Must-Read Tips for Navigating Home Care

A recent conversation from provides suggestions on how to make this tough process easier for families.

By Linda Hildebrand 

Families play a critical role in the financial lives of retirees in their later years.

Whether by crisis or by plan, most have to navigate costly home care for themselves, parents, spouses or siblings, according to panelists in Daughterhood’s recent sixth in a series of conversations. Daughterhood, a social platform for the home-care profession, hosts community circles for 28 states

It’s not an easy topic — for anyone.

“When I think about planning for my own long-term care needs, I freeze up and my stomach hurts,” said Andrea Cohen, founder and CEO of HouseWorks, a home-care company based near Boston that began as a home-repair service for the elderly.

Cohen said she looks at “three boxes” for when it’s no longer safe to live alone: Pay privately for support services in-home, pay privately for other housing, or go into a skilled-nursing facility for either long- or short-term care.

Those who want one-on-one care should plan financially for that, she said.

“This is where you’re pulling at your family team to see who is going to support what, if your parents don’t have enough money … and that may determine where they’ll be staying,” Cohen said.

“It’s not like you’re going to have a road map, but this is where a good elder attorney or financial advisor can help,” she said.

Making the plan

“I live in a house with four levels, and I keep telling my husband we need to think about this,” Cohen said. At some point, for some reason, managing stairs and maintaining more square footage than they need may be hard for one or both of them.

The first step is to gather information and have a plan in place before you need it — for yourself and for family members, said Christine Lee, the San Diego Daughterhood Circle leader who’s founding managing director of Casa Companion Homecare Solutions in California.

Consider signing a service agreement with a facility, Lee said, even if your parent, spouse or sibling is resistant, to ensure a spot to pitch to them as an interim month-to-month basis whenever they do warm to the idea.

Just facing that the time has come for a lifestyle change may be the biggest hurdle.

“Sometimes, it matters who delivers the message,” Lee said. “For example, some clients don’t listen to anyone in their family but are really good patients who’ll take advice if it comes from a doctor.

“Sometimes if it comes from one son or daughter, they won’t listen to it, but when it comes from another son or daughter, it feels like, ‘Yeah, that makes sense,’” she said.

Sometimes, a family has to drop the subject for a time and watch for more receptive moments, perhaps for years. “It’s a process,” Lee said.

“Start in baby steps. You might want eight hours a day (for home care), but sometimes it is just not going to happen. Maybe you can talk them into three hours a day at first.

“Maybe you tell them they’re not getting a ‘caregiver’ but rather a ‘personal driver’ or a ‘personal chef,’” so they feel like they’re receiving luxury and not losing independence, Lee said.

“We call it therapeutic lying, but it’s just being creative so your family member feels in control,” she said.

Paying for the plan

Medicare, Medicaid and private health care insurance pay little toward in-home services, and may stop paying for home health care when clients reach the “new normal” of their reduced abilities, said Anne Tumlinson, founder and CEO of Daughterhood and of ATI Advisory, a research consulting firm.

A good way to find services nearby that participate with federal programs is to spend some time online with the plan finder at Centers for Medicare and Medicaid Services, Tumlinson said.

Long-term care insurance plans that clients may have purchased are not all alike, a fact that animated the session’s audience.

“Our long-term healthcare insurance allows family members to be compensated as care providers, but my friend’s policy does not,” one participant wrote in the side chat. “Read the small print!”

Also, she said, “If you have long-term care insurance, see if there’s an assignment of benefits options so the family isn’t out of pocket during the time between when the caregiver is paid and when insurance reimburses. Our turnaround is about two months. With assignment of benefits, the agency is out-of-pocket (for those two months), not my mom.”

One attendee who’s navigating home care for her parents said their long-term care disability insurance pays benefits for only four years, total.

“Mom doesn’t want to start it ‘too soon,’” she said, which clouds a sound decision about their safety at home.

Margie McNally, an interior designer and certified aging-in-place specialist (CAPS) said prevention is the key to making the home safe and healthy. Some local and state governments offer in-home elder services for free or at a reduced cost. That can work for starters, while families talk through what they might be able to afford for more intensive or better-quality care from a private agency, she said.

And what if a parent shouldn’t live alone but doesn’t want to relocate far away with family? Families might find solutions at Silvernest, a website that helps seniors find compatible housemates, another attendee suggested in the sidebar chat.

Living with the plan

“People are always surprised when they get to that point and wonder, ‘How is my mother going to get bathed every day? … That’s not covered by Medicare/Medicaid,’” Tumlinson said.

That’s when sibling dynamics and resentments often play out. “Who’s taking responsibility?” Lee said they ask each other.

Self-employing a caregiver leaves the family responsible for the array of payroll taxes. Chancing a cash arrangement can make the home vulnerable to liens if the employee is injured in the home.

That’s a reason to use a professional service instead of hiring privately, Lee said. Reputable agencies pay all taxes and benefits, cover workers’ comp, perform background checks and bond staff against theft.

Parents’ biggest fear is caregivers stealing from them, Lee said.

“One of the things we did was to add cameras throughout much of her apartment,” said Stephen Farber of HealthHive, participating from the audience. “Many people would find it intrusive, but my mother-in-law found it extremely comforting for her security as well as a check on her home aides. That is an incredibly personal decision.”

Today’s tight labor market is another challenge to private hiring, Tumlinson said. Agencies are having a tough time, too, to find the right incentives to keep quality staff.

“Sometimes we send bios of the caregivers being sent (to clients’ homes) to assuage fears,” Cohen said.

Other ways she breaks the ice before Day 1 on the job is talking to the family about who’s the case manager and how to introduce the caregiver.

“If the match isn’t good, you have to be really fast,” she said. “You don’t want to erode the trust. I put myself in their place and say, ‘How would I feel if someone did that to me?’ There’s an art to delivery of care.”

Lee suggested financial advisors and lawyers working with older clients keep a pro/con list for agency home care vs. personal arrangement. Cohen said she’s preparing a checklist of vetting questions and ice breakers for Daughterhood to share.

Paying family caregivers

Paying family is a popular option in states that haven’t opted out of Medicare/Medicaid funds to compensate family members for in-home supportive service.

“If any family member is going to be paid, get a contract in place, using an attorney that specializes in that kind of thing,” Cohen advised.

Making it official can avert misunderstandings and hard feelings that hidden expectations can cause.

“So many emotions involved … guilt, love, loyalty, burn out, sadness for the parent aging, etc.,” McNally remarked in the sidebar.

“Yes, and the changing dynamic of the relationship between adult child and parent,” another attendee agreed. “I want to care for Mom and preserve the good relationship we worked to attain. Untraveled roads ahead.”

Linda Hildebrand is a longtime newspaper editor and consumer reporter.


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