What is it like when you have to quit work so you can be a caregiver to a
parent, friend or spouse? Those who don’t know may soon find out.
Between the aging of boomers—the oldest of the 74 million demographic
turns 80 in seven years–the increase of male caregivers (40 percent), the
25 percent figure of Millennials in this role, and the projected dwindling
ratio of caregivers to care recipients (7:1 in 2010, 4:1 in 2030, 3:1 in
2050), all generations are impacted.
Currently, family members take on more than 95 percent of non-professional
care for those not in nursing homes. A National Alliance for
found that 34.2 million caregivers in the U.S. had taken care of a 50+
family member in the prior 12 months, with 18-49 year-olds providing 48
percent of the care. And, this is dazzling: family caregivers provide 37
billion hours of care a year in the U.S. alone.
Deciding that you can’t do two jobs well at once and need to leave the
workforce can have deep ramifications on your finances, career, personal
time and relationships—not to mention your emotional state. Find out how
to become a caregiver for your parent by considering the following topics.
Where to begin? Let’s start with the positive. Caregiving can be rewarding
and self-affirming. A 2017 Merrill Lynch/Age Wave
found that 91 percent were glad they could do the caregiving and 77
percent said they would do it again.
You may ask, who are these people? That’s because taking care of a family
member evokes a lot of charged emotions, and some people don’t have such
an upbeat view.
Lively asked its Caregivers Connect Facebook
of informal caregivers to weigh in on their feelings. And while some of
them saw it in a positive light, the words most used to describe what they
were going through was “angry,” “resentful,” “guilty,” and “isolated.”
As one Facebook member puts it: “I left a very lucrative consulting career
to care for three family members. I cherish the time I had with them, but
find myself forgotten by my industry, friendless due to my lack of
availability to them, marriage in the toilet. . .I expended all that I
was. There does not seem to be much left. But I would do it all again.
Says another who is no longer working: “I feel guilty, not from doing
things for my dad, but for neglecting myself and my spouse and my house
and a million other things. . .I feel like I am chaperoned on my guilt
trip by other family members that are always hinting I should do more and
do better when they are very quick to avoid some of the hard jobs.”
Why Working Caregivers Quit
Some employers just don’t get it. A 2019 Harvard Business School
found that fewer than 25 percent of companies think that their employees’
caregiving responsibilities impact their performance. Yet, more than 80
percent of workers say it has!
The report also noted that three out of four workers have caregiving
responsibilities. In that Harvard study, 32 percent of respondents
voluntarily left at least one job during their career to care for “an
elderly relative.” A quarter more quit due to a disabled or ill spouse,
partner or family member.
In fairness to employers, some workers don’t tell their bosses that they
are caregivers. They worry that they will not be taken seriously or be
perceived as committed enough, will lose plumb opportunities, be demoted
or punished financially. They may also have the unsympathetic boss from
hell or an un-family-friendly work environment.
Some companies do not provide benefits, such as paid time off, flexible
work hours, telecommuting or employee assistance programs for
eldercare—benefits that might keep caregivers in the workforce longer.
It’s possible they do; you just don’t know about them.
The Money Impact
When it comes to leaving work for caregiving, emotions may not be
quantifiable, but finances are. One
estimates that women lose an average $324,044 in wages and Social
Security; for men it is $234,000. Many are at the peak of their earning
potential. It is also no secret that older adults looking to return to
work after being out for a while typically have a tough time landing a
Not many of us have wads of disposable income. We count on our salaries to
cover daily living and family expenses and to save for our own retirement.
(Just one-third of adults age 40+ have money saved for long term care
Increased longevity means that retirement is getting longer and will cost
more. So many can’t afford to pay for help for Mom, a spouse or a sibling,
let alone themselves.
Look at these numbers:
- According to the Employee Benefit Research Institute, 68% of families
headed by someone 55+ are burdened by debt
- A recent Genworth Cost of Care
determined that the annual national median fee for homemaker services is
$48,048, $50,336 for a home health aide, $18,720 for adult day care,
$48,000 for assisted living and more than $89,000 and $100,000 for a
semi-private and private room in a nursing home, respectively.
When you no longer work, the buck literally stops there. As one Caregivers
Connect Facebook member puts it, “Five years ‘off’ has had an
unrecoverable impact on my retirement savings.”
Action Steps When You’re Still Working or After
Check out these suggestions, courtesy of GreatCall’s Facebook group and
- If you have long-term care insurance, find out if it will pick up the
tab, or at least part of it, for in-home care. Many policies reimburse
you for chronic conditions, disabilities or diseases like Alzheimer’s.
It may help for personal care (i.e. dressing, bathing), occupational,
physical, speech or rehab therapy, or skilled nursing. Know that
Medicare does not pay for care services in-home or for adult day. It
might pay for respite care.
- Can you get paid for caregiving? If your parent or spouse is enrolled
in Medicaid, you may be paid through a waiver program, but it depends
on the state. Usually, it is the hourly minimum wage in the state. A
few states have programs for those who don’t qualify for Medicaid. To
find out more, check with your local
Area Agency on Aging</a >. Veterans might want to contact the Veterans’ Administration’s
Veterans Directed Care </a >.
If your siblings decide to pay you for caring for their parent, it’s a
good idea to draw up a personal care agreement (a.k.a. family care
agreement), a written contract stating the terms.
To make it official, your local Area Agency on Aging may know of a pro
bono lawyer who could draft it, or you can find an elder care lawyer
through the National Academy of Elder Law Attorneys.
An aside: make it clear to your siblings that even though you are the
primary caregiver, you expect them to help (financially, with errands
or other responsibilities). Consider care coordination apps and
websites such as
Lotsa Helping Hands</a >.
- Again, it depends on the state, but if you quit work to care for a very
ill family member you can probably collect unemployment (http://www/servicelocator.org/OWSLinks.asp</a >).
One Facebook member has gained perspective—and should haves—after leaving
her job to care for her mother. “Nineteen years later, she’s gone and I’m
worn out,” she says. “Would I still do it if I could go back? Yes, but
with changes. I would ask for help sooner and more often, take advantage
of respite care and prepare for the time after caregiving.” Good advice
for us all.