The Journey of a Lifetime: One Nurse’s Experience in Home Health Care Linda J. Kerr; MSN RN NP-C CRRN

Before we go any further, let me say that I hadn’t planned on being a home healthcare nurse. Twenty years ago, fol- lowing my husband’s job transfer, I an- swered a newspaper ad for a temporary home healthcare position until I could survey the lay of the land of our new city and state. In 1984, home healthcare agen- cies, beyond the well-established Visit- ing Nurse Service, were just beginning to be recognized members of the health- care continuum. I wasn’t particularly proud to be working as a home health- care nurse. After all, I had worked in an acute care hospital for 9 years, and I thought that’s where the brightest and best nurses worked. It wasn’t on Oliver Street up flights of rickety stairs to a dingy, one-room apartment, and it wasn’t on Road 730 North in the middle of a cornfield, that was for sure!

My acute care experience began in a medical-surgical unit, followed by 8 years in a neurosurgical unit and NICU. I al- ways admired the nurses in the unit who had the most experience and had devel- oped the ability to think on their feet. Back then, I wondered when that would happen for me. It would surely never hap- pen in home health care-or so I thought.

The agency that hired me was very ex- cited to have a brain and spinal cord “ex- pert” on board. My first assignment was in the home of a 19-year-old high school track star, Jillian, who was losing a short, but brutal battle with glioblastoma. It was summer, and the stale, still air in her house was thick with the smells of fried bacon, bleach, and death. The days dragged as I became accustomed to the slower pace of one-to-one care. The work was backbreaking; she was situated in an old, manual hospital bed, and there was no one to call for help when she needed to be turned or I needed an extra pair of hands. She was confused and restless at times, somnolent and still at others. Soiled linens were to be rinsed in the

bathtub before they could go in the wash- er. I bathed her from a plastic bucket and spoonfed her pureed food from a blender. There was no Physician’s Desk Refer- ence to consult when I struggled with some of her cancer medications. I took my daily instructions from her grieving mother before she left for work. Jillian died peacefully at home with her family at her side. And I was out of work, tem- porarily. Whether the patient recovered or didn’t, I would learn that I was con- stantly working myself out of a paycheck. Welcome to home health care!

Soon, a variety of other interesting as- signments came my way. There was a premature infant on a ventilator whose father was rumored to be selling cocaine out of their apartment. Then there was Ben, a teenager living with muscular dys- trophy with a go-getter mother who was on a mission to have their school system make his school fully accessible, or pro- vide the necessary accommodations to allow him to fully participate in his class- es. This was several years before the Americans with Disabilities Act was passed, but I was being groomed for that battle by watching the “experts.”

Ben has been gone for nearly 15 years now. His mother heads a FirstStepsTM program for disabled children, ensuring that their earliest healthcare needs are met. Through Ben’s mother and many other families to come, I learned of the everyday stfuggles of living with chron- ic illness. The battles never seem to end for these parents. Long after their chil- dren are grown or die, these parents press on in many areas of disability advocacy. This is home health care!

By the end of that summer, I was per- manently assigned to care for Donald, Mick, and Steve. All were in their late teens or early 20s, living at home, and be- ing cared for primarily by their parents. Donald and Mick had sustained spinal cord injuries in water accidents, halting

promising college and sports careers, and Steve had muscular dystrophy. Steve was good friends with Ben, and we spent many hours just “hanging out” together, even though I was officially on duty.

That is a unique thing about home health care. Because many of the clients know one another through circumstances tied to their disability, such as summer camp or shared caregivers, a kind of fam- ily forms. I watched sadly at Ben’s fu- neral as dozens of MDA camp friends filed past the casket in their electric wheelchairs and braces to say their good- byes. Their friendships were forged by tendon releases, bouts of pneumonia, and bladder infections, but also by the gritty determination to have fun; play, and dream like other kids their age. How poignant to know that each faced his or her own death smack in the face every time they said goodbye to another friend.

Steve was a story all by himself. Di- agnosed at age two with spinal muscle atrophy, he had undergone many skele- tal surgical procedures in his life. Fate wasn’t done with him yet. A surgery in 1982 for rod insertion in his back to straighten his scoliosis required blood transfusions. One of the blood units had the AIDS virus in it and Steve’s name on it. He found out that he was HIV positive 2 years later. He later filed a lawsuit and won a landmark decision against a na- tional blood supplier for its failure to ad- equately screen blood products for blood- borne pathogens.

Devastated, but determined, he decid- ed to live out his days with zeal. So he and his nurses enrolled in college part-time. We became avid speakers in local schools about HIV and its transmission. Steve was a Brownie leader for a group of disabled Brownies. He volunteered at the zoo in the reptile area, and thus began the gray- ing of my hair as we transported “pinkies”

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R E S O U R C E R E V I E W S amputation, and an overview of “other” types of disabilities also is presented. Some of the content is graphic (line draw- ings) and descriptions of sexual activity are explicit. This approach may be disturbing to some, but many will appre- ciate such a direct approach. Nurses

providing sex education will find this book helpful for increasing their own un- derstanding of the issues, and many pa- tients and families will appreciate the di- rect, no-nonsense approach to a topic that should not be overlooked in rehabilitation settings.

No Limits Communications, PO Box 220, Horsham, PA 19044,2001, $15.95, 21 3 pages, ISBN 0-97 12842-0-2.

Reviewed by Catherine Warms, PhD RN CRRN, postdoctoral fellow at the University of Washington, Behavioral Nursing, in Seattle, WA

P E R S P E C T I V E S continued from page 172

from the pet store for all of the reptilian friends who share his bedroom to eat. He (we) variously held such part-time jobs as switchboard operator at Sears and aquar- ium sales at several pet stores.

Steve had a tracheotomy tube in place, was artificially ventiliated regularly, had permanently dislocated his hips, and was tetraplegic with only minimal use of his hands. Tragically, his death was hastened by one of his caregivers. A night shift nurse with a substance abuse problem re- moved morphine from Steve’s PCA pump, replacing the liquid with tap wa- ter. Although Steve’s weakened immune system had fought and won many battles, the contaminants in the water was more than it could handle.

I learned enormous lessons from Steve. I learned about raw courage in the midst of severe pain. I learned how to “cruise for chicks,” one of his favorite pastimes on our way to and from ap- pointments. I learned to correctly docu- ment records that were needed by patients in lawsuits. But most of all, I was really learning home care.

Steve “directed” his own funeral ser- vice, including pictures of beloved pets and lots of his favorite music-songs we had sung at the top of our lungs during hours of ROM, suctioning, and percus- sion treatments. He left a letter behind for all of his friends in which he said, “Be- cause of my illness I did require so much help and assistance just to function and survive. I wish many times I could return the favors, the help and the time. But

many times I was unable to. All I can say is thanks from the bottom of my heart, and I love all of you for what was done for me.” No, Steve, thank you. You made me proud to call myself a home health- care nurse. Not everyone can do this job, it’s too heartbreaking.

Beyond death, Steve left a legacy. En- acted by the General Assembly of the State of Indiana in 2001 is Steve’s Law (P.L. 154-2001), making drug diversion by healthcare providers a Class A felony if the offense results in death of the patient.

Steve, Mick, Donald, Dan, Molly, Me1 ... the stories are endless, the marks they’ve left on my life indelible. Because of them, I became a true advocate for pa- tients and families. I cofounded a chapter of the National Spinal Cord Injury Asso- ciation, and many of my patients were ac- tive members at that time. After hearing the same stories of struggle and bone- numbing fatigue in kitchen after kitchen in the homes where I worked, I facilitat- ed a family support group that sometimes was little more than a reason to get out of the house. I testiied in Medicaid hearings and lobbied with patients and families at the Indiana Statehouse for funding of a program that, in 2000, provided nearly $40 million for the home healthcare needs of the elderly and disabled in Indiana.

Today, I am certified as an adult nurse practitioner and work as a clinical nurse specialist in neurology and rehabilitation in an acute care health system. Am I still a home healthcare advocate? You bet I

am, and proudly so. I now know that this role requires a savvy seldom required in other settings. Critical-thinking skills blossom fast when there are no ready ref- erence books, no second sets of eyes, and no colleagues with whom to collaborate. Measurable outcomes occur when you take your instructions from a parent who is a high-school dropout living in a filthy rental and can still maintain asepsis. Leadership skills take root when you rec- ognize that you are a ‘‘necessaq evil” in someone else’s home, expected to know how to troubleshoot the ventilator, suc- tion machine, oxygen concentrator, and anything else plugged into an outlet. Skin thickens in response to the very real dan- gers home care professionals face when driving to Timbuktu and back in the mid- dle of the night to unclog a feeding tube, obtain peak/trough blood levels, or an- chor a catheter.

This is nursing. This is who I am, and I bring these experiences to every trauma bed I stand beside in the surgical trauma intensive care unit today. I utilize lessons learned in home care with rehab patients and their families. I never could have imagined where this journey would lead by simply answering an ad, but it has made all the difference in my life and career.

Linda Kerr is a clinical nurse specialist in Fort Wayne, IN.‘ Address correspondence to Linda Kerr, 10611 Lantern Bay Cove, Fort Wayne, IN 46845.

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