The Scar In Your Heart, Grief In End of Life Care by American Hospice Pioneer, Barbara Karnes, RN

The Scar In Your Heart: Grief In End of Life Care

You asked why your relationship to your hospice work was affected following the death of your dad. I think because every time you entered a patient's home and life it touched the scar in your heart from your father's death. It rubbed your grief wound...
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Dear Barbara, I respect your opinion and input and wonder if you can shed some light. I am a certified HPCRN. The JOY of hospice was mine for years.  I could easily see the beauty in almost any end-of-life situation. Then, my dad died on our service in 2015. I continued to work for hospice for the next three years but after my dad died I couldn’t see ANY beauty in end of life. I completely walked away in 2018. I don’t know how to “get it back.” You probably cannot answer this, but I’m curious about your thoughts.

Being on the other side of hospice (being a family member of a loved one dying) puts an entirely different perspective on end of life and our professional role. 

When my mother was on hospice the first thing I said to the nurse as she entered my home where my mother was staying was, "I am Barbara, Dorothy's daughter, not Barbara, director of hospice." Also, before my mother and step father’s deaths (they died within five months of each other) I quit my job as director of a hospice. I figured I could always find another job when I had my active grief behind me. 

When one of our own is facing the end of their life dying becomes personal not professional. We pull from a different part of ourselves in our professional role. 

You asked why your relationship to your hospice work was affected following the death of your dad. I think because every time you entered a patient's home and life it touched the scar in your heart from your father's death. It rubbed your grief wound. 

I think we compartmentalize so many of our thoughts and feelings to keep them safe and protected. Grief has its own compartment. It is how we learn to function in daily life. 

We don't recover from grief. We learn how to live with it and compartmentalizing it is one of the ways we find to carry the pain. Every time you saw a patient or went to work the door to your grief compartment was opened.  

I think you made a wise decision to find a job elsewhere in healthcare. 

When I was a director of hospice I would not let an employee return to direct patient care for a year following the death of someone close to them. I found other areas of hospice for them to work in.

Something More...  about The Scar In Your Heart

Caring for people at end of life has its own unique challenges.  Hospice, Palliative Care and Home Health agencies need to deeply support their staff or they will suffer from compassion fatigue. I encourage the use of my dvd, Care For The Caregiver and accompanying booklet, You Need Care Too.

12 comments

barbara

Jennifer, sitting by your grandmother’s side, holding her hand is your gift of love to her. She knows you are there. Talk to her, she can hear you. My blessings are with you both. Barbara

Jennifer, sitting by your grandmother’s side, holding her hand is your gift of love to her. She knows you are there. Talk to her, she can hear you. My blessings are with you both. Barbara

Jennifer C

I am sitting here by my grandmothers side. She has been mostly unresponsive, unable to communicate with words, but she is able to weakly move her thumb to rub my hand as we sit here quietly just holding hands. I had wondered if she knew I was even here, her rubbing my hand back as I rub hers let’s me know that my presence in bringing her comfort and she loves me. I have been reading your booklet, Gone from my sight and it has been a tremendous help! I have had to read it a couple of times over the last 24 hours, as I am struggling with what seems to feel so cruel, being stuck in a body with a mind that feels like it is still all here. This has been so hard, but your book is helping. Thank you.

I am sitting here by my grandmothers side. She has been mostly unresponsive, unable to communicate with words, but she is able to weakly move her thumb to rub my hand as we sit here quietly just holding hands. I had wondered if she knew I was even here, her rubbing my hand back as I rub hers let’s me know that my presence in bringing her comfort and she loves me. I have been reading your booklet, Gone from my sight and it has been a tremendous help! I have had to read it a couple of times over the last 24 hours, as I am struggling with what seems to feel so cruel, being stuck in a body with a mind that feels like it is still all here. This has been so hard, but your book is helping. Thank you.

barbara

Kathy, yes, working with end of life professionally while personally grieving is a challenge that adds another layer to our grief. Please take care of yourself. Maybe start writing a journal and recording those feeling and days when something opened your grief “compartment”. Sometimes just getting feelings out and on paper helps. I will keep you in my thoughts. Blessings! Barbara

Kathy, yes, working with end of life professionally while personally grieving is a challenge that adds another layer to our grief. Please take care of yourself. Maybe start writing a journal and recording those feeling and days when something opened your grief “compartment”. Sometimes just getting feelings out and on paper helps. I will keep you in my thoughts. Blessings! Barbara

Kathy Barham

Barbara, this article speaks to my situation right now. I work with a hospice as Volunteer Coordinator. I lost my father in March of 2020, about the time our world stopped moving. I have been working from home, and have realized that my grief for my father has overflowed into my work, and vice versa. The door to my grief compartment has been open closed too many times in the last year. I am comforted by the words in this article. I passed them on our chaplains, social workers and bereavement coordinator. I love all your booklets, especially Gone From My Sight. When I lost my mother in July 2015, the poem in that book comforted me. I have shared it many times with friends and family members. Thank you for always being willing to share your experience and knowledge with others. Blessings to you. Stay well!

Barbara, this article speaks to my situation right now. I work with a hospice as Volunteer Coordinator. I lost my father in March of 2020, about the time our world stopped moving. I have been working from home, and have realized that my grief for my father has overflowed into my work, and vice versa. The door to my grief compartment has been open closed too many times in the last year. I am comforted by the words in this article. I passed them on our chaplains, social workers and bereavement coordinator. I love all your booklets, especially Gone From My Sight. When I lost my mother in July 2015, the poem in that book comforted me. I have shared it many times with friends and family members. Thank you for always being willing to share your experience and knowledge with others. Blessings to you. Stay well!

barbara

Hi Jane, thank you for sharing your experience with your husband’s long illness. Caring for someone at home is hard work but can be so rewarding when we look back at our sacred memories. Blessings to you dear Jane. Barbara

Hi Jane, thank you for sharing your experience with your husband’s long illness. Caring for someone at home is hard work but can be so rewarding when we look back at our sacred memories. Blessings to you dear Jane. Barbara

Kimberly

I love this. I became a Hospice LPN after the loss of my Mother in 2019. That experience taught me the care and compassion patients need at end of life and I feel honored to bless families with their loved one’s care at that most difficult time. Thank You BK for the books and these posts as they inspire and teach me daily.

I love this. I became a Hospice LPN after the loss of my Mother in 2019. That experience taught me the care and compassion patients need at end of life and I feel honored to bless families with their loved one’s care at that most difficult time. Thank You BK for the books and these posts as they inspire and teach me daily.

barbara

Hi Deborah, You are wise to take care of yourself during this challenging time. If I can be of any help or guidance use my personal email barbara@bkbooks.com. My blessings are with you and your husband. Barbara

Hi Deborah, You are wise to take care of yourself during this challenging time. If I can be of any help or guidance use my personal email barbara@bkbooks.com. My blessings are with you and your husband. Barbara

barbara

Hi Kathy, I have a grief booklet called My Friend, I Care. Thank you for asking. Blessings! Barbara

Hi Kathy, I have a grief booklet called My Friend, I Care. Thank you for asking. Blessings! Barbara

Deborah

This topic is so timely! My husband just began hospice care and I’ve put my longtime hospice and bereavement volunteer work on hold. It’s a comfort to know why that feels and is right—- that it’s not ‘being weak.’

This topic is so timely! My husband just began hospice care and I’ve put my longtime hospice and bereavement volunteer work on hold. It’s a comfort to know why that feels and is right—- that it’s not ‘being weak.’

Gail Weatherill

I always think of Janice Joplin belting out, “Take another little piece of my heart.” Yes, they leave many gifts behind, but every single one takes a little piece of my heart with them.

I always think of Janice Joplin belting out, “Take another little piece of my heart.” Yes, they leave many gifts behind, but every single one takes a little piece of my heart with them.

Jane Fannin

Hello, I have to say taking care of my husband, at the End Of Life, not sure I was up to it! It hit us suddenly, when we heard the word Cancer and spreading! We had no time to digest it and what impact it would cause us. Just after Two mini surgeries, dealing with Vascular Issues, he felt on the mend. Then came a follow up Appt, to where we were devasted! But, with previous Medical Care for him, learning to be his Nurse for years, from Insulin Shots, to IV/Antibiotics ministered, and a whole lot of Wound Care/Ulcers, Amputations, to Med dispencing, I felt compentant enough and he trusted me too. No question to going to a Nursing Home, wasn’t his wishes! Him being a Veteran, he had resources to help us. We started with VA Caregiver Program, for me to get paid, while at home, after he was Hospitalized, six days. Prior to that, we had Home Care for a bit. Where they were saying to me, try Hospice. My husband, said NO! But, in the end after the Hospital stay, I knew the road ahead, needed help! Hospice went to work FAST, with all I was to need to have him home. What a relief! All I had to do, was do his hygiene, wound care, feeding, meds, and loving him more and more. Actually, I had been taking care of him for around Nine years prior to Hospice. He had so much Medical Issues. So, I did the Care Giver Program, finish the assessments, got a Certificate for it, he then dies! In all, with Hospice, around Four Months of care. What I experienced, I almost can’t explain, what goes along with a person who has Cancer. But, it sunk in, this was my Husband dying in front of me. He didn’t want to die, asked for help many times, and I had to kick in apart of me, outside our circumstances, to talk about the end of care with him. And it hurt!! So many falling a part moments, let me tell you! I adjusted really, was getting use to the nearing of him passing. I became to understand so much more of what’s needed to get through.My faith for one, my love for him another, and Medically, beoming stronger, for him to pass! I was at my Mother’s last minutes too, when she passed. Two people, different in their passing, but still hard. I was married for 38 years to my husband. We had a Large life, Adopting Four Children. He was a Trucker for over 25 yrs. I learned to drive Semi too, he taught me. Then we settled down to Adopt, who knew! So I say, Hospice has it’s place, much needed too, in so many families, Im sure they appreciate the help. And most of all, we must HONOR those who choose to do this, help with familes, I know I do! God bless, all those who pass, those who help, those who care and the ones who are getting you through, to do the most honorable job for your family member.

Hello, I have to say taking care of my husband, at the End Of Life, not sure I was up to it! It hit us suddenly, when we heard the word Cancer and spreading! We had no time to digest it and what impact it would cause us. Just after Two mini surgeries, dealing with Vascular Issues, he felt on the mend. Then came a follow up Appt, to where we were devasted! But, with previous Medical Care for him, learning to be his Nurse for years, from Insulin Shots, to IV/Antibiotics ministered, and a whole lot of Wound Care/Ulcers, Amputations, to Med dispencing, I felt compentant enough and he trusted me too. No question to going to a Nursing Home, wasn’t his wishes! Him being a Veteran, he had resources to help us. We started with VA Caregiver Program, for me to get paid, while at home, after he was Hospitalized, six days. Prior to that, we had Home Care for a bit. Where they were saying to me, try Hospice. My husband, said NO! But, in the end after the Hospital stay, I knew the road ahead, needed help! Hospice went to work FAST, with all I was to need to have him home. What a relief! All I had to do, was do his hygiene, wound care, feeding, meds, and loving him more and more. Actually, I had been taking care of him for around Nine years prior to Hospice. He had so much Medical Issues. So, I did the Care Giver Program, finish the assessments, got a Certificate for it, he then dies! In all, with Hospice, around Four Months of care. What I experienced, I almost can’t explain, what goes along with a person who has Cancer. But, it sunk in, this was my Husband dying in front of me. He didn’t want to die, asked for help many times, and I had to kick in apart of me, outside our circumstances, to talk about the end of care with him. And it hurt!! So many falling a part moments, let me tell you! I adjusted really, was getting use to the nearing of him passing. I became to understand so much more of what’s needed to get through.My faith for one, my love for him another, and Medically, beoming stronger, for him to pass! I was at my Mother’s last minutes too, when she passed. Two people, different in their passing, but still hard. I was married for 38 years to my husband. We had a Large life, Adopting Four Children. He was a Trucker for over 25 yrs. I learned to drive Semi too, he taught me. Then we settled down to Adopt, who knew! So I say, Hospice has it’s place, much needed too, in so many families, Im sure they appreciate the help. And most of all, we must HONOR those who choose to do this, help with familes, I know I do! God bless, all those who pass, those who help, those who care and the ones who are getting you through, to do the most honorable job for your family member.

Kathy Roberts

Dear Barbara, do you have books available on grief. Thank you so much.

Dear Barbara, do you have books available on grief. Thank you so much.

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