Updated: Mar 10
“I got plenty of money; it’s just tied up in debt,” as the saying goes.
Humor often has a way of getting to the point.
The debt and associated burdens are mounting at staggering levels for caregivers of those afflicted with Alzheimer’s, other forms of dementia, and other serious illnesses.
There are an estimated 53 million family caregivers in the United States—16 million providing dementia care who too often are caught in an unsustainable conflict between caregiving and work responsibilities.
I know this path well—first as a family caregiver, and now as one diagnosed with Alzheimer’s and being helped by my family. Dementia is prominent in the family tree. My material grandfather, my mother, my father and my paternal uncle all died of Alzheimer’s and other forms of dementia after long grueling battles over decades.
Caregivers, mostly family members, provide billions of hours annually of unpaid assistance. “Such efforts create ineffable financial and medical strain among selfless caregivers, who are more prone to deep depression and a breakdown of their immune systems, while often juggling job responsibilities to stay afloat,” says George Vradenburg, chairman and co-founder of UsAgainstAlzheimer’s.
The dementia caregiving crisis is intensely severe for women and those of color who are more likely to have caregiving responsibilities and who are at higher risk of dementia. The COVID-19 pandemic has made this patently clear, forcing 16 percent of Latino and 13 percent of black adults to leave the workforce to care for an adult family member.
According to the National Alliance for Caregiving and AARP, nearly 1-in-4 family caregivers spend 41 hours or more per week providing unpaid care.
Critical help in the form of paid family and medical leave for caregivers is closer than ever, with four weeks of paid leave included in the Build Back Better bill, approved in November by the U.S. House of Representatives. UsAgainstAlzheimer’s, the patient advocacy group for which I serve on the board, is part of a broad coalition that fought to get paid leave for dementia caregivers back into this legislation. Now the fight is on to win support for paid leave in the Senate, hopefully before the end of the year.
I write on the subject from the political middle—as an independent, a moderate, probably as my late dad would call me, an “FDR Democrat,” and I fully understand, as best I can, the political yin and yang over the Build Back Better bill.
My point is simple: paid leave for Alzheimer’s caregivers in any appropriate legislative form is critical and needs to be addressed now or the ravaging impact on family caregivers will continue.
Our nation needs to fix bridges and infrastructure, but we also need to fix lives.
When a family member is diagnosed with Alzheimer's or another form of dementia, the effect on families can be overwhelming—financially, physically, emotionally.
I was the day-to-day family caregiver for both my parents on Cape Cod before their deaths. The oldest boy in a large Irish Catholic family, I had good help from siblings, all of whom were off-Cape and spread out, but who rose nobly to the occasion. It takes a village when it comes to family.
The day-to-day caregiving was grating on me, creeping up like dementia itself, then pouncing, as I juggled my work as a writer, along with family obligations to my wife, three children, and my parents. There were times when I whiffed at all three. Deliverance would have been some paid leave to take pressures off.
My parents insisted on staying in their home, and it was haywire before we eventually started 24/7 care. There were frequent emergencies for both me and my siblings when they visited—fire drills, as I called them. Some were four-alarmers: like times when I had to rush to the emergency room at Cape Cod Hospital because my dad had fallen (again) and was bleeding profusely. Or when my mom would stick forks in sockets, brush her teeth with suntan oil, serve my father (in a wheelchair then) coffee grinds for dinner.
There were times my mom would forget to hang up the phone, and I had to rush to their house late at night when no one answered my calls, fearing the worst. Or when mom would not recognize me or my siblings and would yell, “Get out of my house.” And then there was the time my sister visited to find that dad, a chain smoker, breathing through his oxygen tank had lit up a smoke. Almost “Kaboom!”
“Worse,” I thought at the time, reflecting on the iconic line from Chevy Chase’s Christmas Vacation, “How can things get any worse? Take a look around you…We're at the threshold of Hell…”
There’s an old saying, “Don’t mess with the Irish ‘cause they don’t know how to die.” My dad was a perfect example. He had nine lives and then some. He wouldn’t let go when it was his time. Doctors instructed me to head to the pharmacy to pick up a prescription of morphine and bring it to a hospice nurse at the house. The morphine was to let him go, and I had to bring this death sentence to him. The thought still haunts me. My father died that night with my mom, in full Alzheimer’s, lying next to him, with her right arm around his chest. Mom died four months later in a nursing home near my house. I was there for both passings.
During those caregiving days, I began experiencing the symptoms of dementia myself after a serious head trauma that doctors later said had unleased a monster: loss of short-term memory, loss of self and place, rage, hallucinations, not recognizing people I’ve known for years, loss of balance and the like, as the fog of dementia rose from my neck to my head like the sea on an incoming tide. Unable to multi-task and work at a high level, I sought help from my primary physician, who referred me for clinical tests and various scans. The diagnosis was no surprise: Early Onset Alzheimer’s, which can take 20-to-25 years to run its devilish course.
I’ve slugged my way through this, for now, with the blessing of a good IQ, and what doctors call “cognitive reserve” and “neuropathy,” the brain’s innate ability in some to reorganize synaptic connections. But the horizon is getting closer, and I worry that my world is now flat, and I’m heading for a freefall in time, as it was for my parents.
Now my wife Mary Catherine and our children, Conor, Brendan, and Colleen, are collectively in a family caregiving role for me. Knowing what I can do now, and what I can’t do, they are helping to fill in the blanks, connecting stray dots—a backfill that at times is stressful for them, challenging, and requires the patience of a saint when dealing with a stubborn Irishman, who refuses to give up, to give in.
My sister Justine has been in the same trenchant caregiving role with her husband, and my nieces and nephews were caregivers to their father, who recently died of Alzheimer’s.
My time will come, as with others in dementia. I often reflect these days on William Ernest Henley’s poem Invictus,“My head is bloody, but unbowed.”
Paid leave for family caregivers of those with Alzheimer’s and other forms of dementia is not a full-scale panacea, but it is critical in making this turbulent voyage more secure, batting down some of the hatches.
The Senate should move with haste to pass this much-needed and long-overdue legislation.
Greg O’Brien, a career journalist, is a member of the board of UsAgainstAlzheimer’s. He is author of the international award-winning On Pluto: Inside the Mind of Alzheimer’s.
Greg O’Brien is author of On Pluto: Inside the Mind of Alzheimer’s, the first book written by an investigative journalist embedded inside the mind of Alzheimer’s chronicling the progressions of his own disease. He is a member of the Board of Directors of UsAgainstAlzheimer’s.