By E.J. Mundell
MONDAY, Oct. 27 (HealthDay News) -- In her long struggle to care for her gravely ill husband, journalist and Passages author Gail Sheehy recalls one defining moment.
More than a year ago, her husband, publisher Clay Felker, was being discharged from a New York City rehabilitation facility after spending several months there in his long battle with throat cancer. As always, Sheehy was at his side.
"So, he has to come home now, and we've run out of benefits," Sheehy recalled at a recent media briefing in New York City. "We're coming out, and there's also nobody telling me what I have to do. He has a feeding tube, he has a tracheotomy, he has medications. I don't know where to start."
Desperate, she sought out and hired a "geriatric care manager" -- at $125 an hour -- to advise them. Their insurance might still pay for an at-home nurse, she found out, but only if it's a Medicare-approved nurse -- and there aren't any available in the city.
There are home health-care aides, of course, "but they cannot do medical services like giving a shot, taking care of a trach, changing a feeding tube," Sheehy said.
And then there's the quandary of how to pay for a nurse, should one be available. Once private insurance benefits end, the only option for most Americans is Medicaid, which requires that recipients have less than $5,000 in assets.
Her geriatric care manager spelled it out to Sheehy: If the couple first exhausts all their remaining assets, then Medicaid will cover Felker's nursing care.
And if Sheehy, in her late 60s, wasn't willing to give up all her assets and income?
"Then, you need to divorce him," the geriatric care manager told her.
In Sheehy's case, it never came to that. She and Felker scraped together enough money to hire qualified, in-home caregivers via the network of health care helpers known as the "gray market," and Felker's last months were spent at home, relatively serene. He died in July at age 82.
Sheehy called her 15-year journey with Felker through the U.S. health care system a "nightmare," and she wonders how less affluent and well-connected Americans are faring.
"I'm a journalist, I have a lot of contacts, I've worked all my life and done reasonably well. My husband was successful," she said. "But we had a hell of a time trying to maintain some quality of life."
The phenomenon of middle-class, middle-aged Americans stretched to their emotional and financial limits caring for sick spouses or parents is one that's already widespread and likely to get worse, experts say.
- U.S. Census figures project that the number of Americans 65 or over will double by 2030, and that two-thirds of today's 65-year-olds will require some period of long-term care later in their lives.
- At the same time, according to one recent study, the number of geriatricians has actually declined in recent years, to about 7,750: that translates to one for every 4,254 older Americans. In addition, it's projected that the country will face a shortage of more than 800,000 nurses by 2020.
- According to U.S. government surveys, in 2004, there were 2.5 million Americans living in either nursing homes or assisted living facilities. The average cost of a private room in a nursing home, according to a recent MetLife study: $75,000 per year.
- The AARP notes that two-thirds of older Americans who needed long-term care now rely completely on unpaid help -- in most cases, family.
The trouble is, "caregivers just feel utterly unprepared for their role," said Carol Raphael, president of the Visiting Nurse Service of New York, who joined Sheehy and other experts at the briefing on eldercare. Many of the family caregivers VNS staffers encounter feel left out of crucial decisions concerning their loved one's care, Raphael said. "They are often on the border -- they aren't even included in thinking about how care will be provided."
Another big challenge -- caregivers are often confronted with an array of doctors, procedures, paperwork and facilities, with no one to help pull it all together. "In the current system, there's no one accountable," Raphael said. "That's why it can cost you $125 an hour [for a geriatric care manager], because you're trying to fill that hole."