This is the second part of the article that
appeared on the first page of the September 29 edition of the Philadelphia
Inquirer.
A decade ago, while Bayne was selling long-term care insurance, he bought a
policy for himself. Because he was 40, the premium was just $1,000 a year. For a
senior citizen, a policy could cost at least three times as much.
His
policy covered long-term care up to $231 a day for life, whether he was at home
or in an institution.
Two years ago, with Parkinson's beginning to ravage
his body, he decided he needed help – not with bathing, eating and
dressing (activities covered by the policy) but with transportation, cooking and
shopping (not covered). As a result, he has been paying about $30,000 annually
from his pocket for help.
This month, his condition steadily
deteriorating, his insurer informed him that the policy would kick in. The aides
who perform services that are covered also will be allowed to do the chores that
are not.
"I haven't been out of bed for 15 weeks," Bayne said
the other day. "I only get up for visitors."
Though he speaks
of relentless pain, there are times when he can move about his apartment, slowly
and with a cane, as well as type and pour coffee. But in an instant the palsy
returns. The lines deepen in his face. His voice weakens.
He sees his
glasses on a bookshelf behind his desk. Swollen by medication (he takes 20 pills
a day), he turns his chair slowly and stares at those glasses. The hand moves
toward them. The fingers shake. His mind is screaming – "Pick up the
damn glasses!" – yet his body isn't listening.
He breathes
deep. He meditates.
The fingers become still and he grabs the
glasses.
Bayne craves company. Although he is the eldest of eight
children, none of his siblings lives nearby. His mother, whom he calls every
day, is a two-hour drive away. Long ago divorced, he has no children.
The
person he sees most is his assistant, Bobbie Bowden, hired to help with his Web
site, drive him to appointments, even dress him some days. "She basically
runs my life," he said.
Raised Catholic, Bayne spent four years in
his early 20s in a monastery on Mount Shasta in California and became a Buddhist
priest. That period of soul-searching serves him well now, as silence and
immobility overtake him.
Afterward, he went to the Massachusetts
Institute of Technology for a master's degree in interdisciplinary
science.
One day, while out for a jog, he was hit by a car. He suffered
severe head trauma - an injury that he now believes triggered the early onset of
Parkinson's. During his convalescence, someone asked him whether he would like
to sell insurance. It sounded like a good idea.
The more insurance he
sold, and the more he saw of the travails of the elderly, the more he realized
how many aspects of long-term care needed to be changed. Even as he peddled its
products, he was ranting against the industry.
He called on insurers to
hire a national spokesman - Clint Eastwood, maybe - and raise public awareness.
He wanted them to create more flexible products, so people with cash value in
their life insurance policies, for instance, could use that value to pay for
home health aides or visiting nurses. And he wanted the industry to market more
to baby boomers.
He pointed out the limitations of Medicare, which
largely covers acute care - heart operations, for instance, and hospital stays.
But for millions of Americans with chronic illnesses, there is no system to help
pay staggering bills or provide care in an appropriate setting.
At the
same time, he is quite certain that the "cradle-to-grave" care system
he advocates will not soon materialize. No politician, he says, would risk
proposing it, especially in the absence of public demand, not to mention the
willingness to pay for it.
"We live in a country of takers," he
complained, "not givers."
Every week, when Mr. Long-Term Care
contemplates giving in to his body, or his frustration, he reads Nelson
Mandela's 1994 inaugural speech. One line, in particular, inspires
him:
"Your playing small doesn't serve the world."
With
so many hours to think, Mr. Long-Term Care dreams of new things to do.
He
wants to create an Institute for Mindful Aging, to tune baby boomers in to the
issues of aging. He believes his generation will create new living situations
for life's last stages, radically different from the nursing homes and
assisted-living facilities on the landscape today. He and 13 friends want to
build a communelike "lifetime transition community" in Saratoga
County, N.Y., and care for one another.
But first things first: changing
the nation's bad attitude.
Late last week, he submitted a formal request
to the Senate Special Committee on Aging to urge all Americans to volunteer in
nursing homes or elder-care centers one day in December. His letter
reads:
"This will be a first opportunity for many Americans to see,
without fear or reservation, beyond frailty, tremors and dementia, into the
vital life force of nature in transition."
Mr. Long-Term Care
promises to be there.