Helping Joanie Die

Miss Joanie with Little Doctor Vincent on her lap during a visit to my house a few years ago. Both of them are gone now.

Miss Joanie with Little Doctor Vincent on her lap during a visit to my house years ago. Both of them are gone now.

January was a hard month for me. A lot of things overlapped, most of them quite challenging. The most challenging was helping Joanie die. Miss Joanie to me, and to most who know her now. Once, she was Joanie D, married, living in Florida with a sailboat, traveling the world with her second husband. Before that she was Joanie G, young and in love, marrying, giving birth to three sons, raising them. Before that she was Joanie someone else, her maiden name. 

Joanie in high school was a cheerleader, and she had incredible legs until she died. I saw them the night before she died, stretched out straight on the bed, her still shapely calves in their loose skin pressing a line of shadow against each shinbone. Miss Joanie used to sit outside in her wheelchair on summer days in shorts, tanning those beautiful legs. All us girls admired them. That, and they, her legs, pleased her, but she was never vain. We laughed with her about our envy of her great legs and she laughed with us, with never a smirk or hint of vanity. And before she was a cheerleader, she was a little girl growing up in the 1930s.

She was my neighbor and my friend for more than four years, and I was her Hospice volunteer for almost three. We played cards a lot until her vision deteriorated too far. For a couple of years I took Miss Joanie to church, until my back prevented me from transferring her in and out of the car. Her son picked up where I left off there; she made a couple of good friends at church, and by the end, one of them told me, people vied to hold her hands in the circle that closed each service.

While I was taking her to church, I watched a lot of well-meaning parishioners come close to talk cheerfully to her, too loudly, too slowly. At first I explained to them that she could hear them just fine, and understood everything they said but couldn’t articulate a response very well. Only a few of them would sit with us at fellowship after the service, drinking coffee and eating an often random combination of food, like brownies, leftover St. Patrick’s Day cake, cookies, fruit cocktail, and cheese and crackers. Joanie loved the coffee and snacks, though she took too-big bites, crumbled the cake everywhere, and drooled. Miss Joanie had PSP, Progressive Supranuclear Palsy, the rare brain disease that also killed my mother.

In summer we’d go for drives up into the high country to enjoy the wildflowers, or out along the Black Canyon in autumn to admire golden aspens and red oaks. Eventually all we did was go for drives; her caregiver Ilene would settle her into the car and I’d take her out for a few hours, then bring her home. We’d drive to Hotchkiss or Paonia, stopping to photograph an eagle or some blooming cactus, a stack of old irrigation wheels glinting in the sun or a tangled deer carcass. In town she’d get a chocolate shake and I’d get vanilla, and we’d take an hour or two to drive back home, sometimes exploring up a side road like Minnesota Creek or taking the dirt road up over Scenic Mesa and winding down across the Smith Fork Canyon and back up on that tiny track clinging to the pink cliffs.

We didn’t talk much. It kept getting harder for her to speak and for me to hear and understand her. But we communicated plenty. Every now and then she’d get out a perfectly comprehensible sentence or two: How are your bees? She was fascinated by that endeavor, and so supportive of whatever I was doing in the garden, for work, travels. But when I’d ask how she was feeling, she often lost her voice. Sometimes she answered clearly: I’m afraid I’m going blind, or I don’t seem to be getting any better. And near the end, My spirit feels like it’s leaving my body.

“Are you afraid of dying?” I asked her then. It’s so final, she answered. And then her voice disappeared into a whisper so thin you couldn’t hear it, and finally just a breath.

From the beginning I had promised her I would be with her at the end. During her last month I visited almost every day. One day I asked if she’d like me to read from the book I wrote about my mother’s experience with PSP, and it was as though she’d been waiting years for me to ask. It isn’t a happy book, but I read pieces I thought might help her understand what was happening to her and come to terms with her inevitable death. The next few days, on a lighter note, I read from the rough draft of The Colonel’s Daughter, and after that stories, essays, poems.

“Do you want me to read some more?” I’d ask, and she’d answer with a long, guttural yes. In her last few weeks, we’d sit cuddled on the couch, my arm around her, sometimes reading, sometimes just sitting. When I arrived she would greet me with a searching look from her blind eyes; I’d bend close to tell her hello and she’d touch my face gently, reach for my hair, run her fingers through it.

Her last week, on Monday, I told her stories about things we had done together, remembering all the drives we had taken, wildlife we’d seen, adventures we’d shared. Her eyes were glazed and cloudy, her body stiff and still. She reached her left hand up and out into the room, and leaned forward on the couch.

“Do you see someone?” I asked. She turned to me, curled into me, wrapped her arm around my waist and plucked at the fleece blanket beside me. I covered her and held her. She curled tighter against me, her head on my chest, our arms around each other. We sat that way a long time, until she was ready to go lie down. Ilene tucked her in and I kissed her goodbye.

She got up the next morning and sat for a few hours, though by the time I arrived she was half asleep in her bed. She held my hand tightly as I sat beside her and talked softly. In the next few days, her friends came to sit with her, hold vigil, help her out, say goodbye. On Wednesday, the night of my birthday, I called her friend Millie to let her know it would be soon, and she showed up with a borrowed hymnal, from which we sang together. I kissed her goodbye again and she pressed her lips hard against mine.

The next morning I walked in the house and heard a number of voices singing “Over the Rainbow” back in her bedroom. Marla, Millie, Ilene, the singing Hospice nurse, and Miss Joanie’s son had been singing what they could remember of some favorite songs. From then on she was rarely alone. Between her son, her caregivers, her friends, and Hospice, she was attended by loving presence, comforting her through spells of agitation and anguish, singing softly, reassuring her, encouraging her on her next big adventure.

I’m not sure she believed in “the next big adventure,” and I think she was scared. Letting go was hard. For two days she remained apparently unconscious as we sat and talked around her. Her breathing changed, and changed again. It was short and easy, it was deep and labored, it paused for ten seconds at a time then resumed in gasps. We all thought it would stop any minute.

Her two sons who live out of state called again, and she opened her eyes and smiled to hear them; she also cried. She had a rough couple of nights. On Saturday night when I came, her eyes were open and anguished. She did not move, but I could feel her acknowledge my arrival. The others left for a dinner break.

She lay in a beautiful teal satin nightgown with a lace collar and cuffs, those hands that had touched my hair so delicately a few days before now still and fragile, a tiny figure in her sheets. Her half-open eyes looked toward me, her brows pinching and wrinkling as if she were trying to say something. I picked up Millie’s hymnal and began to softly sing Christmas carols. I sang for almost an hour. Her breathing calmed, her eyes eased shut. When my voice dried up I just sat with my hand resting lightly on her arm, sending quiet love, murmuring now and then how brave she was, what a good job she was doing, what a good life she had lived, that it was okay to let go.

The dog barked. Her eyes popped open. Her son came in the room. He wanted to be alone with her. There were also other reasons I had to leave, the overlap of other challenges. It was the hardest goodbye. I had hoped to slip away while she was asleep. I had promised I’d be with her at the end, and I felt she wanted me to stay. She forced some sounds from her throat; she was trying to speak, I was sure of it. She looked out, knowing but unseeing, pouring out her feeling, It’s so final, her eyebrows mobile and expressive between her frozen, clouded blue eyes, eyes that still knew.

I felt I was betraying her but I had to tear myself away. She was in good hands. I had done what I could. Before I was out of her driveway I was crying. On the way home sheets of emotion rolled through me in tingling waves. I slowed down, unable to see through tears that wouldn’t stop. I cried all the way home and then some.

No one can know what really lies behind the eyes of a dying person who can no longer speak. I have seen three women die, and all three have looked at me with eyes that seem to express unutterable anguish, some dark mix of sorrow, anger, pleading, or confusion. I hated myself for walking away from Joanie’s eyes, for doing what I had to do.

Sunday evening I came to sit with her again, while her son went home for dinner. Her breathing was rough, again with apnea, a fifteen second pause between a set of short inhalations and panting exhalations, sometimes accompanied by moans. In each cycle, her first and last inhalations were softer than the interim breaths, a reliable indicator of the pattern. She had her eyes open when I arrived, was present but not entirely inside the room. She knew what was happening.

Saturday I had left in despair. Sunday I left in peace, knowing I had found something to give her, something I believe eased her on her journey. I gave her a mantra. When my mother died, her last incomprehensible words to me had been asking for a mantra, a way of breathing I had showed her a couple of weeks earlier. I did not get it. I tried too hard, too far and wide, to figure out what she was asking for, and in the end I gave her an accidental alternative mantra that she latched onto and pushed out with each breath for three hours, until her last. As though she needed something for her mind to hold onto as she navigated the unknown transition.

I tried to give Joanie that mantra, starting months before when it became clear she was on her way out, and she tried but even then she could not form the sounds to sync with her breath. As I sat with her on her last night, I did that breath for her until something else occurred to me.

I said metta for her. I began to softly chant: May Miss Joanie be at peace. May Miss Joanie be free from fear and suffering. May Miss Joanie be happy and at ease. May Joanie be at peace, may she be free from fear, may she be happy. Peace, free, happy.

Peace, free, happy. I repeated the words with her exhalations, over and over. Peace, free, happy. She finally closed her eyes. Her breathing slowed. I did not stop. For an hour I repeated the words with her exhalations, and more slowly during the apnea; she calmed, she became at ease, she let go of fear.

Maybe. That’s what it felt like. Ilene came in and gave her some morphine before I started, I’m sure that helped. After her son returned I continued the chant as I left the room. I felt that I had given her that something for her mind to hold onto, a rhythm to carry her out, a prayer that eased her way.

Ilene called me two hours later to say that Miss Joanie had breathed her last. I am sad that I was not there when she left this world. It would have been a miraculous moment to witness. But she was not alone. Ilene was with her, and was amazed by the subtlety of it.

“It wasn’t long after you left,” she said. “Her breathing pattern changed again. The apnea went away. Her breathing got real shallow, and faster. I called the night nurse, then I called her son. He came right over. She was gone just before he came into the room. Her breathing stopped. I thought it was the apnea again, and I waited, and waited, and she just didn’t breathe again.”

May Miss Joanie rest in peace.

 

 

 

9 thoughts on “Helping Joanie Die

  1. Sigh, Rita, sigh and blessings on you for your great kindnesses, bravery and sensitivity. This is a beautiful homage to Miss Joan, to all that was done by loving people to help her die, to the resourcefulness you and her friends used to bring her what pleasures and comfort you could. She was very fortunate in that regard.

    I hope you feel at peace and I hope that whatever other challenges that have been going on for you are resolving. I hope you know, too, that we are always here for you.

    Love, Elliebelle

  2. Dear Rita, I read your book after my sister Nancy passed with PSP. I contacted you and have been receiving your blogs since then. I sat for days with my dear sister and watched her pass on. Her death was not peaceful but I’m glad I was there. I’m so sorry you have now experienced PSP twice in your life. I hope I never do again.
    Pat Adams

  3. you. are. awesome.   You make my heart swell with pride that I have the privilege of knowing you.   Love you, Jenifer

    Some of My Favorite Quotes    I hope to make people realize how totally helpless animal are, how dependent on us, trusting as a child must that we will be kind and take care of their needs…they are an obligation put on us, a responsibility we have no right to neglect, nor to violate by cruelty. James Herriot, English Veterinarian and Author

    Again the early morning sun was generous with its warmth. All the sounds dear to a horseman were around me – the snort of the horses as they cleared their throats, the gentle swish of their tails, the tinkle of the irons as we flung the saddles over their backs – little sounds of no importance, but they stay in the unconscious library of memory. Wynford Vaughan-Thomas

    There is something about the outside of a horse that is good for the inside of a man. – Sir Winston Churchill

    Every Catahoula needs a job, not everyone needs a Catahoula.

    Many people will walk in and out of your life, but only true friends will leave footprints on your heart. To handle yourself, use your head; to handle others, use your heart. Anger is only one letter short of danger. If someone betrays you once, it is his fault; if he betrays you twice, it is your fault. Great minds discuss ideas; averages minds discuss events; small minds discuss people. He who loses money, loses much; he who loses a friend, loses much more; he who loses faith, loses all. Beautiful young people are accidents of nature, but beautiful old people are works of art. Learn from the mistakes of others. You can’t live long enough to make them all yourself…. There is no beginning or end. Yesterday is history. Tomorrow is mystery. Today is a gift, that’s why they call it the present…… Unknown

    AND MOST IMPORTANTLY…………..

    For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. John 3:16

    Jenifer

  4. Oh Rita, my heart is so moved to both sadness and elation by your time with Miss Joanie. In grieving the loss of a beloved friend, I expressed that there was such a hole in my life now and someone said to me, think what a hole there would be if you had never known their friendship. Thank you dear Rita for sharing your incredible journey with your friend.
    Love Always,
    Rosie

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