On Futility, Loving Someone With Dementia, and the Search for Meaning

My mom, second from right. Research on dementia suggests it was already attacking her brain when this photo was taken, decades before her symptoms appeared.

Note: I originally published this on an older blog, two years before my mom died. A year out from her death from dementia, this feels even realer and more important than ever. It’s not the usual, excessively rosy picture we get of dementia and aging. But we need more than a single dishonest excessively optimistic drumbeat. Dementia is brutal. Acknowledging that reality can make those of us living with it and those of us offering care feel less alone.

One of the last videos I have of my mother speaking features her lamenting the lies of online dating. She's 62 in the video, but still looks like a runway model: tall, with high cheekbones and perfect blonde ringlets. She's a retired marriage and family therapist, a musician, and smarter than everyone she meets. Unlike most women of her generation, she does not attempt to hide that fact.

"I don't know if they think they're going to grow before they arrive to our date," she sighs. "Maybe they just think they're going to grow on me? Like I'm supposed to get excited about a male tumor?" She points to our waiter, draws him over to us, and proceeds to interrogate him about why heterosexual men are so disappointing. "I'm not drunk," she reassures him. "This is natural. Disappointment with men is my natural state."

Four years later, at 66, she could no longer speak.

I watch this video on repeat, searching for signs of what was to come. There's now evidence that dementia lurks in our bodies, waiting in our cells, for 20 years or longer before it stages its attack.

I see no signs, aside from her obvious humanity. That's warning enough. Time eventually robs all of us humans of everything we have. Sometimes it's in one catastrophic incident. More frequently it's in the slow erosion of aging, lost loved ones, and illness. We cannot predict when or how we'll lose our lives, our health, or our memories. It's terrifying. We have constructed elaborate rituals and cultural lies to avoid this reality.

Dementia forces us to face the futility of existence, and the fact that it will eventually end--probably in suffering and tragedy. There are no fairytales or lessons or triumphs of the human spirit in the cold story of dementia. There is beauty at looking at things the way they are. There's meaning there, even if we can't wrap things up into neat little packages.

Six years ago, my mom told me she was having trouble finding words. I thought she was experiencing the challenges of normal aging.

A year later, we sat in a neurologist's office as he told her that she had Alzheimer's, that nothing would help, and that she should give up hope. That's how neurologists talk to old people. If you call them on it, they'll condescendingly ask where you went to medical school.

My mom insisted that he was wrong. She asked for a referral for a second opinion. He told her that if she would not blindly accept his proclamation, he couldn't see her anymore.

This is how we treat old people, and particularly old women. We refuse to believe them.

My mom was right. Five neurologists and dozens of tests later, we know that she has a form of dementia called primary progressive aphasia. It's a type of frontotemporal dementia that begins with speech difficulties, eventually robbing its victims of their ability to speak. That's just the beginning of the theft, though. In time, it takes everything, even the ability to walk.

It turns out that getting the right diagnosis never really mattered much. Dementia is a lot like a funnel. At the wide top end are a variety of symptoms correlated with dozens of disorders. As these conditions progress, the funnel narrows. All forms of dementia end the same. Dementia is a terminal illness.

People think dementia is just memory loss. That would be hard enough. We derive our identities from our memories. But no, dementia is a cruel master. It wants everything. That's what it eventually takes, if its victims live long enough. Dementia robs us of what makes us feel human: our brains. It starts with executive functioning, moves onto memories, then attacks personality. Eventually it targets motor skills, speech, even the ability to eat. It takes away everything we can do.

Few neurologists tell their patients about this. About half of them don't even bother to tell patients with dementia that they have the disease. Our culture does not like difficult conversations. It does not like exercises in futility.

Visit any geriatric physician and you'll see brochures extolling the virtues of early dementia detection.

What those brochures don't tell you is that there is no cure for dementia, no treatment that can reverse symptoms, no chance of surviving, and that no one knows what it feels like to be a person with advanced dementia because when that happens, a person can no longer communicate. We want to control dementia by diagnosing it early. But there are some things we can't control.

My mom is deep into her dementia battle now. She struggles with many daily functions. Sometimes I wonder if she's in there at all. I see fewer and fewer flickers of recognition flash across her face. It has been almost three years since I have heard her utter a single word.

Caregiver guides tell me I'm supposed to find meaning in helping my mom. They assert that caregiving will bring us closer. They tell me caregiving deepens our relationship and gives me a sense of purpose.

They're lying.

I don't find meaning in this. How could I? Why is this what we tell people?

The preferred dementia story goes like this: A parent gets dementia. It's sad, but it brings the family closer. Heroic doctors support everyone. Eventually, the parent dies and the family enjoys joyful memories of a better time.

We'll accept a story with a tragic end, but only if it lets us feel good about ourselves, or offers a meditation on the meaning of life. The truth is that most people's dementia stories go more like this:

A parent gets dementia. Doctors do not help. They offer conflicting diagnoses, judgment, and no resources. The family fights over care. Caregiving is a nightmare, not a source of joy and meaning. The parent lingers and suffers for years. Memories of who they were grow dimmer, darkened by the specter of dementia. Then they die, and everyone must live with their regrets and uncertainty.

The truth is that life is rarely a simple narrative with a happy ending. Instead, it's full of happy and sad endings. Your life may end at a sad moment or a joyful one. It's the luck of the draw. Trying to find a specific meaning from it all is an exercise in futility.

Sometimes things are hard. Sometimes life is bad. Sometimes life gets steadily worse. And this is almost always the reality for people with dementia and their caregivers.

Our memories are who we are. They form our values. Our personalities depend on these memories. Without them, who are we? Are we anyone at all? I don't know. All I know is that the mother I once knew is not in the body she once occupied. I don't know where she went. I don't know when she left.

Dementia caregivers look desperately for signs that the person they love is still in there. We want to find meaning. We want to find hope. There might not be either. We live in a culture that tells us that the only way to survive suffering is to find meaning in it, to assign it some arbitrary purpose. Toxic positivity demands that we never, ever just sit in the darkness and call it what it is.

My mother did not get dementia so I could learn to be better, so her partner could learn to be a caregiver, so that we could all experience some transformative triumph of the human spirit. My mother got dementia because she was unlucky and because her brain failed. There was no point. There is no point. The only meaning to be found is in the life she had before dementia.

The only lesson to be found is this: the one of vulnerability and uncertainty. We spend our lives constructing elaborate rituals to escape the darkness we all face. Dementia bludgeons us over the head with our fundamental vulnerability. Perhaps that's why we cannot have real conversations about it. Perhaps that's why we want to pretend that aging in place will solve it, or that it's little more than memory loss, or that early diagnosis will do anything other than ruin the few good years a person has left.

We are not in control. And the only thing we all fundamentally share is our vulnerability. If we build upon that, perhaps we can build something better--for people with dementia, for those who care for them, and for all of the rest of us