I’ve been journaling daily about the journey of helping my mother through the rebirth we call death. Although these moments are intensely intimate and personal, I am sharing them publicly (with the permission of my mother, who before she stopped communicating clearly, told me “If it helps others, use anything about my story, my illness, and my death in your blog, in your books. If I’m going to leave this planet, at least let my life and my death live on through the hearts of those who might learn from it.”). Mom even said, “Maybe I’m dying so you can learn how to help others fall sick and die with trust in God.” The other day, she said, “I have a synapse to God. You have a synapse to me. We can bring others along with us.”

Many who are following this journey on Facebook have said, “There are so many who are about to experience this journey with loved ones, who might benefit by your sharing.” I know that losing a loved one is a private, deep experience of the most intimate heart, but it is also a universal human experience. So I share this process with you all, in case it helps you deal with your own grief, your own illness, your own journey through the death of a loved one, or your own fall into grace. It comforts me to trust that such deep, universal human experiences blow open the heart, if we can simply stay present with the full adventure.

10/25/17

My daughter Siena and her father Matt left my dying mother’s bedside this morning so Siena could get back to school and life. Last night, as she was going to bed, Siena shared with me the “Nana Mojo Grief Tips” that Mom shared with her before she stopped being able to communicate. The first in a long list of “How to Gikuyrieve” advice was that she wanted Siena to give herself permission to feel good, that grief comes in waves of sadness, but that between the waves, we’re allowed to be happy, to do fun things, to feel good. Siena took that to heart. She has been such a trooper, staying in the intensity of the grief, being so present with her Nana, crying, laughing, feeling instead of running away from the intense emotions. And then laughing, playing, gathering fall leaves with me last night on our walk to create an art project with the bounty of autumn color.

I have watched in awe as my daughter has spent hour after hour, sitting—undistracted—beside her Nana in patient silence, just watching her beloved grandmother’s raspy breath. Few adults have the resilience and strength to do what my 11-year-old is doing. She will be quick to heal because she is not fighting what life is offering to her and she has no barrier to the love that is all around her, now and always.

I will miss having Siena here as we wait for my mother to transition. My little Buddha goddess has been a breath of fresh life as we usher another life out. In her last moments, she asked to be alone with her Nana. From behind the door, I could hear her whispering her last love stories to the grandmother she adores and weeping her grief into her Nana’s cheek. I can’t remember crying that hard in my whole life. When she felt complete, Matt and I held each other and opened our arms to her, the three of us still family, resting in each others embrace.

After Siena left, I opened my mother’s closet to get a sweater, and I was struck, as if with a thousand bricks, with the horror of seeing a closet full of Christmas boxes and realizing that my mother would not be around to distribute the hundreds of Christmas gifts she insists on buying every year. (The purchases usually made six months to a year ahead of time!) I sorted through a box of things I’m sure she intended to put in my stocking, as she has done for 48 years. This will be the first year of my life that my mother doesn’t stuff my stocking. It sounds so trivial to my mind as I write this. Such a small thing, the discovery of the stocking stuffers, and yet, if you knew my mother, you would understand that such things were not trivial to my mother. Her love language is gifts. It frustrated her that she raised a family of minimalists.

This is what grief does, I suppose. You walk around, just living your life as if everything is normal, drinking your coffee, tending to the dishes, answering emails, and then you stumble upon something that humbles you to your knees. And you breathe. And you surrender to the emotion as you breathe. And you beg for mercy from what feels like unbearable pain, and yet you know you can’t skip it. You know the only way to get to the other side is to go all the way through it without bypassing one bit.

And then, just as a labor contraction passes and you feel relief when you’re giving birth, the grief passes, and the sun comes out, and there is love all around, and you find gratitude in everything that’s still here. Unspeakable joy is only one or two breaths away from the agony of loss.

A sign on my father’s memorial in my mother’s home says, “Don’t cry because it’s over. Smile because it happened.” I say—go ahead. Do both. Cry because it’s over. Smile because it happened. Hold the tension of the paradox and open your heart to how deep being human can go if you let it.

10/26/17

Last night, I curled up in blankets and looked at the stars over the lake at my mother’s home. I remember my mother teaching me about all the constellations when I was a little girl—and how excited she was to show me the Southern Cross this past April when we were in Africa on safari together as her “bucket list” trip after her terminal cancer diagnosis. Mom and I were alone with our safari guide in the Land Rover, all curled up in the freezing cold under heavy wool blankets. Our guide turned off all the lights so we could gaze at the most magnificent African sky—an enormous show of shooting stars and constellations I don’t recognize, set to the soundtrack of African bush animals.

This time, Mom is sleeping in the bed where she will die in her home and I was on the deck, feeling a jumble of emotions—gratitude, grief, joy, relief, tenderness, impatience, love, sadness. It brings to mind Rumi’s poem “The Guest House.”

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

As an unexpected visitor.

Welcome and entertain them all!

Even if they’re a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice,

meet them at the door laughing,

and invite them in.

Be grateful for whoever comes,

because each has been sent

as a guide from beyond.

10/27/17

As a doctor, I have attended many deaths, and as a woman, I have been with about a dozen people who were dying outside of my work. Sometimes, as when my father passed, it is a peaceful, transcendent place. The death process itself is a holy meditation for those who witness it. This is not so much the experience I’m having with my precious mother. The between worlds place my mother is inhabiting isn’t so rose-colored these days. When the inevitable time comes to lose a parent, we pray it will be quick and easy, a time of angels and tunnels of light, of professions of undying love, a time of transcendence. But it isn’t always that smooth.

There is deep love at my mother’s bedside. There is humor, as when my mother, eyes still closed, did a glorious fist bump after my aunt told her that my adorably messy sister, who lives with my mother, finally cleaned her bedroom. There is a lot of music. We spend most of the day singing to my mother, and she still sings along with us when she can. I think I sang the entire John Denver repertoire to her yesterday. “Annie’s Song” made her smile the most.

But I don’t want to sugar coat what is happening here at my mother’s bedside either. There are agonizing moments, moments I can’t un-see, moments that haunt me when I close my eyes to go to sleep, wondering if she will still be with us when I awaken. Last night, my beautiful mother put her hands to her face, like a child playing hide and seek. “Are you in pain?” I asked. She shook her head. Then clear as a bell, she said, “I’m really hating this.”

Tears. Helplessness. I feel so impotent. I want to make it better, but there are only so many John Denver songs.

My mother Trish thinks there are bugs biting her. At one point, she said, “We’re infested with mice.” I told her that could never happen because she’s the Trishinator. (We always joked that no bug or rodent could possibly survive her presence because she’s always bombing the house with all kinds of scary poisons intended to get rid of everything but humans!)

Mom is busy in her mind, making “to do” lists, asking me what the schedule is. When I asked her if she’s excited to go to heaven, she nodded, but then she added, “I’m anxious.” Hospice added some medication to help calm her nerves and settle the hallucinations that often accompany end of life. I succumb to their guidance, but like my mother, “I really hate this.” I think we overmedicate everything painful. I’m fine with optimizing Mom’s pain medication, but I hate tranquilizing my mother in her last moments. I want her to be fully present for what is about to happen, but then, this is not about me. This is my mother’s journey, and of course, I would never want her to suffer needlessly.

I told my 79-year-old mentor Rachel, who is also a physician, that I’m having a really hard time staying present with all this, that I have a strong (though I’m aware it’s also pathologic) impulse to make it better, to ease her suffering, to DO something. I’ve spent 10 years in therapy interrupting my “Savior Complex,” so this feels like the ultimate pattern interrupt. I cannot save the woman I would most want to save. In fact, any attempt to do so dishonors her and disrespects her autonomous journey. But jeez, this is an intense initiation.

The death watch is brutal. Unlike a birth, which has a due date and a past due date, there is no due date on death. The waiting—breath by precious breath—is part of the journey. Rachel said, “Alas the “due date” here is shrouded in mystery but no one dies on the wrong due date no matter how it appears to us. I believe that everything that happens in this period has deep meaning and value and is a profound learning in response to the events and conditions and beliefs of this lifetime or, even more likely, a learning related to a previous lifetime. I often wonder if the events of someone’s death are even a service to others and final teaching transmitted to others in unforgettable terms. My own mother said that people die only when they are complete. We may never understand that completion, but it is profound, no matter how it looks to us. It is very very hard to watch but it does not need to be “fixed.” Our way of death of all things is not meaningless any more than our way of birth. As painful as it seems, it is in all probability a gift/teaching to carry forward to a better lifetime. Hard to be a doc at such times, isn’t it? And even harder to be a daughter. I have really come to believe that control may not be the ultimate offering here, but your love and your trust of the unknown probably is. As long as she is not in pain or alone, all is well dear Lissa.”

Rachel’s words comfort me. My opportunity here is to simply be present with my mother, to resist the impulse to distract myself from what is so hard to witness and feel fully, to find meaning and joy in the moments of deep connection, to bask in the plane of love that washes over me every few moments and fills me with light and gratitude. Rachel says my love and my trust in the unknown may be the ultimate gift I can give my mother. This I can give. I trust the Great Mystery. I do. I never doubt it, not even on my darkest nights. Divine Beloved, this journey is yours. May whatever is aligned with Your will come to pass.

Love,

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7 Comments

  1. Charles Ballard

    Your honesty is connective, your presence is courageous, your descriptions accurate. I have been honored to walk with several folks as they died (including my Mom and mother in-law), and control always arises as we struggle to stay and need to go. I used to be surprised by death, now I am only surprised by my own stories of “how it’s supposed to be”, surprised and relieved, I’m such a human!! The gift has always been how difficult and glorious at the same time, that’s the unspoken, because we tend to only feel the sadness, yet there has always been joy regardless of the circumstances. Thanks for the continuing story, be well, be happy, be peaceful. Catie B.

    Reply
  2. Paulette Dahl

    The words you share about your journey of loving your mother past death is so poignant and profound!
    This is one of my Love Letters and I wrote it before my dad transitioned. I share it with you to offer Love and courage as you embrace both unbearable pain and intense gratitude and joy!
    Thank you for all that you are and do in this world that needs such healing!
    Sending cyber-hugs and soooo much Love to you!

    Dear Freedom Fighter,
    You straddle between two worlds…the one of your fragile body and soon-to-be-expired earth life and the one that beckons your spirit to final freedom from exile.
    Short spurts of consciousness pulls you awake and you see the faces of concerned loved ones who are not ready to let you go.
    You smile one more tired smile, their trusting love keeping you anchored inside this shell that has become too small to contain you.
    Then quickly, your eyes focus on the angels and thoughts that surround you. Long-dead loved ones who grant you three wishes if you linger with them awhile longer.
    What is real and not real anymore? Did it seem this arduous when you made your grand entrance into this over-bright world of the senses?
    Do you know how much you will be missed when your body has said ‘good-bye’?
    How much we hang on to that with which we are familiar because of the comfort that it brings.
    Your cold hand is warmed by a loved one’s clasp. Your breathing comes in rasps. You are tired and worn from trying to hold on.
    Yet it is the love within you that responds to those whose tears are left to dry on faces of the stranded when you go.
    Love wraps them in its mantle, a love that feels deeply within their Selves…the love we share in common. The love that never dies, even though we’re tempted to believe it leaves too.
    You want to tell the dearly beloveds who are gathered around your memory that .you still live. Just in a different form. In a different place that cannot be seen with clouded perceptions and fearful lack.
    How do you shake them from their fixed positions? How do you love them past their error?
    You gaze on them in love…past their frail limitations. And it is they for whom you are sorry. Not the other way around.
    You did the best you could with this life on earth.
    You did the best you could with this life on.
    You did the best you could with this life.
    You did the best you could with…
    You did the best you could.
    You did the best.
    You did the…
    You did.
    You.
    Taking that last laboured breath…your soul transitions.
    All those left behind tend to your remains.
    To pick up the pieces of their fractured lives.
    To remember you and why they are here.
    To cry their tears, sing their songs. And hug each other. And so Love renews.
    For that is the cycle of Life on this plane. We are born. We are tested. We are loved and loving. We are broken open when we die.
    And perhaps ‘die’ is too harsh a word to describe this process of transformation.
    It has such a ring of finality about it. And it is furthest from the Truth.
    We are stepping into greater greatness as we emerge from this cocoon. It is not for the faint of heart. That is where the courage comes in.
    Your cells may be completed. But your energy bursts forth. Radiant. Star-studded skies at night. Rainbow skies at sunrise.
    Butterflies and dragon flies and hummingbirds soft-flutter to remind us of our earthly departed loved ones who still grace our world in thought, love, freedom dance.
    Dying is not for the dead. It is a rite of passage only for the living.
    And all souls are alive! Always, always, alive.
    Love knows no bounds.
    In full freedom,
    Love.

    Reply
  3. Elaine Segedy

    Thank you so much for sharing this, dear Lissa. As I am sitting here reading this, I just now got the call that one of my dear friends has just passed. The timing is incredible! Thank you immensely – your words inspire!!! Elaine

    Reply
  4. Diana

    Your story has brought me some comfort. My mother had a similar extended death which left me with many haunting images and some guilt over whether I could have done a better job of helping her transition. Managing a dying body and mind is complex, because we really don’t know what is going on inside, plus we are dealing with our own feelings. As I drove home right after she passed away, I asked her to forgive me if there was anything I should have done better, but then I realized that she probably worried that she’d made so many mistakes as a parent. I told her I forgive you if you forgive me. We just did the best we could to love each other and care for each other.

    Reply
  5. wendy danielle

    You have such a beautiful way of looking at things. My Mom died August of last year on her 93rd birthday after a 13 year battle with Alzheimers during which My sister and I lived with and cared for her. I am recovering and grieving still, even though I knew she really needed to go. Your story is helping me to realize what I am feeling and going through is OK and I can allow myself to feel what I feel in all its complexity and beauty. Thank you Lissa, and blessings and hugs to you and your family.

    Reply
  6. Bregje

    I went through a similar experience when my mother passed.
    Struggling with the same things: it wasn’t beautiful.( and yet it was). It was hard and ugly at times. Unbearable and yet you must go through it.
    Watching her breath get heavier as you describe so well.
    Wanting to let go and yet being so afraid of the emptiness after.

    I’m so sorry for your loss and pray for you and your family.

    Reply
  7. TIna

    As I tear up and remember my parents’ deaths through you I’m grateful for your beautiful words. Bless you Lissa.

    Reply

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