One woman called 911 and demanded that someone come make her coffee when her family didn’t show up fast enough.
Others call their adult children 40 or 50 times a day, asking for everything from a back rub to help changing a light bulb.
In nursing homes, they hit the call button every five minutes.
Call them difficult, crotchety or just plain cranky — they are the highly vocal minority of elderly people formally described as “high maintenance.”
In the past, they rode the porch rocker and yelled at passing kids, or tormented long-suffering daughters-in-law in the privacy of the family home.
Today, social-service workers say, difficult older people are growing in number, living longer and increasingly separated from their families.
The result: They now rely on public caregivers, who seem no more capable of pleasing them than were their daughters-in-law.
“We have a bigger population of older people, including older people with long-term disabilities, those who have had mood-altering strokes and serious personality disorders that intensify as they grow older,” said Pam Willson, a Phoenix area neuropsychologist.
She and her husband, geropsychologist Gary Martin, say most of their elderly patients are well-adjusted and easy to work with. A quarter or a third of them, however, are “difficult.”
Willson and Martin say they may account for less than 1 percent of elders. Other caregivers say there are more, though their “degree of difficulty” varies.
Gloria Davenport of Orange County, Calif., has even published a book on them. In “Working with Toxic Older Adults” (Springer, $41.95), Davenport estimates that 3 percent to 5 percent of those in their 80s or older may be “toxic” — not only to themselves but also to those who try to help.
These are not people who can be helped by medications, she said. Some may have always had character disorders, but they were fine when they lived on their own.
Now they need help, and no one can please them.
Learning to deal with overly demanding elders is uncharted territory for some in the social services profession, Davenport said. However, with the aging of 76 million Baby Boomers — already with a reputation for being demanding — the territory is likely to become well-traveled.
Steve Lacey of the Maricopa County (Arizona) Area Agency on Aging said extremely difficult elders may only make up 5 percent of the agency ombudsmen’s clientele — but could easily take up 20 percent of their time.
The most irascible of this group call firefighters, police or other community agencies every day, said Dawn Savattone of the county aging agency. They are well known in emergency rooms and on the “do not service” lists of home health care agencies.
“If all the social workers in the city got together and we started comparing names, I guarantee you that we would all know them,” Savattone said.
“They burn out every social service agency in town,” said Bob Peck, program manager for Adult Protective Services. Of the 300 calls APS gets each month, only about 10 fall into this category, Peck said.
Often, “high maintenance” elders see the friction as someone else’s fault. They commonly register four or five complaints at a time, and often threaten to sue.
“When you first call on them, you are a saint,” Savattone said. “But eventually you fall off the pedestal and become another of the enemy.”
Some difficult elders say all they want is to be left alone in their own home, Savattone said.
“But as soon as all the arrangements are made, they sabotage them. They may fire home health aides, cancel meal deliveries and not take their medications,” she said. “So they end up exactly where they were — surrounded by people trying to meet their needs. I think they self-sabotage things because being left alone is their worst nightmare.”
Most social service workers also caution that crankiness is not an automatic part of old age.
“People of any age who are forced by circumstances to become more dependent on others or on `the system,’ can feel frustrated or frightened,” Willson said. “If their coping ability was poor beforehand, you can see real problems.”
Davenport makes a clear distinction between “toxic elders” and older people who simply need a lot of care. She said people serving the former feel emotionally drained after being around them.
Davenport said her research found that many of the most difficult people had been teachers, preachers, psychologists, business owners, executives or others who had held positions of power and control.
When that erodes with age, she said, they may turn up the volume of their demands, “fearfully lashing out like children to maintain control.”
Of course, not all complaints are without merit, caregivers quickly note. There is much to complain about as social service budgets continue to shrink. Sometimes, all a person can do is fight for the services they need, and sometimes it works.
Sometimes, however, the demands become counterproductive, leading to abandonment or shuffling by the social-service community.
Catherine McCormick, 75, is developing a reputation that would make her difficult to place in a nursing home — which is fine with her.
” `Difficult and demanding’ — those are words I hear over and over again,” she said.
She believes she gets a bad rap. She says that paid caregivers sent to her have already been told that she is demanding, so that’s what they see.
McCormick and another senior, James Berryman, were good-natured enough to be interviewed for this article to defend older people they say are unfairly called “difficult and demanding.” According to Berryman, they are simply trying to better their lives and those of others.
By her own estimate, McCormick has had more than 300 caregivers in her 27 years as a disabled arthritic. She has been fighting Maricopa County Managed Care to stay in her home since 1994. Being difficult — if it is a strategy — is so far working to keep her on her own.
She vows to die in her own home, with hospice at her bedside when she is ready.
Still, McCormick said she really doesn’t understand all the fuss.
“I am very polite,” she said, “and I expect the people who are paid to take care of me to do their jobs.”
A former counselor for the blind, McCormick said the underlying problem is that there are no comprehensive care programs for disabled elderly.
“The people who should be my advocates are my adversaries,” she said. “When you are helpless, they move in on you like a pack of dogs.”
Medical advances and the availability of home services have made it possible for people like McCormick to live at home, despite severe problems like diabetes, emphysema or coronary disease, according to Willson.
“Before, they may not have survived some strokes. Now they survive but may not be the same person,” she said.
Willson said she recently told one daughter that she would probably never make her mother happy.
“If you can make your mom relatively comfortable, that’s the best you can do,” Willson recalls telling her.
James Berryman is not too comfortable, even though he has bounced around to dozens of nursing homes.
“I’m known everywhere,” said Berryman, 61, who says he has been in nearly every nursing home in Phoenix during the past 27 years, following a construction accident in 1973.
He has filed complaints about nursing home care to the Department of Health Services, the Attorney General’s Office and the Maricopa County Ombudsmen.
He sees himself as a nursing home whistle-blower and figures his reputation among nursing home administrators is: “`He will call the state on you in a minute.”‘
Some difficult seniors call fire stations.
“We may never be able to `fix’ it,” said Phoenix Division Chief Bob Khan. “But we need to adapt to make changes in the system so they have someone to call besides 911.”
