Caregiver Log: Awaiting Censure

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.

Providing end of life care in a time of pandemic has made me nervous: What happens if I get sick and am asymptomatic? Will I get reprimanded for being from out of state?

Since I arrived in Peoria, I have only been to my sister’s house where I stay; my mother’s house to help her; served as shuttle service to and from the Cancer Care Clinic; made two medical supply runs at the drug store; and one low population density trip to the grocery store.

But this weekend, we took a big risk: my nephews and their partners came from out of state to spend some quality time with mom.

My last blog spoke to my fears of being asymptomatic but anyone of us could be, particularly those in their 20’s and 30’s. Three members of my family of origin have health conditions severe enough that this virus could kill them.

Like many families, we are scattered literally from coast to coast. And while it makes sense for our cousins and other extended family to shelter in place and send well wishes from afar, her grandchildren and great-grandchild traveled at personal risk, while there is still time to do so.

Is it better to play cards, drink beer, and laugh together… or hover bed side at the time of death?

And that is only if she can die at home. Thanks to COVID-19, once she goes into a hospital, she will die alone among strangers. Funeral homes are only allowing ten people, immediate family members into visitations, though anyone can come to the gravesite for the burial. That’s outside. And what of the after funeral gathering of loved ones who wish to share memories and support for each other? There will be no restaurants open for the luncheon.

But I am getting ahead of myself. If my mother is anything, she is stubborn and will not go quietly into that goodnight.

Yesterday, my mother’s home had vehicles with licenses plates from Montana, Missouri, Minnesota, and Louisiana. We take the warnings of the virus seriously and we know the virus is hitching rides on travelers, spreading from one location to another. We travel from our homes to the homes of our immediate family and take as many precautions as possible.

It is a terrible choice.

To travel and risk spreading the virus, infecting ourselves and my mother. Or to not travel and miss the opportunity to see her, hug her, and say “I love you” one more time. If any one of us is sick, we all have it now, including my fragile mother.

I await your censure.

I await censure from strangers at the grocery store as I load my goods into my out of state car. I await censure from the police or the ‘Good Old Boys’ as I drive to pick up my mother to take her to the Cancer Care Clinic. I await censure from nervous neighbors, whose distress increases day by day, and look for someone to blame for the ever-spreading disease.

Because ‘Mob Mentality’ is a real thing.

But my mother will be dead soon. Their grandmother will be dead soon. Often, people believe they have no choice but really, we do have them- we just don’t like them. In the midst of this advancing pandemic, in the context of my mother’s advancing Leukemia, we have only no-win choices.

I ask you consider, what you would do if you were standing in our shoes.

God bless you if you are.

-Copyright C.M. Mounts, March 2020

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