Grief Interrupted

It has been a year now since Peter lost his struggle to breathe, his heart and lungs no longer able to bear the strain of fighting against the aggressive Parkinson’s disease that ravaged his body and mind for 12 years. A year since I’d stood at his bedside that night in mid-October staring at the gray corpse that hours earlier had been my brother. I sobbed convulsively, “He suffered so much,” I howled. My husband held me. Our youngest brother Michael choked back tears.

Days earlier, at lunchtime, I’d wheeled Peter onto the nursing home patio. It was a warm day. He picked at his food, was not communicative, but perked up when two Hospice musicians arrived to play a song he had requested the previous week, “The Last Time I Saw Paris”. Peter, hunched over in his wheelchair, moved his foot up and down in time with the music. The Hospice nurse brightened when she saw he was connecting to the music. As the musicians finished the tune, Peter’s head was drooping. I thanked them and turned the wheelchair around to head back to Peter’s room. I told him I was going home now and he whispered, “I don’t want you to leave.” I had to lean in to hear him. The disease had robbed him, a soft-spoken man to begin with, of power to speak above a whisper. “I know, I know”, I said and assured him that I’d be back. I was exhausted from the years of caretaking and was coming to terms with the ultimate knowledge that I could not save him. 

The next morning came the phone call from his nurse. Peter had not eaten any breakfast. He was lying on bed gripping the hand of the caregiver. He would not let go. He looked at her with hollowed eyes and mouthed what became his final words. “Help me”. He lingered for three more days.

Peter’s death had been long anticipated but not long prepared-for. There’d been no conversation with him and the family about his condition and what would happen and what his wishes were. I had battled against his denial for six years, had exhausted myself accommodating to his needs and, to the extent possible, his desires. He continued to decline in spite of our efforts. He’d held onto hope for a “magic bullet” that would cure him. But there was no magic bullet and he rejected our efforts to let us help him help himself. It was never going to be enough. Parkinson’s disease is a one-way street. Aggressive Parkinson’s disease is an especially hard road. Why, now that he’d reached the end of that road, didn’t I feel relieved? I slept, but did not rest. I forgot things. I dropped things. I could not do automatic tasks without conscious effort.

There was much to do. There was the cremation to arrange, the site for the scattering to decide on. There was an obituary to write and people who’d known Peter to contact. There was the memorial to plan, the scattering of ashes, the writing of thank-you notes. And in the middle of a sleepless night: my chest pains.

An ER trip was ordered and multiple tests performed. What I know now but didn’t know then was the multi-faceted shape of the loss. I did not understand I had lost not only the presence of Peter but also had lost the role of caregiver, of problem-solver, of big sister to my brother. I was grieving all of that.  

The Christmas holiday came and went. As winter deepened I came out of the fog. I slowed down, stopped fretting. In February the daffodils I planted in front of the Buddha statue in the back garden jumped up. Dozens of happy yellow blooms waved back and forth in front of the Buddha’s smiling face.  My friend Jo had given the bulbs to me at Peter’s memorial gathering. Daffodils and the Buddha signaling a turning away from the dark.

All the while, as winter was softening into Spring, as I began to emerge from the fog of grief, the swift-moving, highly contagious Corona virus appeared in Wu Han China and ran rampant across the globe, threatening or killing vast numbers of citizens on every continent. I watched the interactive maps turn red in areas heavily impacted. I feared for my son and his family in Italy. I mourned for those who, like my brother, were living in nursing homes waiting out their time – unaware, many of them, of what was coming.

And, in spite of my general good health, I was among those designated at elevated risk to contract the disease. What started as recommendations for mitigating the effects of the virus – for which there is no proven treatment or vaccine– became over the course of a few weeks a directive to stay at home, shelter in place, wear a mask, wash your hands continually, and if you must leave your house maintain “social distancing” from anyone you encounter. Charts and interactive graphs displayed results of data gathering.  I choked on the numbers, percentages, data points churned out daily.

There is no end to this story here. It will be months before the grip on our lives is loosened. It will be years before I understand what I have lost in this tumultuous time. And I will grieve again.

Interconnecting Circles


Pat Gallagher 
Pat is Professor Emerita, San Francisco State University and a founding member of the “fridaywriters” group. A genealogy aficionado, Pat is writing her family story, much of it arising from the bits and pieces produced at the “fridaywriters” gatherings.

#Pat Gallagher

Comments

  1. Margaret Kokka - April 17, 2024 @ 5:18 pm

    Dear Pat, Beautifully written if we can describe grief as beautiful. You not only captured what you were suffering but was able to translate this universal pain of loss as. it applies to all of us. I was especially touched about what you felt as the older sister, that special role as the caretaker, the responsible one, a special role in the family.

  2. Paul Heller - February 5, 2021 @ 7:05 am

    Dear Pat, beautiful – just beautiful. I was moved particularly by how doing little daily things became hard without concentrating. It makes so much sense. I’m glad the daffodils popped up. I recall things like that making a difference; breaking through the miasma of grief after my mother died. Mine were Paper whites, I think, They were a concrete reminder of life. I’m glad you sent this to Helen and she to me.

  3. Dan - November 10, 2020 @ 12:31 pm

    Thank you very much for this.

  4. Barbara Ridley - November 2, 2020 @ 6:14 am

    Beautifully written. Very poignant.

  5. valorie olsen - November 1, 2020 @ 5:57 pm

    Pat, life doesn’t wait to map the years on your face, the hobbledy in your step, doesn’t wait until you can handle the shape-shifting with good cheer and a shrug.

    We are given tutorials. As children we assume parents and grandparents will continue on
    as they are, we see no changes, we’re assured they know their lines. I was affronted when, visiting my grandmother after some time away at college, my grandmother offered me a breakfast choice of Grape Nuts or Wheaties instead of her signature crispy edged pancakes and bacon. You and Jim were there, every Monday, for your advanced tutorial. Always Wheaties and Grape Nuts.

    What a leap that was for you to witness, for you to explain, the repeating slide of your hand from Peter’s. How that bruised your
    heart – every – single – time.

    Thanks for the gift of your words and for your strength.

  6. Diane Wedner - October 31, 2020 @ 2:42 pm

    That is a beautifully written essay, Dr. G., describing piercingly the profound impact of love and loss. You and I have traveled many a long road pondering the role of a brother’s or sister’s keeper, and as you movingly describe in this piece, the answers to such questions are hard to secure and the process takes a toll. Peter was lucky to have such a loving sister–an advocate par excellence. The void caused by his death is understandable and will, in some respects, remain. You, my friend, will continue to move on. ~Di

  7. Jo Moorhouse - October 30, 2020 @ 7:53 am

    So beautifully written, intimate yet universal.
    THANK YOU,
    Thank you.
    Jo

    I found tthis recently… seems to apply here in many ways…

    THERE ARE MOMENTS WHICH MARK YOUR LIFE.
    MOMENTS WHEN YOU REALIZE NOTHING WILL EVER BE THE SAME
    AND TIME IS DIVIDED INTO TWO PARTS….
    BEFORE THIS AND AFTER THIS.
    Were we not the fortunate generation, to have such gilded memories “BEFORE.THIS”…..?

  8. Barbara Levin - October 30, 2020 @ 7:08 am

    These reflections from a loving, caring big sister resonate with too many of us aging Baby Boomers. Thank you for showing us what compassion and grief may look like. As time passes, I hope you are better able to be compassionate and loving with yourself, knowing you did all you could to ease your brother’s path.

  9. Carol Langbort - October 29, 2020 @ 8:53 am

    Beautifully written. As i’m Sure you’ve discovered,Grief has a life of its own. And lives on for a long time. Peter was so lucky to have you as his caregiver. You did the very best you could, but it was out of your hands…This piece is so emotional, and it all. comes through clearly. Thanks for writing it and for sharing.

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