“I’m going to live in spite of everything I’ve been through. I’m a nasty old woman.”
I recently spent ten days watching my grandmother die. It was a stroke that pushed her to the physical limit, leaving her unable to walk and swallow. What made the situation so distressful for my family and I was that she still retained her cognition and a sufficient ability to interact with her surroundings; however, her mental acuity was not clear enough to remember that she couldn’t eat or walk, and she wasn’t able to make an informed, lucid decision on her deteriorating state. Sometimes she would fervently exclaim that she wanted to die or that she was dying or that she felt like complete mierda [i], but at other times she would witness us crying or understand her impending mortality and tearfully demand that she wanted to live, or that she would live despite the circumstances.
Due to this, neither her, her medical staff, or her family were able to form a cohesive decision as to what should be done to and for her. My grandfather and I spent a turbulent three days meeting with the medical team and hospice representatives, mentally compiling the positives and negatives of keeping her alive or letting her die. On Thursday, my grandfather made the final decision, choosing to replace the feeding tube in her nose for one that fed directly into her stomach and then transfer her to what would predominately be a nursing facility, as she could not meet the qualifications for a comprehensive rehabilitation facility. Essentially, this would be going against what she had requested in a living directive she had made around eight years ago, which stated that she didn’t want to be placed in a nursing home or be kept alive via machinery, including a feeding tube.
Although I kept this realization to myself, I did not believe that placing a feeding tube in her stomach was the wisest decision to make. She spent the majority of her days sleeping or in remarkable discomfort, and- in witnessing her frail state- I logically intuited that the chance of her walking again, eating again, or living until the end of the year was minimal. As the medical team explained, even with a feeding tube, she would likely aspirate as well as contract pneumonia due to her inability to swallow her saliva, her heart was functioning at only thirty percent, her kidneys were failing, she suffered from diabetes and high blood pressure, and at the moment she could only take about ten minutes of rehab before complete exhaustion. Basically, her body was preparing to stop functioning, and she would likely spend the rest of her life in a nursing facility if she did survive the operation and the next few months.
However, they also told me that she would never move her left side again, but I would continue to test her and see improvements in this. Furthermore, I understood from observation and experience that you cannot accurately predict the circumstances you can persevere and thus was open to the idea that she would now want to disregard her previous medical directive. So I supported my family’s decision and continued to hope for her recovery while also encouraging my grandfather- despite the gravity of this realization- to plan for nearby accommodation other than their rural home to live out her dying days, as my ultimate goal was to allow her to pass within his loving presence.
On Thursday we authorized the operation. On Friday she had it. On Saturday night she managed to finagle her hand into the contraption blocking her stomach and pull out the tube.
She survived until a few minutes past noon on Monday.
The last lucid moments of I saw of her was of her imploring to die. And, as I predicted, she died without the possibility of returning to her home and spooning naked in bed with my grandfather (wishes she had continuously asked for before she lost her cognition early Sunday morning). Thankfully, the hospital (who became enamored by her feisty, ardent spirit and the love that surrounded her) was sympathetic to our case, moved her to a personal room Sunday evening, placed a hospital bed next to hers, and let my grandfather spend the night with her despite the fact that she was incognizant. He held her hand, sang her the song he composed for their wedding in 2001, and made sure she was cared for and loved during her last hours of life. In my hopes, she passed in a morphine induced dream in their home in Puerto Rico [ii], on the land she was born, being sung to by her remarkable lover who made the last twenty-eight years of her life something the majority of us only experience from empirical observation or via novels and movies.
Writing about this experience hasn’t felt natural to me, as I struggle with publicly disclosing facts about my personal life. I first wrote an essay that touched upon my grandmother’s death titled The Wrong State of Happiness, an essay that I might publish later on. However, such a dispassionate discussion on what constitutes a meaningful life felt cold and distant to me after such an encounter, and I quickly realized that the only way to impart to others some of the wisdom I received this past week was to describe a few particulars of her passing and touch upon the struggle my family and I had in letting her go.
My grandmothers pain and discomfort might have been prolonged. And she might have spent her last ten days in distress in a hospital bed passionately expressing her wishes to be at home. But she had the love and support of her family and her devoted husband whom she kept her humor and rapport with until the end. And although she never had the opportunity to return home, she died at my grandfather’s side in a drugged, dream-like state that, hopefully, placed her in familiar surroundings.
I am grateful for this experience. For reminding me that supportive, selfless love is possible. For reminding me of the grace and kindness that is received when we know when to let go. For reminding me of the limitations and possibilities of medical intervention. For reminding me of the importance of hope and risk, and the reality that- if the energy you put forth is positive- the outcome of your decision, even if it isn’t what was originally hoped for, is often positive as well.
But, most notably, this experience reminded me of what is meaningful in life.
I will state this in writing, as I believe it is an important reminder to have. These are the aspects of my grandmother’s life that weren’t present at her hospital bed: her work, her resume, her artwork via gardening and wreath making, her car, her house, and her material possessions.
What was present at the end was her family and lover.
In the society I- and likely you, reader- live in, more effort is put into achieving material wealth and superficial relations, aspects of life that weren’t there for my grandmother during her prolonged death. I hope that this essay can serve as a reminder that it is the effort we put into cultivating and maintaining deep, vulnerable relationships that will, for the majority of us, pay off most in our aging, ailing, and dying moments.
[i] Shit, in Spanish.
[ii] A home she herself helped to build a decade prior.
November 4, 1933 – July 16, 2018
(Te Amamos Más)
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Sorry for your loss.I sometimes wonder in my work,why can’t we let go?Then I realized I was doing the same with my pet! How could I critize my patients families when I was just as selfesh.I made the decision to let my dog go…..because it was Time.I hope when faced with this issue for loved humans I will be objective…family is everything♡
Yes! It is insightful to see how hard you hang on when it is a person, pet, or object you have memories with. Letting go of the emotional aspect is what makes the decision difficult.
Your grandmother sounds like a remarkable woman, and I absolutely love the picture of her when she was young. The letting go at the end of a life is hard, but your family handled it with grace and love.
Thank you Patty. It is difficult to let go, but powerful lessons are learned when you do.
very very powerful! well written, too. i was with my father when he died and felt emptied out afterwards. a deep void in my gut. and i wasn’t myself for days. at one point i let out a howl that sounded like it was coming from an animal, deep, deep sorrow. death is strong. now, i’m preparing for my mother’s passing but she is dying slower while my father keeled over. thank you for writing about this intense and difficult subject.
Thank you for sharing an intimate story about your reaction to your fathers death. It is hard and difficult, and- fortunately- most of us don’t have much practice in dealing with the passing of a loved one. I wish you strength in preparing for your mothers passing!
thank you sonia rosa