Christmas Wish List:Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Title: Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Author: Frances Shan Parker

This book is available at bookstores such as Barnes and Noble and at Internet websites such as Amazon.com.


A Hospice Volunteer Meets Her New Patient

Pointing her out to me, the nurse aide said, “That's Henrietta sitting by herself at the table.” I followed her finger to an oatmeal-colored woman who sat humming while folding a napkin. She had just finished eating and still hadn't wiped her mouth. A light coating of chicken grease looked like high-priced lip-gloss when I walked closer to her.
Henrietta was going to be my new patient, my first at this particular nursing home. Later, she would become my first patient whose health improved so much she was discharged from hospice care. For now, she knew nothing about me, including the fact that I was coming. I only knew she was seventy-nine and declining mentally with a form of dementia. I pulled up a chair next to her and said, “Hi, Henrietta. I’m Frances Shani Parker.”
Looking me straight in the eyes like she’d known me all her life, she responded, “Girl, I know who you are, long as we've been friends. I’ve been waiting for you all day. I kept wondering when you were coming. I hoped you hadn’t forgotten me, and here you are. What took you so long to get here?”
“Well, actually I got lost,” I stammered, processing these new details concerning my whereabouts.
She laughed and said, “Shucks, I get lost all the time. When you get lost, go to the lady at that desk over there. She’ll tell you where you are. She’ll tell you where you want to go. She knows everything. I’m surprised you didn’t go to her before. We all do. How about some dinner? The chicken is something else, nice and tasty, just the way I like it. And I ought to know because I just had a wing that almost made me fly.”
“No, thanks. I’m not too hungry now. I’ll eat when I go home. Some leftovers are waiting for me. I just came to visit you. I want to know if it will be okay with you if I come see you every week.”
“Okay with me? Of course, it’s okay. Look at all the years you’ve been coming to see me. If you stopped coming, I’d be wondering where you were just like I did today. So much is on the news, I’d be worried something happened to you. Keep on coming. I don’t ever want you to stop.”
“I’m looking forward to seeing you, Henrietta. We can talk together, and I can take you on wheelchair rides when I come. We’ll get to know

each other better, that is, better than we already know each other,” I added, remembering our extensive “history.”
“Sounds good to me. It’s been working for us a long time. I think what you need to do now is eat something. You must be hungry after being lost all that time. Call the waitress over here and order some food. Don’t worry about the money. Just put it on my tab. They know me at this restaurant. I eat here a lot.”
So, this was Henrietta, an interesting oasis of serendipity. What would the future hold for us as patient and volunteer? I smiled to myself, buckled my mental seatbelt, and prepared for another intriguing ride.
Henrietta was a patient who had dementia, a group of conditions that gradually destroy brain cells and lead to mental decline. Many conditions can cause dementia, but Alzheimer’s (Ahlz-high-merz) disease is the leading cause. Most people who have the disease are over sixty-five, with eighty being the average age of diagnosis. According to the Alzheimer’s Association, the disease, which advances at different rates, destroys memory and the ability to learn, reason, make judgments, communicate, and perform daily activities. Patients may also experience changes in behavior and personality such as anxiety and delusions. There is no cure for patients with dementia, and eventually they need complete care. The quality of life improves for dementia patients and caregivers when they receive effective care and support.
Working with patients who had dementia introduced me to an interesting world of adult fantasy. Henrietta was one of many patients who kept me on my mental toes when we interacted. Patients with dementia enjoyed talking and hearing about the past. Frequently, they embellished their stories. Sometimes they remembered detailed incidents from childhood, and minutes later, couldn’t remember where they were. They needed encouragement when they became afraid. If they became angry or paranoid, I tried to figure out the reasons why. Distractions helped patients change their thoughts. Just like everyone else, they felt respected when their opinions mattered, so I let them make some decisions, usually limiting the choices to two, so they wouldn’t feel overwhelmed.
I often wondered what it would be like to experience life from these patients’ perspectives. I wrote the poem “Pieces of Our Minds” to capture aspects of their reality.

Pieces of Our Minds
On the border, on the brink,
we shiver like quivering tears
swollen to fullness with distress,
reluctant to spill an excess.

Strapped in delusions
wondrous and weird, we ride
roller coasters of reality
through joy and fear.

On the brim, on the rim,
like balls circling in frustration,
we scramble for thoughts
lost in nets of uncertainty.

Invaded by memories,
peeping, creeping, weeping,
we laugh and cry to the
rhythm of nostalgia.

On the fringe, on the edge,
changing, adjusting, impacting,
we crave compassion in our
search for society’s sanctuary.

© Frances Shani Parker

Frances Shani Parker is an award-winning writer, consultant, and former school principal. She is author of the nationally endorsed book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” With stories, poems, and general information, she presents a captivating account of her hospice volunteer experiences in Detroit nursing homes and her insights on caregiving, death, and bereavement. Her website is www.francesshaniparker.com.