A Writer’s Life
As we move from one year to another, people often reflect on events of the last twelve months. It has been a strange and busy year for me. I signed with a new agent and found a home with a new publisher. I’m launching a brand new series in April.
And in October, my father died.
My father was diagnosed with Parkinson’s disease over 15 years ago. Looking back, the signs were there, but we didn’t know what we were seeing.
Losing one’s sense of smell is an early sign of Parkinson’s, as is a shuffle to the walk and a curling of one hand. My father displayed those signs for many years, but it wasn’t until he was in his mid-sixties that he received his formal diagnosis.
He did very well for the first couple of years, then things became more challenging. It was harder to navigate uneven surfaces, and more difficult to sit or stand for long periods of time. He often froze in place.
Then, three years ago, he broke his hip and went into rehab. Those were some of the worst weeks of his life and he made it clear he would never go back into a facility, even at the end of his life.
That end came on October 19th after his system failed.
He died with my mother and me at his side night and day for a week.
He died at home.
I’ve been asked several times by thoughtful, compassionate people, how am I doing with his death.
This got me to thinking a lot about the struggle of having a parent with a progressive disease.
I can’t recall ever being asked how I was doing with my father’s Parkinson’s. Perhaps someone did, but I can’t picture it.
I realized the answer to “how am I doing?” is – I started grieving the loss of my father fifteen years ago. I have mourned with each progressive step of his disease.
The moment he could no longer attend the opera. The moment he could no longer bike with his friend Marty. The moment I could no longer guess what he was thinking, because his mind functioned differently.
I grieved when he could no longer hike in the Sierra or take long road trips or get on a plane to visit me in the beautiful Pacific Northwest where I live.
I miss my father. But I also miss my father before his illness.
I did not love him any less when he was ill, but watching his life become smaller and more challenging was painful. I knew the cure would not come in time and that he would not have the final years he would have wanted. We did not have the final years I would have liked to have spent with him.
One of the remarkable things about my father was his ability to remain cheerful in the face of his disease. He almost never got down. He faced each new challenge with grace and strength, until he couldn’t any more, and then he was done and he died.
We should all be so lucky, to die at home with people who love us. But no one should have to endure the kind of challenges my father faced.
As I look to 2020, I am thrilled about my new book launch. I love that my father saw the cover, knew the title, and heard about the story. I am honored that he died proud of me. I am grateful he died as he wanted.
But I miss my father and have for a very long time. Now, it’s just permanent.
As I reflect back on 2019, it was a good year, but it was a tough year. It was a year of change and growth, and death. That is the natural course of life, but natural doesn’t make it easy.
I have no words of wisdom for those of you facing challenges, other than to say, I wish for you the grace, humor, and strength that my father demonstrated every day he lived with his disease. I hope that you find pleasure in simple things, as he did, even at the end.
That last week, I read to him the novella A River Runs Through It, and he said to me, “I think all the mysteries of the world are solved in that story.”
Then he asked me what I thought of the father figure, and I said “I think he did the best he could to live a good life.”
Perhaps we’re both right.
Header Photo: Yosemite National Park on Pixabay, click here for the link.
I’m so sorry for the initial and final loss of your father. My mother had a stroke at age 80 and got dementia, but she was mobile. Just confused. I moved her into assisted living.
Then we moved her here to live with us. She was able to go to adult daycare.
Then she had more seizures which made it so she required care in a facility. That is where she passed away on July 2, 2010. She was 95.
I was responsible for her for 15 years. She lived with us for 3 1/2 years of those years. I learned a lot along the way. It is a very rough learning curve, and they call it “The long goodbye” for a reason.
I’m glad you were able to share some important tidbits of your life with him! Peace be with you!
Thank you, Sherry. That’s an amazing thing you did for your mom. Such a long time to be a caregiver. Peace to you as well and wishing you a happy new year.
As someone who lost her parents some time ago, I found your story to be so honest and raw. I now help my aunt as she goes through her end-of-life struggle, and your blog post gives me some real comfort. Thanks.
I’m so glad you found some comfort in this – that makes me feel good. It is such a complex experience to go through this with someone, I hope your aunt goes peacefully. She’s lucky to have you with her.
Losing a parent is never easy, no matter that their age and manner of going. Losing one to a long progressive disease like PD is excruciating. Your post is a beautiful expression of the disease’s long, slow process of chipping away a person’s life. Healing will come. I lost my dad in 2001, and while I’ve never stopped missing him, it doesn’t hurt as much. I regret he never got to read any of my books, or see our kids graduate. And I still had so much to learn from him.
I’m so sorry for your loss, and thank you for your thoughtful comment.
My heart and prayers for you and family.
Thank you – that is very kind of you.
“Under the rocks are the words, and some of the words are theirs.”
❤️
Love, love, love.
Such a complicated mix of emotions and you describe them so well. My Mom has very similar feelings about her father’s death after he suffered a stroke. So glad you got to support him and eachother throughout. He gave us lots of memories and love to hold tight to. ♥️♥️♥️
Lovely – thank you!
Elena, This was so lovely to read. Thanks for sharing something so profound.
Thank you for taking the time to read it – wishing you a happy new year.
Elena, thank you for sharing this. I lost my father in 87 and it still seems fresh. Yesterday, Christmas eve morning, my ex son-in-law died, and now my grandchildren have lost their father, and i a beloved son-in-law. For most its a rite of passage, but for them now just in their 20-s it’s too soon. At any age, losing a father is a complex pain and joy-of-remembrance in one. Hearing the stories of others bonds us all in that universal, yet poignantly individual life experience. Thank you for yours. Mindy
I am so sorry about the death of your ex son-in-law. So difficult for his kids and the rest of the family. My thoughts are with you all.
Your comment about missing the Steve before Parkinson’s resonated with me and put words to feelings I’ve had of him for the last 15 years. Beautifully written.
Thank you – it has been a remarkable journey with him. Love you.