What Sarah Said in Each Day

TW: palliative care

What Sarah Said

About two weeks ago, my Godmother was admitted to the hospital with a mystery chest infection. Now, the back story is that my Godmother has had MS as long as I’ve been alive, and has been struggling with an addiction to the medications she was prescribed in order to exist in the world. Quite a few years ago she lost her home, was in and out of psychiatric care, and eventually shuffled off to a long term care facility, where she continued her deep dive into depression. She was considered a suicide risk for some time, and requested MAID, but her basis was not the fact that she had MS but the fact that she was depressed, and MH MAID had not been part of the legislation at the time, and she was denied. I don’t know why she never reapplied with MS as the reason, but MAID has not been on the table since she was denied.

When she was admitted, things looked dire. And then a series of tests that had been started before she was admitted came back, and things looked even worse. She now also had cancer running rampant throughout her body. If her lungs didn’t improve, she had days. I don’t remember another prognosis being given.

I was given a compassionate leave at work to go attend my Godmother’s last days.
But my godmother did improve. When my mom and I showed up at the hospital, they had “no record” of her admission. Apparently they’d discharged her to a palliative care unit in the LTC facility she’d previously been in. So after a frankly terrifying hour between wondering if she’d died or WTF was going on, we found out that all the information about her care was going to her deadbeat brother, who abandoned her and despite his extreme wealth, couldn’t even be bothered to help her live in an even marginally better facility.
I have so much anger towards them. The primary contact never bothered to tell one of the two people who have spent the last 15+ years taking care of his sister (my sister and my Godmother’s friend, J).
We visited my Godmother every day for 8 days. From day two to three her decline was significant. I recall thinking that if she kept up at this rate she wouldn’t last a few days.

This is where this gets… hard to write about. I have often talked about my own tenuous grasp on living. I wrestle with intrusive thoughts that tell me repeatedly that the struggle isn’t worth it, that death is easier. And I have that fighting against how much good I have in my life. I am also staunchly death-positive, I believe that dying, death, and grieving should be open conversations among loved ones. That the reason our society is such absolute garbage when it comes to end-of-life care is because of this pervasive fear of death. I have been fighting thoughts of my death, or death of my loved ones, since I was, as far as I can remember, about 16, and the fact that no one talks about this shit only isolated me inside my own hell. I didn’t understand what intrusive thoughts were until I was well into my thirties. That is a long time to fight a faceless demon.
Losing my dad at 22 also unceremoniously shoved me into seeing/feeling that the death of a loved one was inevitable, that I would and will lose everyone eventually.
When AB died in 2014, a nurse who, as it seemed to me (but discussing this with the family this last week, they did not see it the same) she took matters into her own hands, and when her own disease had progressed to an untenable point, she did just what she needed to (which was frankly very little) to cause her system to shut down. She declined so fast that by the time I was contacted and rushed home, she was unconscious and would never wake up. I watched her die with my mom, my sister, and my Godmother (her best friend), it took hours after “pulling the plug”, and after her last breath instead of relief, I felt panic.
It is not the intrusive thoughts that make me admire AB’s grit. I think that everyone deserves dignity in death and watching my Godmother these last 10+ years, listening to the indignities my sister told me of her care, the apathy of her blood family, I frankly wished my Godmother could achieve the same end. Go out on her terms, before the decline robs her of her autonomy and her dignity. I always assumed MS would have killed her by now.

Well, my Godmother wasn’t so lucky. I am flying home this morning, and my Godmother is still somehow alive, though mostly unresponsive. After the first few days of visiting her. Sitting with her, her body familiar but her imposing character terrifyingly absent. Sometimes she’d cry, asking why she was still alive, that the doctor told her she was dying, why wasn’t she dead yet, that it wasn’t fair that we got to leave, but she couldn’t. It was heartbreaking watching her struggle to get up, but barely even strong enough to lift her arms. Every minute in this place felt like torture and I spent most of it dissociating.
I did get one glimpse of her, and I am fucking cherishing this memory. My Godmother and my mom didn’t get along most of the time, much like my mom and AB. Mom doesn’t know how to not spew her feelings all over everyone around her. She talks to people in these terrible situations with a sickly sweet voice dripping with pity, and after my Godmother mumbled her needs in a way we couldn’t understand, my mom used this voice to tell her that when my sister returned (she’d briefly stepped out for a work call), my sister could help us understand.
In a voice clear as day, shockingly lucid, my Godmother said, “Oh you can go shove it up your ass”. Shocked, mom and I looked at each other. She asked me, “Now who do you think that was for?” I laughed and said, “YOU!” She said, “I’m going to believe it was for her family”.

I have been reliving this moment on a reel, waiting for the moment I could write it down. It makes me so happy given the absolute dumpster fire this situation is.

The video I posted at the top of this entry, I have spent a LOT of time thinking about since watching AB die. There’s a line, “But I’ve been thinking of what Sarah said, that, “Love is watching someone die.” So who’s going to watch you die.

These last 8 days are some of the hardest I remember having. This was so much worse than watching AB die. After the first few visits, I started thinking, hoping, that she’d died in the night. And feeling disappointed when we found her still languishing in her bed feels so fucking terrible. The only solace is knowing that she wants to die, that her suffering will only end with her death.

I’ve tried really hard to use the words death and dying instead of the colloquialisms that our society favours. Death is hard and stark and the language should reflect that, not be softened with words like “late” and “passing”. Even with all my experiences in my head, I still find myself reverting to softened language.

I’m sorry if this was hard to read. I am grateful if you made it this far.

I am going to spend the next 12 hours high off my fucking face, playing video games and having life-affirming sex with my husband.