Tag Archives: Health

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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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

Caregiver Log: Last Call

My mother turns to me as we sit in the transfusion center, IV pumping platelets into her vein, to say “This will probably be the last time.” That was Friday May 1st.

On Monday May 4th, I check on her at 4am and she insists she needs a shower. I foolishly and half asleep agree to help her. She seems lucid. I have not yet learned to expect high fever and recognize delirium first thing in the morning. It is a disaster in which I am able to help her into the shower, begin to wash her, then have her tell me to turn it off and insist she is not in the shower. “I’m pretty sure you’re in the shower, mom.” Moving her out and putting her back in bed is a struggle and she almost falls to the floor. She can’t walk. Her knees give out and she is slippery. I put her in bed, give her meds, and tell her I will return.

At 7am, the fever is gone and I feed her. When my sister Maureen arrives to help me dress her and take her to the appointment, mom says, “I don’t think I can do it.” But I am determined. Whatever it takes, come hell or high water, we will get her to the cancer care center for her labs.

Then high water comes. Continue reading

Caregiver Log: hospice

My mother is in end stages of Acute Leukemia. Infections are the leading cause of death for AML patients, followed by hemorrhaging. If you have a fever, you can’t get a blood test. If you can’t get a blood test, you can’t get a transfusion. If you can’t get a transfusion, you can not survive.

And here we are.

Mom’s fever has hovered between 101-102 since Saturday. No Tylenol or time can break it. Monday morning, she was too weak to get into the car to go to the cancer care clinic. She is complaining about pain, the result of an infection in her ear and gums. This is a persistent issue that her lack of white blood cells can not fight off. We call for antibiotics, but the medical profession has tunnel vision… the fever might be a virus… might be COVID-19… Continue reading

Caregiver Log: COVID-19

My friend’s mother died on Monday, April 20, 2020, from COVID-19.

It is the first death from this disease in my social circle. But it will not be the last.

I spend my mornings helping my mother who is in late stage acute leukemia. Three days a week, she has blood tests to check if she requires a transfusion and two days a week she does. I am not allowed to accompany her into the cancer clinic or the infusion center because of the risk of transferring COVID-19.

As I wait in the car, I see people in various stages of cancer treatment come and go. Even the ones in wheelchairs are dropped in the roundabout and carted into the facility by masked and gloved staff. They range in age from their 40’s to 80’s. Some have hair, others don’t. Some can walk without help, others like my mom need a cane. Leukemia is the most common form of cancer in children 0-14 years of age, but they are at the children’s hospital. Continue reading