“This is How We Die”: A Morning with a Hospice Nurse

On Tuesday morning all I knew was that I was setting up an O’Connor table at the Heartland Hospice event that we were co-hosting. I got the table cloth & brochures all set out, greeted the attendees, and sat down in the back intending to “work” on my computer when the speaker, Barbara Karnes, a hospice nurse of 32 years, began speaking.

She said, “I don’t want to pretend that this is all Truth with a Capitol T.

This is MY experience.

Dying is the hardest thing we live through.”

(and you do live through it, that is, until you die)

 

That got my attention. I had the privilege of sitting for the next two hours hearing the stories and wisdom of this nurse. I typed out as much as I could of what she said, filling up 4 pages of notes and still not capturing all the information. –

Here are some of the incredible insights she gave me about death that Tuesday morning:

“We don’t die like the movies” – She mentioned scenes in movies where the dying person looks beautiful and radiant, perhaps they’re imparting some incredible words of wisdom that wrap up the whole story perfectly and then, they die . . . “This is not how people die,” she said. When people are dying of disease or  cancer, the kind of people she gets to work with on hospice. “They don’t have the energy to speak, and if they are speaking, you probably can’t hear or understand what they are saying.”

“If they are a controlling person, they will control how and when they die” She said that protective spouses or parents want to spare their loved ones from being there when they die. They will wait until they are alone to let go. She also said that if they want you there when they are going to die, then that is what will happen.

“No one dies alone” – Barbara said that all her years of experience have convinced her that we are ushered into the “other world” by the loved ones that have gone before them. She recounted the story of a 23 year old girl she was caring for whose brother died 3 weeks before she eventually would. The family chose not to tell her about his passing but shortly afterward all she could talk about was “Jim, Jim, Jim,” her brother. Her boyfriend thought she was confused, but then she looked at him and said, “No, I know who you are, Jim is here and says he’s going to take care of me.” Barbara recounted other stories like this, I’m pretty sure there wasn’t a dry eye in that room.

“Dying is always, always sad, it will never be ok. but it doesn’t have to be BAD.” – this is how you take something scary and negative and make it into a more normal and natural process that helps neutralize the fear.

Barbara inspired me and gave me truth and honesty about an element of life most of us know very little about. She changed how I see dying. She spoke about it with so much familiarity, knowledge, comfort and gentleness that it took out so much of the frightening mystery that dying is cloaked in. It will never be ok, but it doesn’t have to be bad or frightening.

To hear Barbara’s own words about dying, click here Gone From My Sight. To obtain a copy of her book,“Gone From My Sight” please contact Becky Lomaka.

 

What do you think of Barbara’s premises?’

In your experience, have you seen any of these played out?

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Illustration Credit: Anna and Elena Balbusso

 

Molly Keating

About Molly Keating

Hi, I'm Molly and I write for the blog here at O'Connor. I grew up in a mortuary with a mortician for a father who's deep respect for the profession inspired me to give working at a mortuary a try. Work at O'Connor has brought together two of my deep passions, writing & grief awareness. In 2016 I earned Certification in the field of Thanatology, the study of Death, Dying and Bereavement. I am honored to be able to speak on these taboo topics with knowledge, compassion, and a unique perspective. I want to sincerely thank you for following & reading the blog, I hope that this is a healing place for you.
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  • Shasta Thompson

    This is great Molly! I’d love to hear more from this hospice nurse, I was with my grandma while she was dying, and though she couldn’t talk it was evident she was seeing something we weren’t.

    • Wow Shasta. There were so many things that she talked about that I could relate to as well as I thought about watching my grandpa die from cancer. You should totally watch the video she does, it’s an absolutely amazing talk. I’ll also try to remember to let you know about this if she comes back next year!

      Thanks for reading & sharing!

  • Kasey

    Molly, as always your posts are enlightening..
    My mother did not want me to see her die.. For years I carried around the guilt that I should have been with her, until the day my aunt (her sister) said, “Your mother didn’t want you to see her die”.. At that moment I realized that was my mothers “choice”. I let go of that guilt and had even more respect for my sweet, crazy making mom..

    Still taking care of me in death.

    I have a copy of Gone from My Sight… excellent

    • “Still taking care of me in death” – what a beautiful truth. Your mom was absolutely caring for you, thinking of you, and not wanting to cause you any more pain. It’s amazing to hear more stories that just continue to back up what Barbara shared.

      Thank you so much for sharing Kasey, I’m so glad that that guilt isn’t a part of your life any more. What a healing thing for your aunt to say – healing you with wisdom & truth.

      Love your response!

  • Anne

    Dying IS the hardest thing I will ever have to LIVE THROUGH. Especially since it was Lou. It feels like part of me was cut off and I am bleeding out and can do nothing about it. It was not pretty and it was not uplifting. I hope I will eventually be able to write about it. The nurses and the bath aide were loving and caring though. They truly loved our family and it showed.

    • Anne, you’ve seen it first-hand and so intensely. I’ve heard my dad and others compare a loved one’s death to an amputation – you’ve lost a vital, functioning part and your life will never be the same again. You can still operate, but it’s all about adapting to your loss.

      I hope that you are able to experience some healing someday by sharing your story on a larger platform – I think this is part of the beauty that God will bring out of this tragedy.

      Lou has made it through the hardest thing he will ever have to do – I don’t even know if there’s comfort for you in that – understanding these things can help our fear – but you’re beyond that and nothing can take away the sorrow.

      I love you, Anne. You are still in my prayers.

  • Wendy Schroeter

    All these observations ring so true for me. I lost my Dad 12 years ago to pancreatic cancer and it was the hardest thing I’ve lived through. As debilitating as it was… knowing he was not alone and was ‘ushered out’ by loved ones (which absolutely happened) gave me a definite sense of comfort and peace… without which I don’t know that I could have survived it. What an amazing thing this nurse is doing to help teach and illuminate the realities of death and dying. Would love to see her speak some time. Thanks for posting!

    • Wendy – it is just amazing to hear you and so many others validate Barbara’s observations with your own experience. Thank you so very much for sharing your own story – I hope that this blog brought you some peace as you look back on the experience of your father dying and validation that what you saw & believed was real!

      Thank you for reading & sharing with us!

  • GREG FORSTER

    Molly,

    Very compelling reading. I wish that I could have attended this same event and experienced the same serendipity that you experienced. How lucky you are that your ears pricked up and you realized that yes, indeed, this was an important life learning lesson moment. Not from one stating their lofty views as to how they think things may be, but from one who has lived their life in the trenches of giving comfort and mercy to others for years.

    Good for you to have had this opportunity!

    Greg

    • Thank you so much Greg! This was definitely an altering experience for me – I’m so glad I got to go and by chance experience such wisdom and profundity. From what I understand she does this yearly so it will be something I’d love to extend to the staff so that you and others can attend. This is LIFE information, not just hospice information. Thanks for reading & responding!

      • GREG FORSTER

        I will very much look forward to receiving this future invitation!

        Thank you, Greg

  • Hi Molly –

    Thank you again for another open and honest blog. I believe that if we are willing to have an open heart & mind about death & dying we can understand what has been such a mystery to all of us. I realize that death is probably the most uncomfortable subject for most our our society, yet there can be peace and beauty if we are willing to learn more about it and embrace it. We can try and deny it, yet that will never help us move forward. My goal is to help educate our community about death and how we can grieve in a healthy manner with rituals & ceremonies. You have been a huge part of helping educate our community, I am deeply grateful to you for all your hard work and passion you have given our community, you are a true blessing to us.

    • Thank you so much Neil! We’re both lucky that this is something I’m so passionate about & that you are so willing to let me explore it!

  • Tammie

    There is much truth in what was shared from my experience with my mom and dad’s passing. I actually spent quite a bit of time with the hospice nurses and asked lot’s of questions. One of the things I found most interesting and comforting was when they prayed with the family for healing for my mom. I thought it odd that since she was in hospice to pray for that. When I asked she said “Oh she will be healed, whether or not it’s on this side of heaven or not”. Very powerful for me.

    Also, as my mom was passing a new hospice person on duty came in and right away said they could tell that my mom must be a believer. When I asked how the gentleman said it was the way she had a peace about her. That in his experience he could usually pick out those with faith. Somehow that also helped me as I sat with her as she exited this life into her new one.

    • Tammie – what an amazing testimony to the peace God can give to people in any situation, even dying. Your parents must have also had so much peace knowing you were there. Your presence with them is an amazing gift that you were able to give.

      Thank you so very much for sharing your stories of your parents journeys through dying. It takes courage to recall it and write it all down.

      I appreciate you reading & responding with your wisdom & experience.

  • mark stewart

    I remember when my mother passed, I wasn’t shocked that she passed. My mother was 86 and had lived a full life. But I remember clearly thinking to myself, this is not what I thought dying was like. I though, this is not at all like in the movies.
    My mother died for 3 weeks. Every part of it after the first week was brutal…for her. She used to tell me, “Growing old ain’t for sissies.” By the time she passed I think she would have added, had she been talking, “Growing old prepares you for tthe final battle, which is the toughest battle of your life.”I wish for her that passing had been like the movies…but the only movie that came to my mind was Braveheart.
    I guess in a way it was, but it was her a Braveheart

    • Wow Mark. What an amazing way to describe and memorialize the strength & life of your mother. I think you’re absolutely right in comparing it to Braveheart and the battles & torture that this life brings to us & forces us to endure.
      I wish it had been like the movies for your mother, too. I hope it brings you some comfort to know that her dying this way was not abnormal, there’s often comfort in knowing we’re not alone in these experiences.

      Thank you so much for sharing your story.

  • rita malone

    my first real experience with dealing with death was when my son was murdered and i was such a mess that i didn’t realy comprehend what happened but the one thing i do remember is sitting at my neices sidewalk and watching an ant family carring a leaf ten times its size and for some reason peace of no understanding came over me..i never did see my son before or after he died so my mind says he is on a journey somewhere and that someday we will be together again..

    my second experience was bitter sweet i sit with my x-husband whom i loved dearly just couldn’t be married to him . and i held him and prayed with him and then for some reason i sang frank sinatras song (i did it my way) out loud to him and even though he was really gone i saw a smile come on his face and then he passed it was the most beautiful thing i ever experienced.love has no boundries and even though people may devorce and move on love of some kind still is there.i know he went peacefully and i am thankful for that

    • Oh Rita, what loss you have experienced. There is no beauty in murder or the loss of a child and I am so sorry that you had to lose him the way you did.

      Your description of the passing of your ex-husband gave me goosebumps – that last smile, just for you, your singing just for him – what love you had for each other!

      Thank you so very much for sharing your tragic stories, opening your heart to look death in the face and talk about what it’s like. You’ve endured a lot and it’s stories like yours that help others as they go through the sudden & earth-shattering bomb of grief.

      I appreciate you sharing.

  • Ms. Fran Cantor

    Dear Molly,

    It has been a delight to get to know you by the Support in Enlighten us on Different
    Elements of “LIFE” I’m amaze how most of the subject you have presented I had Experience.
    I Have been in Hospice for Six Mo. While I did not Sing. I had Volunteer had ,Traning. My
    patient was a Minister very Pleasing, Charming he would play his Hamanica for me and I would
    Play my Choir CD When it was time for a Nap I would hold his hand and we would pray
    together. We also converse about his life. I also spoke in a soft tone and we laugh so much.

    His wife was also there and I took care of her too. She was a little resolute but pleasant.
    They both had Heart promblems. I was overcome by sadness when I arrived the next day
    to find out she had pass away first. not expecting it to happen, she was Succumb in her sleep.
    After two months he Suoccumb in his sleep and I was there praying by his side with his Children
    I was very impress how they took care of their Parents. and Me they were so ever greatful
    for me being there. The Service they had was a 24 Hr, Nurse a Paster, Nurse that bathe them
    and I. A normal stay is 3 Mo. I stayed Six Mo. before they pass away. I was blessed to have
    known them. I also spoke at his Funeral which they wanted me to. Molly Thanks for letting us
    express out life Journey. Blessing to you for all that you do.!!!! +

    Frannie.

    • Oh Frannie,
      What a beautiful story. I’m so happy this post opened your heart up to that memory & prompted you to share it with us.
      Thank you so much for the beautiful service & love you showed those people. It will not be forgotten.

      Love, Molly

  • Shayna Mallik

    Wow Molly, this is so enlightening. This Hospice nurse seems to really care and have so much insite that will help many people. Thank You for sharing what she spoke about that day.

    Love,
    Shayna

  • Karilyn Leslie

    Molly,

    I would love it if we as a staff were given the opportunity to hear some of these great speakers. Increasing our knowledge of the entire process would benefit us and the families that we serve. I hope that you and Becky can brain storm and get us on the list.

    Thanks for sharing Barbara’s words of wisdom.

    kari