THE SOMETIMES-NOT-ALWAYS-THERE-PART-TIME-SELF-INVOLVED CARETAKER
So, I named this blog “The Selfish Caregiver.” Now, I am finally going to explain why.
When my mother first got sick, I joined a support group at the truly wonderful Gilda’s Club NYC. They are amazing, and I don’t exaggerate when I say that they probably saved my life. Like, a few times.
The group was for friends and family of people with a cancer diagnosis, but by and large was populated by people that one would categorize as “caretakers”–that is, the people who day in, day out, tend to the needs of their ill family members, often giving up their own lives, pursuits, and personal space in the process.
This is where I’ll note that the act of caregiving for a love one is one of the most selfless, life-affirming, and utterly difficult things that a person can undertake. As a society, we tend to tell these people that “that’s just what you do” but I’ve seen people give up their jobs, homes, careers, and stability to take care of loved ones, not to mention the severe emotional toll it can take, and in spite of the fact that I think it’s a beautiful thing to do, I also think it’s a thing for which there should be more cultural, societal, and yes, governmental support. That said, the Affordable Care Act has made things a little better, but I still support increased governmental assistance for family caregivers, and if you ever want to be able to personally care for your loved ones later in life, you should too.
To un-digress, though, I was surrounded by these people in my support group who spent every single hour for months on end caring selflessly for their loved ones. And while my own father had been sick years before, I’d watched my mother feed him ice chips, bathe him in the kitchen sink when he could no longer get upstairs to the shower, and sleep on the couch so that she could always be near him. I knew what it was to be a caregiver.
In many respects, though, I didn’t think I deserved to be among them.
You see, I didn’t give up my job or my career. I didn’t give up my apartment in Brooklyn. I didn’t move back to Richmond to care for my mother full time. Don’t get me wrong, I would have in a heartbeat. But my mother wouldn’t let me.
She’d watched me work so hard to get where I was, through losing my father, then my best friend, and she loved that I’d gotten out of Virginia. She lived for her New York weekend trips, and eating Recession Specials at Grey’s Papaya, and bragging to all of her friends about how her daughter wrote ads that were on TV. And as a result, she absolutely forbade me from giving that up.
So I flew down to check on her once or twice a month. When things got really rough, I would stay for a month or two at a time. I slept in the fold out recliner next to her oxygen machine. I drove her to chemo and radiation when she could no longer drive herself. I did what I could, or rather, as much as she would allow me to do. In all honesty, I could have done more.
I’ve often pondered if I regret not telling her to shove it and just moving back and forcing her to deal with it. But as much as I believe in caring for your loved ones when they need you, I also believe that a person doesn’t give up their autonomy just because they get sick. And I’m pretty sure that me, moving back into her house and giving up the stuff she knew I loved, wouldn’t have been selfless–it would have been me, assuaging my own guilt and pissing her off by treating this incredibly stubborn, independent woman like a child. So I respected her wishes, even though it killed me.
It probably made me look selfish to the outside world. But I was just doing what she wanted. And sometimes, when a person’s time is numbered, that’s the best thing you can do.