The Gentle Fog of Dementia

A mystery that science cannot solve

I haven’t written a piece in a while, and I am going to stray from my usual science analysis to talk about death from a personal perspective. I’ll find a way to work in some bioscience if I can. My father passed away two weeks ago, at the age of 93, after a long time spent battling the grim reaper through the fog of dementia. Dementia is a bit surreal; it’s tragic to watch a loved one slip away before your eyes, but your loved ones don’t always see themselves slipping away. It’s not as tragic to them as to those around them. My dad’s dementia set in ever so subtly, while my was mom in hospice several years ago. I wrote off the first signs as his desperate desire to keep her with him. He would tell me about a conversation they had just had, and yet she was far beyond the stage of coherent conversation. I would think to myself that he couldn’t possibly have been having a conversation with her; I would spend hours at her bedside as she lay sleeping and there was no conversation to be had. I tried to let it go; he was probably sitting at her bedside talking to her and imagining the witty banter they had enjoyed for the past 59 years. I had come to terms with the fact that my mom was slipping away but I could not accept that I might be losing two parents, so I refused to believe there was anything wrong with my dad. After my mom’s passing, he sometimes called me looking for her, telling me that she had left to go pick up some things from the store and hadn’t come back. It terrified me, thinking he was losing his mind, but then he would correct himself and say, “that’s right, she’s dead.” Somehow that made it ok-I told myself that he was just dozing off, having a dream that seemed real, as we all do sometimes. You know that feeling when you wake up and the stress from a weird dream is still hovering over you until you quickly realize that it was just a dream? I rationalized that the only difference was that he was missing that one mental check that differentiates between dream and reality. What is a dream anyway, but a set of thoughts and images, similar to an experience? We file our lived experiences as memories; it makes sense that a tiny misfiring of some neurons could lead one to misfile a dream as a memory. This is what I told myself for the first few years.

Scientists have some understanding of why people develop dementia as they age.  In most cases, it is caused by a combination of cerebrovascular disease (e.g., a mild stroke, a blood clot, or narrowing of the blood vessels in the brain, effectively depriving cells of oxygen), combined with accumulation of proteins in neurons and the supporting glial cells.  The end result is disruption of neuronal signaling and a decreased ability to form new neural connections, which manifest mainly as impaired memory. That’s how it started with my dad; he would forget that my mom had died and forget that he had moved out of his house into an apartment in a senior living community. He would call me up asking me why I never came to visit-- a few hours after I left his apartment after having dinner with him. I could rapidly bring him up to the present by going over the events of the past year. I hung a note with a list to jog his memory on his refrigerator in hopes that he could look at it when he was confused. It worked to an extent, until he lost the note. But the man I knew was still there most of the time.  We would still have long conversations about history, current events, family, music, and any number of other topics.

It was when the lockdowns started that I really began to lose him. His senior living facility was only allowing “essential” visitors and family didn’t qualify as essential. All the activities they normally held for all the residents - the chamber concerts, card games, exercise classes and even the group dining- were cancelled. They would bring meals to the individual apartments and come around to collect the dirty dishes later. My dad, a brilliant, retired attorney, who lived through the Great Depression, WWII, the cold war, and multiple “viral epidemics”, couldn’t comprehend what was happening. This level of reaction to a respiratory virus made no sense to him. The mental decline was extremely rapid over the next few months, likely accelerated by the social deprivation. He thought I was angry at him and had put him in isolation, and he would call-sometimes asking what he did to upset me, other times asking where my mother was. I would explain, and he would seem to understand, but he slowly succumbed to more vivid hallucinations, thinking he had to go to his office, that he had gone on a business trip, that he and my mom were coming to visit me and had gotten separated. One day he called me frantically telling me he was in a hotel in Texas (we live in California), waiting for my mom to return and that he was supposed to be watching my daughters but had lost them (they were 17 and 19 at the time). When I called him back, he laughed off the idea that he had thought he had thought he was in Texas,  saying, “Oh my, I’m really losing it,” with a chuckle. I tried to laugh it off with him.

One day in May of 2020, he called me about 20 times, panicking that he couldn’t find my mom and asking me to help him find her, telling me that everyone was gone and that he had been locked in a room somewhere. I explained the lockdowns and the past few years after my mom’s death over and over. I was getting frustrated and when the 21^st call came, I didn’t answer. I planned on calling back the next morning, but, before I could do so, I received a call that he was in the hospital. He had fallen and hit his head and had suffered a cerebral hemorrhage. By the time I could get through all the COVID-restriction red tape to visit him in the hospital, he was mentally gone. He was talking to people that weren’t there. He would talk about his daughter Katie, but he couldn’t understand that I was Katie. They tried to do physical therapy to help him walk, but he would faint every time he stood. I arranged to have 24/7 care for him, and the doctor recommended a hospice nurse. For 2 and a half years, he lived in a complex world his head-sometimes he was on a plane, a boat, in a restaurant, in a meeting…he called out for my mom with increasing urgency. Last month, his oxygen saturation and blood pressure began to drop, a typical symptom as death approaches, I was told. This part of the process, I understand. As the body starts to fail, the lungs cannot oxygenate the blood and carbon dioxide builds up. My dad was unconscious during this part of his final days and he did not respond when I talked to him.

The hallucinations of a dying dementia patient could be explained away by some as faulty neural connections, but it is so much more complex than that. I don’t know how science can explain how this undying love he had for my mom led him to create an entire world in his head with vivid images of walks, trips, and conversations with her. Oh, I’m sure some can try, but these hallucinations weren’t random. They were images of what they might have been doing together, had mortality not intervened. There was an order to the disorder in his brain, a kindness that softened his departure from this life. But was he still talking with my mom in his mind? No matter how hard we try, as scientists, to reduce life to chemical reactions and molecular pathways, no one can prove that my mom and dad are not dancing together in an afterlife- the existence of which we can neither prove nor disprove

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