Parkinson’s & the Impact of Prolonged Illness on Grief

What is the impact of prolonged illness on grief? Does it give us time to get used to the idea of death? Does the anticipation in some way lessen the sting of loss?

I think on these questions as we mark Parkinson’s Awareness Week and World Parkinson’s Day, April 10th on the 2019 calendar. My dad had Parkinson’s. His symptoms began in the late 1990s, but doctors initially believed mini-strokes caused his shuffled gait.

I remember the phone call. My mother was on the other end. A neurologist diagnosed Dad with Parkinson’s disease. The year was 2000. She sounded relieved. Almost happy. I understood why.

We think that if we have a label, we get a cure, or at least a treatment, while not knowing is hellish. I think my mother and father also were initially ignorant about what the diagnosis of Parkinson’s meant. I liked to read about medical things. I knew Parkinson’s was one of those awful diseases.

Though I was educated about Parkinson’s, I, too, remained in a cocoon. My father still worked, still functioned almost normally. Whatever deterioration lay ahead of him – lay ahead of us – was years in the future.

But not enough years. Dad’s hands began to tremble. His movements slowed. He retired early, in 2003, I believe. Within a few years, he slurred his words, some days so badly we could not understand him. He needed help dressing. He couldn’t fix his own food anymore, not without making a mess. We bought him special utensils and a rolling thing to help him walk. He fell once and got a black eye.

“What are people going to say?” he said on our way to church one morning.

I told him, “Tell them, ‘You should have seen the other guy.’”

I beamed when he delivered the line. I had helped restore my dad’s dignity.

Another morning, on July 9, 2006, we arrived again at church. He sang clearly and loudly as though what Parkinson’s had taken, God had returned.

A few hours later, Dad was dead. The coroner said it had been a heart attack. While Parkinson’s had not killed him, my dad’s suffering was over.

Was I better prepared because of his prolonged illness? No, not at all. I fell to my knees and wailed when I learned he’d been taken. Of course, I had known he would die. Years in the future.

But not enough years.

Anticipatory grief may help some prepare for loss while others deny that death will come today. And that in itself is a coping mechanism. If we carried tomorrow’s woes on us today, we may not be able to enjoy the moment. In my denial, I was able to be a loving daughter instead of an anticipatory griever. My time to grieve eventually came, and I grieved with all my heart after Dad was gone.

We take life for what it is. If we know a loved one is terminally ill, we grieve or we deny, or we do a little of both. If we learn of a sudden death, we gasp, filter through the questions, and pour out our heart.

Whatever way we grieve – and whenever we grieve, before a death, afterwards, or both – it is the right way to grieve. There is no shame or condemnation for mourning because of the pronouncement of a terminal illness, nor for full-throated grief after someone’s suffering has ended.

Someday each of us will die. How does that change the way you treat a loved one? Maybe today is the day you tell that person how much they mean to you.

Copyright © 2019 by Toni Lepeska. All rights reserved. www.tonilepeska.com