At age 57, I made the decision to leave my seaside home in Santa Cruz, California and move into a converted 192 s.f. studio within the home in Silicon Valley where my parents have resided for the last 38 years.
Eighteen months later, I am their Attorney-in-Fact and manage their daily affairs for both business and health care. My distant siblings are largely uninvolved in their daily lives.
Because I’m single and my four children are all adults living on their own, I was in a position to make this choice. I have surrendered this stage of my life -what I once thought would be my time, to be fully present in theirs.
Currently, I am the chef, chauffeur, resident physician, pharmacist, estate manager, and errand boy.
As I watch my father die, I observe
As I watch my father die, I observe his painful decline and despair. And despite the incredibly emotional impact of this up close and personal view of his final months, it’s an experience I wouldn’t trade for anything. It has been, as a dear friend recently reminded me, the greatest gift he could ever give me.
I observe that although he isn’t in physical pain or undergoing the exhausting rigors of chemotherapy that some I know are presently enduring, his daily skirmishes with Alzheimer’s Dementia and Idiopathic Pulmonary Fibrosis (IPF) are painful in their own way and each are losing battles – both are incurable and largely untreatable and they deplete his energy reserves by the minute.
I observe that Alzheimer’s robs him daily of his short-term memory; He cannot recall anything said more than two minutes previously. a few months ago it was about 30 minutes but in recent weeks he has declined overall very rapidly. It also has robbed him of the ability to appreciate the tender moments my mother clings to, such as their recent 65th wedding anniversary.
As the day of celebration neared, I purchased a card for him to personalize and give to her. To her surprise, and mine, it was blank when she opened it. He cried a little and said he didn’t know what to do with it.
I observe how IPF is an equally cruel malady that makes its presence known with every labored breath. IPF is the gradual hardening of the elastic tissues within the lung tissue. Over time, his lungs have lost the ability to expand and contract with relative ease. Instead, he breathes rapidly in and out restricted by ever-stiffening resistance. It’s an activity that itself exhausts him and makes him even more short of breath.
His disease states simultaneously limit his ability to recall the names of those he is too weak to converse with.
From my front row seat, I observe how difficult it is for my mother, his spouse of 65 years, to let go. She battles with the simultaneous foes of grief and one of its subsets, anger. She’s angry because his incessant demands create within him a continual sense of unmet needs. She struggles to keep up as she is 83 and not as ambulatory as she used to be.
Granted, she has her own challenging aspects as well, and they are too many to mention here. However, her struggle is nonetheless real to those who see it and have shared it. Conversely, those who cannot see -or choose not to see- cannot come close to understanding the world she inhabits.
As I watch my father die, I learn
As I watch my father die, I learn how I will approach my own mortality and death. It would be dishonest to write that my dad’s approach to his own mortality is one of bravery and compassion. I’d rather that was the case, but it isn’t. He operates with fear and dread. His faith, that once offered hope and comfort, provides neither to him these days and he’s declined my repeated offers to arrange for pastoral visits.
While many of his better qualities are expressed in my own life -compassion for those in distress, a natural love and appreciation for small children, and a Southern gentleman’s chivalrous tendencies- we differ in our approach to life and death.
His view of mortality is laced with overt doubt, negativity, and the gradual loss of the will to fight.
He knows he is near the end and often tells me so. Most mornings, after my return from the gym, he and I sit in the living room and share some coffee and limited conversation. He always asks if I’ve heard from my children and inquires about my grandkids.
Recently, he’s become more emotional and often cries as he thanks me for for what I do for him. Often we are both crying. He tells me that he knows the end is near and then asks me to make certain that my mother is taken care of after he’s gone.
Still, we are different in many ways as well.
Whereas he was happy to spend his post-retirement years in the same city and literally in the same chair for nearly 20 years, I will, when these final responsibilities are over, become mobile and travel lightly without encumbrances of mortgages and or a garage full of stuff.
Whereas he is afraid of dying and has been very guarded in discussions about his mortality and approaching death, I confront my own mortality more or less on a daily basis.
Whereas he feels imprisoned, I feel the opposite.
Whereas he is focused on his own suffering (and understandably so), he is teaching me to focus instead on those around me, both now and with a thought to the future.
When my own time comes, unless I am taken in an instant, I hope to teach my own children what it means to die with dignity and with confidence in a life well-lived. It is a theme I visit every day that I breathe.
As I watch my father die, I grieve
As I watch my father die, the child inside me grieves the loss of my protector. There is one memory, a very early one, that means everything to me. We were in Tennessee, the state of my parents’ youth and coming of age (as well as my birthplace) visiting grandparents and family. We were in a relative’s house, my paternal Great Grandmother’s I think, and I was very small.
My father was holding me against his chest and talking to the adults in the room. I remember to this day the immeasurable safety and security of that moment; how loved and protected I felt listening to the rich timbre of his voice as it resonated through his chest and into my heart.
I knew that he would always be my protector and nothing bad would happen if I were always in this place. But that moment, like all moments, passed and it was never to be repeated. It was the one time I felt the safest in the world.
As I watch my father die, I grieve the loss of his love for his grandchildren and great-grandchildren. His love for his grandchildren and great-grandchildren has no limit. As the sun sets on his life, it is perhaps the greatest sadness that I have ever experienced – for my own grandchildren I can only hope to be as loving and devoted as he was to his.
As I watch my father die, I have tried to capture these last months photographically on my Instagram account. It’s my hope that my children, grandchildren, and siblings will remember him in his more active and happier days but still never forget that life is so fleeting and so brief and they too, one day, will wither like a leaf in Autumn and leave their loved ones behind.
It’s my hope they will take his example of selfless love, ever-present compassion, and pay it forward as he did so many times.