When the Body Outlives the Mind

I’m comfortable with the fact that one day I will die. I’m not comfortable with the idea of becoming old and infirm, a distinction driven home to me these past two weeks. I am in my thirties, and all of my grandparents are alive. My maternal grandmother, Margaret, has not been doing well for awhile, and after these past two weeks her decline has been accelerating, leaving us all feeling that the end for her is near.

For over a decade now she has been in decline. It started when I was an undergrad and she had a stroke. She recovered enough to continue to volunteer at the library and be mobile and independent, but she never was as sharp as she once was, and her problems with dementia got a lot worse. What made it awkward was that she was aware of the dementia and when she would not be socially 100% there.

When I was pregnant with Sissy nearly four years ago she fell, which lead to a series of complications, one of them being that they had to remove her colon because of an infection. It was a risky surgery and there was a large chance she wouldn’t survive.

The day after the surgery I was scheduled to go in for my gender reveal ultrasound for Sissy, and in two weeks we were having Buddy’s third birthday party. I walked into the room, and it was the last time Margaret saw me and knew who I was. I walked up to her bed and she was calm, happy to be surrounded by her children and grandchildren, and she said, “I’m sorry I will die before Buddy’s birthday party.”

I stumbled over my words as my grandfather said, “Enough, Margaret, you’re not going to die!”

Yet she wasn’t scared. She was accepting and at peace with it. If anything she seemed excited, like she was about to go on a trip. My grandfather was the one who was scared.

She survived surgery. And she was never the same. For months she was furious she had survived and wished she was dead. She never walked again, though she did recover enough for my grandfather to take her home and care for her there. She has an ileostomy bag now, something that embarrasses her. Cognitively she’s not herself. When she would see me she thought I was my mother. She thinks her great-grandchildren are her grandchildren, and she’ll talk to me about people and places my mom would know but I wouldn’t. She can’t read anymore, which was a big source of joy for her. She sits in her wheelchair and exists as she watches her dignity ebb away.

That’s the way it was for nearly four years until a few weeks ago when she got the flu, which turned to pneumonia. Of course, at her age, it’s never just pneumonia. Now, she doesn’t recognize my mom, aunts, or grandfather. She refuses to eat and reports being in pain. She keeps asking to use the bathroom and doesn’t understand that she has a catheter. My mom thinks she’s shutting down, and at this point we’re all agreed that it’s time to move on to hospice.

When she got sick four years ago there was this sense of anything to preserve her life. Yet I think the cruelty of modern medicine is that we can keep a body going but not a mind. And to keep that body going there are a million indignities we must force that person to suffer. And given how accepting Margaret was in the face of death four years ago, I don’t think she would have wanted to endure these past four years.

Yes, because she lived she got to meet Sissy. However, she also knew I was pregnant and was comfortable with dying then. Between me and a cousin she’d met two great-grandchildren, and she seemed content to leave things off where they were. I hope that meeting Sissy and her fourth great-grandchild and other happy events made up for the indignities, but I’m not sure if they did. Only Margaret can say if it was worth it, and right now she can’t even tell who we are.

I think what makes this even worse is that she did not survive to have the dignity of dying at home in her sleep. We’re either looking at feeding tubes and machines to force her body to continue or hospice. There’s a chance she’ll start to eat again and go home, but it does not look good. And right now letting this continue seems cruel. She was furious when she survived four years ago. She’s not eating now. She’s telling us enough is enough.

My grandfather is the one most in denial. Talking with other people my age, we’re seeing a theme of our grandparents continuing with interventions, and then getting to a point where they regret it, and our parents watching this and begging us, “goodness, please let me go before it gets to this point.” In a dogged quest to extend the quantity of life we overlooked whether there was any sort of quality of life.

Ending her days in pain in a hospital not knowing who her loved ones are was not something I think Margaret wanted. Every time I think back to that day four years ago I’m confronted with the cruelty that was foisted upon her. She was ready to go then. She knew who we were, she felt loved, she still had her dignity.

Events like this force you to confront your own mortality. And questions such as when to let go are personal, tricky, and change from person to person. I know some people would want to be hooked up to machines and feeding tubes until the bitter end. Other people want to die in their homes, and will even kill themselves if they are going to have to live in a nursing home. And there are no right or wrong answers, only what is right for each individual person. But have we spoken to our loved ones about what we want? Have we left a written document requesting to not be put on machines?

For now, I’m left in this sickening position of hoping Margaret passes quickly. I feel she has been suffering enough for nearly four years and I don’t think she will get better. And even if she does, chances are we will end up here in another four years time, only this time worse (it gets worse every time). Since health and happiness no longer seemed realistic wishes for her, I wish her peace.

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