My dad died two and a half weeks ago. Dad had Parkinson’s for twenty plus years and finally succumbed to this wretched disease via a choking incident that left him with aspirated pneumonia. I could talk at length about the week that dad lay dying in the hospital and all the feelings that evoked in me. I could talk about the one beautiful day we shared with him, together. The day we sang and talked and shared. The day he knew us and was aware. I could do that and it would be beautiful. But tonight, I am focused on the loss. The loss of a life that was taken earlier than he ( and we) ever expected. The loss of a dad. A father. A friend. A Husband. A brother. The loss of a man. And I am focused on my dad and what that must have been like for him to slowly die over a twenty-year time period, watching his life fade away. What must that have been like.
It must have been awful. Absolutely miserable.
It is my firm conviction that my dad suffered not only from the ravages of a condition that stole from him his livelihood, his functionality, his ability, and his mobility. I know now that dad also dealt with the unrelenting waves of depression that washed over him, year after year, as he watched little bits of his life move away from him, out of reach. Depression was never confirmed by him, that was not his style. But although unnamed, it does not negate its presence. Not does it make this terrible disease any easier for us to understand.
My dad lost an awful lot over the past twenty years. That much is very evident.
One of the first losses Dad incurred was his ability to work and provide for his family. Dad was forced into early retirement, by the whims of people in positions of authority who cared not for my dad’s physical or mental health, pressured into leaving work from which he derived both satisfaction and a sense of purpose. Forced to become idle and still. Something dad was never good at in his actual life. Watching my dad in those days of the changeover was a nightmare. This was clearly not where his heart nor his head were situated. Dad was always busy, always on the go. Due to a series of meetings that decided his future, Dad was asked to step down from his position and pressured into making a decision to leave work, under duress. It was one of the more painful periods of my own life, as I went head-to-head with some of the men who callously discarded him when he was unable to keep up his seven day a week, twenty-four hour a day (round the clock) time schedule. I fought for my dad. It was a painful experience. My dad was a people pleaser, although he would not want to be known as such. He sacrificed himself for people. In the end, it was not a sacrifice that paid off.
A second part of his life, lost, was his ability to drive. He lost his license, such a great loss indeed. One thing we quickly noticed with dad was that his sense of depth perception and balance were greatly affected by Parkinson’s, rendering him quickly incapable of driving. This loss stole from him his independence, once and for all.
What followed were more and more losses. The loss of self-care. The loss of modesty. The loss of self-help. The loss of more and more independence. The loss of control over his body and its functions. The loss of language and communication. Until he finally, one day, was rendered incapable and given puree to eat at the manor in which he spent his last days, a place that represented, for him, the final loss. A complete and utter loss of control. A loss of self.
It was that puree that finally stole from him the last of what was his: his days and moments. His actual life.
Dad told my mom, whose heart broke when she heard these words: “I wish I had a set of keys. I would drive myself out of here.” In the end, it was an ambulance that finally transported him out of that place he despised and into another facility where he would eventually fall deeper and deeper into sleep and eventually rest his earthly body, permanently. The losses now over and gains greater than all that was taken.
Dad knew loss.
And I believe with all my heart, in his own quiet way, he knew the despair of depression and the grip of despondency over his life. Not complete and thorough despondency, for Dad’s faith in the One that saved his soul ultimately sustained him: but depression and despair were there, evident, to those of us who knew him well.
Depression is real, even for dads that don’t like to talk about it.
One thing about depression that many don’t recognize right away is the shame one feels upon becoming depressed. We are obviously depressed for a reason, those of us with this condition. Often it is justifiably difficult situations and burdensome circumstances that bring us into that depressive state. We feel overwhelmed and bombarded by what is often out of our control. The rejection we can experience from friends and family, as fallout, can cause us shame, feelings of rejection and isolation, when others just do not understand and are ill equipped to meet us where we are at. The loss of purpose and a sense of direction can steal our joy, along with snatching from us meaningful experiences to encounter and interact with our world around us.
Speaking from personal experience, the shame one experiences from lack of connection, which is a direct fall out from these losses we suffer, is a significant level of loss. The loss of competency and confidence in oneself. The embarrassment of no longer being enough. The humiliation that people no longer are drawn to us or need us. The deep, deep feelings of inadequacy. We cannot adequately address depression without examining shame.
When I think of dad, I think that his ability to cope with the loss and keep shame at bay was numbing. Trying not to feel too much or too deeply. Keeping feelings buried and concealed gave the impression they were not real. Dad got very good at this.
But those feelings were so very real. There was no denying them.
When we experience shame, our feeling of self-worth and self-acceptance is greatly affected. We feel humiliation and hopeless. Dejected and rejected. Isolated and alone.
Looking back, I wish Dad and I would have both been able to acknowledge what he was experiencing, stripping from the hopelessness, the helplessness, the stigmas and labels. I wish I could have told dad that his dignity and integrity were not tied to a condition that lay beyond his control. I wish I could have affirmed in him that his worth was far greater than what this disease reduced him to be. But this was not a conversation I could have had. Not with my dad.
But I can have it with myself.
I, too, deal with depression on a regular basis. Depression is a very real part of my lived experience. I regularly struggle with feelings of inadequacy, irrelevance, isolation and anxiety. And from watching my dad, I have learned a few things.
I have learned that our value as people and individuals is not tied to the labels attached to us. My dad had a condition called Parkinson’s. But he never was Parkinson’s. And Parkinson’s was not my dad. I wish dad had been able to internalize this in his last twenty years of life.
I have also learned that it is okay to talk about depression and acknowledge its presence. It is real and it is rampant. I am naming it and putting it in its place. Depression is part of my lived experience and I acknowledge that: but it does not define me nor will it have the last say on who I am and who I become.
I am learning that life is full of disappointment and trouble. It is hills and valleys. Mountain views and parched deserts. Life is anything but predictable. And even when it seems it is at its worst, there is no predicting tomorrow and the hope and wonder that is possible— if we just believe.
Life is hard. It is so hard. And for those of us who deal with depression, and in particular, for whom depression is a comorbid condition, as was my dad’s situation, it is unbearably hard. But it is not impossible with support, connection and understanding, to thrive.
Depression is not the last word. Not in this story, anyway.
Hope is.
I choose hope.
And with this intentional choice, I choose to believe that things can be better, that I can get better, and that life has more to offer than what it has given me today.
There is more.
There is hope.
thank you, Lori, for writing this. It is hard to deal with all of what happened-one thing that comforts me is that he was able to stay home except for that six day respite and the 9 day hospital stay. He was home, where he wanted to be, having his family come in and out. Oh, dear, life is hard, loss is great, but, hope is eternal! And that is what we have, a hope secure of reunion!