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“You’re doing very well, Liz, managing your symptoms—and your vital signs are normal,” says Alice my hospice nurse as she folds up the pressure cuff and puts it away. “You know to call anytime you’ve got questions. We’re here to help.” I sit back in my armchair, noting her cheerfulness, her compassionate eyes, her capable hands. My heart brims with gratitude. Her Wednesday visits the past four months have companioned my efforts to remain conscious of my terminal illness.

And even more heartening is learning that we went to the same high school, Villa Duchesne, and that I was a friend with her aunt and deceased uncle, through Our Lady of Lourdes Parish in University City, Missouri.

Moreover, knowing that Alice will coach me through the loops of ILD with Rheumatoid Arthritis, my terminal disease, allays my terror. In no way can I prepare for this ordeal.

What I can do, though, is live each day to the fullest: blogging the experiences, exercising, eating well, resting, ADLs, praying, and mediating. Daily CPA meetings and phone calls with my sponsor keep me close to the 12 Steps.

And keeping fresh tulips on my dining room table buoys my spirit. All of this is the work of Precious God. There are no words—I’m grateful.

 

“Hi, Liz, I’m back to check on you again. Sorry about last week—more patients than I could handle.” It was Alice, my regular hospice nurse, tall, willowy, her ivory hands withdrawing her computer from her pink-embossed case as she sat down across from me. From her blue eyes emanated spirit, experience, and commitment to the dying process in my body, one day at a time—another coach to support this new venture into the Unknown.

She smiled as she looked around. “And that wreath on your front door—I had to touch it—flocked with berries, I think—lovely! And other decorations, as well.” Not all of them were given away, including my mother’s angel ornaments crisscrossing the tree in the hallway. Across from us, a white poinsettia hovered over crèche figurines, fired by a potter-friend, years ago.

“My helper Chrissy was here last week. The pine rope and bows across my porch railing—that’s more of her work.” But no seven-foot tree, still boxed in the basement, which had graced my glassed-in screen porch in past years.

Then, Alice asked her usual questions about my medication, appetite, sleep, and bowel functioning, took my vital signs—all were normal, save shortness of breath and weakness and still no pain. “Looks like you’ve no issues with self-care and dressing,” she added.

I nodded, though still dependent upon my clothing stick, my sock aid.

As she recorded her findings into her computer, I asked, “Have you worked with patients with ILD, my diagnosis? What does their end-time look like?”—Questions, until now, I’d been unable to formulate.

She paused in her work and said, “Yes—There’s no pain—only shortness of breath and weakness. And when your symptoms worsen, drugs will keep you comfortable as possible. That’s what we do.” Again, she smiled.

 

Three hours later, I heard the same directive, this time from Gail, the registered nurse who opened me to nursing, her squeaky-clean smile heartening me as she pulled a slick folder from her carrycase on wheels. Beneath the hospice logo, dotted by a yellow butterfly, appeared the words, Every Moment.

“There’s lots of helpful information here,” she said as she opened the handbook to the section, Your Circle of Support. “From now on, our medical director will be overseeing your care. His name appears on this purple form, the do-not-resuscitate-outside-the-hospital—For the paramedics should they happen by. Put it on your fridge with this magnet; it has our 24/7 emergency number. Call anytime. And I do mean that—We’re here for you.” My hand trembled as I signed the form.

“And if your symptoms worsen, our hospice facility will be your emergency room—No more hospitals. If we can’t stabilize your pain and send you home, we’ll keep you.” I hiccoughed. She was talking about me, further down this road.

From somewhere, I hung on to Gail’s words. “And a chaplain, a hospice aide, and a volunteer can also help out, if you wish—The other four sections, here, are for your review.” I leaned against the back of my armchair while kids’ laughter from the nearby elementary school lightened my mood.

Next came the review of my medication sheet, also kept in the folder. “Liz, when Dexamethasone, the little blue pill, stops working, that’s it—And with the return of your symptoms, the real work of hospice begins.”

Gail caught my dread and paused before saying, “And another thing—How we measure our patients’ decline that warrants our continued care. Instead of using the bathroom scale, we measure upper arms with this tape measure, also kept in your folder—Here, let me measure yours.” Despite the directness of Gail’s words, her rumpled navy uniform gave her a relaxed appearance.

I was suddenly played out, sipping ice water to stay focused. It was a long hour.

As we parted, her seasoned hands quieted my spirit.

 

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