Tag Archives: Family

Caregiver Log: Such, Such Agony

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.

Continue reading

Caregiver Log: Enmesh

NOTE: This blog post contains graphic descriptions of medical 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.

Continue reading

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.

Continue reading

Christmastide

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.

Continue reading

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

Caregiver Log: Meantime

A friend once said, “They call it the meantime for a reason…”

She was not referring to mean as meaning equivalency or purpose, but rather mean as in vicious and foul. And yes, enduring the decline in my mother’s health has been unpleasant. The knowing the end is coming but not knowing when or how is difficult. Yet, wishing for its end means only one thing.

Untreated Acute Leukemia does not go away on its own. Continue reading