•   Facing Death
  • PUBLISHED IN Yoga Chicago Magazine: May ­ June 2004.
  • The Presbyterian Intercommunity Hospital Newsletter, Spring 2005
•   Mom and me
  
  • PUBLISHED IN Yoga Chicago Magazine: March ­ April 2005.
•   Mom Flunked out of Hospice...again!
  • PUBLISHED IN Yoga Chicago Magazine: March ­ April 2006.
•   In Transition
  • PUBLISHED IN Yoga Chicago Magazine: May ­ June 2006.

   


       





•   Facing Death
    by
    Loretta S. Downs
    PRINTED IN YOGA CHICAGO MAGAZINE, MAY 2004

  People I love die. My pets die. My rose bushes die. People I do not know personally but to whom I feel an attachment, die. I will die. In light of all this, I have decided to make death a good experience, a practice in my life.
  
  In the 1980s my circle of friends was heavily populated by gay men who accepted me by wrapping me up in their intelligence, creativity, courage, and colorful lifestyle. They showed my sad spirit how to dance. They opened an artistic world I’d never known and in which I felt at home. When my friends began to die of AIDS, from California to New York, I found myself frozen by feelings of inadequacy. There was nothing I could do to stop the loss of people I cared about. It was difficult to be with them when they were sick because I was helpless to stop the stampede of ugly symptoms that would trample them to death. They mirrored my own fragile mortality, which induced more fear in me. In 1987, though not yet 40 years old, I attended 14 funerals of men younger than I. My burden of grief was like an iceberg, the tip visible and intimidating, but the more dangerous part concealed beneath the surface of my stoic facade. My heart knew there would be many more deaths yet to come.
  
  Sending cheery cards and making cheery phone calls once in awhile were easy enough to do, but with each inadequate assist to a friend, I felt a failure at friendship. As people I loved were writing the last chapter in the book of their lives, I was no more visible than a comma in the middle of one sentence. John Welshons writes in his healing book, Awakening from Grief, “…a large part of our grief is the sense of lost opportunity, and that most of the lost opportunities occurred while we were with our now-missing loved one.”
  
  My response to my pain of not doing enough to help my friends, of not being there for them, was to work harder and longer, make more money and spend more; to drink and eat and smoke more, to never say, “No, I can’t do that,” to run as fast as I could, and to attach myself romantically to unavailable men because I would not have to grieve their eventual departures.
  
  After my father died in 1991, with all of us in denial that he was dying, I went into therapy to deal with my food and cigarette addiction, a cover-up for the real issues. A year later, beginning to face my avoidance of emotional pain, I stopped drinking. Then I stopped smoking. Exercise slowly became a routine. I got food under control. My relationships changed from giving to receiving. Men became available for me. Work got balanced with play and rest. In her autobiographical exploration of grief, In Lieu of Flowers, Nancy Cobb writes, “Coming out of a depression, I suppose, is a bit like coming back from the dead. It’s learning to breathe again. And it is certainly as humbling to rediscover the most basic of life’s pleasures as it is to lose them.” The Universe slowly and gently led me forward, presenting opportunities to make new choices.
  
  In 1995 I consciously decided that I wanted to know more about caring for the sick and dying. I wanted to be emotionally prepared to be available for my friends when they needed me most. To learn the lessons I sought, I became a volunteer on the 19-bed AIDS unit at Illinois Masonic Hospital where I had visited too many of my friends over the years. At the hospital I was able to observe hundreds of patients dealing with the symptoms of a life-threatening illness. Some were living the end of their lives. Some had family support, some had been abandoned. A striking difference between the experience of patients or families who denied and fought the reality of death and those who accepted it soon became apparent to me.
  
  The people in denial carried a palpable burden of emotional pain and suffering and families often expressed this in the presence of the people they loved, who lay dying. I witnessed angry patients and families abusing the compassionate staff. I witnessed inconsolable grief, hearts hitting icebergs they pretended they did not see. I witnessed patients demanding extreme medical treatments. I witnessed strenuous passings that sometimes went on for days. I witnessed an unwillingness to understand the obvious: death comes to every living thing.
  
  There were others who, by accepting the reality of what is, were unburdened of the fear of dying. These patients and families sought to live every day fully, with love, friendship, kindness and gratitude. Those in acceptance seemed to act as though each minute could be a positive, meaningful experience. Everyone around them was drawn in to their light. They had more visitors who came bearing gifts of favorite foods, clothes, magazines and always stories. The staff stayed with them longer. These seemed to have less extreme symptoms. Death arrived more peacefully for the accepting. Their loved ones carried sadness but not the bitter pain I saw too often in the death-denying survivors.
  
  The evidence made me want to connect more closely with those dying in acceptance, so I joined Hospice Partners as a volunteer patient companion. Hospice is a philosophy of support and comfort care that envelops a person who has accepted his or her dying, along with family and friends, in a blanket of hope. It is a safe haven where a team of specialists form a cocoon around the dying one and guide him or her through physical transformation while encouraging spiritual healing along the way. My role as a volunteer is to listen to the feelings and thoughts of those I encounter living the end of their lives. I am to be present in silence as well as in laughter and tears. I am to encourage all the appropriate activity and behavior my patients are able to perform while I create a space for them to engage in spiritual healing. I am to support the caregivers, to lighten their load. I am to be open to building a friendship that will soon end. And some that will never end. I am to be open to learn how to die myself. The practice continues. Now my patients and their families are my teachers.
  
  In his experiential book, A Year to Live, Steven Levine writes, “Preparing for death is one of the most profoundly healing acts of a lifetime.” Two years ago, two young women were killed in a freak accident when a scaffolding fell from the Hancock Center onto their car. Reading the story I received a jolt like lighting hit me: that could happen to me. Despite my growing awareness of death as a part of life, the concept that it could take me without warning was new knowledge to process. “What if I were to die this year,” I wondered? “Am I as prepared as I could be?” The answer was a resounding, “No.”
  
  Two issues presented themselves immediately. Am I doing the work of healing my soul and do I have my legal business in order? Another loud, “No!” Since I am unmarried and my only living parent is 91, legally my sister would be in charge of my life should I become unable to speak for myself. She loves me dearly, but she would prefer not to have that responsibility. The first thing I needed to do was appoint a Health Care Power of Attorney and write out a Living Will so that my Power of Attorney, my doctor and my sister would know what my medical directives for care would be in case I could not speak for myself. This exercise was easy as I had thought about it often, and there is abundant information available to execute an intelligent, meaningful and legal document.
  
  Next, I needed to update my five-year old will. This was not so easy when I viewed my will as an opportunity to make a difference in the lives of many instead of merely a few. Some of my values, relationships and assets had changed since I wrote my previous will. It took nearly nine months of thinking and making lists to come up with a satisfying distribution of my major assets and my most important objects. As for the smaller objects in my life, I’m going to follow “Pauline’s Plan.” When you visit her home and admire something she owns, she puts a sticker with your name on it. I learned this when I commented on a painting. “Oh, no, Pauline, you don’t need to put my name on it,” I politely pleaded, embarrassed. She lifted the piece off the wall and discovered someone’s name already on it. Mortified, I stammered, “Oh, don’t--don’t worry, that’s OK.” “Don’t you worry, Darling,” she said softly, peeling a fresh sticker, “We’re not speaking anymore.”
  
  The last legal issue I covered was writing out my burial wishes and asking my nephew if he would execute them. My delivery of this request was poorly timed. A week after I had hurriedly explained my wishes, he called me somewhat tentatively and asked, “Aunt Lu? Are you sick?” “No, Honey, I’m not sick,” I said with a little shame for causing him unnecessary grief. It was not easy to get a laugh out of him but we did grow closer at that moment.
  
  Finishing my legal business lifted a burden of responsibility from my shoulders because should I become unable to represent myself or unexpectedly die my decision makers know my wishes. My assets will be distributed to the people and places I want to honor in this way. I am free of these worries--and I can always change the stickers.
  
  Now what was I to do about healing my soul? For years I had been facing my grief over the deaths of people I love by processing it and expressing it in healthy ways like crying and talking about my feelings. I know death is a part of life, but what of all those personal and potential losses that I might have to face one day? What was I doing about my fear of not having enough money? My fear of growing older? My conflicted emotions about my frail elderly mother? My fear of pain? My fear of a lost mind? My fear of being alone? My fear of death? Where would I learn to reach peace about my death? There was no question that it was time to face my fears, embrace them and forgive myself for holding them at all.
  
  As soon as I opened myself up, The Universe led me to more teachers. Mediation tapes and brochures for mediation courses found their way into my hands. Mitch Albom signed my old, worn copy of his essential book, Tuesdays with Morrie. I received a gift of Wayne Dyer’s Ten Secrets for Success and Inner Peace. Buddhist thoughts kept showing up in my email. My body worker called to remind me to return for another session. A Yoga Chicago magazine came into my home suggesting it was time to renew my attendance at yoga class. My trust in God expanded. My hospice experiences were all positive. Opportunities to make changes were popping up all around me like tulips in April.
  
  The journey to acceptance of my own tender mortality continues, but the path is smoother, more direct. Now, when I think of growing older, I see myself as a beautiful wise woman whose knowing will help others to reach peace. When I think of losing my mother, I try to appreciate her in the moment. When I say “Goodbye” to her, I mean it. When I think of having pain I accept it and trust that my caregivers will do all they can to provide me with comfort. When I consider that I could one day lose my mind, I tell myself that my value will be as a teacher for someone. When I think of being alone, I watch lovers and take the affection I witness between them into myself, feeling gratitude that I am able to see people expressing love to each other. I borrow some of their love and make it my own. When I think of dying, I think of how beautiful life is. I think of how fortunate I am to learn these lessons. I feel gratitude for the privilege of being with the dying. I feel love all around me. I feel The Universe expanding around me in hope.
  
  Then I think that if I had to die today, this would be a good day to die, because I am at peace.

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•   Mom and me
  By
  Loretta Downs
  (Printed in Yoga Chicago Magazine March/April 2005)
  After three weeks on the Psychiatric Ward, my Mom is back at the Fairmont Care Center chemically adjusted to her best sweet-self appreciating her caregivers with a prayer chant, "Thank you, thank you, thank you," any time they serve her. She weighs only 101, prefers to eat just the soup and dessert and call it a meal. She sleeps most of the time, in the private room her old house pays for, facing a wall covered in family pictures and great-grandchildren art that she says, "is my life".
  
  Last night I stopped in around eight o'clock. After taking off my coat and leaning into her hollow cheek to deliver a kiss and speak into her ear so she could hear me, I asked, "What would you like me to do for you?"
  "Just be with me," she answered.
  
  I zipped off my boots, then crawled in her bed to stretch myself along her back and hold her, but she said, "No, you should be over here," pointing to in front of her. I stepped around the bed with red stocking feet and slid in next to her. We made spoons. She wrapped her thin arms tightly around me, and I wove mine into hers. She squeezed me saying, "My little girl, my baby, my beautiful Loretta," squeezing and releasing while I bathed her pillow in healing tears.
  
  "How was your day, Mom?"
  "Oh, it was beautiful," she replied, with gratitude in her voice. “They treat me like a baby.”
  
  She wanted to know what I've been doing to keep busy, a question she asks more often these days. I talked about Indigo, the 8-month old daughter of my young friend Barb whose own mother died when she was 22. I’m privileged to be the baby’s Auntie Loretta and spend some hours each week playing with her because she balances my life of being with the dying. I told Mother that her latest achievement is trying to crawl and promised to bring the baby for another visit when the weather improves. We talked about family members, my friends, and her girlfriends in the nursing home. I decide not to tell her that while she was "away" her brother Pete was diagnosed with colon cancer or that her youngest sibling, at 86, had a stroke. Or that the father of my childhood friend Lynn and two of the residents down the hall from her room died in one week. I'll tell her all of that another time. I will tell her so she can pray for them.
  
  We stayed there for an hour, holding each other, creating the kind of intimacy I spent my life yearning for. I was visiting a mystical, foreign place I'd always dreamed existed but never knew the route to reach it. She stroked my head, remarking that, "You have Daddy's hair." Then, with reverence, "I feel like I'm touching Daddy." I asked her what it was like the day she met him and she told me with girlish delight in her voice, "He kissed me and he said 'I think I'm going to marry you!'" She paused a minute before she said in a low, slow voice, "And I never let go of him."
  
  I gave her time to live in her memories, before I asked, reluctantly, "Are you tired, Mom?"
  "Yes, "she admitted softly.
  "I love you, Mommy," I said, failing not to let the words deliver tears as punctuation.
  "Oh, I love you, Loretta, I love you," she said, not crying, but squeezing me with all her might, kissing my head, "It's so hard to say goodnight. I don’t want you to leave."
  
  Her new doctor, with extraordinary lack of enlightenment, would not assign her to hospice after discharging her from the hospital last Monday. He told me, "She doesn't have cancer or something like that." She, I, her care-giving staff at The Fairmont, all need the extra care of a hospice team. So many are deprived the specialized care of hospice because, like the rest of us, doctors see death as failure.
  
  I had some of the best moments of my entire life yesterday. I have no recall of my mother ever holding me like she did then. Perhaps she did and I forgot it in all the shame and pain that came between us. Perhaps I never allowed her to get that close. Perhaps she didn't know how to show me love. Perhaps the learning couldn't come for either of us until now, at the end of her life. It doesn't matter. Whatever happened in the past no longer matters, because I will be able to feel the moments that I had yesterday, feel the safety of my mother's arms around me and hear her call me beautiful until the day I die.
  
  After years of being with people dying, I finally understand why some take so long to leave this side of life despite the ravages of disease or the accumulated, continuous losses that come with very old age. It is because they will miss us as much as we will miss them.
   

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•   Mom Flunked out of Hospice--Again!
  My mother was weighed this week and has gained eight pounds since June when she entered into the care of hospice at 110 pounds under a “failure to thrive” diagnosis. Gaining eight pounds is not failing to thrive, so she will be discharged from hospice next week, remaining at the Fairmont Nursing Home, the place she calls home and the home in which she will die.
  While I celebrate the gift of more time with her, I am also very sad that she will certainly grow more frail and dependent, suffering more losses of capacity and ability. Already she has difficulty eating without assistance, and at some point she will not be able to feed herself at all.
  
  The Director of Nursing at The Fairmont called me this morning to say Mom had been up at 6 a.m., screaming that someone had thrown water on her. She was sitting up, her bed was soaked, she’d taken off her diaper and, of course, wet the sheets. They wanted us to know in case she relates the incident to us or continues to be angry with the staff. She is as often angry and belligerent with her caregivers as she is appreciative and thankful. I never know what sets her moving in either direction and I’ve given up trying. My role is to just be with her, in either mood, accepting her.
  Yesterday we had a sweet visit. I brought a ham and Swiss on rye, cole slaw and her favorite coconut donut from the deli. She thanked me for “the picnic.” I read her mail--a card from her son and one from a thoughtful friend of mine. My cousin Andrea showed up unexpectedly. She brought a copy of an interview she’d done with Mom three years ago for a resident profile for the Fairmont newsletter when Andrea had worked there as a social worker. We drank coffee with ice cream in it and shared the donut while Andrea read the profile.
  
  Mom listened with her whole heart. Afterward I asked her if she would like us to read it at her funeral--”When you die in seven years when you’re 100!” She actually shed a tear (rare for her) and said that was a wonderful idea. This was one of her few admissions to eventually dying.
  I’m going there again tonight for dinner; my regular restaurant is now The Fairmont. I will see if she remembers this morning’s events--or yesterday’s.
  Keep us in your prayers, Loretta
  

  
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•  In Transition
  Anna Piazza Schenk
  September 17, 1912 – April 10, 2006
  
  Mom left yesterday, as the early morning sun smiled outside her window, with me at her side. I sat next to her with one hand on the soft skin behind her cool neck and the other on her rosary praying a Hail Mary when I realized she’d stopped breathing. It was so peaceful I almost missed it.
  
  On March 22nd my mother excitedly told me she was taking a trip, “on a cloud, a big piece of cloud.” She would leave when she had “everything set,” and “travel around the world.” She would put rooms on the cloud, “fix that up with furniture because we’re a big family and we’ll be getting a lot of company, so we have to make it comfortable for them.” I asked her if she would give me some time to pack. She said, “Oh, yes. We’ve got to have our suitcases ready to leave.”
  
  We were in bed together. I leaned into her good ear and asked, “Are you happy?”
  She replied clearly, for the first time I ever heard her say it, “Yes, I am happy.”
  I deepened the question, “How do you know you’re happy?”
  “Because I have ideas that make me happy. Like this trip I want to take. It’ll take two or three months to make the trip alone.”
  “And that makes you happy?” I asked, feeling happy for her.
  “Yes,” she said, smiling. “I’ve got plans and that makes you think better.”
  
  Ten days later my mother had a stroke that left her right side paralyzed and unable to speak or swallow. My sister and I decided not to hospitalize her, not to artificially hydrate or feed her and instead we chose to allow her a natural death supported by the compassionate care of Heartland Hospice whose specialized staff would come to The Fairmont Care Center where Mom lived.
  
  The last week of her life was a gift for all of us who participated in her dying. She had time to receive a great amount of physical, spiritual and emotional attention given with love. Her familiar hospice team embraced her with devotional care once again.
  
  I had time to process her loss while caring for her to the best of my ability. I was able to sit in her bed, hold her and tell her the long list of lessons that she’d taught me. I was able to tell her how meaningful her life has been. I was able to let her leave.
  
  I was able to receive care for myself, from my friends—and hers. Residents fed me candy and cookies from their private stash. They held me and let me cry on their old bones. They rolled into her room to touch her hand, to leave a prayer, to let me know how much she was loved.
  
  She was able to die in the place she’s called home for nearly six years, in the elegant hospice room that resembles a suite in a fancy hotel where her friends and family had the space to be with her. She allowed me to witness the miracle unfold, to be in her grace, to watch the butterfly leave the chrysalis.
  
  Moments after she died, my sister arrived, then Stephanie, my friend since high school who loves my mom, then Margaret her remarkable hospice aide, who was celebrating her birthday. We bathed my mother like she was a queen. We dressed her in her favorite fluffy pink robe, laid her head on a big, soft, bright blue butterfly pillow. We sprinkled her bed with rose petals and placed more in an empty candy box set at the foot of her bed. We sent out word inviting visitors and within minutes a procession of wheelchairs, walkers and uniformed staff came to say goodbye.
  
  They held us and we held them. There was joy under all the tears. Everyone said, “She looks so peaceful, so beautiful.” Each mourner was offered flower petals “as your final gift to Anna,” and each of them placed their gift on her bed with reverence.
  
  We waited for Monday morning bingo to finish so her last of the neighbors could say goodbye before we helped the funeral director wrap her up with all her gifts, set her on a gurney and cover her in green velvet. Six residents and staff formed an honor guard and we all escorted her through the corridors of The Fairmont and out the door, waving “Goodbye, Anna,” as her body was placed in the van.
  
  I am sitting with joy knowing that my mother died with dignity, in peace, without pain, cared for by hands that loved her, and in her own words, happy.
   

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