Anticipating the guilt I might feel when my parents die
How my dad with Parkinson's approaches mortality, and how I do
I recently saw a social media post from a friend who’d lost her dad. It turns out that her dad and mine shared a birthday, but her dad was six years younger. The post left me puzzled. How was it that my friend was clutching a hole in her chest where her dad’s presence used to be while my dad with Parkinson’s disease was still texting me every morning? Why was it that death claimed her dad and not mine?
The truth is that mortality doesn’t make sense. Grief doesn’t make sense. And the way of the world — even though it’s often predictable — still leaves us trying to reason with death.
What makes this reality even more confounding to me are my dad’s chronic illnesses. Beyond Parkinson’s, he also has ulcerative colitis. He’s spent years preparing me and my siblings for his death, drafting his will and testament and instructing us about the responsibilities we’ll adopt once he’s gone. (And my mom is similar. She smiled with pride when she told us that she’d finally paid off her tombstone. Ha. What the heck?)
The thin line that separates us from life and death feels delicate and unreasonable. And most of the time, Dad’s Parkinson’s only makes this reality feel more present. He’s sick. He’s been sick for a long time. Every time I go home, I witness a little bit more of the degeneration that the disease causes.
Living with what’s uncertain and yet certain
It causes me to ask: Am I interacting with my parents the way I’d want to be interacting with my parents if I knew their days were limited? Do I make my way home enough to wash away any guilt that comes with being an underperforming daughter? When death does come, will I have eased my grief by supporting them in life?
The truth is that I don’t know. But I do take comfort in knowing that I chose to operate with intentionality instead of leaning into habit.
In some ways, I’m grateful to Parkinson’s. I know that idea seems crazy. How could I be grateful for a disease that takes away so many of my dad’s abilities? But it’s like this: Parkinson’s is a constant reminder that the future isn’t guaranteed. I could lose not just my dad, but both of my parents at any given time. It’s the natural cycle of life. And this reminder seems to give me the opportunity to live with more consciousness.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
John Citron
Mary Beth,
You may be visiting with intent, but you are also cherishing your time with your father knowing that his time with you and your siblings is shorter. It's hard to explain but I did the same with both my parents. We all lived together even until the end and even while we were in the same house, my brother and I sat with them both spending time listening to their stories, sometimes over and over, just like we did with our grandparents, and we never regretted doing this.
John Waltz
Mary Beth please don't even consider that you are an "under preforming daughter." You've taken the time to invest in the lives of your parents. That's obvious. And you have even taken the time to share your thoughts (feelings) with others. That's a big positive!
I agree with you that you could loose one or both of your parents - at anytime. This is called life. No one will leave this earth alive. Death is certain! But I disagree with you when you said "..the future isn't guaranteed." I, for one, & I'm sure there are others who know"for certain" what their future is going to be & where I (they) will spend it. I know where I will be 100 - 200- 500- 1,000 - & even more yrs. from now. And best of all - so can you!
It's not about anything I have done, or what I can do or even what I will or should do. It's truly about what was done for me. Spend your time looking into what has been done for you - & by Who did it for you & your worries should melt away!
I have MSA & my life here on this earth isn't getting any easier (each day) but my time - my life here is only for a very, very short time compared to eternity (that obviously means forever).
The answer to what I'm referring to is a man called Jesus Christ. Check Him out.......