‘Blind Spot’: Reflections on Caring for a Severely Disabled Son

 “When I think of the term disability, a huge basket of a term, I think of the duration and breadth of my son’s life.”

The author and Luke

Much is being written these days in both the nursing and general press about the plight of family caregivers. As one myself, I’m well acquainted with the difficulties of maintaining a “normal” life (and meeting other responsibilities) while trying to ensure the safety and survival of a person you love. But what if your caregiving commitment begins at someone’s birth and lasts a lifetime?

In this month’s AJN, nurse Diane Stonecipher writes with grace and clarity about the challenges of lifelong caregiving at home. Even for an RN with committed and loving co-caregivers (her husband, her other sons), the work and worries are daunting.

“If Luke is our job, so to speak, there are also no sick days, holidays, vacation days, or ‘mental health days.’ We have cared for him while ill and injured, or until we simply cannot. By some miraculous grace, we have tag-teamed his entire life.”

The days, weeks, months, and years of those who care for severely disabled family members are probably difficult for others to appreciate, if you are one of those who care you […]

2017-07-11T12:16:22-04:00April 7th, 2017|Nursing, nursing stories|0 Comments
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The Limitations of Rating Nursing Care by Customer Surveys

Ink and collage on paper by Julianna Paradisi 2017

Either They Loved It or They Hated It

While toasting the same English muffin for the second time that morning and cursing that it would make me late for work, I conceded we need a new toaster. It doesn’t matter whether I set the darkness level on 1 or 4;  the muffin comes out barely tinged. Select 5 or beyond, the muffin is burnt, and sets off the smoke detector. It’s time to buy a new toaster.

I found one I liked, shopping online. It had been purchased by over 1,500 other people; 55% of them rated it 5 stars. The other 45% of ratings ranged between 1 and 4 stars. The comments, however, were evenly split, 50/50. People either loved it or hated it. There was no in-between.

This made me laugh.

As with Toasters, So with Nursing Care

Likewise, many hospitals, in an effort to improve care, send out satisfaction surveys asking patients to rate their nursing care. In my experience, the results are similar to the toaster’s ratings: about half the patients rave about their care. Some mention their nurses by name, elaborating on specific details about their experience.

The other half complain bitterly […]

2017-03-31T10:28:07-04:00March 31st, 2017|Nursing, nursing stories, patient experience|3 Comments
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Worked at Home During the Blizzard? Not Nurses

Photo: MTA New York City Transit / Marc A. Hermann/via Wikimedia Commons

We’ve come through another blizzard here in New York. Many people worked from home that day (we did, at AJN, since the office was closed), or enjoyed the luxury of spending the day safe at home with family. But most nurses had to find a way to get to work.

Long Slog to the Bronx

Many years ago, I worked the evening shift at a hospital for the terminally ill. I was assigned to work on the day of a blizzard. I love my work and had no one to worry about at home, so I was determined to get to the hospital. I usually took a bus across the Bronx to work, but the buses weren’t running. My only option was to take the subway […]

2017-03-20T09:40:52-04:00March 17th, 2017|Nursing, nursing stories|3 Comments
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When a Family’s Faith in Healing Collides with a Busy Hospital Unit’s Pressures

Illustration by McClain Moore for AJN/all rights reserved.

What happens when a family of strong religious faith is determined to continue praying for a young father’s healing even after he dies of a terminal brain tumor in the MICU? The room is needed for other patients; a nursing student and her preceptor cared for the patient during his final hours of life and are now expected to provide postmortem care.

It’s a tricky, somewhat tense situation, and initial reactions among the nurses in the hospital vary. Melody Sumter, the author of this month’s Reflections  (“A Place for Faith: My First Experience of Cultural Competence in Nursing“), was the nursing student assigned to the patient, who left behind a young wife and 10-month-old child.

Looking back on the event, Sumter recalls her competing sympathies at the time, and the way she was gratified to learn that the nursing staff at last found a way to honor the wishes of the patient’s family and also see to their responsibilities to other patients. Writes Sumter:

Seeing this family practice their faith was encouraging for a young nursing student like myself—as was the nursing staff’s acceptance and […]

2017-03-15T11:40:38-04:00March 15th, 2017|narratives, Nursing, nursing perspective, nursing stories, students|0 Comments
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A Public Health Nurse at the Intersection of Birth and Death

by Lisa Dietrich for AJN/ all rights reserved

The January Reflections essay in AJN is called “Touching Death, Touching Life.” The author, Yaffa Vinikoor, is a public health nurse who describes a patient she refers to as Sidney. Over time, she’s come to know the worn furniture of Sidney’s small apartment and the details of his life, such as Arnold, his paid caretaker, and Sidney’s younger wife, who lives separately. Sid has dementia and several other conditions and is in decline. “Sid,” she writes “usually lay slanted, like he’d been haphazardly dropped onto the enormous mattress, hair askew and face contorted.”

The essay explores what it’s like to be pregnant while doing such work. Vinikoor’s situation that summer puts her in relation to two very different currents:

I continued to do my work in the city as a public health nurse with the chronically ill homebound up until the day I went into labor. . . . I continued to walk miles per day, the nursing supplies in my backpack bowing my back and the baby in my belly guiding me forward . . . . As I cared for those whose lives were in steady decline, I thought about what giving birth to new life would […]

2017-01-27T10:31:16-05:00January 27th, 2017|Nursing, nursing stories, Public health|2 Comments
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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