As cost of care rises, families bear the burden

July 25, 2011

Months after Terri Corcoran married in 2000, her new husband began to show signs of fatigue and memory loss.

By 2004, Corcoran’s husband, a former laser scientist in his early 70s, had been diagnosed with a rare genetic brain disorder. This once-independent person could not speak and needed help eating and using the bathroom.

With his children unable to offer day-to-day help, Corcoran, 60, became her husband’s lifeline.

Last year, she spent $78,000 of their savings on his care. She also retired from her job.

“I have to care for him full-time,” she said from their Virginia home. “Now I feel like I’m the CEO of a corporation built to do nothing but that.”

While the circumstances of Corcoran’s marriage may not be common, her role as an elder caregiver is.

An AARP study published last week showed that, in 2009, one in four U.S. adults helped to care for an elderly family member or friend. That volunteer work, according to the study, was worth an estimated $450 billion.

“Being a caregiver is becoming a fact of life,” said Susan Reinhard, senior vice president for public policy at AARP. “It’s the new normal.”

But that new normal shouldn’t take people by surprise.

When Jerold S. Cohen’s 80-year-old mother was diagnosed with ovarian cancer in 2003, this New York City-based business consultant and former nurse was stunned that a hospital worker in Florida, where his mother lived at the time, told him to place his widowed mother into a nursing home.

“Of course I said no, we’re bringing her home,” he recalled.

At first, Cohen and his sister rented a nearby apartment for their mother. Then, as their mother’s health declined, they moved her in with Cohen’s Connecticut-based sister.

Because Cohen’s sister was retired, the financial burden was minimized. But Cohen said earlier planning could have helped.

“We want to bury our heads in the sand because we think our parents are going to live forever and be healthy,” he said. “But that’s just not the case. And we need to consider all our available options before we get smacked with reality.”

That’s sound advice, said Brenda Avadian, who cared for her late father and now writes books and provides insight about elder care via the Caregiver’s Voice website. But “trying to predict what it’s going to be like to care for an elderly parent is like trying to see into the 17th dimension,” she said.

One thing you can try to predict, however, is cost.

Christine Valentin is a social worker with the Alzheimer’s Foundation of America in New York and New Jersey. She said her first recommendation is often to have a relative provide in-home care for an older adult.

If that’s impossible, then she advocates for hired help.

Agency in-home care can cost between $15 and $30 per hour. Those rates are valid nationwide, she says, because strong competition in major cities keeps in-home care prices relatively low.

Adult day centers are another option, which can cost about $65 per day. Assisted living costs about $2,000 per month and nursing homes cost as much as $10,000 per month for those without coverage or Medicaid assistance – which can only kick in when an older person’s finances are depleted.

“I advocate for a nursing home when people have money and need to spend it or when they’re out of money and can qualify for Medicaid,” she said. “But it’s important to have someone you trust advise what do to financially.”

Nataly Rubinstein knows this.

Rubinstein’s mother was diagnosed with dementia in 1994. For 16 years, Rubenstein organized in-home care for her mother while also caring for her own children and managing Alzheimer’s cases at Mount Sinai Medical Center in New York.

Now Rubenstein has written “Alzheimer’s Disease and Other Dementias – The Caregiver’s Complete Survival Guide.”

A first step in that guide, she said, is contacting a long-term care insurance broker. Ideally, this should happen prior to diagnoses of dementia or other disabilities.

“Once the person is diagnosed, that person will be excluded from insurance,” she said.

Next step is to find a trusted doctor specializing in geriatrics and a certified elder law attorney to construct documents that fend against future family feuds.

“A lot of parents just figure, ‘I’ll just add all the kids to this document and they’ll figure it out,’” she said. “Well, let me tell you: Kids can’t figure it out. They were fighting when they were younger and they’ll fight when they get older.”

This situation sounds familiar to Stephen J. Spano, Boston-based president of the National Elder Law Foundation.

“With a well-defined plan, you can avoid a lot of the headaches people associate with the aging process,” he said. “It just takes some forethought and consultation with people who are certified to help you through it.”

2 comments

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[…] A July 25, 2011 Reuters article reported on the rising cost of elderly care and the burden it creates on families. “Being a caregiver is becoming a fact of life,” said Susan Reinhard, senior vice president for public policy at AARP. “It’s the new normal.” […]

Posted by Daily Alzheimer’s Coverage – July 26, 2011 | The LEAD Coalition | Report as abusive

As a personal friend, I would like to underline the wonderful quality of care Terri Corcoran’s husband receives from her, with the help of homecare aides she hires…

I would also like to inform people of the organization to which Terri and I both belong, the Well Spouse™ Association, http://wellspouse.org. It is a 501(c(3) group that offers peer emotional support to husbands, wives or partners of people with _any_ chronic illness and/or disability.

Besides learning the tips and tricks of caregiving for their partner, well spouses (spousal caregivers) need the emotional support in their dedication to caring for an ill spouse… the alternative is all too often burnout, or a breakdown in their physical and/or mental health. The WSA can provide that. Please tell anyone you know who is in this situation about it.

Posted by wellspouse | Report as abusive

[…] and all the financial planning we have in place has disappeared,” Comer recalls. “It’s a straight financial bleed. With dementia, you’re easily looking at $9,000 a […]

Posted by Reuters Money » See all analysis and opinion Long-term care insurance gets a makeover « InsuranceSCNow.com | Report as abusive

How sad that our legislators are unable to assist citizens and families with home care needs. Of course it’s expensive! Rather than requiring financing when a family is struggling to care for its needs, a small tax (oh no, the “t” word !!!) as we have for Social Security would be the answer. We have provided our legislative “leaders” with a very generous benefits package, while denying ourselves the same.

Posted by bikemama | Report as abusive