Caregiver Log: White Horses

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

White horses are breaking waves of the sea or ocean. Also known as whitecaps, these small surface waves break offshore and impede open water swimmers. But as it’s said, slow progress is better than no progress.

Jenny received a radical small bowel resection on March 1, 2023 and has been hospitalized at Mayo Clinic for recovery ever since. By some miracle, she did not go into ICU after her surgery. She has a private room with a view, on the 5th floor at the Saint Mary’s Hospital Campus . Over the last four weeks, she’s gone from being tied to the wall by monitors, IVs, tubes, and machines to now walking herself to the bathroom and taking medication by mouth.

But it is this last piece that is the problem. Digestion.

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Caregiver Log: Miracle Workers

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

Last November, I was lucky enough to host the awards gala at the League of Minnesota Poets (LOMP) 2022 Fall Poetry Conference at the Arrowwood Resort in Alexandria, MN. After the gala, there was a late-night poetry reading in the LOMP hotel room. One of the big winners is a nurse who works at Mayo Clinic. She read a poem about how patients and their families expect them to be miracle workers, but they’re not.

I get it. We are all still mortal. They can’t save everybody. But with all due respect, she’s wrong.

Jenny and I arrived in Rochester on the evening of Monday, February 27 to an Airbnb, about four blocks from Mayo Clinic’s Saint Mary’s Campus, where I would be staying for two weeks if everything went well, fully aware that Jenny’s surgery could be fatal.

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Caregiver Log: Hail Mary

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

Today is my brother’s birthday. He would be 63 years old, but he died on July 17, 2022. He was in an incurable cycle of pneumonia, other infections, and hospital stays. I had to make the choice between length of life and quality of life. And while I know signing those pink hospice papers was the right decision, it doesn’t make it any easier.

It is the same for every person who is called upon to be the decision maker for the seriously ill and the dying. The will to live is so fierce, so basic within the construction of lifeforms, that even my mother who had no hope of survival from Leukemia, fought to the very end.

Tomorrow, I will pack up my suitcase and home office and drive to pick up Jenny, with her duffel bags of medical supplies and comfortable clothing, and take her to Rochester, MN for what can only be categorized as a ‘Hail Mary’ surgery at Mayo Clinic on March 1, 2023.

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Caregiver Log: Hostile Abdomen

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

In two weeks, Jenny will travel to Mayo Clinic in Rochester, MN where she will be admitted for her long awaited abdominal surgery on March 1.

Jenny has what is known as a hostile abdomen: “Hostile abdomen refers to a situation where the abdominal cavity is open and scarred into a one solid mass with fragile small bowel loops adhered to each other, often complicated with enterocutaneous or “entero- atmospheric” fistulae and retraction of the abdominal wall edges – a surgical nightmare.” (journals.sagepub.com/doi/pdf/10.1177/145749690809700301)

The fact that Jenny has been able to escape death for so many years has created a myth within her community- that no matter the odds, she’ll pull through. But while Jenny is the most courageous person I have ever known and has a will to live stronger than most, she is mortal. And she is on her 9th life. If the surgeons at Mayo Clinic can not help her, no one can.

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Caregiver Log: Big Wave Surfing

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

I have been a caregiver on and off for almost 24 years and have watched over three different people. It’s a big word ‘caregiver’ because it encompasses so many different circumstances of care. For one thing, I am referred to as a ‘Family Caregiver’ as opposed to professional caregivers like aides and nurses. But as Merriam-Webster defines it, we are “a person who provides direct care (as for children, elderly people, or the chronically ill).” The differences between those three groups of people are where the details of caregiving gets complicated.

I recently attended a 4-hour caregiver training, my first in all of these years as a member of a group of fellow caregivers. What a boost to be among people who really understand. The last hour was supposed to be about caregiver self-care but they ran short- how typical. Most of the people in that training were older parents of adult children with developmentally disabilities. Some were younger parents of minor children with physical disabilities. And then there was me. We all care for people with different conditions and face different challenges, but share the same risks: isolation, burnout, lack of professional resources, financial strain, and lack of personal support.

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P.S. 2022

This post is the annual update of my writing career, such as it is.

I am exhausted. After a couple years of waiting in limbo, the doors of opportunity opened. 2022 was the year of small business development, poetry, travel, and caregiving. Throw in my day job and there’s my whole life.

Poetry

I attended the Minnesota Northwoods Writers Conference at Bemidji State University on June 20-26, 2022. This is an excellent writing retreat on the shores of beautiful Lake Bemidji. As an attendee of one of the writing workshops, it was full immersion in the craft from 7am to 9pm for a full week. I never wanted to come home.

I was honored to emcee the League of Minnesota Poets Fall Conference awards gala at Arrowwood Resort in Alexandria, MN on November 4-6, 2022. My balcony faced Lake Darling and I watched a flock of ducks lift off in the lake in the thin colors before sunrise my last morning there.

Four of my poems were published before life got ahold of me and I paused submissions:

4/10/22- 1st grade report card note: “Too much daydreaming” with Lyricality.org

04/27/22- Let Us Consider was one of six winners of the Environmental (In)justice in Mni Sóta Maḳoce Storytelling Contest, sponsored by Saint Paul Almanac and University of St. Thomas Sustainable Communities Partnership.

6/28/22 Lace & Half-Naked in the Depths of Winter with Spring Thaw, Itasca Community College

You can say that I should make time, make submitting my work for publication a priority and you’d be right. But it turns out traveling, running a small business, being a caregiver, having a career, and actually writing takes a whole lot of time.

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P.S. 2021

This post is the annual update of my writing career, such as it is.

2021 was a lost year: COVID-19, political strife, shipping crisis, etc. It was one of the roughest for me personally, mostly due to helping two loved ones- my friend Jenny and my brother Steve-  through major medical issues that nearly claimed their lives. They are both disabled persons and I serve as caregiver with power of attorney for both. I recently became certified as a PCA because why the hell not.

But even though 2021 was ‘lost’, much like 2020, I still managed to accomplish a lot.

Blogging

My last blog post was on March 21, 2021, shortly after Jenny went through another series of abdominal surgeries which she survived but with such extreme complications that her quality of life is greatly diminished. I have used my blog to keep friends and family updated on the status of these medical crises, but I just stopped abruptly.

These blog posts take a lot of effort to put together and the strain of my life made it not reasonable anymore. Maybe I should have kept it up for posterity or because I had blogged weekly for years, but I just was no longer able to devote the time. It’s all recorded in my journals.

Still, I made nine blog posts and had about 914 views, for whatever that’s worth. Personal blogs with meandering topics are not popular. Continue reading

Caregiver Log: Such, Such Agony

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

It’s been almost a week since Jenny went under the knife, three times, to try to repair damage to her intestines. This is just the next chapter in a long history of medical problems and procedures. For more information, see my last blog post.

On Monday, they performed the initial exploratory surgery to see what was going on inside. The surgeons worked for nine hours- patching holes, releasing adhesions, and cutting away a twist in her small intestines. When I found her Monday night, she was on a respirator and sedated, resting peacefully.

On Tuesday, they installed the mesh to support her abdomen in a four-hour surgery but didn’t close the incision due to all the swelling and massive inflammation of her bowels. They had to wait for conditions to improve. They had to wait to see if they had found everything. When I visited Tuesday night, she was still asleep on the respirator, but looking less well, more ‘beaten up’ as you would expect.

On Wednesday, we waited. She was still sedated and on the respirator, but opened her eyes for a moment when I called her name. I monitor her vitals on these visits. Things were happening- liquids were becoming clear (good) but her heart rate and blood pressure were going down (bad), and her color was very pale (bad). Keeping her abdomen open was a risk they had to take but the rest of her body was reacting.

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Events: What is Your White Whale?

Mixing Melville’s “Moby Dick” w/ contemporary politics, Loren Niemi asks “What is Your White Whale?” at this FREE Spoken Word Cafe event.

March 20, 2021 ~ 7pm CDT ~ FREE event

Loren Niemi will tell a blended story using Melville’s Moby Dick classic as a crucible to examine our current situation in American Culture as obsession and fantasy rein powerful and dangerous. He will ask:

“What is your White Whale?”

While the essence of the story has always been “Man fights whale, whale wins,” Loren has used the elements of a young man’s search for adventure, whaling as an industry, our obsessions and grievances, and homo eroticism which are all present in the novel as a metaphor (or if you would prefer, a Rorschach) for understanding American Culture/ This performance will touch on in our current situation, the creation and pursuit of any number of “white whales.”

Loren Niemi has been telling personal and reconfigured traditional stoires for over four decades now. His work combines vivid imagery with touches of poetry and a sur;prising intimacy. Loren’s recent collection of stories, “What Haunts Us” won a Midwest West Book Award for “Sci-Fi / Fantasy / Hoirror / Paranormal” fiction in 2020

Caregiver Log: Enmesh

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

Dear Friends,

On June 16,2016, I read a cryptic message on Facebook from my friend Jenny. She had checked herself into the emergency room due to unexplained excruciating pain. For most people, this would be cause for alarm and while it was concerning, it was not unusual.

You see, Jenny had her first surgery in 1983 and 45+ surgeries since: 4 back surgeries between 1984-1989; first tonsillectomy in 1986, second in 2002 (they can grow back); breast cancer and bilateral mastectomy in 2004; emergency gal bladder removal that was scheduled for outpatient and ended up as 3 weeks in the hospital in 2005; neck fusion and breast reconstruction in 2011; knee surgery in 2016.

I have known Jenny since 1999 and have been present for most of her surgeries for the past 22 years. I am her primary care giver and medical power of attorney. So, I didn’t call her to see what was going on that night, I just showed up.

Her knee surgery in May 2016 had been big trouble because she was allergic to the substance that they injected to replace her cartilage and they had to remove it. I guess I assumed this visit to the hospital was related. But when I walked into the ER, I found her in a condition worse than I have ever seen.

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