Note: I prefer my original title, but proud to see this Featured on HuffPo
On Tuesday, as I sat beside him, “Frank” died (*not his real name). I didn’t notice his last breath, just a sudden stillness. I placed my hand near his mouth, to see if I could feel an exhalation, and when I didn’t, I touched him gently and said goodbye. Then I went to get the nurse, to note the time of death. Frank was 93, and while his death was expected, we didn’t expect it then. I had just seen his family out, and told them I’d sit with him. However, when it comes to death, I’ve learned that expectations are foolish.
As a Hospice volunteer, I spend every Tuesday with people who are dying. I cook their meals; hold their hands; read to them; I sing and I sit quietly. I tell them stories and I listen to theirs. I wipe their foreheads, when fever or illness makes them sweat; I listen as they struggle to come to terms with the end of their lives, and I laugh with many of them. As a volunteer, I do not provide any form of medical care, only comfort. It’s an honor and a privilege that I look forward to every week, and it’s changed me for the better, in more ways than I can count.
Three years ago, my mother spent three months at the local Hospice House, where I now volunteer. She had late stage Huntington’s Disease and had broken her elbow. It wasn’t a fatal injury, but she was done fighting her illness and chose to stop eating. Her body was frail, and she was grateful for the peace and quiet of Hospice House and the palliative care offered. I accepted her decision and visited every day. I was grateful for the respectful, tender care she received in hospice, though I resented death for taking her so young (67).
Death and I have a long and tangled history. My father was killed in a car accident when I was 10, and Huntington’s has plagued my family– claiming my grandmother, my 49-year old aunt, and my mother– so far. Five years ago, my 43-year old cousin was killed in a plane crash, just weeks after my aunt’s death and a month before a friend was killed in an accident. At times, it felt like death was constantly blindsiding me. Volunteering at hospice has changed that.
Hospice House entry hall, with memoriam plaques…
One of the primary goals at Hospice House is to treat every patient with the utmost respect. Hospice does not seek to extend nor shorten any patient’s life, but seeks to help each person remain as independent as possible in making end of life decisions, and as free from physical pain as is medically possible. End of life is where we begin. As a volunteer, I have a unique opportunity to stare death in the eyes each week, and not blink. I walk in those doors, eyes wide open– knowing that I will connect with wonderful people and I’ll have to say goodbye to them. There are few blindsides at hospice. The entire team is there to provide compassion, support and care, at the end of a person’s life. Inevitably, it’s hard when a patient is someone I know, or someone young– there will always be traumas, sudden deaths, and illness to remind us that life can change very suddenly, that life is precious.
and the Family Room kitchen area
Each week when I check the list of patients, I often choose to skip some– including the diagnosis. I like to enter each room and allow that individual to show me who they are, and tell me what they need. I’ve learned that while there are similarities from patient to patient, there are also infinite details that make each person’s needs unique– cancer does not look the same on every person who has it; aging, illness, peace is experienced differently from person to person. Despite who they are, or how they’ve lived their lives, the end of life can be a vulnerable time, and I want to find whatever it is that will help them feel seen and heard. I have no way of knowing if the person I’m spending time with was a horrible parent, or miserable neighbor; I don’t know if they were a drug addict, teacher of the year, or a saint. I know that they are dying, and I love being part of the team of people who will help make that transition as peaceful and supportive as possible, whatever came before.
Over time there are a few things I’ve learned some things that impact how I approach my role as a volunteer:
1) When the end comes, loss is loss, and you can’t always prepare for it nor predict it. Frank was 93 years old; his family knew that he would die soon. However, when he did, just minutes after they’d left his room, it was still a huge loss. I’ve seen patients “hold on,” or remain in hospice for months, like my own mother, and others who died very quickly. I never say to patients or families: “see you next week;” there’s no way to know if I will. I say, “I’ll be back next Tuesday.” It’s hard to predict, and while many patients struggle to accept their death, family members deal with it in many different ways as well.
2) People are not always able to leave their conflicts at the door– but they should. It’s not easy for anyone to face their own mortality, but it can be much harder when family members bring conflict and unresolved issues along. I’ve heard so many patients share their distress, as those they love squabble over care issues, estate planning, and even funeral arrangements. Aside from the hospice social worker, other caregivers don’t get involved in these issues, but we have all seen the toll they can take on a person’s emotional wellbeing at the end of life.
3) So many mothers– whether they’re 30 or 100, want to hear: “thank you; you did a good job.” I’ve sat with women who are dying, who have young children as well as those who have outlived their children. I understand that relationships are complex, and it’s not a given that every mother did a good job, but I am humbled by that need and the peace I’ve seen on patient’s faces, after they hear that message. Those were my final words– just minutes before my mother smiled, and took her last breath. In the end, I believe we all want to hear that we mattered and did our best.
4) Mean people die, funny people die, religious people, angry people, and good people die. Whether someone has lived a wonderful life and feels cheated to be dying too soon, or they’ve lived a long life and are ready, or their life has been difficult and this is just one more short straw, hospice care offers an opportunity to ease that final stage.
(While she was at Hospice, I routinely got into bed with my mother. It felt good to both of us)
If I can share some humor, or discuss news and current events, if a person needs to hear me read psalms, or have me sit quietly, then that’s what I do. Hospice care is not there to judge or give one-stop care; each patient is unique in their history, their needs and the way we care for them. I love that challenge. There are patients I’ve only known for hours, and those I will always– people who have touched my life, and allowed me to share a sacred time in theirs. Each week I look death in the eye and I’m reminded just how fragile life is and how my actions can help make the final transition a little bit better– I am reminded, how to live.
This is a poem that a special patient shared with me. He’s younger, and has had some hard times. Through it all, he’s written poetry– pages and pages. However, when he found out he would be going into Hospice, he threw all of his work in the garbage. He was able to recall a few of the poems, and rewrote them. He shared them with me, and I was deeply touches by the depths of his feelings. He asked me to share it with others, so that “he’ll be remembered.” He gave me permission to share this poem here:
I’m on a street corner standing alone,
Another windless night without a telephone.
In the darkened air I’ve remained for years,
Wondering if I will be able to hide all these tears.
Though the tears that are shed, are not really known,
For the wind that will dry them has already blown.
If the tears are cried and the voices still call,
Will the tears be dried in the next early fall?
Or will the tears remain, forever each night,
And will the tears that are seen become everyone’s fright?
But as the wind will pass and the tears be dried,
Will there not be someplace else someone has not yet cried.
© R. Greenberg, hospice patient (with permission)
* * *
Help Me Reach My Goals! I’d love to see the Tales From the Motherland Facebook page reach 700 likes in 2015. Have you stopped by to spread some fairy dust? Follow me on Twitter, it’s where I’m forced to be brief. Most importantly, if you like a post I’ve written, hit Like and leave a comment. I love to hear what readers think. Honest, positive or constructive feedback is always welcome. Click Follow; you’ll get each new post delivered by email, with no spam. If you see ads on this page, please let me know. They shouldn’t be there. ©2014 Please note, that all content and images on this site are copyrighted to Dawn Quyle Landau and Tales From the Motherland, unless specifically noted otherwise. If you want to share my work, please give proper credit. Plagiarism sucks.
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Quietly..I nod to you and say ” you’re pretty special “
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Thank you Audra. I appreciate that– though, I’m doing what I love. I get a lot out of this! thanks.
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Reblogged this on ugiridharaprasad.
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Thanks, as always, for sharing my work!
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You are an Angel of Mercy and Compassion, Dawn.
You done good.
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Toby, not really… but thanks! I love what I do; I get a lot out of it, and there are so many others who are doing this work too. We each do something in the world. But, thanks!
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It takes a special person to be able to work in hospice. I admire your courage, strength, and dedication as a volunteer, because I know it takes all those things. No doubt there are plenty of rewards, too. Just remember to take time to nurture yourself, too.
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It’s interesting, Carrie, I really do feel like my time at Hospice IS when I nurture myself. I know what you’re saying, and believe me I do. With my nest virtually empty, I have lots of time to do what I want. But, I love this work and get so much from it. Thanks for your lovely feedback; it’s much appreciated!
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Well, they are lucky to have you.
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They are lucky to have you visit.
Rock on, Dawn.
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I know you have spent time doing similar volunteer work, Guapo! As you know, we get a lot from doing it; it’s very fulfilling. Thanks so much for stopping by to read and comment; it always makes my day to see your surfboard. 😉
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Thanks for always sharing. Seems you write & I read~at the time needed! Keep sharing~your writing & self! ❤
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Thanks so much Barbara. I appreciate you taking the time to read my work; I’m glad it resonates with you.
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Wonderful work you’re doing, Dawn. I’m sure you bring empathy and love to the families and patients. You might recall that one of the Tangerine Tango contributors, Barbara Chapman, wrote about her work in hospice. I’m not sure I’d be strong enough to do it.
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It’s not for everyone, I’ve learned. There are volunteers that prefer not to work directly with patients, but instead offer so many other things to Hospice House. I love what I do, and that makes it fulfilling is so many ways! Thanks for your feedback, Lisa.
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I want to hug you. I know what a special thing hospice I’d and the peace it can bring to the dying and their families. I remember my grandpa receiving home hospice, and how my grandma, mom, and her siblings really leaned on the kind souls like you who were there for all of them. Thank you for what you do, and for sharing these insights with those of us who don’t get to experience death in this way.
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Thanks so much Kelly! I’m so grateful for the help hospice has given my family, over the years. It really is an honor to get to give back… and it really has changed how I see life and death. Thanks for your kinds words. xo
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Just beautiful. Thank you for this. I’m not sure what it is with you and me and death this week, but I do know that were I to be in a place facing my own end-of-days I truly, madly, deeply cannot imagine a volunteer I would rather have by my bedside than you. Inspiring.
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I hope we never have to honor that request, but it would be a joy to spend any time with you… this year, darlin’, THIS year for sure!
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Love it! Boston can’t be more than a flight away…
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Boston’s home, so there’s that too! 😉
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Wow. This is beautiful. As are you.
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Thanks so much Katrina! I really appreciate your kindness.
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I loved reading this, Dawn. Thank-you for sharing your wisdom. I especially liked what you wrote about what every dying mom wants to hear. Although my relationship with my mother is in the “complex” category, I have learned to appreciate that she did her best and have made it a practice to tell her that often while she is living. Hospice workers are Angels doing God’s work. I know your work is appreciated and valued so much.
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Lori, how wonderful to find you in my comments’ section; thanks for taking the time! I too had a very complex relationship with my mother. Her illness allowed me a lot of time to accept aspects of that, and move through it. While her death and the 3 months she spent at hospice were hard on all of my family, I will always be grateful for the time she and I had to heal some old wounds. In the end, it was so meaningful to be there with her. Thanks again for taking the time to read and comment; it’s much appreciated! 🙂
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This is a touching and beautifully written piece. I, too have lots to say about Death and am editing now. Thank you for sharing.
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I look forward to reading it! Drop back by and leave a link, so I can find it. Thanks for taking the time.
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I appreciate the seeming boundlessness of your heart. If I found myself in need of care at the end of my road, I can only imagine how fortunate I would be to have you near. Also, thank you for the poem at the end of your piece. It is a beautiful and touching finale. – Mike
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Mike, as I told Jen… I hope to never honor that wish, but you know I’d be there in a heartbeat! Such a joy to have gotten to know you here.
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When my father had to stop chemo because he was too sick, his doctor put him on hospice. A volunteer would come and visit him once a week (at home). After a year, Dad got healthier and was taken off hospice. However, their friendship continued for the next 4 years, until he was put on hospice again, for the final time. Even after his death, this wonderful woman stayed in my mother’s life and gave council to me during my mother’s last year. Such an important thing to do; that you do.
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I have met so many amazing people, through hospice, Susan! People who connect with patients and do such lovely things, meaningful things. I have not worked in the community; I’ve been focused on work at “the house,” but I’m blown away by the the extra mile so many people go. Thanks for sharing. xo
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What a wonderful service you are providing Dawn – and isn’t it amazing how your intimate experience with death has provided you with the compassion and ability to look death in the eye with these people?
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Indeed! It has been such a rewarding experience, Sara. Each time I arrive at Hospice, I feel like I’m exactly where I should be.
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I feel the same way about my work in education support. Aren’t we lucky?
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Yes! See, I feel so grateful for all the folks like you, Sara, who were there when my kids were in school! We all find our niche, and if we’re lucky, we help others in addition.
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I admire your ability to be versatile and use yourself to help others in so many ways. You are a true example of a well rounded woman and I’m always very inspired by your works. Thank you for sharing this story. It takes a special person to be able to look death in the eye so gracefully and help people walk to the other side of life on easier terms.
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That is SO kind! Thanks. I suspect my family and good friends would tell you that I’ve got some sharp edges, not so well rounded! 😉 I’m trying… and that’s the best any of us can do.
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Trying your best is all you could ask for.
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Trying your best is all you can do.
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Not everyone can do what you do, Dawn. Bless you for the comfort you give. — Suzanne
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Thanks Suzanne. Not everyone can do it, but there are many things others do that I can’t. In the end, we all balance each other out. 😉 Thanks for your lovely support.
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Such a beautiful portrayal of what Hospice does. I was a Hospice RN for years and learned to see the passing of people could be as beautiful as birth. Thank you for your sharing. Susan:)
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I could not agree more, Susan! I think it is in fact VERY similar! My perspective has changed immensely since starting this work. Thank you for your many years hospice work. I hope it was equally rewarding for you.
Thanks for stopping by Tales From the Motherland. I appreciate you taking the time to read and share your thoughts!
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Having used hospice, it was really great to read what it is like from your point of view as a volunteer. Such important work! You are truly an angel to help usher people into the next world. I know that it means a lot to family members to have that support! Thank you!!!
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Thanks Heidi– I know too, which makes it that much more meaningful for me to pay it forward. My mother and my grandfather both had hospice care, and it meant so much to our family. I love what I do; it’s a bonus that it makes me an angel. 😉 xox
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It takes a special person to do what you do (and how you do it). You truly are a wonderful person, Dawn!
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And you know I love you back, Gregg T. xox 😉 Thanks!
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I love this…what you do and you have challenged me…i just love it.
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Thank you so much, Teresia. I’m touched that my work impacted you this way. Welcome to Tales From the Motherland! I appreciate you taking the time to read and comment.
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You are blessed and a blessing.
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Thank you again! I’m grateful for your thoughtful words.
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Dawn,
What a wonderful, wise woman you are and this is a great piece of writing. Both of my parents died while in Hospice care and I will always be grateful for that. To be able to leave this Earth with dignity and care is such an important process and I honor your commitment as a volunteer. It wasn’t so many years ago, that people were subjected to endless and futile medical procedures in order to prolong life, no matter what – while dying in a sterile hospital room. Even when my mother died in her beloved home surrounded by her closest family and friends, a cousin berated me on the phone for not authorizing life-saving measures (“What? You didn’t do an I.V.?!”)
With the advent of the Hospice movement, patients and their families now have choices.
Bless you, Dawn.
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Cathy, your comments and feedback always mean so much to me; thank you! I think it’s a huge improvement in society overall, that Hospice is available to so many more people now. My mother’s life had little value/meaning in the end, for her, and I’m grateful that Hospice was there to help her and it peacefully and with her needs considered. I agree that sustained medical intervention, benefits few- in many cases. As someone else said in their comment, I think that hospice is much like the birth process in its beauty and importance. Thanks again for your comment.
Sent from Dawn’s iPhone
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Your thoughtful pieces are always great to read, but this one in particular was touching. Been thinking a bunch about death. With my mother’s Alzheimers and coming up on the 5th anniversary of a dear friend’s son’s death it is on my mind. Your pieces is a wonderful reminder that the one thing we all have in common is that we will all dies someday. And that for most of us we can’t/don’t chose how it happens. I was especially touched by what you wrote about the mothers in hospice who want to hear from their kids. My relationship with my mother has been troubled for a long time, but we are both using her decent into the fog of dementia to heal the loving bond at the core of our mother and daughter relationship.
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Heidi, I really appreciate your very thoughtful comment. I know for me, my mothers decent into Huntington’s was a very healing time for us. It was incumbent upon me to remember at all times but she was not always in control of what she said or did; yet, it was especially good for both of us to go through that together. It was not always easy; there were times when I felt resentful and very challenged, but in the end it was a very special time for us. Thanks again for taking the time to read and share your thoughts.
Sent from Dawn’s iPhone
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Oh Dawn, how beautiful. Thanks so much for sharing this party of your life with us. I greatly admire the people who work in Palliative Care.. such deep and inspiring work. The photo of you and your Mom grows my heart!
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Thanks so much Brenda. That’s a favorite photo of mine, as well. Neither of us knew that my husband was taking it, and it still makes me smile.
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Beautiful. We loved our hospice volunteer. My mother, who rarely remembered anyone new in her life, remembered her dear Betty. Betty also offered support and comfort to me, as I was losing my mother. Thank you for what you do and for sharing it.
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I’m sorry for your loss, but so glad that your mother had Betty there with her. It’s been amazing to me to see how close I’ve become with some families… it’s such an intense, vulnerable time; it’s meaningful for both me and families to connect under those circumstances.
Thanks so much for visiting Tales From the Motherland; I really appreciate your feedback.
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You’re an incredibly kind and sensitive person Dawn, and this is a very moving piece. Being a hospice volunteer has to be one of the most difficult volunteer gigs out there, and it’s generous of you to do it. Congrats on the HuffPo – impressive and well deserved. ~James
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Thanks so much James. I don’t find it as difficult as so many others do… it feels very natural, a calling of sorts. I love doing it, and so– it’s easy.
Being a featured blogger for HuffPo has been a real honor, with its pluses and minuses. Mostly… pluses. 😉 Thanks!
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Thx for this blog post. We lost our father to cancer. He was in palliative care until just before Christmas before he died.
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Jean, thank you so much for visiting Tales From the Motherland, and for taking the time to read and comment. I’m so sorry for your loss; it hasn’t been very long! I lost my own mother on New Year’s Eve, three years ago… I think the holidays makes it feel a lot harder, at the time. I hope your family found some peace in experiencing palliative care for your dad. Again, thank you for sharing your experience.
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