Looking back, both Jim Hitt and Jack Colyer remember how long-time friends stopped visiting as Alzheimer's disease progressed in their wives.
Hitt's wife, Bernadine, now is in Presbyterian Manor's health care center and Rose Mary Colyer is at Valleyview Care Home, both with advanced stages of the disease.
Alzheimer's is a progressive and irreversible disorder that leads to structural changes in the brain. The cause is not known, and there is no cure.
"It's interesting how friends will shun you," said Hitt. "They're scared."
"It's too painful," said Colyer.
Hitt recalled that he and his wife always had been happiest just being alone together. As her care needs increased, he was so busy taking care of them, he didn't realize people had stopped coming by.
After they moved to Presbyterian Manor in 1987, it hit him, and "as soon as I got Bernadine placed (in the health care center), I started going to support group."
COLYER SAID a few loyal friends stayed with them through the ordeal, noting "I'll be eternally grateful." But most fell away.
Someone just dropping by to say "hi," he said, always meant a lot.
Margaret Hopkins and Jan Faust, leaders of Alzheimer's caregivers support groups at Douglas County Senior Center and Valleyview, respectively, said the loss of friends is a common lament they hear from caregivers.
Estimating there are about 750 Alzheimer's patients in Douglas County, Hopkins noted, "I don't have a week go by that I don't have a new contact."
Hitt and Colyer said their involvement in the Senior Center and Valleyview groups helped them understand the disease and their responses to it, and sustained them emotionally.
A 31-year member of AA support groups as well, Colyer said he knows the value of such friendships.
HITT NOW serves as co-facilitator with Hopkins of the Senior Center groups, and Colyer continues to participate in the Valleyview group, designed for people with family members already in a nursing home.
"They're dealing with massive guilt," said Valleyview's Faust of her members. Relatives know rationally that their decision to place a loved one in a care home is right, but it still hurts emotionally, she explained.
Support groups can help resolve that turmoil, and provide opportunities for learning how to handle such issues as those of proper care that always concern family members.
The Valleyview group meets at 7 p.m., the first and third Mondays of every month, except on legal holidays.
Hopkins explained that the groups at the senior center "take people up to and through that decision to place. Sixty percent of my folks still have their folks at home."
The two groups meet the second and fourth Tuesdays from 7 p.m. to 8:30 p.m. and the first and third Fridays from 2 p.m. to 3 p.m. in the conference room, at 745 Vt. The effort is supported by Douglas County Senior Services.
Hopkins also said a caregiver-to-caregiver program is starting, and will match veteran caregivers with those just beginning the work.
Primarily, she said, the support group's aim is to offer emotional support. "Feelings are OK, no matter what they are, which is news to some people, especially older ones."
Nine caregivers attended one recent Friday afternoon meeting at the senior center. They were wives, husbands, daughters and sons of Alzheimer's patients, all talking about their relative's conditions and seeking coping strategies from Hopkins and Hitt, and each other.
"It's good for them," Hitt said. "After a while they'll come back and begin to smile.
"MEANWHILE, there are more and more coming."
The function of the support groups, Hitt said, is to find people who need support as early as possible, to show them what will happen and help explain that nursing home placements are inevitable but difficult.
Not until people see they can employ someone to take better care of their loved ones than they, will they accept it, he said.
Hitt said the senior center groups function on two levels: One is the "share and listen" level; the other, for some members, is an activist level.
"They want to do something," he said, and their immediate aim is gathering support for a special Alzheimer's care unit at Valleyview, which already is working toward that goal.
Such units have specially trained staff, Hitt said, to give tender loving care, and enough of them to give one-on-one attantion if needed.
Alzheimer's units also are painted certain pastel colors for a calming effect, and walking areas are enclosed because so many Alzheimer's patients tend to roam.
"IN A nursing home where you're short on staff," Hitt said, "they strap 'em into a chair and let them sit."
Some members of the Lawrence support groups have placed their relatives in special units already established in nursing homes in Topeka and Kansas City, he noted.
"Why doesn't Lawrence have an Alzheimer's unit, and if they're going to build one (at Valleyview), why don't we all get in there and help?" he asked.
It's too late, Hitt said, to help his wife, but others will be needing such a facility.
"We see so many Alzheimer's patients coming out of the woodwork as time goes on," he said. "We would like to see Douglas County have adequate arrangements for them."