The patient was muscular and wore coordinated clothing, both uncommon for someone admitted to the hospital. One of my tasks was to deduce his age from observation; the moment I saw him I knew it’d be hard. He was one of those mystical people who appear much younger than their age.
There are a series of questions we always try to ask our patients in the hospital. They seem silly, but you’d be surprised how often patients can’t answer all of them. “What’s your full name? Where are we? Why are you here? What’s the date?”
This patient made great eye contact. He sat on the edge of his bed with his spine perfectly straight. He used his hands when he spoke. He said his name purposefully. He stated our location without pause.
“Why are you here?” I asked.
“I’m here to evaluate the hospital systems. I have a solution for your computers,” the patient said.
I looked at his wife who was sitting in a chair a surprisingly far distance from the hospital bed. She grimaced. “He’s been fixated on the idea of attending a business conference recently. I can’t seem to get him out of it.”
The neurology exam unfolded (an exam looking at nerve, brain, and muscular function). On the nerve and muscle function part the patient did well. He was nibble and coordinated. He was very strong. Especially for his age. However, his cognitive score was significantly below the normal level – low enough that despite our newness to testing cognitive function the other students and I were confident that he had scored low enough to count for a diagnosis of a memory disorder. How long had his memory been declining?
As I and the other medical students interviewed the patient, his wife interjected ever-so-politely when he denied he had any health concerns. She’d taken over multiple tasks to manage their household, slowly. Now she managed all the finances and everything else too. She mentioned that the patient would fly into a rage for almost no reason which was unlike the man she’d been married to for many years. He’d always been a calm man. He’d always been a connector and a successful man. He’d always been so well organized.
His memory and brain function were poor enough that the man could not complete all his activities of daily living (things like paying bills, buying groceries, among other things). This memory loss and brain function decline had been going on for over 6 months. In other words, the patient met the textbook definition of dementia.
The other medical students and I told the physician we were working with what we’d learned about the patient. The physician requested only the information that would change his management of the patient. So, in the end, we shared very little about what we’d learned about the patient. What makes medicine interesting (to me) is the story; however, diagnoses and treatment mostly depend on the distilled details of signs, symptoms, tests, and timeline.
The physician examined the patient. “What would you do if your house was on fire?” the physician asked.
“I’d go outside,” the patient said.
“Then what?” the physician asked.
“I’d communicate with people I know,” the patient said.
“Like who?” the physician asked.
“Well, I know some firefighters. They’re friends of mine. I’d probably talk to them,” the patient said. The room was silent for a few seconds. The physician watched the patient, but I watched the wife. Most of us would call 9-1-1 if our house was on fire. I hope.
When we left the room the physician said, “You didn’t tell me how bad he was!”
“You only asked for the information that would change your management of his condition,” I said.
As we discussed the patient in greater detail, the patient’s wife came out into the hall to show us a picture of her husband when he was still working. In the picture, he was dressed sharply and similarly to the physician I was working with. We all nodded and smiled. She looked at the picture with love, but her body was tense.
The vision of the wife holding up the picture of her husband stuck with me. I hoped she knew it was going to get harder. It was possible that her husband would have angry outbursts more frequently. It was certain that his memory and ability to function would decline. And it was unlikely that even that picture of him as a younger, healthy man would propel her through the remaining years of her husband’s decline if she didn’t have help. Dementia takes a toll on the loved ones of the person who is slowly losing their brain. There is no magic pill or procedure to fix the brain when it breaks in the way that causes dementia. Dementia is a progressive disease with a fatal end where, along the way, the person who began the illness is not the person who dies from it. Dementia reduces our ability to function and, also, transforms our personality.
Despite the frustration of memory loss, one thing that this patient illustrated and continues to strike me about people with dementia, is that they keep their pride much longer than many other aspects of their original personality. The vision of this patient sitting tall and answering our questions confidently floated in my mind next to the picture of him when he was younger. Why is pride something the brain clings to even as other functions are lost?
The patient’s wife noted that his outbursts most often occurred in moments when he realized he was forgetting things. In the beginning stages of dementia, many people are aware that their memory is going. I thought about how this patient’s wife must struggle to strike a balance between supporting the autonomy of her husband while also knowing he could not grasp the intricacies of complex concepts and decisions like he once could. When she looked at him, she seemed reflective. Perhaps she was recalling the grand times they’d had together. She also looked tired likely because their life together was more difficult at the time she brought him to the hospital than it had been previously.
The longer I stay in healthcare the more I come to realize that illness, while very personal to the person experiencing it, is not only an individual journey. For patients lucky enough to have friends and family at their side, their disease impacts their family and friends in profound ways. For patients alone in the world, their illness impacts those who care for them whether it be their primary care provider or their care team when they land in the hospital. And much like pride which clings on even as the brain becomes weak, the odd realization that illness is often a social experience lingers in my mind as a dark side of the human experience.