Watching my father’s Parkinson’s progression with anticipatory grief
I realize I have a finite amount of time to bridge the gulf between us
Over the past few years, I’ve seen a lot of my friends go through the heartbreak of losing a parent. In most cases, the loss was sudden, like a lightning flash in the darkness. There was little buildup. There was no warning sign. One day their parent was alive, and the next day they were gone.
My heart aches every time I see this human process unfold. Even though losing a parent is natural, it also seems to be lonely — a devastating yet human experience.
My grief is different. It’s slow and quiet. It creeps in around the edges at the strangest times, reminding me about a looming death instead of a death that’s already come to pass. It’s anticipatory grief.
It rears its head when I notice the progression of Dad’s Parkinson’s disease. I feel it when I visit him for Christmas, and it’s clear he’s changing, that the disease has claimed something else. He has less mobility. His voice is soft. He’s freezing more than he did.
Assessing our separation
What further complicates the ache in my heart is the reality that my dad and I often don’t get along. Our basic moral philosophies and the way we see the world are different, so we’re often teetering on the edge of an eruptive conversation. We’re polarized.
I both crave closeness with a parent who always seems to be on the brink of death, and I don’t know how to have it. I want to be mindful of every moment I have left with my dad, yet our ideologies and perspectives create a natural separation between us.
How do you cherish the little time you have together when you’re so fundamentally different? I don’t know.
I don’t think you can or should measure grief. But I do think it comes in many forms. Friends who’ve lost their parents often feel robbed of time. Some of them experience regret, wishing that certain things hadn’t been left unsaid.
I wonder if I say too much to my parents. Can you let bygones be bygones in the light of mortality? Can you just pick up your phone and send your parents a “good morning” text despite your extreme differences?
In most ways, Parkinson’s has been a curse upon my dad. But in some ways I’m grateful for it. The reminder that life is finite has given me more conscious time with him. The closeness of loss or even death is a constant tap on the shoulder, telling me to spend my time well. Or at least to be conscious of how I’m spending what little time we have left.
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
Gail pZwiebel
I can appreciate the author's pain while watching his Father's slow decline. My Dad had a serious coronary at 50 y.o., while
I was a Senior in college. Without realizing how deeply it affected me it made my last few weeks before graduation emotionally difficult. I lost all desire to even be in school so finals and term papers were not at all up to par but I managed to graduate before heading out on a planned 7 week Euurail pass trip around Europe. Upon returning to the States I was happily distracted by securing a job, moving into an apartment, working my butt off as a brand new R.N. and making new friends.
I was happy but the thought that my Dad could die at any moment almost never left my mind. I remained constantly prepared
for the call from my Mother telling me he was gone. When mini crises occurred I just told my sisters to not panic but definitely expect the worst. Handling his condition in that manner gave me some anticipatory protection. Fortunately my Father lived another 25 years but I too witnessed his slow decline as a Cardiac Cripple. He was up and around but slowly lost his memory and eventually stopped seeing any patients in his Psychoanalytic practice. My Mom passed away first and although she too was no longer her old self it was a shock when she left us. I knew my Dad could not survive without her so I was not surprised when he too passed away just a month later. Truth be told I had some sense of relief because during the last year of their lives other than visits from their daughters and grandchildren there was little left for them to enjoy. They were just filling a space, going to MD appointments, and waiting to die. Another truth to be told is that I miss them more now than I did in the period following their funerals. I have Parkinsons and as I get older I would so love to have their support and knowledge about the whole aging process in general; not just about this debilitating disease. Just when I think I have come to terms about what is in store for me down the road, I get that anxious pit in my stomach, something my Dad was an expert in helping me understand and overcome.My only regret its that I wish I could've spent more time with my Dad at the end but living 2000 miles away and being right in the middle of raising my own young family, it was very difficult to just pick up and fly halfway across the country. Because that is my regret it is actually the only advice I give to people our age when it comes to dealing with their aging folks. Take the time to just spend the time and leave all the differences behind to discuss at a future time with a good therapist. It is also helpful to understand the differences using a historical point of view. For me, thinking about the struggles my parents went through with their own immigrant parents, then the Depression and then WWII, I was better able to understand the conflicts we had during the turbulent 60's, and then to leave those issues behind. You have been lucky to have a Father in your life even if it has been less than a happy ride. Like it or not he has taught you alot, even about the kind of person you'd rather not be.
Sally smith
Yes let bygones be bygones. Develop relationship from the here and the now. Can’t go back and change things so move forward. Let your dad know you love him and appreciate all he’s done for you and your family! Be empathetic, he has a story too. Often we don’t think of our parents as people….we only remember how they didn’t measure up to our expectations of what they should have been.
In addition to all of this, your dad’s brain chemistry is changed so it would be too much to expect major relationship changes from him.
Brian Rheault
You do your best because your best is all you can do.
Verna Quadras
Words just taken from my heart.
kiki j
The fact that she says she is grateful for it is shameful! If she gets it lets see if she's grateful.
Beatrice Leyba
Your sentiment is difficult. My husband has Parkinson diagnosed 2019. The decline is tough.
It is a steady fear of the inevitable decline to the last breath. After a few years of a separation we moved back together. Eased into a new closeness. Forgiveness and renewal. Which allowed for closeness in spirit.
Hope in time you get to that peaceful state
Patricia Haynes
I have Parkinson’s. I’m mid stage 3 but absolutely refuse to allow anyone around me to grieve, make me a victim or treat me like an invalid. Yes, there are things I need help with. For example: I can’t get a bra on to save my life. I have to lift my legs to get into most cars. I drop things. I fall down. I get grumpy and frustrated.
I know where this is heading as do those around me. We talk about it, openly and honestly. I laugh…a lot. I encourage those around me to laugh at me and with me. The more we talk, laugh and move together, the better things are. The more I do on my own, the longer I’ll be able to do more.
Please, be encouraging. Be positive. Be loving. Keep moving. Don’t be embarrassed and don’t allow anyone to embarrass the person with Parkinson’s. Treat them as you would treat anyone else and Educate everyone about Parkinson’s!!!