Tag Archives: Family

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 may 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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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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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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Holiday Hindsight

You might be thinking, “Why are you writing about Christmas? That ended two weeks ago.”

And you would be wrong. The Christmas holiday season ends on January 5,6, or 13 depending on your cultural and/or religious traditions. I define Christmastide as December 25 to January 5, the 12th night and the Feast of the Epiphany which runs into January 6, Three King’s Day which is widely celebrated in Latin America.

Yes, the ‘Twelve Days of Christmas’ is not just a Christmas carol about insane gift expectations. And with the shipping overload COVID-19 put on USPS, it’s a good thing. Gifts arrived during Christmastide, but maybe not by December 25. But no matter because gifts are not really the point.

Our end of year festivals have been celebrated in one way or another in the Northern Hemisphere for millennia, because of the winter solstice. It is not pagan to celebrate the return of the light. It is astronomy, the very physical reality of our planet’s axis. It is also a celebration of a life preserving harvest, of family and community before we all hibernate for winter and try not to starve. This perspective has been lost with the technological advances of the modern world. But if this year has taught me anything, it’s how quickly we can revert to an earlier way of life.

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Your Christmas gifts are not late.

Now, that doesn’t mean they will arrive on December 25. The current USPS delivery load is estimated at 40% over normal and 19,000 of their workers are out due to COVID-19 symptoms or exposure. Those of us who respect the opinions of medical experts and the health department are not delivering packages ourselves as we stay home for the holiday and ship instead. It’s a stressful time to be working at the post office.

But still, your Christmas gifts are not late. Christmas is actually a twelve-day festival called Christmastide which begins December 25 and ends January 6. In fact in Latin America, the day to exchange gifts is the Epiphany, the commemoration of the visit of the Magi to the Christ child and the offering of their gifts of gold, frankincense, and myrrh.

That last one, myrrh is an embalming oil. Whether you believe in COVID-19 or not, there are 400,000+ more deaths in 2020 than in 2019, the largest yearly increase since 1919 and the Spanish Flu. I will ask the question to the naysayers again: if you include total deaths together regardless of cause, what exactly explains the increase? Continue reading

Farm Table Thanksgiving

I write this at my dining room table, a custom built 8-foot, 250+ pound, white oak farm table, so new the clear coat has not cured yet. It arrived only two weeks ago, just in time for a Thanksgiving feast that will not happen.

For years, I hosted ‘Wayfarers Thanksgiving’, a dinner party for ‘orphans’, for those of us who left our places of origin for opportunities in the Twin Cities and had no family to spend the holiday with. I was in a one-bedroom apartment with a view of an alley and no dining room table. We packed in the living room around a coffee table and sat on paisley mustard pillows suitable for outdoor furniture.

I have my first home now, a condo with a fireplace, and a dining room big enough to host such a party. But there is no party, only dinner for two in the sunroom. I cannot risk COVID-19. It’s not for my sake, but for all the vulnerable adults in my life. I would survive but I cannot risk spreading it first, second, or third hand to others. I know everyone is sick of hearing about it, but COVID-19 isn’t over just because you’re bored with it.

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Caregiver Log: Safe Travels

My mom’s 80th birthday is this week.

At least, it would have been. She died on Mother’s Day. She was 79 years, 10 months, and 23 days old. Leukemia took her or rather the malfunction of the body that leukemia causes. Near the end, I took an armpit temperature of 103 degrees because she was unconscious and her jaw was clenched. You can add 1-2 degrees to that for her actual temperature. Children’s cherry liquid Tylenol was no match for it. Systemic infection probably ended her life.

And it was a fast, peaceful death in her own bed, with her family. We were able to have a COVID-19 social distance visitation at the funeral home. There were so many beautiful flowers and quite a few people came to pay their respects. Her funeral was a private, gravesite service, followed by a family luncheon afterward. We even had a cake and candles for my nephew whose 35th birthday was the same day as the visitation.

Life must go on. Continue reading