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.
We get mom in the car and drive to the clinic. When we arrive, I don my mask and grab a wheelchair from the lobby. Maureen takes her in through the formerly exit only side door, to the COVID-19 wellness station, then to the place where they draw mom’s blood to see what she needs. Mom is slumped over in the wheelchair and people pat Maureen on the back as they make their way, passing other upright and still independent cancer patients. The lab tech is nervous but draws her blood.
We wait in the car for results like always and an hour passes. This never happened before. I walk in to ensure we were not forgotten and finally they come back: platelets, 12:30pm. That is in two hours. So we go back to the house, put mom in her recliner with the blanket, turn on the oldies station and wait.
When it is time to leave again, mom has greater difficulty getting into the car. She’s losing what steam she had. The driveway up to the transfusion center is still under construction. I park in the ‘valet only’ space since it is suspended, leave mom in the car, and walk the 160ft to retrieve a wheelchair, then the 160ft back to the car to get mom, then the 160ft back through the construction barrels and caution tape into the transfusion center. 160ft is about 49 meters, 53 yards, or the width of a football field depending on your method of measure. At least it wasn’t raining this time.
We make it through the COVID-19 check-in, the billing office check-in, and the transfusion center check-in. I ask for a room with a bed but the receptionist cares too little to let the nurses know. They put us in a room with two chairs, until they decide mom needs a bed. She lays in the dark because of a new severe light sensitivity. I squint at my Sudoku.
After 1.5 hours she is done but already starts to crash. The nurses look like deer in headlights, not sure what to do because mom is partially responsive but clearly not well. They bring a machine and put a belt around her to lift her out of the bed and into the wheelchair. I am pulled to the side and asked about hospice. So far, mom has strongly resisted it because it means an end to transfusions. The nurses are scared and unsure if they need to call an ambulance.
But they let me take her home.
They wheel my mom and the lift machine the 160ft out to the parking lot and place my mom into the car. They are worried whether or not I will be able to get her out once we are home. But I assure them we have many hands. I text for help before I leave.
Mom can not walk. Her strength is gone, her legs can not hold her. Three of us help carry her from the car to the recliner as she cries in fear. Once in her recliner, I notice her pressure bandage is dislodged and blood has soaked through the sleeve of her shirt and coat. Up the stairs for gauze, bandages, and blood stopping spray; down the stairs to put pressure on the wound. She passes out a short time later and shakes involuntarily. She crashes. All five of us believe it is the end of her life.
But it isn’t.
She perks up a few hours later, enough to fight about hospice again. Three times on Monday, she says, “This has to be to last time. I just can’t do it anymore.” But by Tuesday, her short-term memory erases the worst of Monday. She knows it was hard, just not how harrowing. She tells me she wants to try to get a transfusion on Wednesday.
There is no transfusion in the world that can stop the march of leukemia but it can prevent you from having in-home healthcare. End stage leukemia transfusions are palliative care. They are used to alleviate symptoms. But it is the only hope offered for extending life, even by a day. Yet, if she receives transfusions, she can not access the benefits of hospice care. You can only choose one or the other.
Wednesday morning May 6th comes. I wait for her to ask for help to get ready for the appointment. And as the time of the appointment passes, she asks, “Did I make the right decision not to go?” I said yes. Not taking on the grueling task of getting my mother to the transfusion center was the most difficult decision of my life.
But we are now in a place where if I take my mother into the clinic in the condition she is in, they may refuse care and call an ambulance. She will be admitted into a hospital and/or nursing home and die there alone instead of at home as she wishes.
Part of her living will states ‘no heroic measures’. That usually means no respirator or do not resuscitate. But what does it mean for a palliative care procedure that now threatens her life? The reason you put together a living will with a clear head is so that in heat of a medical emergency, your family can have clear direction on what your wishes truly are. And her wishes are to die at home with her family in peace.
Friday morning May 8th, we once again ask, “Do you want to go, because we will take you.” Friends devised all kinds of ways to get her into the car including having six people at the ready to come over and carry her out. But they don’t understand the situation. Though well intentioned, they do not have all of the information. We can get her down the stairs and in the car. What we can’t do is help her survive the procedure. And if she crashes again or has a stroke because the surge in blood volume dislodges a clot into her brain, she will go into the hospital and we will never see her alive again.
She tests her ability to go to the clinic by standing, and can’t without us holding her up. We manage to shower her and carry her back to the bed. She lays on the bed, stares out the window for a long time, says nothing. Then she tells me to call hospice.
Now we wait for hell…
-Copyright C.M. Mounts, May 2020