Today a hospital social worker handed me a glossy brochure for newly anointed family caregivers of kidney dialysis patients. I am among the newly anointed.
The brochure begins with a cheery note that says I’m embarking on a rewarding journey. I have to admit, that line gave me the first laugh I’ve had in the three weeks since my husband wound up in the ER. I suspect I guffawed so loudly that I woke up the patient in the next room.
Seriously? A rewarding journey for me at this point would involve a beach vacation on a tropical island. And I am shocked that there is someone on this planet who thinks that caregiving is rewarding. It is many things, but rewarding isn’t one of them. It is life-disrupting, frustrating, painful and heart-wrenching. It is time-consuming, exhausting, frightening and depressing. I have scratched off the film on my caregiving lotto ticket and have seen nothing that even comes close to a reward.
For the past three weeks, I have done battle with social workers, challenged doctors, and screamed at more people than I can keep track of. I am the Bitch Wife of the very sick man in room 5029. My husband is experiencing acute kidney failure. Acute means that a bowling ball leveled my family like feather-weight pins as we stood there helplessly unable to get out of its way. Acute kidney failure struck us out of the blue — no warning, no notice, no remote hint that it was even lurking.
Three weeks, two medical centers and one rehab center later, I can unequivocally say I love my husband but am sick of caregiving. I am sick of the pungent disinfectant smells, the bad cafeteria food, the hospital windows that don’t open, the constant sound of beeping monitors, the lights that stay on 24/7, and the anxiety that fills my gut every minute that I spend there. I am sick of seeing my rock-solid steady teddy bear of a husband so sick and helpless.
Just as nobody ever asks to get sick, nobody ever asks to become a caregiver. My days and evenings are spent at his bedside, waiting for calls to be returned, talking to insurance representatives, and jumping out of my skin every time a Code Blue call blares over the PA system. I have learned which nurses are good and which ones aren’t and why every person who is hospitalized needs to have a family advocate with them. And as much as I hate spending time in the hospital, I equally hate coming home to an empty bed and a house that feels ghostly without my husband in it. Even our dogs have been going a little bat-shit crazy.
I have relied on friends and community to take care of the mundane parts of my life — like feeding my kids — but I have stood alone in the hard-core battles. I have learned more about how medical institutions are run, what you need to say to get your insurance company to actually pay for the coverage you bought, and the many — many — loopholes and exceptions to Medicare. I know of no other consumer purchase that you can make where you are offered a basket of goods, pay for it, and then the merchant can change the contents of your basket once your check clears. That’s our medical insurance plan, folks. I have filled out dozens of forms, signed documents without knowing what they say, and on more than one occasion stormed into the hospital kitchen with a plate of food they delivered that was filled with foods he can no longer eat.
I have paid hundreds of dollars to park and hundreds more on quick grab-and-go food that loosely passes for nutrition. I know every shortcut to the elevators, that I need to lie about my kids’ ages to get them in to see their Dad in the ICU, and that hospitals are filled with departments and people who don’t communicate very well with one another. My laundry at home is in piles on the floor while I wait for it to wash itself; my daughter’s car has a dead battery; and the day I was told to go visit area nursing homes was the day my heart imploded and I lost it.
But while I can handle all of that, what I can’t handle is some brochure telling me that I am embarking on a rewarding journey. Caregiving is a job that no one asks for and no one wants. Instead of trying to spin it into something less overwhelming, maybe some genuine help and support for caregivers could be offered instead. You know, at least validate my damn parking.