Category Archives: Caregiver

Caregiver Log: COVID-19

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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

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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 →

Caregiver Log: AML ODAT

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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. Continue reading →

Caregiver Log: Remote

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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! Continue reading →

Caregiver Log: Awaiting Censure

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My mother has Acute Leukemia and is nearing the end of her life. She now receives platelet transfusions about twice a week because her blood platelet count is constantly less than 15. The minimum normal platelet count is 133.

I live in Minnesota and she lives in Illinois. I am one of the lucky ones. I have a job I can work remotely and some paid FMLA leave to care for her during this time. When I left Minnesota, I was healthy. At the time, my community had low COVID-19 infection rates per capita.

I drove straight though, taking a record 6.5 hours to travel the 430 miles. I stopped only for gasoline and bathrooms in small town Iowa, avoiding truck stops. I used paper towels on the pumps and my sweater sleeve wrapped hand inside the gas stations. Continue reading →

Caregiver Log: Typhoid Mary

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I know people are bored with staying home in the wake of COVID-19. I know people are rightfully concerned about employment, bills, money, the economy. As I walk the grocery aisles, many are clearly too afraid and others not afraid enough. But in the midst of this pandemic, I am also preparing for the end of life care of my mother, who has acute leukemia.

‘Asymptomatic’ is what scares me. Continue reading →

View of living room with wood fireplace and attached sun room

Impending Beginnings

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I bought a condo.

I didn’t expect to until summer but on February 28, 2020, my partner and I sat in Sotheby’s International Realty office and signed a whole stack of papers allowing me to become a homeowner for the first time in my life. He’s old hat. They gave us a gift box with two Tiffany crystal wine glasses, a gold coin to get a bottle out of the champagne vending machine, and most importantly, a set of shining silver keys to the doors of our new home.

It is not lost on me that I moved into my current apartment in the wake of steep tragedy and I will move out of my apartment in the weight of impending tragedy. Continue reading →

Impending Ending

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2020 will be one of the most difficult years of my life.

And whenever you postulate on future events, there is always someone in the crowd with the need to say, “You don’t know that.” I think maybe they like being contrary or are often wrong or are interested in what they might consider to be a safe bet on telling you later, “I told you so!”

But I do know, so shut up, and let me speak.

Continue reading →

Mother’s Day

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I don’t really celebrate Mother’s Day because I am 400 miles away from my mom. Truthfully, I miss most holidays and celebrations. But I send cards. I call with my well wishes.

Mom has terminal blood cancer. It’s tough to write about Mother’s Day when your mother is dying, when it might well be the last. It’s not that she is on her death bed, but she is getting thinner and weaker every day. She is grinding to a halt. Continue reading →

Life as I know it: November 10, 2018

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Life as I know it is this: My mother has a terminal blood cancer diagnosis (MDS). I am an artist with a professional career in IT. I am dog person living alone with two cats. And I burn with deep pain and passions that frequently erupt into the quiet practice of writing.

What is the function of my blog in my life? I consider the direction it has taken. I have many poems, hundreds probably, and have posted them here. I could keep up with that work, but I feel the call to something different.

My friend Todd blogged his personal journey through blood cancer- from his leukemia diagnosis to untimely death. It is a body of work I believe has helped others on that same journey (Popcorn from the Void). In the coming months, I intend to write about my own journey through grief alongside my creative writing. Continue reading →