Adventures In Caregiving – Part One

September 26, 2013

FB profile (3)Caregivers – can’t live with ‘em, can’t live without ‘em.

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!

Who was Jeff Shannon?

Got some caregiver experiences of your own to share? Please tell you story below.


2 responses to “Adventures In Caregiving – Part One”

  1. Edward Copeland says:

    Good lord. Granted, I haven’t had the need for caregivers even a fraction of the time you have, but I’ve been pretty fortunate with most of the ones I’ve had. One of the best and nicest ones I had didn’t show up drunk but didn’t show up one day because the night before some of his friends had spiked something he was drinking with booze and he got horribly sick and hungover because he’d never touched alcohol. The only couple of cases where I had troubling ones were a Kenyan immigrant who had a tendency to be late because he worked almost literally around the clock because he needed money so badly to support his son, so he often fell asleep in the chair beside my bed, loudly snoring away. Sometimes he would get angry and blowup, usually at the promptings of my blowhard dad who would get on him for tardiness and the napping and other things such as spilling urine and not cleaning it up when he emptied my catheter bag. What was sad was what lay behind the anger. Isaac appeared to be in his mid to late 50s, but I was shocked to discover he actually was 41 and, albeit in a different way, almost in worse health than I was. When he accompanied my dad and I to a doctor’s appointment one day, when we arrived I could tell something was wrong because he was slumping and breathing heavy in the seat in the back of the van next to me. I told my dad that he had to go get someone from the office to call for an ambulance, despite Isaac’s adamant, though weary and quiet, pleas that he was OK. Finally, the head nurse of the office got him to get out of the van at least (I couldn’t exit until he did) and took his blood pressure which was off the charts. I forget the exact numbers were but his systolic pressure was somewhere in the 230-240 range. He eventually was taken away by ambulance and the doctor’s office declared me a hero. saying I’d saved his life. The depressing part was Isaac was working himself to death to try to afford medications he needed but, as is the case with many home health agencies, they don’t provide health insurance for their employees or pay them so little they can’t afford to take it if they do. I never saw Isaac again. I still wonder how he is now or if he is. Another one who was lbad, though not as a person, was a 20-year-old kid who also often was late, but just because he was irresponsible in all areas of his life. We endured his fretting over whether he had knocked up his girlfriend, who he boasted about openly cheating on with other girls. My dad would get on him as well, only Eli would go right back at him. He also would fall asleep at times, but usually his constant glare at his smart phone or calls with friends kept him alert. Unfortunately, not to me. The worst was an older woman I only had a couple of times because I fired her twice. She spent more time in our living room watching TV or napping. What was worse was that she’d refuse to do necessary requirements in caretaking. When a different caretaker didn’t show because of a last-minute family emergency, I called the agency who had forgotten to tell me and said they’d send a replacement. An hour later, she walks in for the third time. She started out immediately refusing to do things and adding religious proselytizing as well. I asked her for her time card and filled it out for 30 minutes and said, “Get the hell out of my house you waste of space.’ I then called the agency and told them what I did and gave them their walking papers as well.

  2. Jean Simon says:

    I’m producing some short, funny Dementia Caregiver Videos that will be FREE on You Tube. I was caregiver for my mom and husband who both had Alzheimer’s. I got through it by turning events into comedic scenes and I’m shooting the easiest three next weekend.

    The videos are my “give back”…

    I’ll be editing and posting them as soon as possible.

    Would you mind if I call them “Caregiving Adventures”???

    And if you wish to share them, that would be great! I want to help as many caregivers as possible!

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