My dad died on Wednesday.
If you recall from my mom’s posts about being his caregiver (see below for links to these*), my dad was very sick for a very long time.
He was diagnosed with Stage IV nasopharyngeal adenocarcinoma in September 2003. The diagnosing physician at Vanderbilt University shook his hand and asked if he’d like to speak with a grief counselor. She offered no treatment plan.
Unwilling to give up so early in the game, Dad went to MD Anderson Cancer Center in Houston where he was treated for months with what amounted to experimental doses of radiation to blitz the tumor that sat at the base of his brain, adjacent to his carotid artery. The doctors removed the tumor successfully.
But not long after treatment cessation, Dad started experiencing nerve pain and after imaging, realized that the radiation had begun to kill healthy brain cells. “Necrosis” it’s called, but we likened it to his brain being burned from within. (Because it was.) He experienced excruciating pain and was given intense medication that caused both physical and mood changes.
In May of 2008, Dad suffered what the physicians at Vanderbilt’s Neuro-ICU termed, “a massive stroke.” It impacted the right side of his brain, thus the left side of his body was affected. Most of the necrosis had impaired the right side of his facial nerves, so he was left with precious little hearing, difficulty speaking and swallowing, and the inability to control the left side of his body, including his leg and arm.
As I sat with him in the hospital after his stroke and in the weeks of recovery both in the ICU and the rehabilitation hospital, I was hit with the realization that my father, as I had known him, was gone.
As I have written before in this space, having a loved one “leave you” before he actually dies puts one in a strange place emotionally and socially. As I described then, I suffered an “ambiguous loss,” and, as Pauline Boss, Ph.D. notes:
Ambiguous loss freezes the grief process and prevents closure, paralyzing couple and family functioning.
It’s a strange limbo, this place of existing where you feel such a profound and devastating loss but have no external validation of your grief. “At least you still have your dad,” people would say after the stroke. Trying to explain that I really didn’t was wasted breath and made me sound ungrateful.
Dad’s fully and completely gone now and I’ve experienced a profound relief in the unambiguity of his departure. It’s not just because he’s out of pain, although that’s hugely important to me, of course.
Rather, I am finally able to grieve the man who I lost those seven years ago. The memories and photos that people are sharing come from a time when he was able-bodied and active, funny and generous. I get to remember him and I get to do it in the context of family and friends who remember him as well.
It’s an odd thing to try to explain, and I’m just beginning to process the many complex emotions churning around inside. I suspect those whose loved ones have suffered traumatic brain injury, Alzheimer’s and other neuro-debilitating conditions will understand my sentiments better than most.
What I have walked away from this experience with is the affirmation that grief is a profoundly, profoundly individual experience. We bring to it not only our relationship with the person we’ve lost, but our own emotions, expectations, spiritual context, and extinguished hopes and dreams. My hope in sharing my experience is that someone similarly situated might find the words to express and comprehend their own “ambiguous loss.”
Be gentle with yourselves, friends.
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*My mom Sally’s posts about serving as my dad’s caregiver can be found here: