Why is the “Your Caring Presence” training program important for direct care workers? Here's a first-hand story from a former direct care worker's perspective . . .

“I need you to go do post-mortem care on Mr. McCormick,” the charge nurse ordered. POST-MORTEM CARE??? But that meant . . .

Suddenly lightheaded, I stood in a fog in the hallway after the nurse hustled off to do evening meds. I drifted up the hall to Room 114, took a deep breath and lifted a shaking hand to the cold metal door.

It was 1981. I was 20 years old, working 3-11 shift as a nurses' aide to put myself through college. Training for this job had consisted of three days of demos and practice - how to bathe, lift, transfer and feed residents. Death wasn't covered.

Mr. McCormick, or Mac, as he'd invited me to call him, had become like a second grandfather to me in the year I'd taken care of him. When I brought his dinner tray each evening, he quizzed me on my college courses. He was a former university professor and I think he figured I'd be the last student to ever listen to his lectures. He inquired about my latest test grades, barking “Bravo!” when I reported A's or B's, fussing at me about anything less. He grilled me about my boyfriend: did he treat me well? Was he “marriage material”? Mac's favorite lecture was, “You can do good things in this world - don't screw up.” His second favorite was, “If you do screw up, admit it and learn from it.”

In November, he gave me a small wooden reindeer with a jaunty red bow that he'd made in the Activities Department.

“I only went down there because it helps those activities people think they're 'improving my quality of life',” he explained. “Besides, Bingo would kill me.”

A few weeks later, he gave me a four-car wooden train set he'd made. Suzanne, the activities director, told me Mac had worked on that train every afternoon for weeks.

“I only went back down there because TV is nothing but reruns,” Mac rationalized.

Occasionally, Mac would put his gnarled hand over mine, squint at me and say, “Thanks for taking such good care of a mean old cuss like me, Mellie.” No one else had ever tried to get away with calling me “Mellie”. But, since it was Mac, I hadn't minded.

During that year, I struggled with Mac's tears, fears, and fury. I had no idea what to say when he railed about being unable to walk down the hall without help. I witnessed his humiliation at needing to have his bottom wiped by a “skinny spit of a girl still wet behind the ears,” but I didn't know how to acknowledge his feelings in a sensitive way. When he cried silently one evening because he couldn't remember his grandchildren's names, I muttered some worthless platitude like, “Oh, I forget things all the time” then hustled out of the room because I couldn't stand to see him cry. When I tried to offer bits of sympathy for all of Mac's frustrations, he'd mutter, “Aw, hell, I'll persevere.”

His bedside table was filled with pictures of children and grandchildren who never visited. Now, as I walked into his room for the last time, I had no idea what to say to the daughter and granddaughter who sat beside his body crying softly. I blurted out that I had to do post-mortem care, and in the awkward silence that followed, they got up and left.

I didn't know the first thing about post-mortem care, other than the quick “to do” list the nurse had rattled off in the hallway. I fumbled through it, spilling water as I bathed him. I tripped on the pile of soiled Chux I'd put on the floor. I wasn't prepared for how cold his body would be, or how heavy. I moved him awkwardly, and left a long fingernail scratch down the middle of his back. My own tears over not having had the chance to say goodbye to Mac splashed onto his left foot before I pulled the bedsheet back up over his body. I couldn't bring myself to pull the sheet up over his face. Then I heard Mac's voice saying, “Persevere.” I did what had I had to do.

I don't work as a nurses' aide any more, but for the last year, I've been privileged to work with Hospice of Lancaster County and the Workforce Investment Board to create a training program for direct care workers on caring for people at end of life. The training program is called “Your Caring Presence” and it helps workers learn how to listen and respond sensitively when a person is angry or depressed about needing help with basic activities like walking or eating. The program covers how to make the dying person as comfortable as possible through devastating symptoms like loss of appetite, difficulty breathing and persistent pain. It helps workers understand how to maintain someone's dignity when they're suffering the indignity of a loss of bowel or bladder control, or when they can't remember who they are or why they're here. The program explains how to offer comfort and support to family members. It even explains exactly what to do when the final moment of a person's life arrives . . . and how to deal with our own grief at the loss.

At the end of the training program, we share a quote from Dame Cicely Saunders, the founder of the hospice movement. She said:

“How people die remains in the memories of those who live on.”

I often think of Mac and of how he died, and oh, how I wish I had known then what I know now. But I like to think somehow Mac knows that, although I screwed it up the first time around, at least I've learned from it.

We know that direct care workers receive excellent training and preparation for their work. We also know that providing the best possible care for patients/residents as they approach end of life can be one of the most challenging, yet most meaningful aspects of the direct care worker's job. Our hope is that the “Your Caring Presence” training will enhance direct care workers' competence and confidence in knowing how to effectively support patients/residents and their families at end of life.

I hope you'll consider encouraging your direct care workers to complete the “Your Caring Presence” training. Please feel free to contact me if you have any questions about the program.

Sincerely,

Melanie G. Snyder, former direct care worker
Project Manager, Healthcare Initiatives
Workforce Investment Board of Lancaster County
Phone: (717) 361-2722
Email: melaniegsnyder@yahoo.com