There’s nothing like it really, taking care of someone who is dying. Because every day is a crisis and a miracle, maybe the end, maybe squeaking through to see another day. And there’s no one to tell you how to do it, because how could there be? Every day is different and numbingly the same.
Some people call parents caregivers and, yes, they do give care, but unless their child has cancer or other special needs, it is not the same as that other caregiving, the one where parent and child are reversed, the one where everything is turned upside-down. Getting a kid to school on time with a freshly prepared lunch is a challenge, but it’s not feeding someone through a tube five times a day, it’s not going to the doctor three or four times a week, it’s not giving shots and breathing treatments and walkers and supplemental oxygen.
It’s not hearing that thump in the middle of the night, the night you were praying to finally get some rest. It’s not calling 911 in the wee hours of the morning, watching the room fill up with a dozen sleepy fireman, yawning as they wait for the paramedics to decide whether the patient stays or goes. It’s not trying to sleep in a chair in a trauma bay, being woken up by a doctor who wants to know exactly what happened, being woken up by a nurse who wants to know what medicine he takes, being woken up by a med student who is helping the doctor who woke you up fifteen minutes earlier. It’s being grilled by a social worker, asking why you weren’t there to help him get to the bathroom, trying to explain that you aren’t a robot, that you needed some sleep, that he tried to get the bathroom alone so you could rest. It’s being downgraded (upgraded?) from Trauma to the ER and finally to an actual hospital room. It’s hoping that this time the urinal won’t spill on the sheets. It’s tripping on the oxygen tube and bruising your ankle so bad that you wind up in a boot. It’s eating alone watching reruns of ancient TV shows because he is no longer allowed to eat real food. It’s struggling through a medical building with a walker and an oxygen tank on a dolly because the medical supply place has sent a wheelchair so big you can’t lift it. It’s being tired and lost and guilty and angry all at the same time.
Then one day, caregiving is over. And people go on as if you haven’t been living in a combat zone for months and months, as if everything is fine, as if nothing has ever even happened. But it has happened. To him, to you. And when you go to lunch at one of the old places, the places you went when it wasn’t quite so bad, when he could still eat, when it was just the walker and not the oxygen tank, you sit at his favorite table and you cry.