I Know You Love Me — Now Let Me Die

I Know You Love Me — Now Let Me Die – By Louis M. Profeta MD

Articles Submitted by Guest Authors, health, Kindness, Life Reflections 32 comments

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would in days gone past watch her children play.

Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went. These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away. She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t.

She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart. You see, that’s how she used to die. We saw our elderly different then.

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother. 

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.”

Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says:

“It’s time to come home.”

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip. 

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up exposing the underlying bone, which now becomes ripe for infection.

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had. We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say;

“How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine. Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life. 

Nearly 50 percent of the elderly US population now die in nursing homes or hospitals.

When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways. We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save.

When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says;

“what in the hell were you thinking?” 

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Author Bio:

I Know You Love Me — Now Let Me Die

Dr. Louis M. Profeta is an emergency physician practicing in Indianapolis. He is the author of the critically acclaimed book, The Patient in Room Nine Says He’s God.

Feedback at louermd@att.net is welcomed. 

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32 comments

  4. A MEN ! why should we be held captive by others fear ?? It is my greatest wish that when there is no more left to enjoy that it could be MY choice as to how and when it ends NOT some afraid politician. !!!!

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  5. Absolutely one of the most powerful pieces of writing on the subject I have read yet. Thank you for saying what you have said. Thank you for your gift of words. Thank you for this incredible pot of soup.

    Liked by 2 people

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  6. My father spent his last about three months in a nursing home. I had managed to keep him at home, with some in-home services, until his dementia advanced too far for that combined with physical frailty. I am fairly sure that by the time he went in his memory was so far gone that once settled in he probably did not know he had ever been anywhere else. He did not ask about his dog, which is a good indicator. I am grateful that he had advance directives and a DNR, and that when the end came and he was unresponsive those were respected. The way to change what D. Profeta describes is for individuals and families to think on what we want and how we want the ends of our and our loved ones’ lives to be, and not to be, and to set our hand to the documents that will make it so.

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    1. My husband went home to be with our Lord At his requst to be at home in his chair .The one I got Him for Our 42 Wedding ann .He said he was tired of living like he was.and he love us .I only hope when I get to go be with him I can to go at home with my children and love one around

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  8. Beautifully written, thank you! Wouldn’t it be lovely to come into this world peacefully to parents who deeply love and appreciate us, to then be given the chance to leave in very much the same way – peacefully, deeply loved and appreciated.

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  9. Thank you for this. My dad and I were privileged to have my mom in Hospice care in her own bedroom. Dad and I cared for her with the help of loving and compassionate nurses, whom she loved. She had metastatic breast cancer, and had lived well and successfully with it for 25 years. When the meds stopped working, her doctor said she could have chemo or ‘let nature take its course.’

    “THAT one; letting nature take its course! That’s what I want,” Mom said emphatically.

    And so she did. She had a wonderful time; many visitors bearing treats and gossip, phone calls and gifts and cards came nearly every day. Her PEO chapter arranged a meal schedule so that Dad didn’t have to worry about meals each week. We had lots of time to laugh and cry together, talk about the past and present and future, kiss and hug and hold hands. I wrote her obit and she approved it. We planned her funeral, her “going away” outfit, hair and makeup. She had a great time giving away her jewelry, clothing, shoes and coats.
    We spoke our love over and over again. She was grateful for the chance to say goodbye to everyone.

    When her system became so saturated with morphine her mind began to wander a bit, we were there to assure that everything was all right. She lit up when friends or Dad or I came into the room, and she said “I love you” to us all. Then there were days when she cried to die; she wanted out of her poor sick body, and wanted to fly with the angels. She said that all her earthly work was done, and why couldn’t she just go?

    That’s when Dad or I would hold her like a child, and tell her that the time to go would come. And when that time did come, she went peacefully and joyfully, knowing that she was finally going home.

    We need more talk in this country about the process of dying and death. It is nothing to fear; it is only another transition. When she was dying, she taught us all how to fully enjoy life. People deserve to die the way they want to, not the way that is easy or expedient. We need to have these talks at any early age and understand that dying is natural. Talking about it and planning takes the fear away. With Hospice care, we had the chance to connect even more fully than before. We saw how the process of dying can be graceful, kind and fearless.

    Thank you for your wonderful post.

    Jane

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  10. My Mom sent me this…I NEED to sit down and ask how she is doing and what has prompted this message sharing. I would rather do this now than be torn with decisions later while my sister and I debate as to who knows Mom best.
    THANK YOU

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  11. My grandmother is in a nursing home, she has no life, she just exists from day to day, she is bedridden and only has a few visitors each week, such as my uncle and his wife and my mum and me that is all she would rather be with my pop in heaven

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  12. Pingback: I Know You Love Me — Now Let Me Die – By Louis M. Profeta MD « puquinquotes

  13. Yeah, in the “old days” people had very little faith in medicine’s ability to stave off death. They could be accepting to the inevitability of death. Now, things are different. Medicine can cure. It can stop the disease process. Families have hope. Death is inevitable but medicine has complicated the issue has it not?

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  14. This article really struck a chord with me. I am a retired critical care nurse of 30 years. When I first started practice in 1976, we did actually have physicians who would take the family into a quiet room, away from the intensive care environment and tell them they had done all they could do. It was time to comfort their family member, say what needed to be said, and let them go in peace. Somewhere along the way that whole mentality became skewed. All I ever heard in those rooms was what we could try next in the hopes of extending an already hopeless situation. The difficult decision, if it was ever offered, to withdraw support was placed solely on distraught family members at a time when guilt kept us pounding on chests, running dialysis machines, and replacing yet another liver after the first and even a second was rejected.

    After thirty years of this my body, soul and mind had had enough and I essentially got up one morning and could not go back. I retired early due to both physical and emotional wear and tear. The final straw was two patients who suffered for six months in isolation suites after double lung transplants. One a 21 year old woman who spent the last six months of her life looking at all of us draped in isolation garb with only our eyes showing. The other a 50 year old man whose wife refused to give up despite rejection and multi-system organ failure. I feel a personal guilt for what we allowed those two individuals to endure.

    When my body starts to fail me, I will choose palliative care and hospice at home. I have made this clear to my family and in a legal document. I prefer quality of life over quantity and I think most, if given the opportunity to speak for themselves would voice the same.

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    1. This a very sweet article, almost romantic in its portrayal of an elderly woman dying at home. My brother and I are looking after our elderly parents in their home. They are both 94. My mother no longer recognizes anyone and is bed bound. My father sleeps most of his day away and when he is awake feels guilty that he has commandeered our lives in order to keep the two of them out of a nursing home. There article assumes that there is loving family close by to bring flowers and soup and take care of the elderly. My brother and I are lucky that my parents have always had good neighbors, but we have both away from our own homes for over a year. As much as I want good things for my parents, I have to recognize that their care has caused havoc in the rest of our lives. We are no longer a part of our family’s lives. We have left jobs and friends behind in order to meet this crisis. We see our spouses and grandchildren on FaceTime, talk to our friends on the email, but we are missing a lot in their lives. We have learned one thing out off this–we will NOT let this happen to our children! We will arrange for our own care well in advance in what we hope will be a kind and loving facility where our family can come to see us, but can continue with their own lives. The fall-out from caring for the elderly day after day is huge. I think the picture the author paints here is lovely and would be nice if we can arrange it, but please don’t let me take over someone else’s life in my old age.

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  15. I work with the elderly, caring for them in their own homes and every one of them, even those still with some mobility, express the wish to die. It is really hard to know how to console these people who are wanting to make a choice about dying with dignity before it is all taken out of their hands.I think the article is perhaps a little over-romanticised but having said that – I believe it must be possible to deal with this issue in a more humane way. Death is part of our Life journey and is inevitable and coming to us all, us, our children, grandchildren etc It is such an important aspect of life to consider…

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  16. Pingback: I Know You Love Me — Now Let Me Die – By Louis M. Profeta MD | babyboomer28

  17. My grandparents and my dad died in their own beds, in their own houses with us as their caregivers. No feeding tubes or machines. Just us . That’s how I hope I will go too.

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  21. I read this post shared by another blogger when you first posted it. It made an impact on my then and still does. My mother died at 95 at home in a bed brought downstairs where she could look out at her much loved garden. Her last days were peaceful and with family coming in and sitting with her, talking to her about her life. She may not have heard, but I hope she felt that kindness. My husband and I have prepared our paperwork to ensure that what you describe does not happen to us and I hope when the time comes, that we will have the choice to make the decision to end our lives humanely and painlessly. Thank you for your honesty and compassion.

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  22. Pingback: Letting Mama Go | Daily Walk With Dog

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