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.
These last three years weigh heavy on me- losing my mother in 2020; losing my brother (and my cat) in 2022; and watching Jenny be literally tortured by her condition for the past two years have taken their toll. Our bodies are an intricate balance of systems and once they are tipped too far, we fall apart quickly. I watched my mom fall apart… I watched my brother fall apart… I know why people turn away. End of life caregiving isn’t for wimps.
I’ve known Jenny for 25 years- half my life. I have walked with her through countless procedures. I know her medical history better than anyone and I am her power of attorney. And I will temporarily live in Rochester for at least the first two weeks of her hospital stay. After that, I’ll see what her prognosis requires me to do.
One mantra of the positive thought movement is that ‘if you believe in yourself, you can achieve anything!’. And we often hear phrases like ‘she’s winning her battle with cancer’ or ‘he lost his battle with MS’, as if there are winners and losers, as if only people who are tough enough or believe they can, will survive. I am not suggesting anyone give up hope. I am suggesting that a better message is, ‘no matter what happens, I will not abandon you.’
But that’s not the society we live in is it? The sick, the infirm, and the dying are hidden away in institutional care where it costs $4,000+ per month to have underpaid nurses and nurses aids try to keep up with 20 patients. That’s the number from Jenny’s only stay in a nursing home, in 2017. In fact, a nursing home maintaining minimum federal nurse staff levels would only provide a resident with about 20 minutes of nursing care per day.
This is why people choose to stay in their homes as long as possible and informal family caregivers have often been called ‘the backbone of America’s long-term care system.’ This is why I have helped Jenny to live independently for the last two years with the support of weekly in-home nursing care. No nursing home could have handled her condition. She would have been cleaning it by herself all day, every day anyway.
The hardest parts of being a caregiver are dealing with the Industrial Medical Complex and all its complications from insurance, lawyers, and lack of staff; dealing with the procedures themselves and the emotional distress they cause to the patient and the caregiver; and the crush of people outside the situation who have an opinion or who suddenly appear at the height of drama offering ‘help’ as a thin veneer to their own ego.
Here are the facts. Jenny has been mopping sludge out of an open wound in her gut for two years. A few people have come to visit her, more have donated money and, still more have offered encouragement on social media. God bless all of you for your generosity.
But this trip to Mayo is a journey for Jenny alone. It is her wish to only have visits from designated people. So please, hold your enthusiasm for when she returns to Minneapolis.
Our best guess on how this will play out is as follows:
- 2 days: Surgery and ICU
- About 5 days: ICU, intubated and unconscious
- About 5 days: ICU, intubated and conscious
- 1-2 weeks: ICU, breathing on own
- Then for an unknown length of time, long term recovery
- If there is no news, that means she’s still alive.
- I will provide support to Jenny and myself first, and update the rest of you when I can.
- If there is anything you need to say to her, do it now.
- No matter the outcome, whether she survives or not, her torture will end.
She’s free either way.
If you are so moved, you can read more graphic and gruesome details while helping Jenny by donating to her GoFundMe.
-Copyright C.M. Mounts, February 2023