Hospice 101

By Diana Woods

Essay

Being on hospice doesn’t mean I’ll be dying tomorrow, although I’ve hoped it would be that easy. If only I could take my last breath while sleeping—one last inhale, roll over and be gone, leaving only a deep stillness in my room. But, despite the suffering, I want more time to prepare my children on how to keep up the house, the yard, to nurture the staghorn ferns and entice the glossy white dendrobiums hanging from the patio trellis into blooming. Everything I’ve ever possessed seems to be closing in on me. I’ll need to loosen my grip on all of the precious things I’ve garnered during my seventy-one years. My garden beckons outside the bedroom window. The dogs bark and the cat hisses, but the mute plants can only signal for attention by denying their plumes. Surely, my children will remember me stumbling out with the hose every morning, but will they care about the tender fronds and buds unfolding to reveal the tiny miracles inside of their world?

While my garden surges with vitality, my body declines. That first scorching week in September 2012, after I enroll in hospice, Dr. Carmel visits my home. As the harbinger of death, I’d expected her to be tall and gaunt, solemn and mysterious, dressed in heavenly blue or earthly red but instead she’s short, plump, and bubbles with mirth. Multiple-jeweled bangles encircle her wrists. A magenta-and-lime scarf clings to the bodice of her violet dress. From underneath her furry lashes, her eyes dart from my IKEA birch-framed bed to the gunmetal gray commode and settle on a side table littered with plastic pill bottles, tissue, pencils, paper and a small white reading lamp. “Where’s the television?” she asks.

“Nada,” I reply, lying on my back looking up at the brass-framed light fixture hung from the ceiling of the square room, my swollen legs propped high on pillows and my hair damp with sweat. I’ve vomited my breakfast egg sandwich and hope the room doesn’t reek of bile. My tummy rumbles and churns, but those things I won’t talk about, not yet. I don’t want her to think of me as just another whining patient. The hospital doctors had had little tolerance for that. “Why so dismal?” the nurse practitioner would ask if I didn’t smile.

Dr. Carmel drags a chair over to my bedside, pulls her laptop from her roller bag, and sets it down on a stool. Her belly jiggles when she laughs. Already, I’m noticing that she’s different than those clinic doctors who’d been serious about poisoning my tumor and often imparted false hopes. After a year-and-a-half of chemotherapy and a whole new vocabulary, the actual dying part still remains a mystery.

She points an index finger over to the metal case of her laptop. “We just started using these things, but I’ll be sticking with pencil and paper so we can actually talk. Few patients know much about hospice, so we’ll start at the beginning, hospice 101. How much pain can you tolerate?” she asks.

“None,” I reply.

With the hospital doctors, I had tried to be stoic and brave but with Dr. Carmel, I feel no need to bolster false reassurances that treatment was helping me. No more scans or infusions. No longer do I have to pretend that I’m hopeful about remission as a viable goal. I knew just what to expect in those drafty rooms at the clinic, but now the terrain has changed. On my final visit to the clinic, my oncologist asked if there was something I’d been able to enjoy in those final months before hospice. And I’d responded, “Gelato!” When I’d hobbled out that day, they were the ones with the smile on their faces.

“That’s my job—to keep you out of pain,” Dr. Carmel says, bobbing her head. “Any pain now?”

I look over at the vials and feel guilty that I haven’t been taking as much medication as I should.  “Yes, but it’s bearable.”

She reaches into my pillbox and grabs the syringe, tears off the plastic wrap and measures out .75 ml of liquid morphine. “Under your tongue,” she says, standing over me. Within minutes, my discomfort fades. Pain, no pain, maybe pain, almost pain, that blurry line doesn’t matter.

She sits back in her chair.  “Better?” she asks.

My lips pucker. “Ugh…the taste.”

She chuckles. “Well…morphine.’’

I grab onto the glass handle of my mug of fennel tea and sip.

What’d you eat for breakfast?” she asks.

As the room swirls around me, I struggle to focus. “Eggs and toast. I try to eat healthy.”

She frowns. “You’re just feeding your tumor.”

“Well… what should I be eating?” All that time I’d been spending in the aisles of the Whole Foods Grocery, checking each jar and box for the USDA organic seal, and now these things don’t matter?

“You’re eating for pleasure and habit—not nutrition,” she says.

I smile. “Gelato for breakfast, lunch and dinner?”

“As often as you like but before you eat, take the Reglan tablet to help your digestion.”

“Do I need it?”

“It eliminates the nausea and vomiting. Let’s look at what else you’ve got in your pill kit that might help.”

I gesture toward my collection of vials on the table. So many that it makes me cringe. Has my life come to only this?

First, she plucks out the long-acting morphine tablets that I’d been given by the hospital doctors. “Only 30 mg—a baby dose! We’ll double that, twice a day with the fast-acting liquid morphine every two hours as needed. After three doses of the liquid, it’s time to double the number of tablets. You’ll need it.”

“I hate that groggy feeling.”

“And pain…where’s that on your list?”

“I’d rather skip it.”

She grins. “And steroids…how do you feel about those?”

My body twitches with the remembrance of those spurts of energy during my chemotherapy. I’d been able to plant and weed in my yard and visit the Arboretum and the Huntington Gardens with my family. My legs had seemed more like part of me. Then, my arms had reached higher. But I was only allowed to take those pills for 3-5 days during each cycle. I ask, “Aren’t they bad for you?”

“Do we care about the long term?”

I try to roll over but feel a pain in my side. “Any idea how long I might live?”

“I’m not God,” she says with a sigh, as if dying were a special gift and there was so much more to tell me. “You’re wasting your time if you’re trying to kill yourself. There’s not enough morphine. That’s not our job—to kill you. Each body shuts down in a different manner. We’re here to make you comfortable.”

I kick my feet against the blanket. “How will I know when the end is coming?”

She leans back and takes a deep breath. “Let’s hope you don’t.” The flickering of her eyelids foreshadows my curtain dropping. “Dying isn’t easy,” she says.

But couldn’t it be? Just this once—for me! Don’t let me linger. Promise that I’ll slip away quickly. Those are the things I can’t say, but she knows what I want. I have to believe that she’ll ease my suffering at the end.

When my head falls back against my pillow, I see her scarf swirling around her shoulders and hear her stuffing her laptop into her roller bag. “Enough for today,” she says. “When you have pain, phone immediately. Don’t assume it will go away. It will only get worse unless we increase your morphine.”

That she’s leaving so soon, I wonder about, but my conception of time differs from hers. When I close my eyes, an hour can disappear.  Now she’s on her feet, heading for the door. As I mumble about not forgetting to turn the lock behind her—poof–she disappears like a desert mirage.

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DIANA WOODS is a 71-year-old woman living in Los Angles and on hospice care for ovarian cancer. She earned her MFA from Antioch University, Los Angeles in December 2011. Her personal essays are currently published in The Rumpus, The Silent Revelations Press and Gemini-Magazine.com.

40 responses to “Hospice 101”

  1. Natalie says:

    Beautiful and heartbreaking. Thank you for sharing this intimate look at hospice and at your life.

  2. Thank you for sharing your experiences, and for writing so beautifully.

  3. Liz says:

    You are courageous and mighty. I am humbled by your strength. I am gifted by your openness and honesty. Thank you, Diana.

  4. Victoria Patterson says:

    Thank you. A wonderful piece.

  5. Eileen Terris says:

    Diana, I just read your piece concerning your hospice care; it is very well written! I learned of this essay through facebook, when Gayle Brandeis recommended it. Thank-you, and remember you are on your journey.

  6. Molly Hagan says:

    What a magnificent writer you are. Thank you.

  7. jane says:

    Dear Diane, Thank you for your brutal and beautiful honesty. I know this landscape well, but it never ceases to amaze me how the words of another going through their journey can light a candle for another’s own path. Please if you have the energy and inclination take a peek at my enclosed website and perhaps you can find some comfort with others who have battled mightily even from hospice and won a new lease despite all odds. My own father and a woman named Machelle to name a few. Look for the YouTube attached (there are many, but I feel certain you’ll find the one most helpful to you quickly) and I’ll hold you in my prayers. Peace and many blessings as you write your story afresh every day.

  8. Laura Bogart says:

    I’m struck speechless by the beauty and the power and the grace with which you write. I wish you peace.

  9. Daniel Young says:

    Thank you, Diana, this is a beautiful and honest story. I just wanted to let you know that I’ve been touched by reading this. Peace be with you.

  10. Kay Wisdom says:

    Beautiful, Diana! Courageous, intimate and lovely. You are a blessing.

    K

  11. mary says:

    Diana,

    Thank you for your raw honesty, for illuminating what is often hidden.
    may
    peace be with you

  12. Your words kick ass. Thanks.

  13. Donna says:

    Your honest telling of your experience helps prepare us all for the final journey. Thank you, Diana.

  14. Bridget says:

    Diana~

    Thank you for sharing this piece with the world. Peace be with you…

  15. Ray Shea says:

    This was wonderful, thank you. Hospice is coming soon for my father and I’m trying to prepare myself.

    “None,” I reply.

    Awesome.

    I hope your journey is peaceful and pain free. It sounds like you’re in good hands.

  16. June Cotner says:

    You’ve put beautiful words to many things I have wondered about. Thank you for your generosity.

  17. Julie Stark says:

    Such a lovely message, Diana. You were a role model for me when we shared a class. Thank you so much for sharing with us.

  18. Melanie Alldritt says:

    Thank you for writing this. Thank you very much.

  19. Kayla Allen Lescure says:

    Your writing is profound, honest and beautifully direct. Please accept my gratitude –

  20. Michelle says:

    Training to be a hospice volunteer, so this window into your world, soul and thoughts is so valuable a lesson. Peace be with, around and over you in your journey. Love that your garden is your legacy in the world.

  21. Martha Bayne says:

    Dear Diana – Thank you for sharing this honest, urgent piece. Your writing is like …. a Shaker chair, or something, lyrical yet plainspoken. I hope your days at home are peaceful and pain-free, full of gelato and garden blooms in the window.

  22. Maggie May says:

    Diana I cannot tell you how important it is to me to have pieces like this to read. I know much of what I feel is common but I”m speaking just for myself here- dying is such a mystery in our culture, and to read an intelligent writer revealing her own experience with it is an honor. Thank you for sharing this with us. I hope you are enjoying something- gelato, flowers, a breeze on your cheek. xo

  23. Autumn says:

    Your writing is like the plants you love. Beautiful, quite, profound and awesome. I wish you peace and offer my gratitude for having experienced this essay.

  24. Dear D.,
    You are a writer, published and being read. What a perfect finale. Brava!

  25. Dear Diana,

    Beautiful clear writing that takes us into your experience, letting us imagination what our own ends might be like. I am a big fan of Dr. Carmel and I’m very glad that such an enlightened doctor is on your team… thank you for your enlightening writing. For sharing your big heart and mind. Louise Steinman

  26. Thank you so much for sharing this, Diana. Your prose is luminous, and the intimacy you’ve created with all of us is precious.

  27. Varun Verma says:

    Diana – you’re a very brave woman. It’s a very well written note and we hope and pray the best for you.

  28. Kristin says:

    You’re so very courageous and observant, Diana. Thank you so much for sharing this. Love and light.

  29. Susan Nunn says:

    oh Diana, I so wish I could be with you during this time. We could write, and laugh and just be, my heart is with you and praying for a lighted path.

  30. Vijay Narula says:

    Hi Diana, amazingly well expressed article which would touch any one’s heart. Our prayers are with you and may your comfort level be the way you desire it.

  31. Diane…I remember your joy-full spirit so clearly and this is what ultimately comes through in this writing which is so wonderful and generous of your self. Please know I’m thinking of you and feel free to send me an email (on my web site) if you wish….sending you light to add to your own glowing light which is present in this writing, gracias.
    Alma Luz Villanueva (teacher/mentor, Antioch University)

  32. Andromeda Romano-Lax says:

    Diana,
    Your willingness to convey your experience so clearly and honestly is a gift to your readers. Thank you and know that you’re touching and teaching us.
    A fellow Antiocher

  33. Samantha Peale says:

    Thank you for this beautiful writing.

  34. Rachelle Willhite says:

    I read this article this morning and you gave me a window into your world. It makes me realize what I have taken for granted and inspires me to appreciate and love. I wish you the very best.

  35. Lisa Willhite says:

    Thank you for sharing your courageous words and letting us have a view into your world. Your beautiful writing will be shared with our children. I wish you peace and until we meet again, and I know we will, all the very best.

  36. Stephanie Westphal says:

    Dear Diana,

    Thank you for your beautiful and honest writing. Such a hard topic and yet you treat it with grace and a light touch.

    Sending you wishes for ease and grace in this process. — Stephanie Quinn Westphal (a fellow Antiochian)

  37. Arlen Deardorff says:

    Dear Diana,

    What a beautiful writer you are! I feel so fortunate that I was able to see you for our 50th high school reunion 3 years ago. Your writing has touched me and I hope you will be pain free during your hospice care. My thoughts and prayers are with you.

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