Tag Archives: Alzheimer’s

I hated feeling powerless. As if there was nothing I could do to positively affect anything in the universe, let alone my dad’s pain and suffering. Yet that’s exactly how I felt as I stood beside my ailing father’s bedside after his stroke, holding his hand, attempting to interpret his garbled speech, pausing briefly to take in the jumbled masses of wires and tubes that were now heinously tethered to him, wondering like crazy why he couldn’t move his left side and why his eyes seemed drawn only to the light coming from the window and not to my face, which was surely fraught with dread.

I remember he called me “Sweetheart” when I first entered the room and he turned his head toward the sound of my voice as I moved closer. He kept straining to see the sky behind me, his dark eyes darting back and forth and looking right past me, never really focusing on anything—which seemed odd to me at the time. Maybe he was unable to see, I later thought. Again and again he tried to climb out of bed, telling us all he had things to do, occupied always with the notion that life wasn’t meant to be lived as an idle person.

He seemed so small lying there, a shell of the man I remembered from my childhood. Alzheimer’s had stolen so much more than his memory, and now the stroke had taken what was left. I remember feeling cheated—as if I were losing him in bits and pieces, and even the pieces I no longer recognized were being taken from me in some cruel twist of fate.

Just that morning I had talked with him on the phone, after his fall. It was five days before Christmas and his caregiver had called me, alerting me to the news. He seemed fine aside from a horrendous headache and a few distorted words here and there, sounding as if he were chewing on a bit of gravel as he spoke. But that was the Alzheimer’s, wasn’t it? It was also possible he had hit his mouth on something during the fall, causing his lips to swell, making it difficult to speak. Wasn’t it?

“Dad, did you bump your mouth this morning? When you fell?”

No. He hadn’t. Why couldn’t I just hit the rewind button and revisit our conversation? Did I tell him I loved him? I can’t be sure. I do remember telling him that my husband was on another phone calling an ambulance and that it would be there soon. The people at the hospital would get him all patched up. Just like new. I promised.

Not surprisingly, I had a number of angry discussions with God that week about the unfairness of it all. About how desperately (almost incredulously) I wanted things to return to the fucked-up “normal” I knew—the life that came to be defined by a certain uncertainty. Some moments in time, I was his wife. Other times, his mother. And when the Almighty was smiling upon me, I was his daughter. I’d even settle for the days during which he informed me he never had a daughter, as deeply as that hurt. Needless to say, I longed to see him get up out of his favorite chair and make his way across the living room to hug me when I visited, welcoming me with a warm and genuine embrace. Always. I could envision him in his khakis, pinstriped oxford shirt and matching sweater, the most dapper 80-year-old man I knew—clean-shaven, a splash of cologne and a smile. This was, of course, a testament to Agatha, his caregiver, who knew how important his appearance was to his happiness.

At any rate, as the week wore on I found myself bartering with God, eager to hear my dad tell me how his day was going, even if that meant acknowledging his addled state and mixed-up reality. I wanted to talk about the apple crumb pie and pumpkin cookies I planned to bring on Christmas Day, about how lovable our dogs were, about the ridiculous dearth of snow this winter. Again and again I replayed the details of the last day I had spent with him before the stroke, trying like mad to harvest it from the depths of my mind. Vividly I recall sitting next to him on the couch as darkness fell, both of our faces bathed in the soft glow of Christmas lights that enveloped the tiny tree my mom used to decorate. Who knew this would be the only year of my entire life that I wouldn’t spend at least some portion of the holiday with him? It would be only the second Christmas without Mom.

But the doctors didn’t know everything, did they? Surely they didn’t know my father. He had overcome a frightening bout with hypothermia and frostbite following last November’s near dawn excursion through the neighborhood—sans shoes. Hunters had found him a quarter mile from his house, huddled in a rock-strewn ditch, badly bruised and cut. Months later, he bounced back. He had survived the loss of his true love—his wife of 56 years to cancer as well as his son’s suicide almost a decade earlier. He weathered the loss of his beloved father at the tender age of 19 and battled the horribleness of dementia every damn day since his diagnosis, managing to preserve both his dignity and his sense of humor. No small feat.

Nope. The neurosurgeons didn’t know my dad. And I hated discussing his prognosis with them over his bed, so we went to a little room filled with a smattering of chairs and an enormous conference table—the place where we reviewed his CAT scans, tried to digest the awful news and cried into the box of tissues they reflexively offered. I wondered how many times they had done this before, shared the dim outlook with the next of kin, pointed to the screen and tried to make us understand that things would never be the same. My husband and I emerged from the room shaken, saddened and numb to an extent. One foot testing the waters of reality, one still squarely planted in denial.

That said, I can’t imagine my dad would have liked all the hubbub—the constant whir of activity in and out of his ICU room, the annoying buzzes and blips of machinery, the squawk of the intercom, the helicopter landings on the roof, the incessant poking and prodding of his veins, the hideous crown of wires atop his head. He seemed plagued by frustration wrapped in angst, as if he were lost in a deep forest, separated from all that was familiar and good by an impossibly dense thicket that he couldn’t manage to escape despite his best efforts. And he was trying; there is no doubt. I studied his face, even as his eyes were closed, and watched his restless body struggle amidst the tangled wood to find a way home. And I could do absolutely nothing to help him, which was the hardest part. All I could do was tousle his hair, hold his hand and tell him I loved him. On my last day at the hospital, during a rare moment when everyone happened to have left the room, I whispered in his ear the message that it was okay if he had to go. I let him know that we would be alright and told him, once more, how much we loved him. It was not a Christmas Eve message I had ever envisioned delivering to my father.

Late that afternoon, it was clear he wasn’t coming home. He had had another “neurological event,” as his failings were not-so-affectionately termed. And there were decisions to be made. Hard decisions. I remember sobbing alone in my car on the way home, pounding the steering wheel and shouting at God, at my dad, at the meadows enshrouded in fog at the edge of twilight. It was hard to see the road through my tears, let alone the milky mist that hugged the tree line, and I vowed to continue my sob-fest in the shower—the very best place to cry, apart from my husband’s shoulders.

Christmas Day was a supreme challenge. I tried to be cheery as a mom and a wife, watching my kids unwrap their gifts and graze on the ham we had planned to take to my dad’s later that day, but it was difficult. To say that I was preoccupied was an understatement. I felt impossibly torn, wanting to spend time with my family making holiday memories, wanting to be there for my dad should he rouse from his slumber-like state, somehow benefitting from my presence at his bedside.

He died the next morning, removing from my plate the awful choices I would have had to make, erasing from my mind the all-consuming worry and torment over what the future held, opening the door for me to grieve his passing and to celebrate a life well lived—which is how he would’ve wanted it, I’m sure. Looking back, I wish I could’ve been there for him at the moment of death, but it was not to be.

I never thought I’d be glad that I chose to view his broken body, but I am. His face clearly revealed that he was at peace. There were no more wires or tubes, no more struggles to swallow or to speak. No more frantic searches for the life and people he once knew. At the very least, I could be comforted by that—knowing he had made it out of the darkened woods and was finally home with those he sought for so very long.

Copyright 2016 Melinda L. Wentzel