Picture of two hands clasped, one hand is purple from the affects of cirrhosis.
My mother’s hands at rest, still in a pose of pleading.

There Must Be Some Kind of Way Outta Here

Cirrhosis Diaries, Post 7.

For five days straight, any time my mother has been awake, she has begged non-stop to, “Please give me some water.” Though she pleaded more faintly five days ago when she had even more illness happening simultaneously, now that her blood pressure and body temperature had been stabilized and she had five liters of fluid drained from her abdomen, her voice is more forceful and she alternates this refrain with the occasional “don’t cover me up,” “please let me down easy,” “scratch my back,” “scratch my arm,” “oo, oo, oo,” or, “please let me die,” into which she sometimes inserts a “don’t.”

Early Saturday afternoon my family and I loaded up more painted signs to post looking for our lost livestock guardian dog. I was going to set them out in a different part of the county, and later that day, we’d hit some exits with them in the direction of Winston-Salem. But, on my daily trip to the hospital in the county seat, after its problems being ignored for a year, the back door on the Honda van finally broke.

I turned around at the gas station where I was going to hang a lost dog sign, and drove home with the side door open, the heater blasting me at the front and icy air splashing my neck. Back in our driveway, my husband and I jimmied it mostly closed. I tallied up one more thing now to do this coming week.

Rather than go alone back to town, and then come back out to get my husband and son, they got themselves together and we headed out in our big red diesel Surburban. I’d stop in briefly ay my mother’s “new” room. That day she had been moved from the critical care unit down to the heart ward, though, not much had changed in her circumstances: she still was in a massive sepsis delerium, her small bowel was still partially obstructed, and she was about to enter her second week without any food beyond her IV drip.

During this shorter visit, my mother ran through her standards, throwing in an occasional punctuation with my first name. I guess, under usual circumstances, being released from the critical care floor might be a good sign. My sister had spent most of the day with her. Our mother had had two minutes of near normal lucidity, discussing the weather and asking my sister to be careful getting home, before falling back into the delerium-induced loops in full force.

My sister and I wondered what improvement in our mother’s multiple sicknesses might even might mean. The newly diagnosed cirrhosis from untreated fatty liver disease had caused her body to stop processing protein, and her body had accordingly wasted to skin hanging from her bones, only tightening in any way around her fluid swollen abdomen. Add in all the other complications of heart disease and diabetes, in this weakened state, any other layer of complication could mean both an even faster demise and exponentially more misery.

We discussed the lousy options.

If our mother did improve enough to go to the skilled nursing at the hospital meant for patients needing more care than a regular nursing home could provide, would she regain any strength, and then, after the allowed four weeks there, where to next?

Ten days ago she had been able to walk with a walker, but the inappropriate level of care at what I had been assured was the best skilled nursing facility in Statesville, NC had left her quickly in such a mess that we had moved in five weeks from her sitting up in a chair there on her own, perky, cheering on the presidental impeachment hearing and discussing assisted living options (so gratefully paid for by Medicaid in North Carolina, but all of this may end soon under the current administration, then what? Where?), to my calling the local hopice house, guaranteeing them that I understood a transfer to their facility was for patients with only “two or three weeks left.”

My husband wasn’t released to drive yet from his appendectomy surgery two weeks prior, so I clambered back into the driver’s seat to take us to our next destination: a party of fellow farmers 4o miles away.

Along the way, my husband and son chatted about the means and weapons of military engagement. Our son, five, named for an ancient warrior, often wanted to know all about the various wars family members had been in, what women did where during various wars, how old you could be before you could go.

I had explained about his great uncles and cousins who served in the Pacific, if and how anyone had been in the European theater, a great-grandfather who had been in Cuba, one who survive the Death March of the Bhutan, what I knew of who and how in the US Civil War, and his cousin who had been on the ground in Vietnam.

Along with a book on the US-Spanish war, from the library he had checked out a DK book on Vietnam. He couldn’t not yet read, so he sat in his car seat grilling me on the various photos: what were the French doing there? What is a hand grenade? Did the women in Vietnam also fight? Why was it a war without any real winners? Didn’t the US always win? He would find some new way to spin the war, like, if we destroyed their land, didn’t that mean the US had won? And, no, we’d explain, sometimes, there just aren’t any real winners.

Grateful for the few social hours to get away from ourselves and into someone else’s lives, at the party we immersed our concentration on their hoop houses and “new” used equipment, let our kids run around outside in the Southern January briskness, and eat spicy soups outdoors at government surplus picnic tables (underlining the man of the house’s obsession with government deals and auctions).

On our way, the hospital had called and asked if I could come spend the night there in my mother’s room. With as agitated as she had been, they worried she might somehow pull out her various lines and cords, or somehow fall out of bed. I agreed I would be there by 9. At the party, I set the timer on my phone so we’d know when to go.

Our son had made a friend, so I sat on the back porch, watching the two boys chase each other in the moonlight, playing Freddie Kruger, or zombies who were going to eat you.

Another farmer joined me on the porch. Our host also had an interest in a brewery, so the beer had been flowing. She began telling me about her Vietnam vet father and his recent odd form of dementia, where he could no longer make good or rational choices.

It’s nearly 8 AM the next morning, and my mother is telling the nurse checking her vitals, to please “don’t let me die,” and to “let me die slowly.”

Farmer, writer, STS researcher, social entrepreneur, systems rethinker

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