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  • Writer's pictureKatie Boer

Dementia Diaries: In these final hours

07/25/20 – Got the call I’d been long expecting today (I suppose “today“ is now “yesterday“).

Not that call. The one just prior to that.

“Your mom’s oxygen has dropped significantly. Her heart rate is at 100 trying to compensate,” said the hospice nurse from the other end of the phone. She went on explaining how her vitals were now showing signs of initial shutdown…  I could hear her talking but I don’t remember a word of what she was saying until… “Your mom is now actively dying.”

How—“She hours to days left,” she instinctively said, as if reading my mind. “At this point your mom could pass at any moment.”

“She’s essentially unconscious. Now is your time to just be with her,” she instructed. “ You don’t have to do anything. You’ve done everything now you can do.” She paused before adding that in her hospice experience, she’d never witnessed a daughter do more for her mother.

That was it.  Tears started rolling down my cheeks.

“Why are you crying?” I thought to myself.

“You knew this was coming. You’ve known for a long time this was coming.”

But I couldn’t help it. As a caregiver, this journey cost me everything. My fiancée, my career and most importantly… my mother. The very pillars of who I am have crumbled to pieces over the past (mainly) two years.

“Now what?” I’ve thought to myself over the past few days. “Where do I go from here?”

There’s a growing hole that I need to fill when this “Chapter of our lives”, as my mother would say, closes.

We finished the call and I made plans to head over to her facility at 3pm. It’s now 3am and I’m sitting beside her amazed—frankly, in sort of an angry way--at much the body changes upon death.

Life truly comes full circle, ending almost entirely like you came into the word. Like a backwards progression into the fetal position, not able to eat solids and then liquids. Not able to talk. Sometimes crying and screaming, I’ve been told (though we haven’t experienced that last part).

She looked peaceful when I arrived. Her eyes were closed, eyelids fluttering like she was dreaming. Her body was rigid, yet limp with no strength to move her legs or arms. She has no muscle left. She weighs less than 90 pounds. She’s been running a fever off and on today.  I’ll spare you the more graphic details.

Today was officially day four of not eating or drinking and while four days may not sound terribly dramatic, know this. Her body and her skin is in remarkable shape (a testament to her team of caretakers and bath aid) even though she’s  been slowly wasting away; eating or drinking less than 25% of typically only one meal for the past several weeks.

Since she has not been swallowing, they no longer want to even attempt to push liquids for fear she will choke.

And several times, I’ve felt like she was, as she sort of cough-gasped for air. However without the strength to fully cough it actually sounds like a mix of wheezing and choking.

The worst part is, I can do absolutely…. Nothing.  

I can only lay alongside her in the brown leather recliner I have pushed alongside her bed.

I’ve been told impending mortality can stir up a slew of different behaviors, even emotions from someone “making the transition”, as her hospice nurse calls it.

It’s true.

The sheets alongside the edge of her bed were soaked at one point as I buried my face into the ridge and cried.

“I’m going to be fine. I promise you, I will be fine.” I think I was trying more to convince myself, but couldn’t even utter the words without hot, salty tears rolling onto my lip. “I promise I will take you with me. You’ll be in my heart when I get married. When I have babies…”

She looked unconscious but I knew she could hear me. When I lifted my head, despite her eyes being closed, I could see tears welling up in her eye duct.

“I love you,” I whispered before the hand I was delicately holding twitched twice, very faintly. It’s a sentiment I’ll keep reminding her until Jesus decides he needs her more.

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