“I haven’t called you, because I just don’t know what to say.” My (former) husband had finally caught up with his relative, who admitted that he had been avoiding calls and requests for support. “I have never been in your situation. Your wife is dying. I don’t know what that’s like, so how could I know how to help you?” the young person asked.
I had just been diagnosed with a terminal condition, and I was quickly learning how challenging it was to find people who could help me. Not with medical assistance, although that was challenging as well. What I struggled to find was someone to help me do this thing, to help me learn how to be with my dying, how to be dying.
Seventeen years later, I still have not found a large number of people who are able to do that, but I have found a few. And on this quest I have amassed a whole lot of wisdom and guidance about how to support the dying.
The Rule of Thirds
Grief expert Alan Wolfelt contends that when we are grieving, the people around us can be clustered into three different categories, according to how they approach us:
- Some will offer absolutely unhelpful, sometimes even harmful, “support”
- Some will disappear
- Some will be present to us and with us
I have found exactly the same thing with people surrounding terminally ill patients. This isn’t surprising, because dying is, of course, a time of great grief; and much of the experiences we have when grieving a great loss in our own life are similar to those we have when grieving the loss of our own life.
Some friends and loved ones can show up fully there and support their loved one in whatever ways are needed. Some cannot be found. And the rest try to help but actually may make the situation less comfortable.
When I was recovering from my first open heart surgery, a friend from church was beginning chemotherapy for her newly diagnosed breast cancer. We had much in common: toddler sons, serious medical conditions, and lots of odd encounters with people who attempted to be helpful.
We began to collect all the awkward conversations, each of the seemingly kind but actually hurtful comments. We had plans to someday compile them into a book.
It would include the remarks that related her cancer to a shortened period of breast-feeding or my heart condition to an inability to forgive people in my life.
Also in the book would be compiled doctors’ curt assessments, fueled by too many statistics and a paucity of compassion.
The thoughtless, tired old adages would be there too: God only gives you what you can handle. You must be really strong in order for the universe to send you this challenge. At least you got to have a baby before you got sick.
We eventually realized that that book would be way too dark for us to ever write. We also knew that anyone in our condition had experienced just as many awkward conversations and hurtful comments.
And, besides, it actually wasn’t those sharp, barbed phrases that hurt me the most. In fact, they made decisions very easy for me; when someone began to talk about my illness – or anyone else’s – in such a manner, I would just chuckle internally, amazed at their cluelessness, and focus on others around me who did not say those types of things. And, in times of great compassion, I had empathy for them; their ideas about loss, their fear of entering into that wilderness I now inhabited, I knew would someday bring them great difficulties.
For me, it’s that second group of Wolfelt’s categorization that has caused the most harm.
I’m not just talking about those who physically ignore me and my condition – the people who stop calling when I become ill, the friends who promise to visit but never do, the well-meaning but unsure ones who mumble, “Let me know if you need anything” as they back quickly away from me. I have gotten used to that.
What I still struggle with is feeling invisible, sometimes even around people who are close to me.
I have been in hundreds of hospital rooms and nursing homes where the visitors talk to one another but not to the person they are visiting. It feels as though they want to pretend that their loved one is not sick or dying, so they continue with their conversations next to the bedside, often leaving that person out of the conversation entirely. Sometimes they bombard the sick with never-ending tales of their own life, never pausing long enough for the person they are visiting to actually speak. I understand why we behave that way. We are uncomfortable around illness (and certainly around death), so we try to distract ourselves with chatter.
But every time we do that we miss an opportunity to actually be with the person we are with; and we do that to our detriment as much as, if not more than, to theirs.
Wolfelt calls his categorization of support people “The Rule of Thirds”, because he finds that the groups of “supporters” fall into thirds. I am not sure if he actually means that statistically in terms of grief support.
That’s not my experience at all with the dying. I think that that last group – the ones who can be present to us and with us – often contains a very small number.
This perhaps is not surprising. It isn’t something we were taught about as children. We didn’t have classes on how to help our friends who are sad, although that surely would be a wonderful component to any education.
And it used to be. Every single wisdom tradition, every religion ritualizes this support in order to instruct us on how to be the most loving and helpful to those who are dying. And the guidance is very simple – and sometimes very challenging to follow.
My friend Rabbi Joe recently taught me something very important about the Jewish tradition of sitting shiva. I have studied this rite of mourning for years and have participated in it a few times; yet I have not witnessed one of the oldest and most sacred traditions within this rite, and it has to do with those supporting the bereaved.
Beginning on the day of the funeral and lasting for seven days, those closest to the deceased gather together in a home, usually that of the person who has died, and for seven days they sit and pray together. Others come to support them, bringing food and comfort.
Traditionally, those sitting shiva sit on chairs low to the ground to signify the downward pull of their bereaved state and to reinforce their humanity (even our word “human” is derived from the Latin word humus, meaning earth; there is a similar etymological connection between the words for “human” and “earth” in Hebrew). But here’s what Rabbi Joe shared with me, which I find so beautiful: those who come to support the bereaved should sit on the floor near them. They do this to show solidarity, to physically indicate, “I am here with you, and I will stay with you wherever you are in this journey.” There is no attempt to pull people up from that place low to the ground or to remind them to look upward toward the heavens. There is simply companionship where they are.
This is exactly what the dying need to experience as well. It may not be physically possible to sit on the floor, but where and how we sit when spending time with the dying is vitally important. Already, most of us who are dying are in physical positions that reflect our vulnerability and weakness. Don’t stand above us and talk down to us, please. Don’t sit too far away from us, signifying the chasm between your situation and ours. Come close. And just sit.
Another traditional aspect of supporting those sitting shiva that can be used in supporting the dying is to refrain from speaking. When entering the place where the bereaved are sitting and praying, we are advised to not speak. We speak only after the bereaved has spoken.
There are many beautiful gifts that arise from this prescribed silence. We avoid saying the often thoughtless things that first arise in our minds in times like this. Conversations about ourselves and the external world cannot serve to distract us from the sacred space the bereaved inhabit. And we have the opportunity to wait and see what they would like to say – if they would like to say anything at all. This millennia-old tradition is structured to assist the bereaved as they navigate this liminal state of early grief. By remaining quiet until they speak, we can learn what that state is like for them in every single moment. We focus our attention on just being there for them, not on mindless chatter.
With the dying, this is imperative as well. If we refrain from the stories, the banter, the jokes with the nurses, we can better tune into the person we are there to see. Sit, be quiet, look into our eyes, hold our hand. Breathe deeply. Do not try to change the state that we are in, to “cheer us up” or to help us “face reality” about our condition.
And what you find may be that we do want to hear your stories, we may want to laugh at your jokes, we may like to be cheered up or helped to understand our situation. But we may not.
At times when I am in that hospital bed, I relish the tales of my children’s athletic events and homework, my husband’s work, cultural or political events beyond my sterile room. And at other times, I find such things distract me from really deep places that where I am drawn, places of quiet contemplation and prayer.
The only way to know what our loved ones need is to be quiet and pay attention. And if we feel compelled to speak, we can first ask if that is welcome (“I heard a funny joke, can I share it with you?” or “Would it feel good to listen to a story right now?”). But we do well to be mindful of the urge within us to talk in this way. Are we trying to avoid venturing to the wild landscape where that person now lives?
If so, let us be quiet.
There have been a few times when people have broken their silence with me in ways that were absolutely perfect. Once, a relative asked me gently, “Are you afraid?” Others in the room gasped, worried that she had given voice to something everyone was afraid to discuss. But I felt such relief to hear this question. It let me know that she was trying to be with me where I was. In that moment, I felt entirely seen and supported.
The Wild Landscape of Dying
The biggest barrier we have to actually following through in these two very simple instructions (Sit, Be Quiet) when we are with the dying is that we have not learned to venture into these scary places ourselves. It is absolutely essential that we explore our own relationship with death at every opportunity if we want to be present for, to, and with our loved ones who are dying.
My relative who avoided calls because he felt he had nothing to give due to his lack of experience? He had not dared to contemplate how my husband or I might be feeling. That was too frightening, so he avoided it altogether. And the relative who asked about my fear, the one who allowed herself to actually be pulled into my experience, had begun to imagine what that may be like for her. Each of us can do this. We have the capacity to feel empathy for others who are having much different situations than our own; we need only to open our hearts and minds a little bit and be willing to walk their path – purely in our imaginations.
Death is a wild landscape with ever-changing features. No two journeys into that realm are alike; yet many of us do seem to visit similar features in that landscape. Our individual and collective constructions of death and dying help form our approach to this landscape. So many of us try to avoid death – even contemplating it – yet everyone eventually gets pulled into this wilderness. Although every living being will experience this wild place, each of us navigates our particular path through it all alone.
Over the past seventeen years, I have been through numerous hospice trainings – as a participant and as a presenter. And by far the best are those that require a great deal of work with death on all levels – not just mentally thinking about death, but emotionally confronting our fears and even physically attempting to place ourselves within similar circumstances to the dying.
Explore the wildness of death – in your mind, in your heart, in your culture’s construct, in your religion’s stories. Spend time. Walk with curiosity. Open to your longings, your fears, your questions, and your assumptions. Develop a relationship with death. Without venturing into this wild landscape ourselves, we are not able to follow those we love as they navigate their journey.
And they need us to follow. And we need to follow.
The Dying as Gurus
When we learn to sit and be quiet with the dying, to simply be present with them wherever they are, we are gifted with unparalleled opportunities.
In all wisdom traditions, it is customary for students to sit down at the feet of the teacher and just listen. When we learn to sit and be still with the dying, they become our gurus. They inhabit a liminal space; they zoom between time zones and can hold a lifetime in one glance. The wisdom they have to share often is incomparable to that found anywhere else. It may not come through words. It may be communicated through glances or even just a feeling we get when in their presence.
And when we learn to sit and be quiet with our dying gurus, we find that they are supporting us just as much as we are supporting them.
Susan Speros - August 3, 2017 at 4:56 am
It is a blessing and a privilege to help one who is on this journey. I felt honored to be with my mother when she took her last breath. My father chose a different path. He said good by, and quietly slipped away by himself. Both ways were what they chose, each different, and I understood that. Often I feel them near me. I am a breast and uterine cancer survivor, I know and understand.
Amy Agape - August 3, 2017 at 3:17 pm
Susan, thank you so much for reading and for commenting. I feel your deep knowing and understanding — one that comes through intense experiences. I feel so grateful when people, like your mother and father, are able to choose the path that they want for their living and dying. We are working to make that a reality for everyone.
Mona - August 3, 2017 at 6:32 am
Excellent advice for all of us who work with or live with the dying. And, therefore, for all of us as we are all one day going to take that journey ourselves. So the first person we need to sit with is ourselves, to face our own mortality. Only then can we sit with others comfortably and in an attitude of acceptance and even hope and joy as we allow the dying to contemplate their lives.
Amy Agape - August 3, 2017 at 3:19 pm
Mona, I agree entirely! I often wonder why we are not guided into facing our own mortality (or even many of the “little deaths” along the way) very often in our culture. I hope that we can change that, so that we are able to enter our own dying consciously — and to support others as they do so.
Susan - August 3, 2017 at 7:36 am
Such a lovely essay! I am a seminarian, Chaplain intern and volunteer at a hospice. My birth father (who I only came to know later in life) is dying. I visited him in June when I was able. I call frequently as I am 3 time zones away. I try to be present for him and his wife, both in a daughterly and pastoral manner. Your essay has given me food for thought. Thank you. Blessings,
Amy Agape - August 3, 2017 at 3:20 pm
Oh, Susan, thank you so much for reading and commenting. And thank you so much for your ministry in the world. Blessings to you and your family during this precious time.
Simon Grundy - August 3, 2017 at 9:56 am
Thank you for this wisdom and challenge. I am blessed by you sharing it and pray others will be in it’s sharing and in the practice of it. Simon
Amy Agape - August 3, 2017 at 3:21 pm
Thank you so much, Simon. I appreciate you reading and commenting on the piece. I also pray that we all learn to practice being with one another through our living and our dying.
Pam - August 3, 2017 at 11:23 am
That is so very true. As my husband went though his battle with cancer. Almost everyone disappeared, no one bothered to call or check in on him. I found that even after the battle very few people really know what he went though. Along with all the feelings and emotions that he continues to deal with.
Amy Agape - August 3, 2017 at 3:22 pm
Thank you, Pam. I’m so sorry that people disappeared; I wish that were not so. Living with — and even after — a serious health condition can be so isolating. I hope we can change that!
Deborah Drummond - August 3, 2017 at 11:27 am
This is such a valuable lesson. I have seen so much of this as a nurse and as a mother loosing my young son. When he died, no one came around except a few family members. So sad for us all. thank you for sharing. I am preparing to volunteer for hospice and this information will certainly help.
Amy Agape - August 3, 2017 at 3:23 pm
Oh, Deborah, my heart aches at the thought of you being alone to deal with the death of your young son. I am committed to doing whatever I can to change our cultural concepts and approaches to illness, death, and grief. Thank you for your work in nursing and for your future work in hospice.
bishop peter - August 3, 2017 at 11:40 am
Very very moving … so apt … I need to un- learn … new insight gained … thank you
Amy Agape - August 3, 2017 at 3:24 pm
Thank you, Bishop Peter, for reading and commenting. I think we all need to un-learn and learn a new way together.
Sue Luppert - August 3, 2017 at 1:14 pm
Thank you for your words.
Amy Agape - August 3, 2017 at 3:24 pm
Thank you, Sue, for reading and connecting.
Carla Hartsell. - August 3, 2017 at 2:42 pm
Is this article copyrighted? I am on a hospice board of directors and would for our grief counselors to be able to share it.
Amy Agape - August 3, 2017 at 3:26 pm
Thank you, Carla, for reading and commenting. Yes, it is copyrighted, but please feel free to use it as you’d like. My work in the world is to educate others so that we can change our cultural approaches and attitudes toward death and grief. I ask only that you use my name (Amy Agape) and organization (The Way of Conscious Death). I’m honored by your request. Thank you for the work you do in hospice.
Dorothy Obengo - August 3, 2017 at 3:08 pm
Thank you Amy for this timely educative article about death and dying. I teach counselling and psychology courses, have given lectures on death and dying. However, this gives me a different perspective. Thank you. I also volunteer counselling at the Palliative Care department at Kijabe Hospital. Many times I sit by the bedside if those dying and feel like I should talk. Now I will be able to show more empathy by understandings and communicating that understanding back to them.
Amy Agape - August 3, 2017 at 3:27 pm
Thank you so much, Dorothy, for reading and commenting. Thank you also for your work in the world; I appreciate it greatly!
Tammie - August 3, 2017 at 7:25 pm
Thank you for sharing. I do find this helpful. My daddy passed away June 3 at home. He was 87 years young and wanted to die at home surrounded by his 4 kids and wife. He got his wish. The memory is still so vivid. He lifted his hands up after not moving for days and smiled towards the heavens. Although we were very thankful for hospice and appreciate of their constant support, my faith is what pulled me through it all.
Amy Agape - August 3, 2017 at 9:19 pm
Tammie, thank you so much for sharing your experience. I am so happy that your daddy got to have the death he wanted, and I am comforted that your faith was so instrumental in helping you through his dying. Blessings to you and your family.
Elle - August 3, 2017 at 8:10 pm
Thank you so much. We have begun the “long goodbye” of dementia with my mother. It is scary at times for her and for us. The gentle power in your thoughts will be saved, shared and reread as we try to help her however we can.
Amy Agape - August 3, 2017 at 9:21 pm
Oh, Elle, it is a long and intense journey you are on, I imagine. I am grateful that this piece touched you in some way. Peace and grace to you and your family and much comfort to your mother.
Judy - August 3, 2017 at 8:44 pm
This memory will bring tears. My husband and I have no children, but we did have a beautiful niece that I loved deeply. Nine years ago she was diagnosed with a glioblastoma and given only months to live. She lived for 18 months, astounding everyone. During this time, I spent a lot of time with her and her family – a loving husband and 2 young children. I was one of many caregivers to this wonderful woman.
About 2 months before she passed away I was with her, reading a Bible study chapter to her. I set down the book, looked at her, and told her that I loved her. My love for her was like a string that connected us regardless of where we were. And that I would always love her wherever she was and wherever I was.
I learned so many lessons while caring for her and dealing with her dying. I will miss her presence for the rest of my life. But I know I will see her again in Heaven.
Your words here are so very true. Thank you for expressing them in such a thoughtful manner
Amy Agape - August 3, 2017 at 9:23 pm
Judy, thank you so much for sharing this beautiful story. What a wonderful woman your niece was . . . and what a strong bond you share. I am so sorry that she died and so grateful for the lessons you learned while caring for her. You were a blessing to her, I know, just as she was to you.
Mary Alda - August 3, 2017 at 10:42 pm
When my husband died quickly from pancreatic cancer I found it astonishing how every day of his illness the space we inhabited became more and more sacred. He wanted nothing to enter our world that would detract from the sacred. It was a gift beyond words to see how committed he was to being truly present for his own death. In our 40 years together, he taught me so much about how to live and love and then he taught me how to die. My strength is in my gratitude.
Amy Agape - August 3, 2017 at 10:45 pm
Thank you so much for this profoundly beautiful share. You have allowed your husband to teach us; his wisdom and love flow ever outward in this way. Blessings to you and all who love him.
Claire Power - August 4, 2017 at 5:47 am
Thank you so much for writing and in doing so express so beautifully your
Journey and realisations around death and dying. It was good to read. My work involves being with those who have illness and from which death comes early, also sitting with people who are close to death helping them cross over with peace in their heart. Thank you for sharing how it is, much love to you.
Claire - August 4, 2017 at 6:03 am
Thank you so much for writing and in doing so express so beautifully your
Journey and realisations around death and dying. It was good to read. My work involves being with those who have illness and from which death comes early, also sitting with people who are close to death helping them cross over with peace in their heart. Thank you for sharing how it is, much love to you.
Amy Agape - August 4, 2017 at 7:13 pm
Claire, I really appreciate you reading for responding. And thank you so much for your work with the ill and dying. Much love back to you!
Amanda Ludwiszewski - August 4, 2017 at 6:30 am
As a cancer patient with little known about the type I am fighting, I have recently done the very thing you suggested. I spent time looking at and exploring the possibility that I might possibly die of this disease. I am only 52. I allowed myself to go through the thoughts and feelings of what that might entail. I allowed my belief system to enter into those thoughts AND feelings. I cried, I became curious, I projected how it might affect my loved ones. I was actually surprised how much BETTER I felt after that. And this was not a one day ordeal. I spent probably a week going through this stage. It caused me to REALLY look at the whole process. I was relieved to come out the other side realizing I am sincerely ok with the prospect of my own death.
I was a nurse until I was unable to work due to my treatment causing weakness that overwhelmed and stole my ability to work. That alone caused a process of grief I have had to go through. Thankfully I was able to come through that successfully with the help of a dear, painfully honest friend. More importantly though, while working as a nurse I gained that ability to sit “Shiva” while caring for dying patients. I would do my best to follow their lead in every aspect of their care. I felt I was successful most times. I also learned this is equally important for the family members. I look back and feel content with my career, even if I am unable to work again.
I have had tremendous support in my own journey, and pray this continues.
Amy Agape - August 4, 2017 at 7:16 pm
Amanda, thank you for sharing a bit of your journey here. I love that you have spent time exploring death and dying — it’s something I think we all need to do. And my work is to support others to do that and to help create a culture in which this time of personal work is the norm. I am sorry you had to stop your nursing work; and I am grateful for all the people you served. I also pray for your continued support — and for your comfort and peace. Blessings on your path, and please stay connected here if that feels good to you.
Maureen - August 4, 2017 at 7:37 am
You express your thoughts, beliefs, learning and understandings about death so beautifully. In 2014 I was dying from liver cancer and spent many hours thinking about and facing my death. I had tried to imagine being dead many times when I was younger because it scared me so much. But when It was actually happening I lost my fear and grew along the path to welcoming it. It seemed like a place of great peace and a preferable alternative to my current situation, just fading away.
One day, I was in hospital and close to the end of my energy, and I got a phone call from the Liver Transplant Unit to say they had a match for me and within 12 hours I had been flown 1200kms and was in surgery. I healed well and began recovering but It was really hard to learn to live again. I had come to such terms with dying that I had to re-learn to live again. Three years later I have changed many things in my life and am again living happily and usefully and have great peace in my heart knowing that death is just part of our life cycle. Just because it is unknown we don’t need to fear it.
I was privileged to be with my mum as she left this world only two weeks after I returned to my home town and I believe she understood the peace of death and was able to let go and pass over peacefully.
Talking about death could make it less frightening and hopefully reinforce the importance of taking the opportunities we are given to make the most of the lives we have.
Amy Agape - August 4, 2017 at 7:19 pm
Oh, Maureen, what a beautiful story; I appreciate you sharing it here. Like you, the first time I was dying (there have been three so far) I found myself quite at peace. . . and then when I was no longer dying I found that to be a challenge. Weaving together living and dying has been my work for the last seventeen years. I’m so glad you were able to be with your mother as she died. I agree with you — talking about death is necessary in order to make it less frightening. Thank you so much for doing your part in that!
Cathie Bishop - August 4, 2017 at 12:22 pm
Thank you for your timely gift, sharing your wisdom. I am a pastor. On Monday one of my members learned that after going through chemo, the doctors would not do surgery. It is complex. Bottom line, she has held on to the hope of surgery and being able to live. Instead, I need to walk with her as she dies.
Amy Agape - August 4, 2017 at 7:20 pm
Cathie, thank you for reading and replying. I’m glad this resonates with you. Thank you for the work you do. I will be praying for both you and your parishioner as you accompany her on this journey.
Penny Docker - August 5, 2017 at 2:39 am
Thank you all for sharing such intimate & real experiences. Important lessons for us all. Yes, in our culture, we do need to accept & to talk about finality,
certainly, before we cannot. A lot of us have had, or, will
have the experience caring for an aged parent! Your words are cogent & need to be endorsed. Important
for meaningful relationships, especially, in families wher
caregiving becomes a priority. We need to share & support!! In my experience, there was withdrawal & escape!! Blessings…
Amy Agape - August 5, 2017 at 4:01 am
Penny, thank you so much for your comments. I agree entirely — this is an area for continued sharing and support. I appreciate your role in that.
Mags King - August 5, 2017 at 5:33 am
A beautiful and informative piece. So much hit home in some part of my journey and that of my beloved family &friends.
My mother was my first close encounter. She and I had been estranged for several years. I finally “forgave” her, so her diagnosis of pancreatic cancer found us as a loving, mature mom and daughter. And I am so happy we didn’t wait til then to be loving. She was very strong, my petite, fine boned mother. I underestimated her. She gave me some few final pearls of wisdom: take good care of your gums-lol, a woman MUST always have her own money and that the 3 of us kids vowed to take care of one another. We let her direct her time. We played Monopoly til 3 am….she felt good, a gift. I fed her coffee ice cream, silent, but looking each other in the eyes, love shining, smiles at simple joys. Helping her to the toilet “one more time” and her dignity even in that undignified moment. 2 days before passing, I was on duty, in the den, late. I went to check on her. The pain on her face was brutal. I gave her the good stuff. And sat by her. She was so small. I asked, “mom, could I lie down with you?”…..ppl are afraid to touch, when I think they need touch so much. I gently laid down and spooned with mom….quiet, she squeezed my hand, I listened to her breathing til she fell asleep. It was the most intimate moment. And all that should be told passed between us that night, without a word. She passed the next evening.
In all the tragedies, my husband, 9 yo daughter barely survived Katrina and our town ground zero, many ppl we knew died, loss of 2 brothers and my dad in 18 months following….enough grief to fill the oceans, ppl who went thru Katrina too, knew. We hugged a stranger in line because we could see them crumbling. We never said, “oh you’re so strong”, ” what doesn’t kill you blah blah” otr “God won’t blah blah”…lol…I have sat in an abyss of grief, one breathe at a time. We learned how to look after each other, whole towns. We would see a man workimg on his destroyed home, stop and help, drink cold water, hear his story …or not. Actions, respect, sensitivity to others, a smile, a touch, a bag of groceries, wind chimes, a sunset….sharing moments, most of all sharing the rough spots…. it is a gift for us, the living…..thanks for the nmemories.
Amy Agape - August 5, 2017 at 12:07 pm
Mags, the story of your mother is so precious; thank you for sharing the intimacy of it. I am so glad that she had you and that you had her! So many losses; yes, “an abyss of grief”, as you say. “Sharing the rough spots” is the most honored of blessings, when we choose to go into those wildernesses alongside our fellow humans. I appreciate you for all the times you have done it. May all beings be blessed by our willingness to do just that.
Bernie Folan - August 7, 2017 at 4:12 am
Mags kings. This is one of the most beautiful things I have ever read. Thank you for it.
Mary Sue McCullough - August 5, 2017 at 6:12 am
I have a dear friend of 65 years who has Alzheimers. She is experiencing a slow, agonizing death. I visit her in the nursing home 2-3 times a week. She had been very active in the community and had many friends. The heartbreaking thing is that she rarely has any other visitors. She expresses her anger and frustrations with this horrible disease and I listen. I think many people are uncomfortable and feel like they have to try to make things better. I just agree that the whole thing sucks. Sometimes she smiles when I say that.
Amy Agape - August 5, 2017 at 12:11 pm
Mary Sue, I am so grateful that your friend has you during this nearly unbearable time . . . and so saddened that she rarely has any other visitors. I feel that our isolation of people enduring these situations hurts not only them but us as well — as a collective. I chuckled when I read that you “just agree that the whole thing sucks”; when my kiddos were little, I learned that that was really the best way to support them (and all other people) — to be present and reflect what they are experiencing, without any need to change it. May your friend be blessed with comfort and ease and you with peace as you walk beside her.
Basya - August 5, 2017 at 6:57 pm
Thank you writing this I am so glad to see it on FaceBook. Terminal illnesses, and deaths amp everything way up. People who come into the force field ironically become more of who they actually are. I wonder if we could talk sometime? I am an oral historian and for many years in between the one hundred oral histories I’ve produced, i have been writing an interview-based book about some of the things you expressed so well. Can we talk? I hope to hear from you. Thanks for everything..
Amy Agape - August 6, 2017 at 12:29 am
Thank you so much for commenting — and for the work you do. I’m happy to talk with you. Please email me at email@example.com
Dory Logan - August 6, 2017 at 9:32 pm
My son died 18months ago. He was 49 years old and had an aggressive cancer. He chose to die at home, in a ground floor room leading on to the kitchen. His wife, grown-up children and young grandchildren were around most of the time. Asleep, sedated most of the time, he also had periods when he wanted to communicate. He was able to say something special and to hug family members before he sank into a largely unconscious state. I live abroad, but was able to be with him for his last six days. This being my first experience of death, I felt paralysed by grief. I wanted to offer comfort and love, but was totally immobilised most of the time. I simply sat with him. He knew I was there, I think. Reading your article, I draw comfort from the advice to sit quietly with the dying. Maybe my presence was useful after all.
Amy Agape - August 7, 2017 at 12:11 pm
Dory, I am so sorry that your son died. And it sounds like there was great beauty and love during his final days. It is my belief that he absolutely knew you there. And I know without a doubt that your presence was useful — IS useful. Indeed, I think our presence is the most supportive, most loving thing we can ever offer one another. Thank you so much for sharing here.
Anne - August 7, 2017 at 12:37 am
Thanks for this article and the wisdom contained therein. I find that as a culture we are often u comfortable with death and dying. My Mum ended her long journey with dementia nearly a year ago, and as I and other family members kept vigil by her bedside, I found myself bristling as my siblings struggled to keep silent for any length of time. Mum had been non-verbal for a number of years, and bed ridden for 2, so any cues we were going to get were going to be of another kind. I was also worried that the peace and quiet she had previously enjoyed was taken away from her, probably at the time she needed it most. It was impossible for some to just sit and be quiet, and one day if the 6 she was in active palliation i had to find ways of mindfully dealing with my anger at the level of noise in her room. It felt like a circus, and I struggled with that. I tried to respectfully make my feelings known but that didn’t help that much, only made people cross with me, till in the end I went home for the night in order to reduce the tension in her room. I realised my family struggle with stillness and silence, and this has informed my thinking when I make an advanced care plan for my own (hopefully not imminent) death.
Amy Agape - August 7, 2017 at 12:08 pm
Anne, I’m so sorry that your family had to go on that journey through dementia; it can be long and nearly unbearable at times. And there can also be great beauty and wisdom on the journey. It sounds like you experienced deepening awareness and intimacy with yourself through her dying, and I am so grateful to you for sharing a bit of that with us here.
Amy - August 7, 2017 at 4:15 am
I am 36 and was recently diagnosed with stage 4 metastatic breast cancer in my brain. I had emergency brain surgery 3 weeks after I was on my way to my very special home town. I am now six weeks post op and have started radiation and will start chemo for the second time (first time was for my initial breast cancer diagnosis in spring of 2016) in mid September. There is no cure for stage 4 breast cancer just treatments until your time comes to an end. My family and friends keep telling me to keep up the fight and that I will kick cancers ass-they just don’t understand. There is no end to treatment for me, I have accepted that I will eventually die from this and I am at peace with that. I also know I will not give up living until that time comes. Your words are so true, I wish we could teach this in our schools, religious programs. So many people say such useless things, it’s not their fault-I know that. I have never lied to my children and they speak to me more honestly than anyone else. They are 3 and 6 my biggest fear about dying is leaving them without a mother. God help us all who are facing death head on.
Amy Agape - August 7, 2017 at 12:04 pm
Oh, Amy, I am so sorry about your diagnosis. I am so sorry you have to leave your kids; I have also found that to be the most challenging part of my dying. I hope that you have someone close who can really be present with you. Our culture’s insistence on “fighting” can be really strong, and often it is not helpful for those of us on a death journey. Please keep in touch here, if that feels supportive to you. Blessings to you for peace and comfort.
Amy - August 7, 2017 at 4:40 am
Thank you for writing this. My mother, Susan, passed from pancreatic cancer in 2002. I was blessed to be able to be with her the last year of her life. Without knowing, or even meaning to, I sat shiva with her. I always questioned if I should have done more, tried harder, but this article confirms what I felt at the time. It was as if there was no room or need for anything that wasn’t authentic. That being there was enough.
Not that we didn’t converse, or spend time with relatives. But when she was quite, I was quite, but there with her. There was quite a bit of time like this toward the end. My hope to this day has been that I was able to give her what she needed in those moments. Now I feel that perhaps I did, and that she gained some peace and love from our time.
Amy Agape - August 7, 2017 at 12:00 pm
Amy, thank you so much for sharing a bit of your story with us. I am so sorry that your mom died, and I am comforted to know that she had you. I believe that your presence and love were more supportive to her than I can even communicate with words. You were blessed to have one another. “No room or need for anything that isn’t authentic” — I’ve found that to be absolutely true during our death walks. Indeed, I think it may always be true, we just do not connect with it at other times. You comment is a beautiful reminder to do just that.
Tenaya Asan - August 7, 2017 at 4:57 am
Beautiful article my friend. We are all so blessed to have someone like you who can speak for those who desperately need to be spoken for (which of course is all of us). Thank you.
Amy Agape - August 7, 2017 at 11:57 am
Thank you, Tenaya! I am so grateful to have you in my life, to have you to sit and be quiet with me — and for me to sit and be quiet with you.
Alex Channon - August 7, 2017 at 9:01 am
Dear Amy, that was a lovely and informative read. I guess I’m lucky. 3 years ago I had open heart surgery following a massive heart attack. Apparently I was not expected to survive the first 24 hours after the heart failure but I did. Surgery took place some 24 hours after the heart failure episode and they ‘lost’ me a couple of times on the table. Went into a coma for 8 days and knew nothing about my heart attack until some short time after waking up. Some months later the surgeon who performed the operation told me I was “one of the few amongst hundreds who survived my condition” he added “I did not expect you to survive after the operation” which apparently took 5 hours. I say I’m lucky cos family and friends kept up a constant vigil and visited me regularly during the following 6 week hospitalisation. They spoke to me openly. For myself having that very close and unexpected brush with death I now have absolutely no fear of dying, perhaps a fear of the pain or possible suffering leading up to death but no fear of death itself. Like I said, I guess I’m lucky. Thank you for the article.
Amy Agape - August 7, 2017 at 11:56 am
Thank you, Alex. It sure does sound like you have been blessed — with wonderful doctors, with healing on so many levels, with an incredibly strong and helpful support system, and with insights with which you then bless others, like us. I appreciate you sharing your story and am so glad you are still here to keep sharing!
Zoe Kharpertian - August 8, 2017 at 2:12 am
Thank you, Amy. I had the privilege of being able to spend the last 2 1/2 months of my daughter’s life with her, in a wonderful hospice. She died last summer at the age of 31 of metastatic breast cancer. I often felt rootless and confused, unsure of how to best support her and contain my own grief so as not to burden her with it. I was far from successful, but reading your article I realized that many times I seem to have done the right thing. I asked her a few days before she died if she was afraid, and the brief gentle talk we had — she was not, only annoyed her opportunities had been caught short — was a time of special intimacy, the memory of which I cherish deeply. I love the Jewish blessing, “Be comforted among the mourners.” Community, and love, are the true healers of our pain.
Amy Agape - August 8, 2017 at 12:44 pm
Zoe, I am so sorry that your daughter died. And I am happy that she had you with her and had a wonderful hospice. I also love that blessing. Yes, community and love are true healers. It is my deepest prayer that each of us finds and creates more of both of those as we walk this path of being human. I am touched deeply by your story; thank you.
Nancy Long - August 8, 2017 at 4:04 am
I’ve been thinking about the process of dying for some time. I’m turning 70 in November & know I am in the “final act” of this play. I want to learn more about dying. I think I’d like to volunteer in a hospice program. Study to be a death doula or something. I’m not sure how to find my way, but I am open to opportunities. I meditate daily and treasure the sitting, the silence, the just being. Thank you for this article. It has touched my deeply.
Amy Agape - August 8, 2017 at 12:42 pm
Nancy, thank you so much for reading and commenting. I’m glad the article touched you. And I am so grateful that you are contemplating work in end of life care. Your openness and willingness to learn are beautiful gifts that radiate ever outward.
Simone - August 8, 2017 at 6:10 am
Thankyou for this beautiful and thoughtfully written piece, Amy. It’s very timely for me to have read this at this point, as one of my close friends is terminally ill and I am spending time with her in her last days.
I’ve just completed a Cruse training and hoping to be a bereavement support volunteer- my training and writings like yours are helping me learn to be better at ‘being there’ for others in these, their most difficult of times.
This role isn’t and hasn’t always been easy for me.
I remember a time, many years ago when I crossed over to the other side of the road and ignored a friend whose father had just died as I didn’t know what to say to her. I’ve also been the person to say something like ‘you must be a strong person to have been given this challenge’ to a friend whose partner had just been diagnosed with brain damage. It hurts me deeply to think of the pain I probably inflicted on these friends. I don’t want to be that person any more.
Being able to be there for others isn’t something we are automatically born with. Perhaps we might be lucky enough to have been born to a family of thoughtful and kind people who can be role models for us. Or, as I am doing, we can look elsewhere and find others, like yourself, who can help teach us.
And, of course, our best teachers, as you point out, are people like my beautiful friend who is on her last adventure in life.
Amy Agape - August 8, 2017 at 12:40 pm
Simone, I am so sorry your friend is dying. And I am so glad you are there for one another through “her last adventure in life” (what a beautiful phrase!). I think we have all done exactly what you have — avoided others at times and repeated thoughtless phrases, all in response to our discomfort about illness, death, and dying. As we each learn and grow more, may we become more aware of ways to support one another. Blessings to you and your friend
Pamela - August 10, 2017 at 1:44 pm
I think that extreme fear caused me to be unsupportive and I lost a host of opportunities with my mother and grandmother as they approached the end of their lives, my grandmother from heart disease and my mother from small-cell lung cancer. I continue to be puzzled by how openly and easily I could talk to others about the “fact” that each was dying, but could not deal with the “reality” of their impending deaths. My brain (and heart) couldn’t process that I was really going to be without them or that they couldn’t really have terminal conditions. Time I could have spent just sitting with them was lost because I thought they needed to “conserve their strength” and not be disturbed. I don’t blame myself for not knowing what I just didn’t know, but the loss of special moments I could have shared with them will always be a regret.
I thank you for “schooling me” on how isolating it is to stay away from people at a time when they could use your love and support more than ever. Now that I have expressed an unpleasant truth about myself, I feel better able to sit and listen, talk, cry, or whatever else the person needs without the terrifying feeling that I need to run for the hills.
Amy Agape - August 10, 2017 at 1:53 pm
Pamela, thank you so much for your honest, vulnerable sharing. I think we all likely have regrets about things we have said or not said, done or not done when those close to us have been in pain. We each need to learn our own ways of being supportive, and this often is done through making mistakes and carefully considering them afterward. I am sure that you brought much love and many blessings into the lives of both your mother and your grandmother. And you bless us here with your transparency; I truly appreciate that.