Jeanie Hime stood outside Christ Community Church exchanging the hugs, tears and awkward conversation that always come after a funeral.
She clutched the American flag that an hour earlier had draped her husband Larry's casket, one tangible part of the day she was not going to lose.
She was taking the final steps in a journey that began more than 5 years ago the journey of helping a loved one through the last stages of life. It's a journey being taken by tens of millions of Americans as aging baby boomers face their own mortality or that of ailing parents.
Christ Community Church had been filled that August day with friends and members of the family who had come to say goodbye. Many of them had shared parts of the journey.
Pastor Doug McIntyre knew about the challenges the Himes faced as Larry died.
"Gone are the motorized wheelchair and the hospital bed," McIntyre eulogized. "Thank God and his glory for calling him home, for drying his tears and removing the pain."
It had been part of Larry's life since 1983 when he injured his back working construction. By 1991, he was having his seventh back surgery. Always involved in physical work, Larry shrugged it off as part of life's hand he'd been dealt.
But late in 1996, his legs weakened. Six months later he could only summon enough energy to mow half the lawn. After years of doctors and tests, Larry was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's Disease.
There is no cure.
The questions the Himes faced throughout the long journey are the same ones faced by others in the same situation: How can the critically ill make the most of their time? How can we gracefully prepare for death? And how, as a nation, can we start to rethink the way we live with dying?
Over the past five years, studies have found that the medical profession's "single-minded focus on finding a cure" too often squeezes out the need for pain management and comfort for the critically ill. They also point out poor psychological, social and spiritual support.
In Larry Hime's case, it took years for physicians simply to diagnose his illness.
"We began seeing doctors about Larry's illness in December of '96 and we finally were able to put a name on it in February of 1999," Jeanie Hime said. "It wasn't like television where doctors don't quit until the problems are solved in an hour."
As the journey dragged on, a lot changed.
"In 1997 we had a split-level home and he'd drag himself up the stairs," Jeanie recalled.
Larry's health continued to decline. Soon, he was in a wheelchair and the couple was looking for a single-level home.
By 1998 Larry was working out at the Lawrence Athletic Club in his wheelchair. A speaker at his funeral, a fellow athletic club member, said Larry was offering encouragement from his wheelchair instead of the other way around.
Weaker and weaker
Doctors were unable to diagnose his illness, but his condition was getting worse.
"The Lord put this house on the market," Jeanie said sitting in the living room of her one-level west Lawrence house. A Bible with a tattered cover lay next to her on an end table.
"It's hard to look at a house two ways," she said. "You're looking for one that will fill your immediate health needs and one where I might be staying the rest of my life."
The Himes bought a used minivan to make it easier for Larry to haul his wheelchair. By mid-1998 he couldn't get the chair in and out of the van by himself.
They traded the minivan for a used lift-van. Within a few months Larry was too weak to drive.
"Being handicapped is very expensive," Jeanie said.
And still there was no diagnosis.
Finally, a doctor at the Mayo Clinic in Rochester, Minn., said one possibility could be ALS.
The disease attacks nerve cells in the brain and spinal cord. It's progressive and fatal. Life expectancy is from two to five years, but it's usually got a head start before it's discovered.
The doctor told her ALS was not his diagnosis but she might want to read the material anyway.
"I remember being in a huge waiting room full of sad people," she said.
The diagnosis was finally made in February 1999, after testing at the Muscular Dystrophy Association/ALS Clinic at Kansas University Medical Center in Kansas City, Kan. Dr. Arthur Dick delivered the bad news.
"He had tears in his eyes when he told us," Jeanie said.
The nation learns
The medical profession is only now recognizing serious deficiencies in the care of the dying first identified in a 1995 report known as the SUPPORT study. Half of the study's 9,000 subjects had poorly controlled pain. More important, many of their doctors were not aware their patients had asked not to be resuscitated or simply disregarded those wishes.
In the six years since the study was released, the U.S. health-care system has begun to respond. Hospice care, mainly for dying patients at homes, has become more familiar. A 1999 survey by the American Hospital Assn. found 20 percent of hospitals now have some type of palliative care services.
Influential medical groups such as the American Board of Internal Medicine, the American College of Surgeons and the American Cancer Society are redefining their roles in end-of-life care. Insurers throughout the country including Blue Cross Blue Shield, Kaiser-Permanente and the National V.A. Healthcare system are looking at expanding coverage of end-of-life care.
Many Americans got a first glimpse of the new possibilities last year, when PBS broke a major cultural taboo with its four-part series, "On Our Own Terms Moyer on Dying." The series, which examined alternative ways to approach death, pulled in 60 percent more viewers than any show ever aired on the public network.
The momentum from that series flowed nationwide, resulting in spirited grass-roots efforts to get out the end-of-life message. In Kansas alone, 21 coalitions are leading their communities in identifying and addressing issues such as pain management and planning for end-of-life care. The goal: to give everyone the chance to die the way they want to, where they want to.
After all the years of looking for a cure, that's what Larry Hime did.
After he suffered a heart attack in September 2000, Jeanie took leave from her job in admissions at Lawrence Memorial Hospital to make caring for her husband her 24-hour job.
Jon Barr, their Lawrence primary care doctor, referred the Himes to Hospice Care in Douglas County.
Adapting to a lifestyle of giving and receiving care was difficult.
"Larry and I used to cook together and work in the shop together and now I get to do it all," Jeanie said one day in March. "The other day I fixed the toilet all by myself, I was so proud."
Widowed after her first marriage, Jeanie remarried in April 1980.
"He feels so bad with me doing everything," she said haltingly. Tears filled her eyes as she looked down at her lap, "... and I consider it a privilege ... he did everything for me when he could."
She talked about how difficult it was to ask for help. She was reminded of her caregiving workload and the fact that if Larry was in the hospital he'd have three nurses caring for him. She talked of how turning Larry was like handling a 200 pound baby. With friends, church members and co-workers coming to visit, it had become a busy household.
The daily routine
Larry's voice could be heard coming from the master bedroom, saying something about not hitting a red button.
"I think that's from his construction days," Jeanie said. "He drifts in and out of reality."
End-of-life planning was mentioned.
"You'd think after four stints and four angioplasties in one year we'd have made a living will long before all of this," she said.
A living will is a document stating a patient's wishes about future medical treatment and life sustaining measures he does or does not want.
"Larry's is taped to the headboard of his bed in case someone panics and calls 911 instead of hospice," Jeanie said. "I still don't have one."
For Jeanie, having time to get out of the house depended on help from volunteers or family members coming by to sit with Larry.
"I feel embarrassed to say that I bought my funeral outfit in January," she said. "I was in Weaver's to buy something else and I thought I'd just make the best of my time."
She spoke about the time they had to write Larry's obituary, arrange the funeral services and the list he'd made of carpenters, plumbers, electricians and a lawyer.
"I don't know how many times we've said our goodbyes," Jeanie said.
Later, over a cup of coffee, Jeanie talked about how Christianity had always been a big part of Larry's life.
"He knows where he's going and he's OK with dying, but it's getting there that's been hard."
Larry Himes, 65, died Aug. 4, 2001.