Meryl Comer's Most Personal Assignment: Caring for Her Husband with Alzheimer's

The man I live with is not the man I fell in love with and married. He has slowly been robbed of something we all take for granted—the ability to navigate the mundane activities of daily living: bathing, shaving, dressing, and using the bathroom. His inner clock is confused and cannot be reset. His eyes are vacant and unaware, as if an internal window shade veils our access.

Before I grasped what was happening, I was hurt and annoyed by my husband’s behavior. Those feelings dissolved into unconditional empathy once I understood the cruelty of his diagnosis—early-onset Alzheimer’s disease. He was fifty-eight.

At first, I ran interference and fought for him because it was the right thing to do. He was slipping out of control, used childlike and helpless, his social filter stripped away. He shadowed me because I was familiar and safe—even when he could no longer remember my name.

I always loved him, but during our marriage he was often aloof and unreachable. In illness, unlike in health, he made me feel needed and important to him. Neither a scientist nor a neurologist, I have spent close to two decades trying to decipher what’s going on in my husband’s head. How hard and unfair it is for such a smart man to lose pieces of his intellect and independence. His disease is my crossword puzzle.

Harvey has long forgotten me, but I remain constant as his co-pilot and guardian. I bear the burden of all decisions for us both. The demons and terror of his world define mine. I play into his reality and pretend that his fate and our life together are not doomed. Unfortunately, I know better.

Alzheimer’s distorts and destroys shared memories that bind family ties. Caregivers are not unlike victims who survive a hurricane, sifting through rubble to rescue faded, storm-drenched photos or sentimental objects. We piece together what’s left of our past and struggle to put down building blocks for the future.

I need to make some sense of my journey through this storm. My bookshelf is lined with tomes on dementia care, yet the page I need always seems to be missing. Each brain unravels in its own quirky and idiosyncratic way. I have learned firsthand that there is no single solution to taking care of someone with dementia.

Many times, personal stories involving Alzheimer’s gloss over the unseemly details of care. They’re written as love stories of unquestioned devotion, or living memorials to honor someone during better times. Why not, as spouses and caregivers, do whatever works for us? It’s our version of pain management.

But I never wanted to embellish or soften the edges around the truth. It does not do justice to the cruelty of the disease. I offer you my own experiences from a position of hard-won humility. I hope you will thread them with your own.

When I say I have cared full time for Harvey in our home all these years, many ask me why. Even now, there is always an initial reflex that makes me want to say, Do I really need to explain myself? After all I’ve been through, I realize the question is a natural one, a human one, a social one. The interlocutors are not judging me, but rather vicariously checking themselves. In questioning me, they’re testing their own capacity to deal with the diagnosis of Alzheimer’s disease and the potential impact it might have on their relationship with a partner or parent.

When people hear my story, they sometimes tell me they wouldn’t make the same choices. I do not hold myself up as an example to follow. No one who has ever been on the front lines of care questions someone who says, I can’t do this anymore.

But I do want to be part of the last generation of caregivers trapped by a loved one’s diagnosis, an absence of disease-modifying therapies, and a troublesome lack of quality care options. When it comes to Alzheimer’s, caregivers are frequently too worn out or isolated to protest. Perhaps this is why advocacy around the disease has often lacked the passion and energy that characterized the cancer and HIV/AIDS communities.

But how will people understand if we don’t tell our stories without apology?

Alzheimer’s disease today affects a reported 5.4 million people in the United States and 44 million worldwide. Like a stealth invader, it is quietly depleting aging populations globally while pushing past cancer and HIV/AIDS as the most critical public health problem of our time. Every sixty-eight seconds, another of us falls victim. Yet fifty percent of those with dementia never get diagnosed.

There is not a single FDA-approved drug that actually slows the progression of Alzheimer’s disease. There have been too many failed late-stage clinical trials with promising drugs that seemed to work until it became clear they did not.

Sometimes I think we’d be better off if Alzheimer’s disease were a brand-new emergency instead of a century-old threat to which we have somehow become inured. Perhaps people would understand that when it comes to this disease, everyone is a stakeholder, because everyone is at risk.

There are also fifteen million caregivers just like me—unintended victims, not among the official count. Add to our legions those caring for loved ones young and old with diseases of the brain, traumatic brain injuries, and other chronic diseases complicated by a memory disorder. We speak the same language. Our numbers amplify the collective pain that makes it impossible for me to rest.

The only way to minimize the effect of Alzheimer’s disease is to get out in front of it, delay its onset, or even reverse its devastation of the mind. We need to move toward early diagnosis and study adults who do not yet show symptoms—people like you and me. Such a decision entails hard personal choices, risks, and emotional discomfort.

It means demanding safe and clinically valid genetic tests that let us learn if we are at higher risk of getting Alzheimer’s disease. It requires managing our lives and choices under the shadow of the possibility of disease.

Those of us who are fifty years or older must stop viewing ourselves as ageless. All of us should track our cognitive health just as we do cholesterol levels or blood pressure.

I write for all of us who are still well but have seen the devastation of Alzheimer’s disease firsthand. The emergency is with us and in us.

I write to clinicians reluctant to diagnose because they can’t effectively treat. Please know the inadvertent trauma you inflict on families left confused, hurt, and helpless. Then time runs out on the ultimate conversation with our loved ones about end-of-life wishes—their minds erased. It’s simply too late.

I write to reach the generation of our adult sons and daughters who struggle to understand our lives as we care for a loved one with Alzheimer’s. They stand on the precipice and wrestle with issues and decisions similar to the ones we faced. They deserve better options and not the bankrupting burden of our care.

This is not the legacy we want for our children. This is not the way any of us wish to be remembered.

I write for my grandchildren because, no matter how hard I tried, Alzheimer’s blanketed my home with sadness. I know that each of them, unconditionally, has been my salvation. One day, I hope they’ll read these words and appreciate my choices.

As I write these words, a faint glow fills the room I share with Harvey. He’s always present, even though he is absent. There is an intimacy in our isolation. Nonetheless, I am willing to open the door to our room in the hope that you will find a way inside. Only then will my story be worth the pain of its telling.