When I am Dying
When I am Dying
when I am dying
Disclaimer: If you have recently lost a loved one or are currently grieving, read with incredible self-care. This piece discusses death and dying, especially when the dying person is unable to make their own decisions. Reasons for dying are many and often complex, and this list is not exhaustive. I also realize that “young” and “old” are relative terms. In this context, they do not necessarily refer to a numerical distinction, but rather a state of overall health.

Many family members make decisions for their dying loved ones based on their own morals, experiences, or what they think is right. This piece is not intended to shame family members for decision-making, rather it is intended to encourage folks to make their end-of-life wishes known. There is great nuance in dying, and no one decision is right. No one experience in death and dying is the same.

These are my wishes, from the perspective of a Registered Nurse. My frequent experiences with patient death and dying have prompted me to write my own wishes and fill out my own legal documents for end-of-life wishes.

I am forever honored to be a caregiver for those people in the process of dying, and subsequent death.

When I am Dying: If I am young

If I am young and cannot make my own decisions: If I require intensive care from trauma and have massive injuries, I want you to try and save me. See, I want to live if I can. If I am young, I can fight.

But, if I am declared brain dead or in a persistent vegetative state, please let me go. Please donate my organs. Please consider multiple perspectives from physicians and nurses.

This is easier said than done. But I do not want to live with a tube in my neck and a tube in my gut in a nursing home with no thoughts of my own. The word is “live” and that is not living. That is an empty vessel with no direction or purpose or words or mind. I do not wish to live my days as muscle and bone in a nursing home bed with no awareness and a blank stare.

If I am young and cannot make my own decisions: If I am certainly dying and there is no way for science to repair me, please let me go. I want fresh air. I want to be surrounded by people who love me. I want irritating beeping noises to be turned off. I want you to play Tracy Chapman and tell me stories of wild adventures. Read me a children’s book. If possible, transfer me home or to hospice. Keep me warm. But open those windows. Bring a cat.

When I am Dying: If I am old

If I am old and cannot make my own decisions: If I have suffered a massive stroke or heart attack or broken a hip and writhing in pain or have dementia, please do not save me.

This is easier said than done. I do not want surgery or aggressive rehabilitation. I do not want a pacemaker to regulate my heartbeat. If I am choking and my food is going down into my lungs, I do not want a nasogastric tube down my nose or a permanent feeding tube. Like my favorite speech therapist, Bridgette says, “I would rather die with pizza in my lungs.” I do not want a colonoscopy or a million other diagnostic procedures that will only determine more problems of an aging body, more solutions, and cost more money.

If I am old and cannot make my own decisions: To what end? To what end will you piece apart my body and offer options which rarely include comfort care or going home? To what end will you weigh me, take my blood pressure, cart me off for endless tests, regulate my pain medications regardless of my pain, and restrain my arms and legs?

I know this is not my caregiver’s fault. I know that my nurses and nurse’s aides are mostly good people. Most of them are advocating for me. I know this isn’t my doctor’s fault; they were taught all the steps, the tests, and the sometimes-aggressive management of my disease or condition. When I am dying, my caregivers are worried about doing their job, navigating between giving me the care I want and the standard of care they are legally required to give.

There is a natural desire to save loved ones or patients, even if comfort care may provide the best quality of life.

If I am old and cannot make my own decisions: If I am certainly dying, let me go. See my wishes when I was young and follow those. Bring a cat.

What do you want when you are dying? No age is too young to make your wishes known. Here is a valuable resource in starting the process.

 

136Sarah Helen is a writer, a wild adventurer, a hiker, a Registered Nurse, a reader, and an ice cream eater. Check out her blog at  for book reviews, stories, photos, and sunshine.

 

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