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Why It's Difficult to Answer This 'Simple' Question About My Dying Mother

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How is your mom doing?

Most who know me know my mom is sick. Most know she has a rare brain disease. So why do I cringe so much at this question?

How should I answer?

Do I say…

Mom fell today, but it is OK because she can still walk with a walker. Mom cannot climb the stairs anymore, so we had to get a chairlift. Mom had another part of her brain affected and now she cannot walk. We got a hospital bed for downstairs; now the chairlift is not needed. Hospice has increased their visits. Mom now must have thickened liquids, and soft foods. Mom also must have her medications crushed.

Do I tell them about my interactions?

Do I say…

Mom listened to my stories today that I have told her repeatedly, like it was her first time hearing it. Mom listened as I talked about my own children, her grandchildren, but I could see she in her eyes she did not remember who they were. Mom smiled, but it was not the same old smile I used to know.

Mom cringed as I brushed her hair because she does not like being touched. She pulled away as I reached over to hold her hand because unexpected movements frighten her. Mom’s myoclonus is greater now. She looks like she is conducting an orchestra — but her hallucinations are a little better, and they do not frighten her as much.

Mom is dying. Every day is something new.

I am a nurse and I know the smells of sickness and death. I can see and smell it when I visit her. I can see the new slouch and the trouble holding her head and torso straight. I can see the drooling from her mouth that was not there yesterday. The silence of her not talking tells me her brain has died some more. It’s harder to transfer her from bed to wheelchair because she just cannot balance. I know bedbound status will come soon. Sleep is a popular pastime. Eating is less and drinking is a chore.

She hates to see me cry, so to stop the tears I go into what I call “nurse mode.”

Are you propped up and comfortable? Are you in any pain? Have you been turned? Are you clean? No sores on your skin?

Here, let me wash your hair, put lotion on, feed you your snack. Let me help you, mom, let me help you… because by helping you, it keeps me busy and pushes my emotions away. And then I will not cry — not yet, not until my drive home.

How is my mom? Mom is dying and dying fast.

As a nurse, I help many patients with their illnesses. I help sickness disappear and help people get well. I just cannot do that for my own mom. Mom’s disease is terminal. She has a rare condition, Creutzfeldt-Jakob disease.

I have seen many diseases and lots of death in my job, but have never experienced something like this. Creutzfeldt-Jakob disease affects literally one in 1,000,000 individuals. I always knew my mom was special, and I always called her “one in a million.” I did not need this disease to prove it.

So how do I answer, “How is your mom doing?”

I always just say, “Mom is doing fine.”

With that answer I know I am still telling the truth. Mom is fine. She is still eating a little. She is still smiling, still letting me hold her hand, still able to talk and still listens to my stories.

Mom has no pain. Mom is fine. She is still breathing; she is still with me today.

And for that I am entirely thankful.

Even knowing the quick, horrid course this disease takes. I am thankful for every day I have with with mom.

Mom is fine.

Originally published: May 26, 2020
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