1.

Terminal: final, incurable, end of the line

After a history of severe traumatic head injury, mini-strokes, a major hemorrhagic stroke, pulmonary fibrosis, Alzheimer’s, prostate cancer, and squamous cell skin cancer wrapped around his right temporal artery, my father was given a terminal diagnosis. For five years he’d struggled to overcome his failing body and brain, until he overheard his doctor tell me the skin cancer was too deep to completely remove. Another attempt at surgery would kill him. As it was, he would probably die before the holidays. Dad, who’d been staring at the blinking lights on the wreath hung from the nursing station, looked down at his hands, as if he’d understood. But maybe just seeing the wreath bothered him. He’d always hated wreathes. When he was growing up, families would hang a black-ribboned wreath on the front door to announce a death. It is impossible to know exactly what someone with dementia is thinking. I was thinking Christmas was ten days away.

 

2.

Dementia: out of one’s mind, a persistent disorder of mental functioning

Three years before his prognosis, my father was diagnosed with chronic, advancing dementia. His symptoms included:  inability to carry on a conversation; unawareness of person, place or time; gross confusion and disorientation. From there he went downhill. In his addled brain, I’d morphed from larcenous daughter, to wife, to friend, to nice visitor. But even when he mistook my identity, always he’d greeted me with a spark of knowing in his hazel eyes – until my birthday a month before his terminal diagnosis. Then, his face had been blank and his eyes -- as dull as if I were the plastic chair I sat on. When I held his frail hand, he was unresponsive. The skin on the backs of his hands was so thin and the veins so narrow, they looked drawn on him with a blue ballpoint pen. I’d wondered then if I should call hospice like I had the previous year when the doctor had suggested it. Back then Dad had rallied and been dropped from their rolls. Now one of the aides in charge of his feedings told me he was forgetting how to swallow. Breathing would come next.

 

3.

Brain: the skull-encased, three-pound organ that controls breathing, walking, emotions, learning, and reasoning

According to a recent CAT scan, Dad’s brain was so atrophied, it was no wonder he’d spent the last two years being spoon-fed like a baby and wearing diapers in a wheelchair. The wonder was that he was still alive. Raised on an apocryphal story of his immunity to harm, I’d always believed my father indestructible. When he was twenty-five, he’d worked as a pole monkey for the power company before hard hats were mandatory. The electrician on the pole above him dropped a chisel.  Down the blade plunged toward the top of Dad’s head only to land on the small cloth-covered metal button atop his cap. Bouncing off, it left him with a mild headache. (In truth, his headache must have been a humdinger.) To my father, weakness in his children or himself was  anathema. From my childhood onward he instructed me that if he ever became feeble in body or brain, it was my duty to hit him on the head with a shovel and use it to dig his grave. Then he’d laugh. I’d thought he was only joking. But he’d made me promise.

 

4.

Atrophy: to wither, shrivel, or waste away, the loss of neurons and the connections between them

My father’s brain began shrinking thirty years before his stroke and the sticky tangle of plaques that followed. He’d turned fifty-three and was into his motorcycle phase when he cruised down I-69 on a Sunday afternoon. The man who’d been driving ahead of him said he’d looked in his rearview mirror to see a gust of wind, like an invisible hand, pluck the bike with Dad still clinging to the handle bars, aloft. Then it dashed them to the ground.  My father hit the asphalt first. He’d been going seventy. His ribs snapped and punctured a lung, his collar bone broke, and his expensive helmet cracked like an eggshell. His crumpled body slid so far on the pavement that the lining of his leathers shredded. He was bruised from head to foot. His cerebral trauma was extensive and he had more blood clots on his battered brain than the specialists on his team had ever seen. Comatose for days, even if he managed to live, many of his neurons would have died according to his doctors. Chances were he’d spend the rest of his life in a vegetative state.

 

5.

Neurons: nerve cells that relay sensory information to the brain in the form of electrical impulses and transmit commands from the brain to the rest of the body

Four days after the accident, Mom called. I should wait for his funeral to come home to Michigan, she said. Soon after Dad awoke from his coma, I arrived at his bedside. He was convinced I was his sister, that my mother was a Russian agent, and his hospital room was a cell. He imagined the constant ringing in his ears was a phone in the hallway that no one would answer. Brain surgery was his only chance at a somewhat normal life, we were told. The morning my father was to be transported to University Hospital, he sat up, and each word he spoke made sense. He passed every mental status test his team of doctors gave him. They called his recovery miraculous. If they hadn’t seen it, they would never have believed it. Seven weeks later, Dad was back supervising the wiring of a new grocery store. On a follow-up visit, he learned two of the physicians on his team, both atheists, had started attending church because of him. Five years after that, medical school researchers tested him for hours, even spinning him around in a centrifuge chair like an astronaut. Of course, my father was unflappable. They wrote a journal article on the brain’s amazing ability to create new neural pathways to compensate for neurons damaged or destroyed and used him as their prime example.

 

6.

Stroke: an act of hitting or striking; the sudden death of brain cells due to lack of oxygen caused by blockage of blood flow or rupture of an artery to the brain, apoplexy, cerebral vascular accident

Fiercely independent, Dad lived alone in Arizona for ten years after Mom died. I believed him when he said he was doing fine. The times I drove down from South Dakota, he seemed healthy and happy – until the visit I discovered he’d forgotten to pay some bills, written a large check to an imperfect stranger, and lost his way home from the grocery store a few blocks from his house. A glance at his kitchen calendar revealed he’d written “mini-stroke” on three dates. When I called his doctor, he replied that, yes, my dad may have had some incidents, but dismissed them as just a part of aging. Since Dad insisted he’d be damned if he’d move from the house that he’d built with his own two hands, I enlisted his lawyer for help with his finances and pulled together a team of close church friends who promised someone would look in on him every day. Torn between honoring my father’s wishes and keeping him safe, I headed home. A week later the team leader called me in tears to confess they’d slipped up. When she’d realized she hadn’t seen him in days and he didn’t answer his phone or her knock on his door, she’d peeked in his windows and found him sprawled on his bedroom floor. After being felled by a major stroke, for three nights and four days, my father lay paralyzed and incoherent on the brown carpet that he’d chosen for its stain-resistant practicality. Dehydrated and near death, he didn’t know what hit him.

 

7.

Mind: the inherent and invisible seat of consciousness that enables awareness as well as thought, feeling, belief, and imagination; the essence of being

Although he lived, my father no longer could store and retrieve even short-term memories; he had lost the ability to learn. He told his nurses that I was a thief, endlessly repeating his story because he’d forgotten what he’d just said. He ripped out his catheter and refused the oxygen required for his brain to function. Without constant monitoring, he was a danger to himself.  Although he was able to walk and speak, a nursing home was the only option for the kind of care he needed. Once ensconced, he mounted a furious campaign to improve himself. Over the years he grasped at memories he could never catch; he threw tantrums. Truly he was out of his mind, clearly not the man who had raised me. I veered between grief at losing my father and anger at his verbal abuse. Eventually I moved him to a care home nearer to me so I could see him every day. As the months passed he forgot even his memory loss. I brought him apple fritters and Johnny Cash CDs. I read his bible to him and held his hand while retelling the few memories that remained to him.

 

8.

Lucidity: a state of lightness, clarity of thought

Within a week of his doctor’s terminal assessment, my father’s lucidity made an unexpected return. He looked into my eyes with tenderness. When I asked him if he knew who I was, he gave me a puzzled glance and said, “You’re my daughter, of course. Why do you ask?” As if I were the one with dementia. When he told me how much he loved me, I forgot to question how in heaven’s name he could possibly be making so much sense after his decline. For three days while Christmas carols played in the hallway, my father conversed with the aides and orderlies and nurses who came to his bedside to marvel at his alertness and bask in his love. He was the one who was dying, yet he was also the one who comforted and gifted us all with his kind words and gratitude. Some minutes I worried that maybe he wasn’t really dying, and would sink yet deeper into his cancer, unable to escape further torment. At other times I wondered if I was delusional. In the end, the only thing left to me was to stay present while the man who had given me life blessed me with the chance to witness his last miracle. He was going on a journey, and he would be all right. The day after Christmas he lost consciousness, and two days after that, despite a final struggle against it, he died.

 

9.

Terminal lucidity (TL): paradoxical, end-of-life clarity of thought

A month later, I held a celebration of Dad’s life for the people who lived and worked at the nursing home. With a cake and a country/western gospel band, it was the kind of send-off he would have wanted to attend. By then, I’d begun to wonder whether I’d witnessed what really happened or if I’d fallen victim to wishful thinking. Given Dad’s medical records and previous functioning there was no way he could have really pulled off that last hurrah. Or was there? When the band broke before their second set, I questioned nurses and aides about what they had observed in the days before my father died. Their perceptions confirmed mine. They also said that occasionally people with extremely low cognitive functioning regain lucidity and the ability to communicate when they are on the verge of dying. It doesn’t happen often, but it isn’t rare either. Years later, I found an anecdotal study of 83 patients with severe brain injury or dementia who were suddenly able to have meaningful and relevant conversations and engage with the people around them before death. The author, Michael Nahm, called this phenomenon, “terminal lucidity.” Those who experience it say things that are meaningful and relevant, often talking about shared memories, last wishes, and preparations for death. Despite the implications of its name, terminal lucidity is not lethal. It is, however, a mystery.

 

10.

Mystery: a puzzle or secret, inexplicable, beyond understanding

So far no one knows how or why terminal lucidity happens, only that it does. Some would posit that as my father approached death his brain  unleashed a torrent of neurochemicals that empowered lucid thought; others might say it was an act of Divine Providence. I think perhaps the two aren’t mutually exclusive. Neuroscientists traditionally have assumed that the mind is a construct the brain has concocted in order to explain itself, and consciousness is simply the product of our firing neurons. But what if our brains are merely the tools of our minds?  Could our minds separate from our brains as death approaches and find a way to override our nonfunctioning neurons? If consciousness resides outside the brain, does it die along with our failing bodies and brains, or does it go on to the next adventure?

Until two years ago, medical researchers showed little interest in studying terminal lucidity. That summer the National Institute on Aging held a conference on the phenomenon and began brainstorming research questions with an eye toward learning what causes it and, in the process, perhaps developing a new paradigm for the understanding and treatment of dementia. In September of 2019, the institute put out an announcement of funding opportunities with the goal of beginning “systematic and rigorous” studies.

If the proposed studies lead the way to a scientific understanding of how to reverse dementia, that would be wonderful. Even if they don’t, I will forever savor the gift of witnessing my father’s final encore.