America to Families With Alzheimer’s: You’re on Your Own

Ella Castle

I recently accompanied the man I love to his doctor’s appointment. In the blank for emergency contact, he filled in my name. He is my emergency contact, as well. In the marital status section, he checked the box marked married. I am not his wife. When I am forced to […]

I recently accompanied the man I love to his doctor’s appointment. In the blank for emergency contact, he filled in my name. He is my emergency contact, as well. In the marital status section, he checked the box marked married.

I am not his wife.

When I am forced to face the relationship box at the doctor’s office, my pen hovers. Officially, though I share a bed, apartment, and morning coffee with my beloved, I am both single and divorced. Occasionally, the forms will have the word “partnered” or “domestic partner” on them, so I’ll check one of those. But these words, though true, do not describe our legal rights vis a vis the American healthcare system.

For instance, though my partner’s company covers the healthcare costs of domestic partners, I am not eligible to be on his insurance, nor he on mine. One time, while filling out the marital status section of a medical form, I scribbled a tiny box next to the words, “In a stable and loving domestic relationship with a man whose wife has advanced early onset Alzheimer’s,” and checked that.

Today, more than six million Americans are living with Alzheimer’s disease, a number projected to climb to thirteen million by 2050, with women disproportionately affected, both directly—two out three people living with Alzheimer’s are female—and indirectly, as caregivers.

Most of these millions will eventually need full-time care, some for years or even decades. Eighty-three percent of that caregiving is undertaken by family members, friends, or other unpaid caregivers, who face substantial emotional, financial, and physical burdens. Moreover, the isolation and stress of caring for a person with Alzheimer’s puts their own brains, in turn, at greater risk for succumbing to the disease.

One of those millions of unpaid caregivers is the man I love. For several years, he devotedly cared for his wife by himself. But when she needed help performing daily tasks on her own—eating, bathing, dressing—the burden became too heavy for one person to manage. He still had two boys to raise, now on his own, plus a demanding job through which he receives the health insurance that pays for his wife’s medications and doctors appointments, but not what she requires most, which is day-to-day care.

So, thanks to the generosity of his parents-in-law—who stepped in to help fund their daughter’s care, after the financial strain on him became too great—he was able to hire outside caregivers to care for her in their home, a yearly six-figure burden.

Most Americans cannot afford this care, placing them in an untenable situation. Barring the existence of an adult family member willing to perform the task of 24/7 caregiving gratis—an onus that falls predominantly on the shoulders of grown daughters—healthy spouses have two equally unappealing options: they can either quit their job to care for their spouse, thereby losing access to both their income and affordable health insurance; or they can divorce the spouse for whom they vowed to care, in sickness and in health—or perform other legal gymnastics, depending on the state—so that the spouse with Alzheimer’s can thereby qualify for Medicaid, which pays for basic memory care. This maneuver even has a name. It’s called a “Medicaid divorce.”

Suffice it to say, we may be the only industrialized nation in the world in which divorcing one’s spouse with dementia is the best or sometimes only way to assure that they receive access to memory care.

My beloved could not imagine divorcing his wife with Alzheimer’s, nor would I ever want him to. Watching him continue to care for her so lovingly and thoughtfully, until death do they part, is one of the many things I love about him. He travels often between our two homes to tend to her; takes her to her frequent doctor’s appointments; stands in line after line at the pharmacy and dispenses her multiple medications; accompanies her to weekly rehearsals and performances with her Alzheimer’s music group, The Unforgettables; holds her close when she spontaneously decides she needs to dance.

I’ve also grown to love his wife’s parents, who have generously welcomed me into their lives, though they could have just easily have not, as well as his two sons, both of whom invited me to help drop them off at college and get along well with my children. Together, all of us have created an atypical blended family, one which I imagine will become more typical (and hopefully acceptable) in our society as Alzheimer’s cases continue to rise, and from which we derive the kind of love that had not only gone missing from our lives, its prior lack put us at greater risk for illness.

A silhouette of a woman that is crumbling apart with cracked stars around her

Photo Illustration by Luis G. Rendon/The Daily Beast/Getty

Yet at the doctor’s office I am officially single and/or divorced, and my beloved is married to a woman who no longer understands she has a spouse.

This issue of labels wouldn’t matter so much to either of us if affordable healthcare in our country were a human right rather than a privilege bestowed only upon those with a full time corporate job or a spouse or domestic partner with coverage. Instead, we are being charged more for having created a loving dyad that exists outside the outdated modes dictated by our insurance industry.

But I’m not arguing for the right to be on my beloved’s health insurance nor he on mine. I’m saying it’s well beyond time to burn the whole system down and start from scratch with single-payer, universal care, no matter whom we love or with whom we share a bed, home, or office.

The health insurance industry, for too long, has held a chokehold over both our healthcare system and our politicians, spending a whopping $713.6 million on lobbying in 2020 alone, an increase of 70 percent from the $358.2 million it spent lobbying in 2000 to keep us in this untenable situation in which none of us can afford either to get sick or lose a job or, heaven forbid, both.

For years, I have written about the absurdity, untenability, and sexism of America’s for-profit healthcare system.

There was that time, as a newly single mother, I was fired from my job at an online healthcare publication for spending too much time at Memorial Sloan Kettering Cancer Center, thereby denying me access to the follow-up MRI needed to make sure my breast lump was gone.

And there was the time I rushed to my primary care physician, bleeding from the cervix five years after a hysterectomy to cure the adenomyosis that took sixteen years to diagnose, and was told—with appropriate horror and apology—that they did not have a pulldown menu option for reimbursing non-uterine bleeding.

Suffice it to say, we may be the only industrialized nation in the world in which divorcing one’s spouse with dementia is the best or sometimes only way to assure that they receive access to memory care.

There was also the time I went to the emergency room, complaining of intense pain after that cervix’s subsequent removal, and was informed that they did not have a speculum in the ER to look inside me. Days after that, I bled out at home from vaginal cuff dehiscence—a rare and often deadly complication from vaginal surgery that should have been caught at that hospital without a speculum—and wound up taking UberPool to the nearest emergency room, for fear of the cost of the ambulance.

And let’s not forget the time after I lost my hearing from COVID, and my ENT was scrubbed in to perform a simple operation on my Eustachian tubes, but United Healthcare denied coverage for the surgery a few minutes before it was scheduled to start. (And if you think hearing aids, which cost thousands of dollars, are usually covered by your insurance, think again. Mine are not.)

Meanwhile, my daughter—like many of her med school classmates, despite paying in-state tuition—is busy racking up $230,000 in student debt while living on food stamps and Medicaid in her quest to become a primary care physician, one of the most necessary but least well-remunerated jobs in medicine. (Never mind that we currently have a shortage of PCPs projected to reach between 17,800 and 48,000 by 2034.)

Every day, in the clinic in which she’s training, she speaks to patients who either cut their pills in half or stop taking life-saving medications because they can’t afford them. She got so fed up with what she was seeing, she joined the board of SNAHP, Students for a National Healthcare Program, fighting not just for her patients in Buffalo but for people like her father, my ex-husband, who is walking around without health insurance because—like so many Americans who’ve lost their jobs—he cannot afford COBRA.

All that being said, nothing has opened my uncovered-by-insurance eyes to the sadism and untenability of our for-profit healthcare system as much as sharing a home and a life with a man caring for a wife with Alzheimer’s. It is untenable to expect family members of those living with Alzheimer’s to either bear a yearly six-figure burden for memory care, quit their jobs, or get a divorce.

Had his wife been born in one of the European countries with universal healthcare, she’d not only have access to either free or affordable memory care as a basic human right, she’d also be eligible to live in one of their dementia villages, which provide residents and their families with the kind of empathic care currently missing from our country’s Alzheimer’s paradigm. (Not that we even seem to have a working or updated plan to deal with Alzheimer’s, though one was implemented back in 2011: a year before my beloved’s wife, then in her late forties, started showing her first signs of neurological decline.)

A silhouette of a man and woman holding each other with cracked stars around him

Photo Illustration by Luis G. Rendon/The Daily Beast/Getty

As more and more Americans are diagnosed with dementia, we must face an obvious fact: care is healthcare. Full stop. It’s not only right there in the word itself, it is critical for the health and welfare of both our citizens individually and our society as a whole. And access to humane caregiving must become a human right in our country, too, not a privilege reserved for the wealthy.

If my home catches on fire, I do not worry about how much it will cost to put out the fire. I call 911 and wait for the firetruck. We accept this cost to our society to keep our homes safe.

So why, when our bodies or brains succumb to illness or decline, do we, as a society, accept anything less? Alzheimer’s is not an isolated disease without collateral damage. It is an ongoing blaze that threatens to burn down everyone and everything in its wake. And for now caregivers, absent a cure, are its only firefighters.

“The world is failing people with dementia, and that hurts all of us,” said Dr. Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization. “We need concerted action to ensure that all people with dementia are able to live with the support and dignity they deserve.”

Until that day, when our society finally wakes up to the realities of dementia and decides to invest in and share its burdens and costs, I’ve told my beloved that, should I, too, succumb to Alzheimer’s, I want him to do everything in his power to help me commit assisted suicide before my brain deteriorates too far to consent to it. I don’t want my body, absent a functional brain, to become a financial sinkhole, either to him or to our five children.

Of course, we’d have to fly to Europe for that, too.

Deborah Copaken is the New York Times bestselling author of several books, including Ladyparts, as well as the women’s health Substack by the same name.

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