How Fast Do I Let Her Die?

Summary

Dawn Aegle reflects on the emotional challenges and complexities of caregiving for her mother with dementia, grappling with anticipatory grief and the struggle to balance her mother's autonomy with her declining health.

Abstract

The article delves into the personal journey of Dawn Aegle as she navigates the multifaceted role of caring for her mother with dementia. Aegle describes the cyclical nature of her mother's health, likening it to reverse growth spurts, and the emotional toll of anticipatory grief. She confronts the paradox of wanting to preserve her mother's life while also accepting the inevitability of loss. Aegle questions her own choices and the "if only" scenarios, while also recognizing the importance of allowing her mother some level of decision-making. The discovery of reading to her mother at bedtime emerges as a unexpected source of connection and comfort amidst the daily struggles of caregiving, providing a poignant bonding experience and perhaps cognitive benefits.

Opinions

Aegle experiences a mix of hope and despair as her mother's health fluctuates, reflecting the unpredictable nature of caring for someone with dementia.
She feels conflicted about the neighbor's suggestion to not try so hard to keep her mother alive, indicating a deep-seated commitment to her mother's well-being.
Aegle struggles with the balance between encouraging her mother to make healthy choices and respecting her autonomy, particularly when her mother's choices may hasten her decline.
The author expresses doubt about her ability to understand her mother's experience due to the differences in cognitive processing.
She questions her mother's capacity for decision-making, weighing the need to intervene against the desire to honor her mother's preferences.
Aegle finds solace in reading to her mother, which has become a cherished ritual that enriches their relationship and provides a sense of meaning in her caregiving role.
She expresses gratitude for the connection that books and stories have fostered between her and her mother, and she sees this as a way to reach out to others in similar caregiving situations.

and…Gratitude for ‘Stories’

Photo by Dawn Aegle

The letting go is hard. It comes in stages, just like children have growth spurts, then plateau, then ‘break up’ and then spurt again. And I’ve noticed Mom declines in the same way, but in reverse. She plateaus, then there’s a rough spot and then another slide down before plateauing again.

I feel hopeful during the plateaus. Maybe her body is curing the antibiotic-resistant UTI. Maybe the walnuts are helping her dementia. Then the rapid slide comes and hope falters. I struggle to accept a new stage of lost competencies. I feel sad and frustrated and guilty and irritable, sometimes even angry, all at the same time. Tears come when I am alone and still.

Anticipatory grief Hospice calls it. Different from post-death grief, but it can be just as hard, sometimes even more painful.

A neighbor says, why are you trying so hard? You will get your life back when she goes. But something in me won’t let go of a drive to do all I can to keep her alive.

It’s not just letting go of my mom to die. It’s letting go of all the little things that I could be doing, that she could be doing, that would enable her to live and to feel better while living.

So I get the ‘if onlies.’ If only she would drink water. If only she would walk a little. If only she would do her physical therapy exercises. If only she would eat vegetables and not so much sugar and bread. When I stop forcing and let her choose, she always chooses what is worst for her. Letting go is hard.

I want what is best for her. I want her to be happy. I want her to enjoy life, get out and see the flowers. Walk so she doesn’t lose the ability to walk. I think I know what is best for her…but maybe I don’t. These are her last years. Months? Weeks? I need to let her decide how she will spend them.

Ah, then come the doubts. Is she still capable of deciding? Can she process consequences of actions? What do I need to decide for her? (Yes, you need to change your diaper now.) What can I let go and let her decide? (OK, you don’t need to go outside and get sunshine.) Water is a hard one for me. I leave it everywhere, but I have stopped offering consequences if she doesn’t…am I killing her by not insisting?

I try to think about myself. What would I want? Some of both, I guess. But mostly, I realize that I can’t understand anymore what it feels like to be her. Her mind doesn’t process now in the same way that healthy adult brains do. I don’t know how to go into her experience.

Asking her doesn’t help. She is “fine” and “doing great” no matter what is happening. She speaks much less than she used to and when she does, her responses are usually very habitual. I’ve heard ”I’m fine; don’t worry about me” enough times to tire of asking.

I cope by remembering better days…like the trip we took to Ecuador last year. I will write about that next week, or maybe the one after — my time is unpredictable now.

But I have discovered something — quite by accident — that she loves. I started reading to her at bedtime. We’re almost finished with our second book and I’m surprised how well she can track the story. She told me that no one ever read to her. I asked, “not even when you were a child?”

“No,” she replied, “I learned to read early and people thought I could do it by myself.”

So now, it has become the most special time of our day together. A time to set aside all the frustration and impatience I may have felt — and inflicted on her — during the day. A way for her to feel valued and cared for. A bonding that doesn’t seem able to happen through conversation anymore. And maybe it helps her brain, too.

So today I am thankful again — in a whole new way — for books and stories, which have become a ‘Medium’ that connects my mom and me…and maybe connects me to you, too, if you have a caregiver role in your present or your future.

I am Dawn Aegle, a content writer and transformation coach who sometimes struggles to find meaning in my current role as a 24x7 caregiver for a mother with dementia. Meet me on Medium here.

CAREGIVING: LOVE IS A VERB

How Fast Do I Let Her Die?

and…Gratitude for ‘Stories’