My questions for the doctors on the hospital room board the day before I am good copped by a surgeon and a doctor to send my mother to hospice.

YOU are allowed to grieve. You ARE allowed to be afraid. In the Next Two Weeks My Mother is Supposed to Die/My mother died.

Crystal Cook Marshall
8 min readApr 2, 2020

--

Cirrhosis Diaries, Post 8 —

Originally, I started writing this while sitting in a hospital room in late January 2020 with my rapidly dying mother. I felt torn about writing down what was spinning in me then. And then odd about sharing it. It would be too soon. Too raw. Too much. But here I am two months later, and now we are all expecting someone we know and love may die soon. I am certainly unprepared for more grief. I am still in several adult caretaker groups, and the posts have started: family members dying of what seemed to be, or was determined to be, Covid-19. Goodbyes said by phone, if at all.

After my mother’s diagnosis in December 2019 of cirrhosis due to untreated fatty liver disease, I started writing creative non-fiction again, or rather, it started writing through me.

Thinking she had years to live, not weeks, I envisioned hundreds of short pieces like this one relaying the day in and outs of her cirrhosis and the battles fought and won.

Instead, the bad joke I want to write starts: a doctor and a surgeon walk into a cirrhosis patient’s room. Now, feel free to revise “cirrhosis” to“terrible awful disease we don’t wish anyone to die from.” You can feel free to replace “cirrhosis” with a disease of your choice, including the one of this current pandemic. You can replace it in what I wrote above, and what comes next.

Now, on with the story.

The surgeon remains standing. The doctor sits on the little bench where I had slept over in the room Saturday night. I sit next to my mother. We talk about her and her condition like she is not in the room. And the mother I knew is not in the room. The day before she had woken up out of her delirium, just for four or five minutes, to wish my sister well, for her to get home safe, and then she was gone. Gone back into endless ranting, endless begging for water.

But here now, with what was left of her suitably doped up and reasonably quiet, the surgeon and the doctor good cop/good cop me. They carefully and slowly answer my questions. They have been trained for patience in cases like these. The doctor lingers a few minutes after the surgeon goes. He lets me know, in shorter sentences than I am writing here, that in a situation like this, he, too, would send his own mother to hospice.

There is no line, only a punch.

A half hour or so later, the liaison nurse I had rejected that morning, shows back up with a couple of papers for me to fill out.

No time to waste, huh?

They dope our mother up some more, load her in the transport.

I am supposed to be relieved.

I am supposed to be glad she will now be comfortable.

Everyone is now worried about my mother’s comfort.

In her entire life, she has never had so many people worrying about her comfort.

In what I write above, the details would need to be changed if my mother had had Covid-19. She would not have been allowed to hospice. In what comes next, she would have been disposed of by some branch of Homeland Security. Her deceased body would still be contagious.

The rest of the health and elder care system my mother had thus far encountered may have been subpar, but our small town had a fabulous hospice — a nonprofit charity started and supported by a local prominent family.

Our mother goes out with attention. The final leg of her long journey, she gets to ride in a chariot.

I have become a habitual overestimator. I ask silly questions of the intake social worker such as, what if she turns around? What happens if she survives longer than the hospice’s three week paid-for stay? Did I need to be looking for another nursing facility?

The next day, I rush around town, taking care of business. I am bringing my five year old son to say goodbye. Now, he would not be allowed in. We would not be allowed in. But two short months ago, he came in with me to say goodbye to this grandmother, before his other local grandmother picked him up.

After he leaves, I ask about my mother’s vital signs. The nurse comes in to report the ones taken early that morning. The blood pressure had been so low that the machine could barely read it. I know that is bad. I know that low temperatures and low blood pressures, I know this from tending to livestock, your body is no longer fighting; your body is shutting down.

I say more rather than ask — I ought to call my sister?

Yes, the nurse responds, whoever is going to come ought to come now.

I am torn about writing the details. They are too intimate.

I want you to know I do not fear writing them. I can deftly show them to you. They repeat in my head nonstop for several weeks. Then one day, like a bad dream in and of itself, those details fade. I physically want to reach into my past and grab them. But even pain cheats, and fades.

An hour or so after my sister’s arrival, a friend of mine comes. She has witnessed war back in her home country.

I can’t believe she is there, too, when I find myself standing at attention. I judge the sounds. I think, and I say, this is it.

We three are by her, and I have brought her cat, who is curled around her neck.

And like they do in the movies, I check for breathing.

I walk out into the hall, and I repeat, in a way, what I have already said. I find our mother’s nurse.

That was it, I say. She looks at me; things take a moment to register.

I think that was it, I repeat.

I had snuck and took pictures before my sister had arrived. Our mother had dropped to skin and bones. I did not take any photos of her dead. She was already on death’s bed. I can replay the final scene and now it seems it happened to someone else, in a totally different country.

The day after she dies, I fall into a fever and have walking pneumonia for the next six weeks. Our dog that went missing four weeks into my mother’s demise brings other drama into our lives: as we are walking into my mother’s final hours, a police captain calls me that our dog had jumped up on his car the night before along a major highway; a week after my mother passes, our dog supposedly crosses the yard of a nurse that had attended to her when she was still lucid. And, as this is ‘murica, I get someone threatening to shoot my dog if it crosses his property, and then threatening me. I have to deal with detectives. I have to get X-rays. I have to pick out an urn. I have to see doctors. I have to be careful.

I put together and put on a memorial for my mother in the town that had come to be her home in the 80’s through 2015. We eat breakfast together, her favorite meal. We share life highlights, and her friends share mainly the good times. A week later, someone I know has to cancel her mother’s memorial.The social distancing has started.

Our dog shows up ten miles from his last sighting. We are in full speed to get him. Then, he does not return to that yard he had been in. Or, he has not yet returned. We are at a loss at what to do next. He is eating well out of backyards. He is finding his way in what otherwise would seem an impossible situation. He has risen to an unfortunate occasion, and to a reality ringed by chance and poor choices.

My son and I abide by the stay at home order. My husband is an essential worker. This week he started wearing his mask any time he had to deal with people.

Why am I surprised I am tired? Yet the days and the hours do not drag. I have plenty to do here on the farm. I also have job interviews to get back to work. I have homeschooling to conduct right now. I have grants to finish. I have a book proposal a publisher is waiting on. I have livestock to tend to. Soon, soon, it will be time for our does to kid and for goat mothers and children together to eat the many green offerings of spring.

Married elderly couple relatives of an acquaintance have died of Covid-19. She posts their obituary on social media.

I am not ready. I am not ready for more grief this year. I feel terribly stupid for missing my dog. For how much effort I have put into finding him. I am a livestock steward, and I do my best by our animals. I cannot, in good conscience, not also do my best by our missing dog. I am amazed at his continued resilience, and at the wonderful kindness of so many strangers who have helped/are helping, and I am also astonished by the odd diabolical efforts of just a few. It only takes a few to stoke fear, now doesn’t it? And more than anything else, that fear is inconvenient; an obstacle thrown up to block understanding the real task at hand. Fear is an energy suck, and a tremendous time waster. It makes you tired. But I don’t feel anxious or afraid. I am over here doing what I can do.

I will write and rewrite the last few days, the last few hours of my mother’s demise again and again. There will always be a memory to mine. A memory blasting me.

Friends and relatives suggest I ought to move on regarding the search for our dog.

I want to respond:

Yes, maybe. But, don’t we all have our extravagances?

I give you permission to grieve whatever you need to grieve. Maybe you did not ever think before about whatever it is you are thinking now. Maybe it is modern life. Maybe it is how everything seems to have changed over night and hangs by a thread on the words of a person who wants to spin gold from his mouth.

Only the elderly. Only the compromised.

Grieve whatever you need to grieve, to find a way, if not forward, then at least upright.

--

--

Crystal Cook Marshall

STS researcher, social entrepreneur, systems rethinker, farmer, creative