Kathy Caddell's mother spent the last ten months of her life at a high-end nursing home that charged more than $4,000 a month. That sum helped pay for wall-to-wall carpeting, plush sofas and art in the common areas--but Caddell says it didn't buy her mother basic human dignity.
"They treated her like she couldn't think and didn't have feelings," says Caddell. "We were asking for good, basic daily care and not getting it."
When her 93-year-old mother told Caddell that no one was there to help her walk to the bathroom, shower or dress, she grew increasingly concerned. She complained to the manager, who told her the home was understaffed. "They'd say, 'You have to understand, we're shorthanded,'" recalls Caddell. "At the prices we were paying, I didn't understand."
Although frustration over poor nursing-home care is widespread in Colorado, Caddell and others with loved ones at the Marriott Brighton Gardens facility in Denver have seized on an unusually assertive solution. They've organized a council of relatives of residents that has been meeting weekly since last summer, making their unhappiness known to management and demanding action. The meetings typically attract two dozen family members, and they've become well-known to managers of Brighton Gardens.
"The way the family council came together was by concerned family members who were there often enough that we knew each other's faces," says J.L. L'Enfant, one of the group's founders. "We said, 'Things are so bad around here we need to do something.' We really didn't want to move our loved ones."
Marriott's Denver facility, which has about 150 residents, is part of a new wave of senior-care centers that offer several levels of service, from independent living for those who can still perform basic tasks but enjoy the meals and group activities to nursing care for those who can no longer function without assistance. Marriott plans to open additional centers soon in Lakewood and Colorado Springs.
Under federal law, any nursing facility that accepts Medicare or Medicaid funds must allow relatives' groups to meet on the premises. Although these family councils have the potential to make a major impact on nursing-home care, they're still relatively rare. The group that's been meeting at Brighton Gardens is probably the largest--and certainly the most aggressive--in Colorado.
"Throughout the state, we have very few that are very strong," says Virginia Fraser, the state ombudsman for long-term care. "It's a struggle to get families to come. When there are enough active people who are willing to get involved, it's exciting."
While such groups are often started by social workers employed at the nursing homes, Fraser says the best ones are independent groups, like the Brighton Gardens council. "They can be an extremely strong force when they go directly to the corporate owners and to the health department," Fraser says.
Family councilmembers say that since the Brighton Gardens facility opened just over a year ago, there have been constant problems with everything from food service to basic hygiene. "It took fifteen months to get heat in the shower room," says Cherie Moore, whose 88-year-old mother lives in the nursing area. "That's just ridiculous. They don't seem to see that what they're failing to do is affecting people."
Like others active in the council, Moore visits the facility frequently and takes care of some of her mother's personal needs herself, such as washing her hair or doing her nails. She says her mother isn't taken to the bathroom often and sometimes soils her garments. "She's not incontinent," Moore explains. "If they'd take her on a regular schedule, she'd be fine."
While the support of fellow councilmembers has helped her cope with such frustrations, Moore says she still believes Brighton Gardens isn't providing the level of care her mother was promised. "They just perceive us as troublemakers," she adds. "We're not trying to blow them out of the saddle. We want to put them in the saddle and teach them how to ride a horse."
Marriott officials acknowledge that there are problems at Brighton Gardens. The company had difficulty staffing the facility for its fall 1997 opening, and it's taken longer than expected to get a competent staff in place. "Any new business goes through growing pains," says Mike Eden, regional manager for Marriott. "You have to find the right people who can do the job. In terms of staffing a nursing home, Denver is a very competitive market. With unemployment in Denver around 2 percent, there are literally thousands of open jobs."
Although Brighton Gardens had to contract with an outside agency to provide nursing care after it opened, it has now hired most of its own nursing staff. The facility will get a new manager next month, Eden says, and after that, he hopes the troubles that led to the formation of the family council will soon be history. In the meantime, the group has helped him understand what the problems are at Brighton Gardens.
"They're very interested in trying to make things better, and I applaud that," says Eden. "I think good, tough questions about care are part of our business."
Learning how to ask those questions is part of being a loving family member, says L'Enfant. "We were very naive about it all," she adds. "We didn't know there were specific federal regulations allowing family councils to meet."
Now L'Enfant and her council colleagues are exploring the possibility of establishing a statewide group for the relatives of nursing-home residents. They want to share the knowledge they've gained about how the system works and get others involved in trying to reform nursing homes in Colorado.
"There are people out there who have no one to advocate on their behalf," says L'Enfant. "They're walking a tightrope with no safety net."
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