Home-based health care sounds convenient: nurses, therapists and social workers visit the individual — typically an older adult — at his or her home, instead of at each health specialist’s office. But choreographing a daily parade of medical professionals is anything but convenient for the family caregiver who typically “quarterbacks” such services — especially when that caregiver is working from that home.
One of the major goals of the Affordable Care Act (ACA) is to keep older Americans in their homes longer, on the assumption that it’s cheaper and more pleasant to “age in place” rather than in a nursing home or other facility. Home-based care can save families money — but it may come at the cost of added stress, time and attention for the family caregiver.
Health care professionals say that family caregivers need to know what they are getting into before committing to the apparent convenience of home-based care.
There’s no handbook for launching into the quarterback role. “Caregivers get their loved ones home all the time and don’t have enough information about what to do,” says Toula Wootan, who directs community programs at Eldersource, a community agency based in Jacksonville, Fla.
I don’t recommend quitting your job to care for someone. You pay a very high cost.
— Jo McCord, Family Caregiver Alliance
And the paperwork can be relentless. Every visit has to be documented for both the patient and the medical professional. That means that a competent adult has to sign in the visiting professional, know that the services were given as arranged, and complete exit paperwork.
Don’t expect that the paperwork for any agency or professional is shared or visible to any other agency or professional, either. The vision of seamless electronic documentation is still a vision. “It’s legal work, administrative work, medical work, making sure that the records are correct,” says Wootan.
Here are three strategies for managing two full-time jobs — your career and caregiving:
1. Scope out resources and advocates early.
Home-based care shifts responsibility from institutions to families. You’re on your own to piece together community and medical services, say experts, but you can get help.
First, figure out which resources are available. Most communities have councils on aging that can at least refer you to home-based care agencies and services, says Laura Green, director of the Traverse County Commission on Aging, in northern Michigan. You can also check Caregiver.org or Eldercare.gov. Available resources will depend on where the older person lives and on his or her income.
“Remember that the resources are not based on your income, but on the income of your loved one,” says Green.
That’s a revelation to working caregivers who often assume that their own income disqualifies their family from help for the loved one, says Green. Help for just a few hours a week with, say, light housekeeping, can ease the burden on the entire household at no cost to the working caregiver.
It helps to find a local social worker or other professional with whom you can build a rapport so you have a go-to person for random questions that will pop up. Get to know one who can handle quick phone calls during the work day.
2. Develop parallel strategies: one for your career and one for caregiving.
Your own job is job No. 1, says Jo McCord, a family consultant with the San Francisco-based Family Caregiver Alliance.
It’s daunting to face the prospect of ping-ponging between work and a demanding, unpaid second job coordinating care. Some people decide they’ll just quit their jobs. But that can permanently derail their own financial security, says McCord.
“I don’t recommend quitting your job to care for someone,” she says. “You pay a very high cost.”
Work with your supervisor and co-workers, McCord says, to anticipate how you will handle emergencies.
And, adds McCord, don’t count on working from home as a complete solution. You’ll still need health care attendants, and visiting professionals torpedo daily productivity. “You will be constantly interrupted,” she says. “And the work still has to get done.”
You might consider taking a short-term, unpaid leave under the Family and Medical Leave Act to: meet the professionals who will be visiting your home; get the initial round of paperwork completed; install accommodations to your house and establish a new routine with your loved one.
Don’t forget to arrange back-up care for days when you have meetings, business travel or demanding deadlines, too.
And check with your employer’s human resources department to see if you’re among the lucky few with access to elder care benefits. According to the Society of Human Resources Professionals, about 6 percent of employers offer referral services for elder care services; a scant 1 percent offer back-up and related care.
3. Build in back-up care and breaks for yourself.
“Don’t try to do this by yourself,” says Wootan. “If there’s anyone else who can support you, reach out. It will exhaust and deplete you.”
Build respite care into the caregiving budget so you get regular days off from assisting your loved one.
Also, look into adult day care. Usually programs provide transportation to participants, though McCord notes that an infirm older person might need a paid caregiver to get into the program’s vehicle. Some working caregivers carve out a daily schedule that starts by dropping off the client at a half-day program, she says. Then a paid caregiver meets her or him at home and provides lunch and personal care for an hour or two. That leaves only three or so hours before the end of the work day.
Finally, have family discussions as often as you can — and before the caregiving role really happens, says Wootan.
“Who can do what? What will each of your roles be?” she says. “Find out what your expectations are of each other and of your parents.”