Uncommon Grief – Reflections on Navigating the Alzheimer’s Journey with a Parent
My father was diagnosed with Alzheimer’s five years ago. As is common, the course of his disease has been slow and cruel and we have come full circle—our roles of parent and child reversed. Once a social, vigorous, active man who owned a thriving business and loved to ballroom dance, water ski, and navigate the ocean in his boat, today my father is wheelchair bound with very limited mobility and extreme cognitive deficits.
My dad doesn’t meet the criteria for what we psychotherapists call “orientation times 3.” Time and space have retreated to a distant place in his mind of diminishing memory and awareness. What he still hangs on to is his identity. He knows his name. Gone is the time when he could say my name and call me his daughter. Yet, today he recognizes still that I’m someone special—it is in his eyes, his smile, and the way he kisses my hand when he sees me.
Losing one’s parent little by little to the disease of Alzheimer’s, a form of dementia, is a harsh and life-changing experience. It’s not for the faint of heart, that’s for sure. As someone who practices mindfulness and being present centered, it has posed the interesting question for me: if I cannot remember from one moment to the next what just happened or what event just took place, does my experience of that moment really matter? Memory is a beautiful thing as it allows us to replay a joyful experience over and over in our minds and to share it with others long afterwards. The conclusion I’ve come to is, yes, every moment matters. My father can still experience the joy of the moment. Thirty minutes later that moment may be wiped from his memory banks but that doesn’t make it any less real and precious.
Recently we were out at the marina. I had maneuvered the significant logistical difficulties to take him out of his depressing skilled nursing care facility down to the ocean where I know he enjoys the boats on the water. A U.S. navy veteran, this is a place that meant so much to him for the majority of his life and where he found great peace and a sense of adventure.
On our arrival, I already felt mentally and physically fatigued. As is now customary, getting my father out of the car is a complex affair. He dismissed the waiting wheelchair with a wave of his arm and motioned that he would try to walk with his walker, something that is extremely challenging for him now. His gait was incredibly slow as he bravely put one foot in front of the next and steadied himself. I watched as he looked out towards the ocean with an aliveness I rarely see, on these days that are mostly lived from his bed. I was by his side trying to facilitate his proud independence while at the same time staying close enough so if he should falter I could steady him or, God forbid, stop a fall to the ground altogether. The smile stretching across his face as he watched the boats and felt the ocean breeze warmed my heart.
A stranger nearby, a middle-aged man, was watching us and could hear my words of encouragement as I coaxed my father to walk a few more steps for a better view. The man approached us and wished us a good day, and he said to me, “I hope you know what you’re doing is really important. I have a feeling that probably nobody ever tells you that but I want to tell you that I know how hard this is. Can I give you a hug?” He was looking deeply into my eyes and I could see there was nothing calculated in his approach … his words were heartfelt.
Strangers, we stood out there on the dock and he gave me a bear hug. Feeling deeply connected for a brief moment in time, I hugged him back and felt the tears running down my face. I thanked him quickly and my father and I continued. I knew I wouldn’t see this person ever again most likely. It was a beautiful gift that reminded me how profoundly we are all connected—in our joy and pain—and that even when we may feel alone, the human experience is universal.
Addendum:
My father died in January 2018. I wish I could say his passing was a peaceful and dignified one; but it wasn’t. I was grateful to be with him when his earthly journey ended. Our relationship was complicated; many things were left unresolved. But I feel in the end, love transcended them all. Godspeed, Dad.
