caregiving is so multi-faceted that this column barely scratches the surface of the caregiver dynamic. That’s why you see “Part One” in the headline above. I hope you’ll stay tuned for Part Two, in which we’ll continue to explore further adventures in caregiving. Until then, keep an eye on your wallets!
Got some caregiver experiences of your own to share? Please tell you story below.