Dying with disease rather than from it

I’m sitting with my 88-year-old dad in his tiny room in the dementia ward of a care center. We’re watching an Italian documentary about a fisherman and his dog who work in freezing weather on Lake Como. “What a lousy job,” Dad says.

He’s reading the subtitles. The fisherman wants his son to follow in his career. “Why would he do that?” Dad snorts. The fishermen and scientists puzzle about why fish are disappearing from the lake. “Well ... you’re fishing,” Dad says, with a bemused smile. Now the fisherman’s teen daughter is seeking her own path. “What matters is to be free,” she says. “I agree,” Dad says. He repeats: “What matters is to be free.”

Witty, pithy and poignant repartee with the subtitles of an Italian documentary. I had not fully realized how sharp Dad’s mind still was until now. Now I wonder how many dementia ward patients are like this.

Dad has dementia. But it’s not very progressive. He never forgets who he is or who we are, and he has bursts of insight and focus. But his hearing is poor, and he no longer reads much. He walks with a shuffling, unsteady gait. He muddles through the day, sleeping too much. He’s then often wakeful at night. He exercises only under duress. He can’t do his own laundry or cooking. He has urinary incontinence. He asks repetitive questions. With unwashed hands he gloms sliced turkey from the fridge. He tries to feed the cat chocolate milk.

The Mayo Clinic estimates that 6.5 million Americans now have Alzheimer’s — the most common form of dementia. The gap between diagnosis and death for Alzheimer’s, Mayo says, ranges from 3 to 11 years. The average age for an Alzheimer’s diagnosis is 80, says Dr. Lon Schneider, a professor of psychiatry, neurology and gerontology at the Keck School of Medicine of the University of Southern California. “People die with Alzheimer’s,” Schneider says, “more than they die from it.”

The National Institutes of Health says there are four main types of dementia. Alzheimer’s predominates, with the rest distributed among vascular dementia, dementia with Lewy body (Robin Williams), frontotemporal dementia (Bruce Willis) or a combination of these. Then there is the 5 or 6 percent slice that falls outside these boxes.

Most elderly patients who have one form of dementia also have bits of another, Schneider says, and dementia symptoms seen in life often do not fit smoothly with results in postmortems. It’s all still rather fuzzy, he says.

Dad’s key symptoms don’t match the main boxes. He lacks the muscle rigidity of Lewy body; the sharply progressive decline of Alzheimer’s; the cardiovascular, stroke or circulation risk factors of vascular dementia; or the early onset and personality factors of frontotemporal dementia.

But Dad’s case is not entirely nebulous. For over a decade he has had a distinctive shuffling gait, bouts of vertigo, urinary incontinence and mental fog. It turns out these are the key markers of normal pressure hydrocephalus, an odd name for an abnormal and rare condition, in which cerebrospinal fluid pools in and puts pressure on the brain.

As a teenager in Canada, Dad once took a hockey puck to the head. Seven decades later, he can vividly narrate that moment: he’s skating backwards on defense, the opposing player launches a slapshot, the puck careens off his temple into the stands, they patch him up and send him back on the ice. He touches his temple where the puck hit. All his life he’s had a soft spot there.

From my verbal description, Schneider agrees that normal pressure hydrocephalus sounds highly likely, though he suspects some degree of other dementia as well. Normal pressure hydrocephalus is one of the few dementia diagnoses that is highly treatable with a shunt that drains fluid from the area. Dad got his shunt in 2011. It’s helped, but managing it has been difficult. There are limits to what it can do.

Now it’s the summer of 2022. For over a decade, Dad’s mental fog has remained fairly static. In July he is nearly knocked out with an illness that left him incapacitated for weeks; he feared he was dying. He was taken to a local care center, the dementia ward. The illness passed, and he recovers physical strength. Now he’s confused and lonely. One afternoon I find him agitated in the hallway. He’s causing trouble. An attendant raises the possibility of sedatives.

Dad sees me. “That’s my son!” he says, grabbing my arm and fixing me with piercing blue eyes. “Don’t leave me!” he pleads. We walk to his room. We talk. His plea becomes a mandate.

For the next two months, I come every afternoon directly from work and stay late, usually after 10 p.m. My brother, Stuart, does the same with the morning shift. Dad and I go on outings most every day, to mountains and rivers, to an aquarium, to visit my grandkids or his sister-in-law. At night we watch movies and documentaries.

One evening, delayed, I arrive at 6:30 p.m. Dad’s sitting in the dining room. A nurse walks by, leans over and says to him, “I told you he would come.”

His mood improves. Now he’s cheerful and courteous to staff. “You remind me of my Aunt Liesl,” he tells a nurse. “In what way?” “She was coquettish,” he says. There’s that impish smile. A nurse wants to change his sweater. “It has food on it,” she says. “Are you hungry?” he asks. The care staff laugh with him. He’s popular.

But Dad wants to live with family. We assess our shared capacities and resources and find it feasible. Robust in-home nursing support is no more expensive than the care center, we realize. And Dad has the capacity to decide. On October 6, he leaves the care center to live with family.

On that first night, he converses for 40 minutes with Sarah, my adult daughter. My wife and I witness the conversation but are not involved. They discuss Sarah’s recent divorce. “Papa began asking me a series of very insightful questions,” she later recounts. “He then asked what I learned from the experience. He asked if I would consider marrying again and, if so, how soon. He asked if I was going to have a better life now. The whole time he was extremely engaged and listened carefully to all my answers. The whole conversation was his idea, not spurred on or encouraged by anyone else. He was the one who kept it going.”

“I have had many conversations in the past eight months about my divorce,” Sarah says, “but I don’t think I have ever had one where so many insightful and compassionate questions were asked. He was so focused on me the whole time, and so kind. It was a great experience, and I felt a strong connection to him through it.”

I had asked Dad at the care center one night if he knew the Latin phrase fait accompli. “Of course,” he said. “I was a lawyer.” One night several of us watch “Knives Out,” a witty murder mystery with a large cast of narcissistic characters. Dad watches the entire film, leaning forward, focused. After the climax, during the resolution scenes, he removes his headphones and appears distressed.

“What’s wrong?” I ask.

“How do these people live with themselves?”

“You do know it’s fiction?” I test.

“Yes, but it’s very realistic.”

“OK. To be fair, there are people like that.”

“Yes, I know,” he says. “I was a lawyer.”

Dementia experts I speak with are not surprised that Dad remembered the hockey injury. Deeply rooted memories from early youth often survive long into dementia. But his capacity for ethical abstraction after watching “Knives Out”? That is another matter.

There is a flavor of “Awakenings” here, the story of British neurologist Oliver Sacks, who used an experimental drug to temporarily restore consciousness to victims of encephalitis lethargica, or the sleeping-sickness, who had been catatonic for decades. The drug treatment proved temporary, but it opened a window into the unyielding humanity of those whose minds seem to slumber.

Months later, speaking with Schneider at USC, I pose the haunting question first formed as I watched Dad respond cogently to the subtitles of an Italian documentary. How many dementia patients have such capacity?

“We don’t know,” Schneider says, “because it hasn’t been tried.”

Few patients, he says, receive sustained time and attention from loved and trusted people, the conditions that could evoke lucidity. “If you’re told that Alzheimer’s disease is the worst thing in the world,” he says, “then you see a blank face and you say, ‘Oh, that’s Alzheimer’s disease. I’ve lost them.’ And then you don’t engage.”

During his last month in the care center, Dad got physically weaker. We realized too late that the care center diet had ignored his missing dentures. He couldn’t chew. He lost muscle mass. On October 24, after he left the care center, a geriatrician doctor diagnosed him with calorie and protein malnutrition.

Now he eats even less and walks not at all. There is an element of choice here. His life is grueling. He is weary. Swallowing is now hard and talking is difficult. On December 6, he leaves us, peacefully, in his own bed in his own room in our home.

We are at peace. But our minds spin with questions. Science has mapped the human genome, but we know next to nothing about how the brain fuses the body and soul.

Wherever the answers lie, I believe, friendship, family and human relations will not be far behind. “Feeling the fullness of the presence of the world,” Oliver Sacks wrote in “Awakenings,” “depends on feeling the fullness of another person, as a person; reality is given to us by the reality of people; reality is taken from us by the unreality of un-people; our sense of reality, of trust, of security, is critically dependent on a human relation. A single good relation is a life-line in trouble, a pole-star and compass in the ocean of trouble.”

In his final days, Dad and Sarah enjoyed a wordless connection. “He could barely communicate,” she later wrote, “but he was so sweet and gentle. I would come in, and he would be smiling peacefully, watching TV or listening to music. He would look over, and his eyes would light up to see me. I would sit with him and hold his hand. Sometimes his cat, Sofi, was with him, and he would point to her at the end of the bed, silently telling me, ‘Look. Isn’t Sofi cute?’ I would laugh and confirm that, yes, she was indeed cute. Then he would point to his big-eyed stuffed sloth with the same smile. That twinkle in his eye stayed with him. I hope that when I reach the other side, he’ll be there to greet me with a witty comment and a wry smile.”

This story appears in the June issue of Deseret Magazine. Learn more about how to subscribe.