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. Read more…

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. Read more…

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… Read more…

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. Read more…

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. Read more…

Caregiver Log: AML ODAT

As a daily practice, at the start of my workday, I take a sticky note and write ‘ODAT’ across the top, ‘TMI’ down the left. No, not ‘Too Much Information’… ‘Three Most Important’ (TMI) and ‘One Day At a Time’ (ODAT).

One Day at a Time, is a platitude but it’s worth attention. ‘The Now’ is all there is. Dogs have this figured out. The past only exists in memory and the future doesn’t exist at all- the unchangeable past and unknowable future. And so, what to do with this right now? Allow anger at past injustice eat me alive and ruin today? Or fear of the future, the what-ifs of anticipated trouble?

Sometimes, they are almost impossible to escape. But the good or bad news is, healing happens in its time, not our time. We must accept what is true today. Read more…

Caregiver Log: Remote

I am new to remote work. I have resisted it for years, even though I am an IT professional and could contract my services.  But I never wanted my work stress to interfere with my home stress. Those two stresses always and forever needed to remain apart, simply so that I had one place to escape from the other. I know you working professionals understand.

My ‘worst fears’ have been confirmed- I feel the same stress in my home office as I do in my work cube. But this 2nd floor home office with a view and comfy chair is not my home. I am at a remote location in Illinois, staying with my generous sister. I have two rooms dedicated to my needs- a bedroom and a connected office with a table and a washer/dryer. I have my laptop, docking station, wireless internet, keyboard and mouse, and a large standalone monitor- every writers dream! Read more…

Summer’s End

I can’t really remember
What I have been doing
These past months, years

Maybe it is a mercy
Maybe it is survival
Maybe it is the only way

To get through it
To the other side
To the down time

I guess we all have the option
To not get involved
Close the door, turn on the TV

Shut it out, shut it down, shut it off
20 + 20 + 20 is an hour
To focus that long isn’t that hard

Run ink tracks through the page
Ride rubber into the sunrise
Coffee fueled, driven, driven mad

Long nights, sit in summer
Meditative rhythm of the respirator
Company of paper and sterile gauze

Passersby issue the hairy eyeball
Jaded nurses yearn for retirement
She walks now, I run

If I could get on my bike
Turn back time
No one would see me til September

 

-Copyright C.M. Mounts, August 2017

Nursing home

There is still life here
Kindness, courtesy
It is not where anyone
Wants to be
Wants to end up
People here have stories
They have lives
They miss their families
They miss their mom
They may be convinced that
Their mom is coming
To pick them up soon
At eighty years in failing health
They might be right
Whether it is an atrophied brain
Or an atrophied body
There are still hopes
There are still desires
There are still feelings
Of love, of longing
Pain makes life immediate
Pain rewrites brain pathways
How you think of the world
Pain relief is needed
A Vicodin, a clasped hand
A string of Christmas lights
On the window

-Copyright C.M. Mounts, February 2017

Caregiver

Off
Keep it off
Away

I love you
I have to go

Be well
Be safe
Good night

If you need me
Get ahold of me

Don’t expect
Response
Right away

I am not angry
I am tired
I gave it all

Time to refill
Relax, reflect
Storm coming

In space between
Turbulent times
Leave a message

-Copyright C.M. Mounts, April 2017