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.

So, now what? What are the ‘Three Most Important’ tasks I have to get done with this one day? Not conquer the world… simple progress, forward motion. ODAT is best practice but it is absolutely non-negotiable for this time of my life.

My mom has advancing acute leukemia and her days are short. How short? Well, there are these cells in your body known as ‘blast cells’ which are immature cells. All of the cells in our body come from blast cells. We even start life as a blastocyst. Blood blast cells come from bone marrow. Blood cells wear out and are replaced regularly by these blast cells once they mature. Unless they don’t. And if blast blood cells don’t mature into needed mature blood cells, that my friends means you have blood cancer.

5% of bone marrow is normally blast cells. 20% blast cells is the minimum for an acute leukemia diagnosis. Mom has 87% blast cells.

I see mom six days a week, helping her in the mornings on weekdays and coming again in the evenings for dinner or social time and helping her to bed. I try to work in the afternoons but that doesn’t always pan out.

I stay about 15 minutes from mom. I arrive in the morning about 8:30 and I call three times on my way to ensure she is up and ready for her appointments. She has only answered once. When I arrive at the house, I will find the door locked. I have a key and let myself in. I may find her slumped over in the chair and am relieved when she startles awake. Or the house is silent. And I must go upstairs to her closed bedroom door, to who knows what on the other side. So far, It’s been her in the shower or doing her hair. Her phone isn’t near or she can’t hear it.

But it’s a heart stopper. Nobody wants to be the one to find her.

Every day is different, so we live ODAT. On blood test days at the cancer care clinic (M/W/F), the results may come back that she needs a transfusion. If so, it’s off to the blood transfusion center. I can’t accompany her into the buildings because of God damn COVID-19. She’s only requested a wheelchair once, but it’s hard for her to walk and she takes her cane.

Other days it’s all about grocery shopping or filling out paperwork or talking to her about her final wishes. How is her skin today? Does she have any unexplained bruises or bleeding? Can she get up the stairs? Is she too exhausted or confused to handle the business at hand? What can we accomplish today?

Some days it’s a lot. Those are usually the platelet days, when she’s convinced she got some juice from a young generous donor. These are the days she doesn’t sleep spontaneously. These are the days she gets excited about doing chores around the house or watching our new favorite cop show.

Other days, she seems sort of OK but isn’t. It comes out as confusion, an inability to articulate what she wants, or remember what she’s trying to do. She has mentioned her fears of having mini-strokes and not knowing it. Brain bleeds are common with low platelets.

One Day at a Time.

I go to the store when needed. I change the sheets or the bandages when needed. I drive her to the doctor or the bank. As her executor and power of attorney, I ensure her estate is in as much order as possible. We order food for take out since we can’t dine-in which is our custom. I’ve put a lot of miles on my car. She commented her surprise at how easy it was to give up driving. It helps to have a chauffeur.

I do it gladly. I am grateful that I have the opportunity to help in these final days. I do not know, never know, which one will be the last. It doesn’t matter.

I have lived each unique one on its terms, in the here and now.

 

-Copyright C.M. Mounts, April 2020

 

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