Parkinson’s disease isn’t fatal. It’s the “complications” that kill you.
If you Google Parkinson’s disease, you will likely learn that the disease itself is not considered terminal, and/or that Parkinson’s patients die because of its “complications.” In my thinking, that’s like claiming that the bullet didn’t kill the murder victim, it was merely complications stemming from the bullet piercing through the victim’s body that killed them.
My mother had Parkinson’s, and she died with it, but I want to say “from it.” It took six years from her first symptom to her final breath. I remember walking with her through the Atlanta airport and noticing she was shuffling her feet a bit. I asked, “Mom, why are you walking funny?” She said, “I don’t know.” Coincidentally, I learned about Parkinson’s in nursing school just a few weeks before this trip to Florida for my uncle’s funeral, and sadly, I knew exactly what I was witnessing.
Then came the tremors in her hands. Dad purchased weighted silverware for her to use, which significantly reduced the shaking of her hands during her meals. However, she complained that they were “too heavy” and refused to use them most of the time.
Her face adopted the classic mask-like appearance, her cheeks drooped, and her mouth turned downward. It resembled the face of a sad clown. Mother had always had a lovely smile. My father often said, “She was easily the prettiest woman” at the college where they’d met.
Slowly, one-by-one, she stopped doing her favorite things. It’s been several years, and I no longer remember the order in which she gave up her routine activities and hobbies. My mother had always been a classy lady; she wore pretty shoes and clothes with a precise amount of jewelry accessorizing everything. Whether she wore a formal dress or a leisure suit, her hair was styled, and her makeup was beautifully done. Mom’s classy appearance faded. She turned into a frumpy-looking woman with baggy clothes, often mismatched, shoes with no socks, hair barely combed, no makeup, and no accessorizing jewelry. One day, out of the blue, she decided to do her eyebrows and walked into the kitchen sporting eyebrows that looked like she’d drawn them on with a melted black crayon. I was stunned but didn’t say a word. She tried.
Mom loved playing her 1920’s Euphona upright piano. Parkinson’s caused her to quit that activity that gave her so much joy. She also loved her African Grey parrot named Kokie Poo. Mom worked around Kokie’s cage every day, sweeping and laying down fresh newspaper underneath. Then, one day, she just stopped doing all that. Time went on, and eventually, Mom didn’t interact with Kokie at all.
As Mom’s swallowing ability was dwindling, she constantly drooled and kept a washcloth in her hand. Her medicines had to be crushed and given to her in spoonsful of pudding. Once it was evident that Mom was no longer able to nourish herself with food, a feeding tube was placed in her stomach. Before the procedure, I asked my mother, “Are you doing this for you or for us?” She pointed to herself, and I told her that it was good. I didn’t want her to undergo any type of invasive procedure just for us.
Mom spent the last year of her life getting her liquid meals and medications through that tube directly linked to her stomach. She was admitted to hospice and was cared for in her home. Her hospital bed was in the living room, my father sat right beside her in a recliner, holding her hand. I spent most of my time on the loveseat directly across from them. Even though I’d been a nurse for several years, I had never witnessed Cheyne-Stokes breathing, until I saw my mother doing it. We’d stopped her tube feedings. She was receiving sublingual liquid morphine to keep her comfortable. My mother’s doctor cited “pneumonia” as her cause of death, but she didn’t struggle to breathe. There was no cough. She merely fell asleep, and several days later, her spirit took flight.
I’ll never forget the day Mom died. It was in early October 2013. As I was standing outside my parents’ house watching the hearse carry her worn-out little body away, a strong gust of wind swept through, and I could feel her presence. My mother was free.
The day before the funeral, I wrote this poem to be read graveside:
Goodbye for now, Mom
We watched your body slowly rob you
Of doing the things you enjoy
It was hard to witness this sweet life
That Parkinson’s did destroy
Day after day we felt helpless
As we saw you fading away
Our hearts so tightly held you
But in this world, you could not stay
And now you are at peace, Mom
In a place where you can run
You can sing and play the piano
And dance around in the sun
Mother, I will deeply miss you
For into Heaven you’ve been cast
You were there for my first breath
And I was there for your last
There’s nothing you can’t do now
Your spirit is truly free
And I know deep in my heart
You will always be with me
Until we meet on the other side…
I love you, Mom