The Working Caregiver Dilemma

by Christina Medvescek on Wed, 2006-11-01 15:36

Caring for a loved one with ALS and simultaneously keeping up on the job can make you feel as if you’re being ripped apart.

There are obvious benefits to working while caregiving, like income and health insurance, and less obvious benefits, like social contact and getting a small mental break from caregiving responsibilities. Employers benefit from retaining skilled and trained workers.

But there are obvious downsides. Working takes a physical and emotional toll on caregivers. And a recent study by the National Alliance for Caregiving found that working caregivers cost employers about $34 billion a year, due to absenteeism, lost productivity and having to replace workers.

As working caregivers become more numerous, businesses are becoming more adaptable. Here are some strategies that both employers and caregiver-employees have found useful:

Little steps

Although she can’t prove it, Darcy Alber of Florissant, Mo., believes she was fired from her job of seven years due to the amount of time she took off to care for her husband Kenny, who received an ALS diagnosis in 2003.  Luckily, Alber was soon hired by the company that provides Kenny’s durable medical equipment.

“Obviously they knew my situation when they hired me,” said Alber, who also has two small children.
“They’ve been so kind and patient. They allow me to work a minimum of 32 hours per week to keep me full-time, so I can keep my benefits. I can work up to 40 hours per week if my personal life allows for that, which is what we need financially, but it doesn’t happen very often.”

Educating employers about ALS and the kind of care required can make them more open to flexing your hours, Alber said.

Some other strategies for building understanding and support include:

  • Make a clear distinction between work and caregiving. Save personal phone calls until a break or lunch, unless it’s an emergency. This goes a long way toward creating goodwill among employers and coworkers.
  • When requesting accommodations, look for those with the least impact on productivity and other staff.
  • Show appreciation toward co-workers who may be picking up the slack.  Bring in bagels, have a backyard barbeque or simply write thank-you notes.
  • Find a work buddy — someone else in a caregiving situation — and share support and tips.


Flexibility is one of the best gifts an employer can give a working caregiver, said Donna Wagner, director of the Center for Productive Aging at Towson University, Md., and an expert on employed caregivers. Studies suggest that flextime improves job satisfaction and performance, and decreases lateness and turnover.

How do companies become flexible? “In almost all cases, if someone in the executive ranks has had personal experience caring for a loved one … the atmosphere is friendlier,” said Wagner.

This was true for Robey Taylor of Wildwood, Mo., when he was caring for his wife, Anita, who had ALS. (Anita died in August.) The president of Taylor’s company had lost a son in a car accident. “She understood family problems,” said Taylor. “She said do whatever you need to do.”

Technology also makes flexibility easier. When Anita’s needs caused Taylor to rearrange his work hours, he completed correspondence at home and e-mailed it to the office, where it was typed and ready to be signed when he arrived.

“E-mail networking and cell phones helped a great deal,” said Taylor.  “Guys could call me at home [to ask questions] and half the time they didn’t even realize I wasn’t in the office.”

Use what’s available

Smaller businesses may be more flexible because of their size, while larger businesses may offer two formal resources: Employee Assistance Programs (EAPs) and Family and Medical Leave Act (FMLA) leave.

EAPs are meant for those coping with a crisis like ALS. EAP counselors can identify options, provide information on community resources and long-term planning, and even help you talk to your boss about your accommodation needs.

Anita Taylor’s company offered free financial counseling with a specialist experienced in bereavement. “He asked about wills, living wills, life insurance,” said Taylor. “That was a big help. I’m sure other companies do it, but people don’t know about it.”

FMLA leave is available to employees at companies with at least 50 workers. You must have worked 1,250 hours in the past year. FMLA provides up to 12 weeks of unpaid leave and guarantees the continuation of benefits and comparable employment. Although FMLA leave must be scheduled in advance and documentation may be required, it can be used very flexibly, from big chunks to hourly increments (“intermittent leave”). 

California now offers up to six weeks’ partial pay for caregiving leave. Eight other states are considering some form of paid leave for caregivers: Illinois, Washington, Hawaii, Minnesota, Massachusetts, New Jersey, New York and Pennsylvania.

The key to mending the work-caregiving split is to identify and ask for the help you need. There may be limits to what an employer can do, said Wagner, but “feeling supported at work goes a long way to empowering people and making the day a little easier.”

Christina Medvescek
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