Editor’s Note: This story was originally published in October 2018.
Usha Tewari has two full-time jobs, but she only gets paid for one of them.
Tewari works as an administrator for the Orange County Property Appraiser in Orlando, Florida, but she started an unpaid position on Jan. 28, 2017 — the day her mother, who was diagnosed with Alzheimer’s disease, moved in with her.
Tewari made the decision to move her mom, Mila, in with her after she noticed that the staff at a rehab facility wasn’t making Mila take her medicine or eat her meals.
She discovered that alternative options were limited — caregiving facilities provide varying levels of care, and a dementia diagnosis eliminates many lower-cost choices.
“I got very frustrated with the process,” says Tewari, who couldn’t afford memory care facilities that charged thousands of dollars per month to feed and bathe her mom — on top of the base price. “That’s when I realized I can’t depend on other people. I have to figure it out myself.
“I basically had no choice but to learn how to balance my work and taking care of her.”
Tewari is among the more than 40 million Americans who provide unpaid eldercare, according to the Bureau of Labor Statistics. That number is expected to increase, as older people will outnumber children by 2030, according to the Census Bureau’s Population Projections.
And like Tewari, most family caregivers cannot simply quit a job to tend to family members full time.
Although everyone’s caregiving situation is unique, we’ve gathered advice from experts about work benefits and caregiver rights as well as tips from real-life caregivers to help you achieve a work-life balance.
Employee Benefits That Work for Caregivers
In this tight labor market, more companies are expanding benefits to attract and retain employees. General Mills, for instance, added two weeks of paid leave for family caregivers to its benefits plan in 2018. So review your employer’s policies before you start the conversation.
One resource for caregivers is an employee assistance program, a company intervention program.
Benefits within these plans vary greatly, so it pays to investigate what your company offers, advises Chatrane Birbal, the Director of Congressional Affairs for Health Care and Employee Benefits at the Society for Human Resource Management.
“EAP benefits can include support groups… and programs for supporting an employee’s economic stability during a crisis,” Birbal says. “The plan can also include a wide array of other services, such as nurse advice telephone access, basic legal assistance… or assistance finding elder care services.”
Additionally, find out your employer’s policies on telecommuting, flextime and compressed work weeks, all of which help when scheduling around your caregiving duties.
If your employer doesn’t list specific family care benefits in your employee manual, you can use it as an opportunity to bring up these benefits with your employer.
Know Your Caregiver Rights as an Employee
Before you start a conversation with your employer about your caregiving duties, it’s best to first research what you’re legally entitled to.
If you’ve worked at least a year for a company with 50 or more employees, you can qualify for 12 weeks of unpaid leave annually through the Family Medical Leave Act.
Depending on your state, you may have additional rights to paid leave — eight states and Washington, D.C., have passed legislation that provides for paid family leave.
During your approved leave, employers by law must maintain group health benefits and cannot fill your position.
If you don’t live in one of those states, FMLA provides some relief for caregivers, but once you run out of the allotted time, you’re at the mercy of an employer, notes lawyer Amanda Singleton of St. Petersburg, Florida.
In 2010, Singleton was working at a law firm when her mom was diagnosed with brain cancer and suddenly required 24-hour care.
Singleton tried to use her time off intermittently that year to care for her mom. But two months before her mom died, the firm’s human resources department informed her that she had used all of her FMLA time.
Singleton was told she could either resign or be fired if she missed any more work. Knowing her mom didn’t have long to live, she chose the latter.
“It was a really big kick in the teeth while I was down,” says Singleton. “I was losing my mom, and I was going to lose my profession.”
Singleton went on to start her own law firm, Singleton Legal, with a specialty in advocating for caregiver rights.
One Woman’s Story of Balancing Work and Caregiving
Tewari says a few factors have allowed her to keep her job while taking on caregiving duties.
The first is location. Tewari can walk to work, which allows her to check on her mom at lunch or rush home if there’s an emergency.
Tewari also chose an apartment complex that has security personnel on duty.
“Fortunately, they’re very understanding of my situation, so if my mom does not answer the phone right away, I’ll send security to make sure she hasn’t fallen,” Tewari says. “I’ve had to do that in one or two instances.
“Unfortunately, I have to pay a little more rent, but I have that peace of mind rather than living in a house.”
Second, Tewari hired a caregiver to bathe her mom and help prepare food. The caregiver charges $14 per hour and comes over twice a week for a total of 10 hours.
“That’s all I could afford at this time,” Tewari says.
And finally, when she can’t find help elsewhere, Tewari relies on technology.
“I have a camera installed,” she says. “I check on my mom via the camera, and I call her to make sure everything is OK.”
Tewari also feels lucky to have understanding coworkers and managers. “There’s quite a few of them who are taking care of their own parents,” she notes.
Talk to Your Employer About Caregiving Duties
Although the timing isn’t always up to you, the earlier you can speak to your employer, the better you’ll be able to negotiate accommodations for your caregiving duties, advises Jana Panarites, author and host of the Agewyz podcast on caregiving and healthy aging.
“Talk about your caregiving duties before you reach a crisis situation,” says Panarites, who became a caregiver in 2009 when her mother was diagnosed with Alzheimer’s. “The last thing you want to do is have to make decisions under duress — you’re already going to be stressed out.”
In retrospect, Singleton wishes that she had negotiated with her employer immediately after her mom’s diagnosis.
“Caregivers frequently take a year to start asking for help,” Singleton says. “Ask for help early and often — whether it’s your family members, your friends, your neighbors or your employers — they can’t understand unless they’ve been there themselves or you tell them.”
And if you’re just starting your career, caregiving duties do not have to be a deterrent to getting a job, so long as you discuss your needs early on, advises Birbal.
“You don’t want to seem as though you’re only interested in a position because of their benefit offerings,” Birbal says. “Around the third and fourth interviews is when I would raise the issue, but at that point I would be very transparent so the employer is not surprised.”
How to Start the Conversation
Being open and honest from the beginning is key, since end-of-life family caregiving may not be as obvious to an employer as beginning-of-life caregiving, according to Jisella Dolan, global advocacy officer for Home Instead.
“When someone goes out on maternity leave, it’s pretty obvious they’re having a child,” Dolan says. “But when you have a sick parent, that’s not always obvious.”
Presenting your position in terms of benefits that your employer already offers could help pave the way for getting additional support.
Talk about your caregiving duties before you reach a crisis situation. The last thing you want to do is have to make decisions under duress — you’re already going to be stressed out.
“We talk about flexibility and backup care and resources and support — it’s very helpful when you’re a parent, and it’s very helpful when you’re a family caregiver,” Dolan says. “I think a very simple question is: What resources do we have for parents in the workplace, and will those resources help support family caregivers as well?”
Tewari says being honest about her obligations from the beginning and demonstrating a commitment to her job has been key to maintaining good relationships at her workplace.
“Keep open communication with HR, your managers and your directors as to what your situation is,” Tewari says. “If I’m running 20 minutes late in the morning, if I’m having a challenge with my mom, I’ll just send them a message… it’s usually not an issue.
“You have to build the trust on both ends.”
Don’t Forget to Care for Yourself
It’s easy to get lost in your array of duties as caregiver and an employee, but you shouldn’t forget to care for yourself.
Tewari prioritizes her health by working out when she can.
“I have to find time to look after myself because if I get sick, then there’s no one to take care of my mom,” says Tewari, who has started taking a second blood pressure medication since her mom moved in. “I used to exercise a lot — now that’s been cut drastically.
“But if rather than getting 45 minutes in, I’ve learned that even if I get 20 minutes, that’s acceptable.”
And although she knows her mom’s condition is bound to deteriorate, Tewari tries to focus on what she can do in the present — whether it’s accumulating PTO or accepting help from friends — and take the rest day by day.
“To be honest with you, I get very stressed having to think what it’s going to be like in the future,” Tewari says. “It doesn’t help me, it’ll just bring me down, so that’s the reason I just try to stay mentally strong every day and take it as it comes.”
Resources for Family Caregivers
Balancing work and caregiving can be stressful enough without wasting time trying to hunt down resources. Here are some sites to help you find legal, medical, financial and emotional support:
Department of Health & Human Services: Eldercare Locator: Signed into law in January 2018, the RAISE Family Caregivers Act directs the Department of Health and Human Services to develop a national strategy to support caregivers. Among its resources is this site that searches for elder care options by zip code or service.
AARP: The national organization provides resources for caregivers on its site, as well as this free webinar for working caregivers.
Family Caregiver Alliance: This nonprofit provides connections organized by ailment through the site’s Family Caregiver Navigator. Also offers search options for support programs and legal resources.
National Association of Areas Agency on Aging: Search by zip code for local Area Agencies on Aging, which can help determine the availability of programs that pay family members to provide care.
Daughters in the Workplace: This resource from Home Instead includes articles and advice for addressing caregiving responsibilities specifically for women in the workplace.
Alzheimer’s Association Community Resource Finder: Search for Alzheimer-specific community programs by zip code. The association’s 24/7 helpline also provides crisis assistance and education to Alzheimer’s and dementia caregivers: 800-272-3900
CancerCare: This national organization’s site provides free support services, educational workshops and financial assistance for patients with cancer and their caregivers.
National Association of County Veterans Service Officers: The association’s site searches by area for services for both veterans and their caregivers.
Hilarity for Charity: Founded by Seth Rogen and Lauren Miller Rogen in 2012, this organization awards grants for in-home respite care to those providing care to their loved ones living with Alzheimer’s disease or other dementias in the United States and Canada.
Tiffany Wendeln Connors is a staff writer/editor at The Penny Hoarder. Read her bio and other work here, then catch her on Twitter @TiffanyWendeln.