We, who work in end of life care, offer guidance, directions, information, how-to’s and what-to-do’s but after the words are given and repeated over and over what do we do? What do we do when there is nothing more to say? What do we do when we have no answers to give? When no amount of knowledge can change what is happening. Nothing can affect what is happening.
I vividly remember, even though it was probably 30 years ago, sitting by a young woman’s bedside. We were talking about, well actually she was talking about and I was listening to, her anguish of being so young and faced with dying so soon. It wasn’t fair! She was supposed to live to be a grandmother and here she was not even a mother AND DYING.
What do you say to something like that? Nothing. There are no words to bring comfort to her. We sat, me on a chair beside the bed and her in her hospital bed in her living room, and she raged, cried, screamed, sobbed, shook and finally looked me in the eye and said, "I need someone to hold me.” So I did. I actually climbed onto her bed, wrapped my arms around her and just held her. No words. Nothing to say. Touch was needed. We lay together on the bed until she fell asleep and then I quietly left.
I don’t often, actually rarely, crawl in bed with someone but I do use touch and closeness as part of my healing/comforting tool kit. I shake hands with the idea that bonding begins when I walk in the door. I sit close to people, not across from them, at a table or even across the room. I often ask people if I can give them a hug. Not invading their space unwelcome. Sometimes while sitting close I reach out and touch a hand, arm, a shoulder. The touch saying someone is here. You are not alone.
I think we healthcare workers rely on our words as our offering. Explanations, suggestions, instructions, even using words to offer condolences and trying to comfort. And yes, words are a big part of our job but we also need to recognize that just being there, time spent, is a comfort and belongs in our tool kit, too. "I’ll sit with you for a while. We don’t have to talk” can offer more comfort and healing than all the words we say.
Comfortable presence is what I am going to call what I’m suggesting we give when words no longer matter. When words serve no purpose.
Something More... about What Do You Do When Words Become Meaningless?
With all the regulations and charting that must be followed, we can end up losing the heart of hospice care. Patients and families are at their most vulnerable. I encourage those in end of life care to read my book, The Final Act of Living: Reflections of a Long-Time Hospice Nurse. In it I share scenarios that I learned from and share tools for how to work with families (even challenging ones).
7 comments
Lori Martin
I so agree with you that your presence is such a present, for both parties involved. I too have hero worship of you and have followed you for many years. I purchase your booklets by the dozen so I have them available when I encounter people in my life who need your information when they are encountering end of life issues with a family member, and I’ve re-ordered a few times over the years. You have such a giving heart. Thank you for your service.
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BK Books replied:
Thank you Lori for your kind words about my work. Blessings to you! Barbara
I so agree with you that your presence is such a present, for both parties involved. I too have hero worship of you and have followed you for many years. I purchase your booklets by the dozen so I have them available when I encounter people in my life who need your information when they are encountering end of life issues with a family member, and I’ve re-ordered a few times over the years. You have such a giving heart. Thank you for your service.
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BK Books replied:
Thank you Lori for your kind words about my work. Blessings to you! Barbara
Carol Alix
My best friend Susan, 65, Director of TU School of Nursing, Ph.D., beautiful heart and such an amazing person. I was honored to be her friend. Susan’s sister had died a few years before and we had become so close. She called each other sisters! She had cancer and it had come back with a vengeance. She was in ClareHouse Hospice. I visited daily for the 30 days she was there. Susan would sometimes move her hand through the air. We weren’t sure if she as waving at us or what. I was alone with her, sitting in the comfortable chair at the foot of her bed when she awoke. She waved her hand, so I waved back. She said these words to me that I hold in my heart so tightly. “You’re the best. (Pause) and I had a pretty good sister.”
I was with her daily and when she passed. Most often just sitting there, and usually holding her hand. Exact textbook passing as you describe so often.
I agree – BEING THERE – makes such a difference. No rushing in and out. Just being close.
I learned about you and your incredible books and pamphlets while in ClareHouse. I read Gone From My Sight for the first time sitting next to Susan.
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BK Books replied:
Carol, thank you so much for sharing. You gave your “sister” the best possible gift you could give her—-your time, your presence, your love. Blessings! Barbara
My best friend Susan, 65, Director of TU School of Nursing, Ph.D., beautiful heart and such an amazing person. I was honored to be her friend. Susan’s sister had died a few years before and we had become so close. She called each other sisters! She had cancer and it had come back with a vengeance. She was in ClareHouse Hospice. I visited daily for the 30 days she was there. Susan would sometimes move her hand through the air. We weren’t sure if she as waving at us or what. I was alone with her, sitting in the comfortable chair at the foot of her bed when she awoke. She waved her hand, so I waved back. She said these words to me that I hold in my heart so tightly. “You’re the best. (Pause) and I had a pretty good sister.”
I was with her daily and when she passed. Most often just sitting there, and usually holding her hand. Exact textbook passing as you describe so often.
I agree – BEING THERE – makes such a difference. No rushing in and out. Just being close.
I learned about you and your incredible books and pamphlets while in ClareHouse. I read Gone From My Sight for the first time sitting next to Susan.
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BK Books replied:
Carol, thank you so much for sharing. You gave your “sister” the best possible gift you could give her—-your time, your presence, your love. Blessings! Barbara
Cathy
Barbara,
As a long time hospice Social Worker, I have only once crawled into bed with a patient. I have sat by their bedsides, spoke soothingly to them, offered comfort anyway I could. This wasn’t even something I thought about. She was having chest pain and I just crawled in bed with her and held her hand. She wasn’t alone, she had a loving family, It’s just something I felt I needed to do at the time. Later, the nurse who was also there, told me the family was touched by that gesture. That made me happy. Even as professionals, we don’t always know what the right thing to do is, we just go with our “gut.”
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BK Books replied:
Cathy, you are so right. Sometimes our heart leads us to do things we wouldn’t ordinarily do. Blessings in the work you are doing. Barbara
Barbara,
As a long time hospice Social Worker, I have only once crawled into bed with a patient. I have sat by their bedsides, spoke soothingly to them, offered comfort anyway I could. This wasn’t even something I thought about. She was having chest pain and I just crawled in bed with her and held her hand. She wasn’t alone, she had a loving family, It’s just something I felt I needed to do at the time. Later, the nurse who was also there, told me the family was touched by that gesture. That made me happy. Even as professionals, we don’t always know what the right thing to do is, we just go with our “gut.”
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BK Books replied:
Cathy, you are so right. Sometimes our heart leads us to do things we wouldn’t ordinarily do. Blessings in the work you are doing. Barbara
Michelle
Being touched is a thousand words ❤️ Thank you for sharing your experiences. Always learn and reminded of why we do this.
~CNA Hospice
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BK Books replied:
Thank you for your comments, Michelle. Blessings to you in the good work you are doing. Barbara
Being touched is a thousand words ❤️ Thank you for sharing your experiences. Always learn and reminded of why we do this.
~CNA Hospice
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BK Books replied:
Thank you for your comments, Michelle. Blessings to you in the good work you are doing. Barbara
Yaffa B.
“Toucher” here. I always ask if I may offer someone a hug. AND have learned to be comfortable with those long silences. I used to want to fill those with words, but came to quickly realize that it was my OWN discomfort that was coming into play. We as nurses want SO MUCH to “fix” things! The blessing of hospice to ME has been the knowledge that I CAN’T fix things! I’m going on my 5th year come August. I follow you faithfully and yes, confess to a little hero worship! You’ve been a LARGE part of my education, and I’m the great hospice nurse I am today in part because of YOU. (not bragging, just that’s the feedback I get from patients/families) Thank you, Barbara. ❤️🤗❤️
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BK Books replied:
Oh, Yaffa, thank you for those kind words and the great work you are doing. Blessings from one “toucher” to another. Barbara
“Toucher” here. I always ask if I may offer someone a hug. AND have learned to be comfortable with those long silences. I used to want to fill those with words, but came to quickly realize that it was my OWN discomfort that was coming into play. We as nurses want SO MUCH to “fix” things! The blessing of hospice to ME has been the knowledge that I CAN’T fix things! I’m going on my 5th year come August. I follow you faithfully and yes, confess to a little hero worship! You’ve been a LARGE part of my education, and I’m the great hospice nurse I am today in part because of YOU. (not bragging, just that’s the feedback I get from patients/families) Thank you, Barbara. ❤️🤗❤️
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BK Books replied:
Oh, Yaffa, thank you for those kind words and the great work you are doing. Blessings from one “toucher” to another. Barbara
Marie
This is very much how I feel. I’m a young mom, not in hospice yet but very likely on my last treatment option. My body’s slowly giving up and I feel so frail and alone and I just wish someone was there to hold me. Not say anything but just hold me.
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BK Books replied:
Marie, I’m not there to hold you but here is my email address barbara@bkbooks.com. Write if you are inclined. I know words can’t take the place of a hug but I don’t want you to be alone. Blessings! Barbara
This is very much how I feel. I’m a young mom, not in hospice yet but very likely on my last treatment option. My body’s slowly giving up and I feel so frail and alone and I just wish someone was there to hold me. Not say anything but just hold me.
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BK Books replied:
Marie, I’m not there to hold you but here is my email address barbara@bkbooks.com. Write if you are inclined. I know words can’t take the place of a hug but I don’t want you to be alone. Blessings! Barbara
Kay
Having had 14 years experience working in hospice have crawled upon a bed to get closer to the pt when they were very week. It was intimate and sacred.
When Covid hit it was also very hard to wear masks as I felt so much is communicated by the face.
Alway enjoy your articles!
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BK Books replied:
Hi Kay, Touch is also the medicine we give. Thanks for sharing and blessings to you in the special work you do. Barbara
Having had 14 years experience working in hospice have crawled upon a bed to get closer to the pt when they were very week. It was intimate and sacred.
When Covid hit it was also very hard to wear masks as I felt so much is communicated by the face.
Alway enjoy your articles!
———
BK Books replied:
Hi Kay, Touch is also the medicine we give. Thanks for sharing and blessings to you in the special work you do. Barbara