What It’s Really Like to Care for a Dying Parent

There are two things that movies consistently get wrong: sex and death.

Just like no real-life sex scene has ever involved seamless, body-fluid-free sex (I, for one, seem to consistently get stuck in my skinny jeans while covertly trying to take them off), very few deaths are the simple, dignified situations we see portrayed on screen. Death, real death, is a messy, confusing process for everyone involved.

A few months ago I wrote an article for xoJane about my mother, who was diagnosed with terminal brain cancer. At the time she had plateaued. Roughly three weeks ago, however, that changed.

Determined to walk, she hauled herself out of bed — and promptly fractured her pelvis. At the time, she was still receiving treatment — now she’s in hospice. As terrible as it was before, this is worse. She is completely bedridden and has a catheter. Despite everyone’s best efforts, she immediately got a UTI and yeast infection upon arriving home. She’s restless — she’s scared. What little she says rarely makes sense. She is clearly, obviously dying.

How do you care for someone who is dying? We all have a pretty good idea of what it means to nurse someone back to health, but how do you compassionately nurse them into death?

Even typing that raises my hackles a little. We live in a society that prizes life — by any means, in any shape — above all else, so reconciling that programming with what is clearly worse than death is difficult, to say the least. I am completely pro-choice and very much believe assisted suicide should be legal. But nevertheless, the ethical dance I’m doing now feels fraught with peril. I usually lay my mom’s pills out with her breakfast. She doesn’t ask for food or water, but I still bring them.When she does eat, she doesn’t eat much — a bite here and there.

And don’t even get me started on the morphine. She’s agitated a lot of the time — to the point of attempting to to get out of bed — and morphine helps calm her. But is it wrong to administer it in order to relieve psychic, not physical, pain? While the fracture is painful, the truth is I dose her more for the agitation than for the pain. Is that merciful, or profoundly messed up?

These are the questions I wrestle with daily. I know my mom — she would have never wanted to live like this. One of the last clear things she said to me when she was diagnosed was that she didn’t want to dwindle.

I can see the pain and frustration on her face when I tell her she can’t walk, or when I have to clean her after a bowel movement. But at the same time, I’m not sure where my place is in this process. She is mostly non-communicative, so I can only guess at what she wants. I have asked her if she’s tired, if she’s ready to let go — her only response is a blank stare.

Recently, I met with a social worker to discuss mortuaries, and on the back page of the packet she gave me there was a section regarding donating the body for scientific purposes, specifically the eyes. I felt like I’d been sucker punched. I believe in donating one’s organs for the greater good, but how do you make that decision for someone else? I know my mom is an organ donor, but…which organs? How many organs? Is there really a moral difference between donating someone’s eyes and donating someone’s kidneys, or am I just being squeamish?

The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether or not to give someone’s organs away while they’re still conscious in another room.

Tomorrow will be the one-year anniversary of my mom’s diagnosis. She’s made it much farther than anyone ever predicted, but I can’t pretend that I believe that’s a good thing. A family friend told me that I’d look back and treasure this extra time I was able to spend with my mom — I wish that were true, but it isn’t. I’ve watched her do exactly what she stated she didn’t want to do — dwindle. It’s horrific, and I know neither she nor I expected it to be like this.

Which is why I’m writing this article — I think it’s important to open a frank dialogue about what it means to die. How do we help our loved ones die? What, exactly, do heroic measures mean to different individuals? For one person it might be CPR, but for another, it might be administering any medication at all, down to steroids or anticonvulsants. What are tolerable living circumstances — i.e., what happens if you become bed bound? Incontinent??

These are tough questions, and they’re usually brought up too late, whispered shamefully in the corridor of a hospital. But my hope is that, just like we’ve learned to discuss with our children what they should actually expect from sex, we’ll someday be able to talk openly to one another about what we can really expect from death.

Gracie F. is a writer and contributor to xoJane. This story originally appeared on xoJane.com.