My family faces an impossible choice: caring for our mom, or building our future
Caregiving can have an especially heavy penalty for women and millennials.
By Kristina Brown
Kristina Brown is in her fourth year at the Yale School of Medicine.
final year at medical school began this fall with an unexpected flight
home to Colorado. My mother has multiple sclerosis, and my sister, her
caregiver for the past three years while I attended school in New Haven,
was moving away to start a new job she’d suddenly gotten. There was no
one else but me. I postponed my hospital rotation and canceled my board
exam. I notified the school registrar, saying I was uncertain of when I
could return and resume my studies.
people assume that having a disability guarantees access to a network
of resources. Not so. Because my mother has an income of $36,000 from
her divorce settlement, is younger than 65 and lacks a 10-year
employment history, she is disqualified from receiving Medicaid (despite
its expansion), Medicare and Social Security Disability Insurance. Her
private insurance company, like many others, does not cover home care
for daily needs. The median cost of this service, for help seven days a week,
is more than $80,000 per year. Like many families, we could not afford full-time coverage. This posed a life-altering dilemma:
One of us had to stay home to care for her.
my sister away at college, I went first: At age 16, when our
43-year-old mother lost the ability to walk, my life shifted to
sleepless nights and baby monitors. Her disease progressed swiftly; soon
she could no longer stand, eat or bathe without assistance. For six
years, I provided 10 hours of care every day.
woke up at 5:30 each morning. After helping my mom with a bed bath,
brushing her teeth and lifting her into her wheelchair, I would arrive
late to school, breathless and racking my brain for an excuse to tell my
English teacher. I accumulated enough pink tardy slips that, despite
being a straight-A student, I received a letter threatening my
graduation. I dedicated weekends to caring for my mother and missed
class to make it to her doctors’ appointments. I quit the cross-country
team after finally making varsity. I skipped prom. I turned down the
chance to give the graduation speech. I lost my adolescence, and still
my mother needed more support than I could give.
though I told no one about my home life, it permeated every decision I
made. When I received my high SAT score in the mail, I cried tears of
disbelief: I soon received a flood of invitations to apply to Ivy League
schools and full-ride scholarship offers from out-of-state universities
I longed to explore. I declined them all, knowing I had to stay nearby
for college. To save money on home health-care costs, my sister and I
spent weekends with our mother; that way, we wouldn’t have to hire extra
help for the physical tasks that required two people. Midway through my
sophomore year, we both moved off campus and back in with her.
knew that even if I reached out for assistance, few resources were
available: Most nursing facilities serve only seniors. And even if we
found a facility for younger adults with disabilities like my mother’s,
the cost of that care could exceed $10,000 a month. Home care is only
slightly more affordable, at $6,000 or $7,000 a month. My mother is on a
first-name basis with all the local paramedics — not because of medical
crises, but because of the many nights when we needed another set of
hands just to help her get out of her wheelchair and go to bed.
These strains can take a toll on caregivers’ health. Sixty percent of people caring for adult relatives or friends also have
full- or part-time jobs, according to the AARP’s Public Policy Institute. More than half of caregivers report a decline in exercise
, poor diet and not seeing their doctor as needed. Chronic stress in caregivers has been shown to increase the risk of high blood pressure and heart disease
. Compared with their peers, elderly individuals who serve as overburdened caregivers are 1.6 times more likely to die within four years. Only 13 percent of caregivers are
between the ages of 18 and 29, according to Gallup-Healthways, so fewer
studies exist on the effects on younger people. From my own experience,
I can say that I routinely missed meals and sleep during my
adolescence, and that I strove to hide my exhaustion, weight loss and
social isolation from the people around me.
recent years, I’ve taken out loans to keep up with mortgage payments on
our family’s home in Colorado, and, for additional income, worked
shifts in the radiology department at the university’s hospital.
Combined with my sister’s meager salary, this barely ensures our
mother’s survival. We are starting to run out of options: We could sell
our home to qualify for state assistance; I could leave medical school to become a full-time caregiver for my
mother. But taking these extreme, temporizing measures would only drive
us further into a vicious cycle of financial instability.
fuels generational poverty, disproportionately affecting millennials
and women who take on that role in their families. People like my sister
and me, who begin caregiving as first-time job-seekers or students, may
face significant employment challenges:
Millennial caregivers are more likely than previous generations to be
passed over for promotions, forced to reduce their job responsibilities
or fired, according to the TransAmerica Institute. Just a few years of
caregiving early in life creates cumulative financial setbacks for
women, making them less likely to have retirement savings
and more likely to require government assistance. A 50-year-old woman
earning $40,000 a year who leaves the workforce to care for a family
member for five years loses 11 percent of her potential lifetime earnings
($256,753), according to the Center for American Progress. If she does
the same at 25, she loses 20 percent of her lifetime earnings
($679,000). When women become caregivers, they also become 2.5 times more likely to live in poverty.
are resources supporting caregivers, but
families like mine fall through the cracks. The Family and Medical Leave
Act allows for 12 weeks of leave each year so that people may tend to
loved ones, but this time off is unpaid. While many workplaces have paid
parental leave, and educational institutions offer stipends for
students with children, such policies
exclude other kinds of caregivers. Programs such as respite care and adult day care often have limited funds, or come with out-of-pocket costs or age requirements.
Last spring, Washington became the first state to pass a publicly funded long-term-care benefit.
It provides individuals $100 a day, with a lifetime cap of $36,500, to
pay for services including caregiving, meal delivery and nursing home
fees; lawmakers estimate that the measure will ultimately save the state
billions in Medicaid costs. Widely adopting such programs would be
expensive, but without help, families like mine will be crushed by needs
we cannot meet.
after a few weeks, my family pieced together a patchwork of caregivers
who could help my mother with bed, baths, meals and overnights. Since we
couldn’t afford aides from certified agencies, I recruited people
through online ads and trained them in her needs and routines. I filled
out reams of applications and made a flurry of phone calls to my
mother’s social worker, the state’s health and human services
department, and the regional disability resource center, seeking
financial support. (So far, none has arrived.) This arrangement has
allowed me to return to campus for now. But it’s also haphazard, and
could collapse at any moment. Home health aides have quit unexpectedly,
leaving my mother to forgo regular meals and bathing while, thousands of
miles away, I scrambled to find replacements, calling the police
department to ask them to perform welfare checks. From week to week, I
don’t know whether my mother will have the care she needs.
Numbers alone cannot capture the costs we’ve incurred: every sleepless
night, every missed opportunity, every surge of shame and guilt. Some
nights, when I’m away at medical school, my mother calls me to apologize
for being sick: She always dreamed of being able to take care of me and
my sister, and instead our youth has been devoted to taking care of
her. It took me years to feel worthy of pursuing a separate identity for
myself. In the face of insurmountable health-care expenses, my family
had become numb to the sting of dreams deferred. Yet with each day more
uncertain than the last, I focus on carving out a new future for us amid
this fragile present.