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It was February 1, 2022, an overcast day, twenty-eight months since my sign-up to receive hospice care for my diagnosis of Interstitial Lung Disease with Rheumatoid Arthritis.

The doorbell rang. It was the hospice nurse practitioner to evaluate my continue participation that occurred every six weeks, given the Medicare protocol for my disease and treatment.

During our last evaluation, my insides had jellied when she said, “Liz, you continue doing so well, perhaps too well. Not much decline since our last being here.” She looked away, then added putting away her stethoscope, “We’ll certify you for another benefit period, then re-evaluate next month. Now, you’re not to worry. We’ll work this out.”

But I did. I still remembered the compassionate response of the ER doctor that Halloween morning, 2019, “You’ve come to the right place, Liz. From here on out, palliative care will serve your medical needs. No more going to hospitals for tests. No more doctors’ offices.”

Only after the nurse left did I learn the difference between hospice and palliative care: Patients not ill enough to qualify for hospice and too ill to benefit from home care services. Perhaps that’s where I belonged.

Yet, hospice did pick me up.

“I said this would work out,” the nurse practitioner said, her eyes smiling behind her mask. “We’re going to hold on to you, after all. That new medication for your breathing warrants our continued surveillance.”

I smiled, another experience of God doing for me what I could not do for myself.

“Looks like it’s still seventeen, Liz, like last December’s—Have you lost any weight?” asked Cayce the nurse practitioner from hospice as she removed the tape measure from my upper arm and slipped it into her bag. Her soft brown eyes opened onto her compassion like suns warming ocean currents, her face masked, her blue uniform pressed. She had already checked my vital signs and troubling symptoms.

“No, I don’t think so, and my clothes still fit—even though loose. Since it got cold, I only wear turtlenecks, sweaters, and sweat pants.” Over the years, my sister-in-law’s Christmas sweaters still afford me a daily change of color that brighten my day; others, as well, at times.

“That color—royal blue—sure looks good on you, Liz, with your silver-white hair. Must keep you warm.” I nodded, then she added, “But I see your breathing’s more difficult—looks like your concentrator’s set on three now,” she said stooping over to check the monitor. Never could I have guessed that I’d be so dependent on oxygen, recommended by my pulmonologist since 2013: then, it was nightly, at one liter per minute.

“The change is subtle, but constant. Each day is different, bit I still adhere to my usual routine. Exercise is critical, but with the help of Chronic Pain Anonymous I’m learning to gentle myself. Sometimes, I only do half my routine and let the others go.” From behind Cayce, the snow’s brilliance shone through the windows of the French door, brightening my dining room.

“Well, you still qualify for hospice, Liz. You’re doing very well with all of this. Be sure and let us know if you’ve questions or need anything,” she said, collecting her equipment. “We’re here for you.”

“They want us to wear masks when we see patients—as a precaution,” she said, her brown eyes warming as she pulled open the screen door and stepped inside. It was Kassie, the nurse practitioner, come to evaluate my continued participation in hospice, per the Medicare guidelines. She had called earlier. “I’m glad to meet you, Liz. Alice tells me how well you’re doing—you lead the way.”

Still dizzy from the nebulizer treatment, I took slow deliberate steps supported by my cane toward the dining room table and sat down. Instead of a computer, Kassie withdrew a yellow pad from her case, began questioning my symptoms, then added them to the penciled notes she’d taken from my chart. “Now, let me listen to your lungs—Yes, lots of crackles as I suspected—still yellow when you cough it up?” I nodded, covering my mouth and leaned back in my chair.

“And no change in the measurement of your arm since last time,” she added collapsing the tape measure with slim fingers. “Still 19—from my findings, Liz, you’re still eligible for hospice.” I breathed easier, glad for Alice’s and Eunice’s guidance.

As Kassie prepared to leave, she appeared serene in her blue scrubs, unmoved by the pandemic’s challenges. “Yes, since my husband’s also an essential worker, we’re taking turns homeschooling our nine year old. Our five year old’s still in the hospital’s day care with most of his friends.” Her brown eyes smiled as she spoke, her thick brunette hair swept up into a bun enhancing her loveliness. “And last night, it was such fun making supper in the kitchen. That’s never happened before. I’m sure we’ll do it again.”

Her spirit’s flexibility touched mine.

 

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