Leaving Work to Be A Caregiver
By Sally Abrahms
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 Caregiving/AARP study 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 perent 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.
Where to begin? Let's start with the positive. Caregiving can be rewarding and self-affirming. A 2017 Merrill Lynch/Age Wave study 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.
GreatCall asked its Caregivers Connect Facebook group 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. Sigh."
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 study 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 study 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 job.
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 insurance.)
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 survey 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. Expensive!
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 outside experts:
1. 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.
2. 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. Veterans might want to contact the Veterans' Administration's Veterans Directed Care.
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 CareZone, CaringBridge and Lotsa Helping Hands
3. Again, it depends on the state, but if you quit work to care for a very ill family member you can probably collect unemployment.
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.