The story you're about to read is true; the names have been changed to protect the guilty
I’m fortunate in that many of my paid caregivers have been professional, reliable, respectful, pleasant and hard- working. Some have been with me for so long we think of them as family. Whether it was sharing my excitement over self-publishing a novel and moving into our new house, or helping me through the misery of my first months of diabetes and the nightmare of my mother’s breast cancer, they’ve always been there for me. If it were possible, I’d clone them.
My newest nurse has worked here for only a couple of months, but is turning out to be one of the best I’ve ever had. She has the rare ability to figure things out on her own without having to constantly refer to a manual. The one thing about her that took some getting used to is that she’s 20 years younger than me … ouch! This kid’s never even seen a single episode of the original “Star Trek.” That’s just wrong.
But for every good nurse I’ve ever worked with, there’ve been two or three who, unfortunately, shouldn’t even be assigned to a North Korean prison camp.
Robert E. Howard wrote for the pulp magazines of the 1920s and ‘30s, but is most famous for being the creator of Conan the Barbarian. In my thrillers, I based my paraplegic detective, Paul Murdock, in part on Howard’s swashbuckling heroes. I’ve always related to Howard in that, although we’ve written characters who overcome incredible odds through a combination of wit and weapons, we were/are far more vulnerable than our fictional alter egos.
Sadly, Howard’s demons drove him to suicide at the age of 30. I’ve never sunk to this level of despair, but recent events have reminded me of just how vulnerable I am, thanks to spinal muscular atrophy (SMA).
In 2004, my home health care agency went out of business, leaving me only 30 days to find replacement nurses. My two best nurses were loyal enough to stay with me, but this still left several slots to fill. At first, in desperation, I was hiring pretty much anyone with a pulse. When the newbies came to get me bathed, dressed and up for work, it took a great deal longer than with the more experienced hands, but I figured that things would speed up once they learned the routine.
Then one morning during what seemed like a daylong bed bath, I said to one of these greenhorns — whom I’ll call Carla — in a polite tone, “It might go quicker if …”
Carla slammed my legs down on the bed, glared at me and snapped, “I’m doing my best, you spoiled little [expletive]!”
Sure, I am a spoiled [expletive], and I don’t need any embittered old nurse to remind me. Carla never hurt me, physically, but her hostile attitude made me wonder if she was capable of such a thing. I started having trouble sleeping and suffering from stomach problems. I don’t hire nurses to fall in love and marry them, but I don’t think a little respect and professionalism is too much to ask, either. When I couldn’t tolerate Carla’s behavior anymore and fired her, I felt that things would now start looking up!
You live and learn.
Many new nurses seemed more interested in gossiping on the phone with their girlfriends than in working. One nurse — I’ll call this one Mia — made three to four such calls a shift. She would also stop in the middle of bathing me and leave me half-naked and shivering while she had a snack or three and read her Bible.
Like I said, I was desperate for help, so had no choice but to keep her on …until she almost broke my neck. My collar became caught beneath my huge, Jay Leno chin, but because my ventilator was disconnected, I wasn’t able to explain the situation. Instead of stopping and investigating the problem like any reasonably intelligent adult would’ve done, Mia just kept tugging and tugging until I felt something tear inside my neck. This fun little episode left me in constant excruciating pain in my back and joints for the next six months, with only children’s Tylenol to dull the worst of the spasms and swelling.
I couldn’t see how things could get any worse, but of course, they did. This time, it was a nurse I’ll call Dorothy. At first she was friendly, attentive, worked three evenings a week, and accepted that I’m a night owl who works until midnight. We even liked many of the same TV shows. She didn’t mind the violence and autopsies of “CSI,” or the raunchy humor of “Two and a Half Men.” Over the next two years, though, I discovered that she had some serious mental issues.
Dorothy was going to other nurses behind my back and saying that my family did nothing but yell at and belittle her, when in fact nothing could’ve been further from the truth.
Then one day, for no clear reason, Dorothy flew into a rage, accusing my mother of conspiring to cheat her out of her hours and “treating her like a whipping boy.” I was in my bedroom at the time, so had to listen helplessly to both Dorothy’s raving and Mom’s tears. A couple days later, when Dorothy came in for her next shift, acting at first as if nothing untoward had happened, I was the target of her delusions.
“I’ve tried to be your friend, Mike,” Dorothy whined, “but all I’ve ever gotten for it is a kick in the teeth.” She dumped this on me just as she’d started feeding me dinner, shoveling food into my mouth at such a quick, angry pace I could barely chew before the next bite arrived. I tasted nothing but a growing, acidic ball of fear in my guts. All the while, Dorothy continued her paranoid rambling. That night, I woke in a cold sweat from a half-remembered nightmare — although I can guess what it was about — and puked for the first time in over a decade.
By now, you’re probably thinking, Why didn’t this knucklehead just fire her? Even though my folks are still strong and active, they’re in their 70s, and need all the help with me that they can get. I hoped that if Dorothy channeled her rages onto me instead of them, we’d get by until a replacement could be found.
After what happened next, though, I was ready to give up on all new caregivers, and just spend the rest of my life in bed.
The mental scars from this last incident are still raw, so I’ll skip the gory details. What I’ll say is that when Dorothy called on a Friday to resign, she also said something so vile, so hurtful, that Mom suffered an anxiety attack that put her to bed for the entire weekend. By Monday, she had slurred speech and was unable to form complete sentences, so a race to the ER ensued. She hadn’t had a stroke, thankfully. She just couldn’t take this sort of stress anymore.
This was one of those times when my inner circle of good nurses pitched in to help while Mom recovered. After this, I vowed that never again would any crazy/threatening/neglectful nurse put me or my family through this kind of hell.
If you’re ever in the position of being in the hands of someone who seems less than stable, there are still several things you can do to protect yourself.
Let it be understood from the outset that they’re not in charge, you are. I like things done a certain way for my safety and comfort, but still encounter caregivers who say, “Well, I’d like to see you do it this way.” My usual response is, “I’m sure you would, but this is the way we’re going to do it.” Be firm, but be careful. Caregivers can be a sensitive/touchy lot, and if you get on their bad side, you could be inviting even more trouble!
Always have a means of calling for help. I have a Skype account, so if I’m going to be alone with a caregiver, especially one who hasn’t worked for me for very long, I try to spend as much time as possible in front of my computer with my Bluetooth in place. I also have a code word that I’ve revealed only to family and a few friends. If I ever use this word, they know that what I’m really saying is, “Help! I’m alone with a raving lunatic! Get your butt over here now!” If you can’t make calls, still have a code word, and ask family and friends to call periodically to speak to you personally. Do not let your caregiver just take a message.
Trust your instincts. You know the vibe you get when you aren’t quite sure if you can trust someone or not? Don’t ignore that feeling. It’s an evolutionary leftover from the time when humans were in constant danger from larger predators, and needed to decide quickly whether to fight or flee. The same principle applies to dealing with caregivers.
Report abuse. If you ever do suffer abuse — be it physical, verbal, mental or emotional — at the hands of a caregiver, report it to your case manager, private agency or state licensing board. The caregiver who subjected me and my family to emotional abuse is gone, but I still regret not reporting her behavior.
Whenever possible, work with an agency. My best nurses have come from private agencies. Here in Wisconsin, independent nurses are paid by the state, so all they have to do is show up, and they’re on the clock. My last independent nurse did nothing but sit with his laptop and day trade through his shift. When I’d ask for anything, he’d roll his eyes because he had to (gasp!) work! There are, no doubt, good independent nurses out there, but I’ve yet to find any.
I’ve never been physically abused by caregivers, but the stress, anxiety and humiliation of dealing with unbalanced and incompetent “nurses” has made me reluctant to trust new employees, and has triggered bouts of what I suppose could be termed depression.
Keeping me from slipping into darkness completely are my family, my work and my Irish stubbornness that can’t be broken. People who prey on the disabled are cowards who target us because they think we’re weak and helpless — and physically, we are.
But so long as we use our heads and refuse to be victims, though, we’ll always triumph in the end … just like Paul Murdock and Conan the Barbarian!
Michael P. Murphy, 45, has spinal muscular atrophy and lives in Oconomowoc, Wis. A frequent Quest contributor, he’s the author of two science fiction novels, To Rule in Hell and Data Streets and a mystery/thriller, Innocence Kills.