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…

The doctor wants a face to face appointment before they prescribe anything- standard and solid practice. But mom can not get up out of the chair. She is too weak to dress and undress by herself and flat out refused to get dressed Monday morning. Thanks to 21st century technology and a flexible MD, we completed a video call Monday afternoon with a prescription for antibiotics.

Mom was so bad by Monday night that I am now sleeping in the room across the hallway. I can be here should anything happen in the middle of the night. My nieces also live with my mother and my sisters come to help as needed. None of us were sure she would still be with us Tuesday morning. But as of Tuesday afternoon, her fever is wavering and if she can keep it away, she will get blood labs and blood transfusion tomorrow.

The infection is only one of many symptoms. For all the others, I am left with over the counter medications and supplies, if you can get them. So far, we have only had trouble finding disposable gloves for the care of my disabled brother because of COVID-19 panic shoppers. I use rubber dishwashing gloves to clean up equipment and I wash my hands a lot.

My mom is not officially in Hospice.

And the reason she is not in capitol ‘H’ Hospice is because once we engage that medical service, treatment stops. The transfusions stop. That is currently the only thing keeping her alive. If she goes into a Hospice Home or a Hospital, we will never see her again. Because of COVID-19, we will not be allowed in.

So, mom is in unofficial hospice.

We care for her at home, hopefully to the end. We will not be given IVs, not even with in-home Hospice with nurses. Everything must be taken orally. Mom is eating less because her mouth hurts and she is losing her appetite. She is experiencing short term memory loss and minor confusion. Her lack of platelet transfusion means she is bleeding in her mouth, on her legs. These are all expected symptoms of late stage leukemia.

As a person who maintains high levels of productivity through a regular schedule, I am now neither productive nor have a consistent life, as you would expect. Showers will be as I can get them. Sleep has been rocky for weeks due to stress or nightmares from the remnants of the crime dramas mom and I enjoy together. Writing and exercise are how I cope and I haven’t done enough of either. But I have managed to blog regularly. Helping mom in and out of bed or up and down the stairs is a workout.

So, we punt. We reduce the fever however we can and kick the can down the road. Eventually, nothing will work. She will slip away. AML is an aggressive disease and there is no cure but transplant. I take comfort in the fact that she has beaten the average life expectancy after diagnosis. She lived longer than they thought she would and about as long as many people who do get the transplant, by the numbers.

This death is expected. This death is in the right order of living- at its far end. Winter must follow spring, summer, fall… for me it is a different grief, a different letting go. This is not like burying my infant niece, my friends in their prime of life, or my 50 year old father. It still hurts but we are born to die.

It’s her time.

There is a birdhouse in the backyard with a red roof. A tiny bird with a big voice is sorting the material from last year’s nest left inside. Some is discarded for reasons of its own. Spring is here and new life is on the way. Mother’s Day will be here soon, both as a celebration marked on the calendar and in real terms among the animals. The unfortunate truth is that mom is not likely to see it. She might not even make it through this weekend…

If your mom is still alive this Mother’s Day, please hug her if you can.

 

-Copyright C.M. Mounts, April 2020

 

4 thoughts on “Caregiver Log: hospice

  1. DawnSeeker / DawnHoof

    So sorry to hear all that you are going through in this tough time! Such a surreal experience, as it was for me in losing my mom (cancer, 1999). It’s walking right up to the gateway, witnessing her departure . . . and somehow walking, slowly, back into your life again. A friend of mine once told me, “It takes four years to get over the death of your mother.” About four years after losing Mom, I thought about what Vera had said. How did she know, I wondered? Because for me, this was correct.

    I’m not sure if this might be helpful, but here is a link to my “death and dying” post series. Ironically, I wrote it ten years after losing my good friend, Sherrie, who died in a horse accident. Irony again, today is the 13th anniversary of her passing. Best to you, and your mom, in the difficult days ahead. Dawn

    https://journalofdawn.wordpress.com/2017/05/15/lessons-for-living-from-dying-on-life-and-death-part-i/

    Liked by 1 person

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    1. C.M.Mounts Post author

      Thanks Sandy. It’s been very stressful and I am trying to remain focused on today and the next right thing. Hope you and George are well. -Christine

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