Alzheimer's had faded Iris Carnathan to a wisp of her former self. The British-born nurse, who came to Texas as the wife of a World War II GI, could no longer tend to her beloved cats or endeavor to raise an English garden in the Texas heat.
When the disease progressed, turning her around so that she slept all day and roamed the house all night, her son Dan was forced to make an anguishing decision. It was time for a nursing home.
A few months after he put Iris in Silver Leaves Nursing Center in suburban Garland, Dan Carnathan began a diary. He kept it partly to trace his mother's condition, partly as a way to deal with grief and the sadness of her disease and increasingly to keep track of what the nursing aides and supervisors were telling him--words in which he was gradually losing faith.
Entries in Carnathan's computer diary through late 1998 and early 1999 give an idea of what it was like: October 26: Called on bedsore. Said that it was still present and that it was dry and cracked. There was no goop on the sore to cushion it...December 15: Mom sitting in old urine and bowel movement, filthy. Med-tech as charge nurse, only one helper for 14 rooms. Bedsore again developing...December 22: Mom has pneumonia as I guessed on December 17. Checked out shower room for non-working heater. The room was cold when I checked...February 20: Mom alert, argumentative. Supper was pimento cheese sandwich, beans and fruit bowl. The fruit bowl didn't smell good.
When repeated pleas to the staff failed to bring any lasting results, the 48-year-old computer programmer decided to band together with other relatives at the home to push for change. In mid-1999, they formed a family council--a residents' advocacy and support group. Over the next two years, the mostly middle-aged members, children of the elderly infirm, would make themselves heard at Silver Leaves, at other Dallas-area homes and ultimately in Austin, where they joined other advocates pushing for statewide improvements in elderly care.
What happens when a troubled, for-profit nursing home is presented with a savvy, pushy volunteer organization dedicated to improving the care it gives? How did managers at Silver Leaves--a 140-resident link in a national chain--react to an energetic and organized bunch of customers?
The answers don't bode well for consumer advocacy in this troubled corner of American healthcare. They are instructive to anyone dealing with an elderly parent who might one day end up in a problem home. In the Dallas area, Silver Leaves is hardly unique among facilities catering to poor and middle-income people. Its most recent ratings from the state--which give vague quality-of-care scores to facilities that will accept patients on Medicaid--put Silver Leaves just above the bottom third.
The sad stereotype of nursing home residents being shipped off and forgotten by their relatives has some basis in fact. Only half of Texas nursing home residents have regular visitors, a state survey shows.
This story is about the flip side, about people who took it upon themselves to protect and support their nursing home-bound parents. To Silver Leaves' management, it would make them too bothersome to have around.
When he put 80-year-old Iris in the nursing home, Dan Carnathan didn't think of himself as a defiant man. In fact, he considered himself "100 percent scared most of the time." Too scared to complain. Fearful that the people on whom she depended for every meal, every glass of water, would take his disagreeableness out on her.
"My mother had Alzheimer's," Carnathan recalls over a Coke at a local mall. "There wasn't anything that medicine could do for her. There wasn't anything that would help her condition. All you could do was to keep her comfortable. If she had an accident, clean her up. Make sure she had something to drink in front of her. Help her with her feeding so it wouldn't go all over her clothes. Make sure when she flopped around in bed she didn't tear her arms, which happens at that age."
At Silver Leaves, where he placed his mother in June 1998, Carnathan at first plied aides and nurses with $10 and $20 tips, hoping to curry favor. "I found out they'll take it. No big deal. I'm thinking if I can build up some kind of working relationship with these folks, she'll be better taken care of. But they had a high turnover; I was dealing with new people all the time."
He says he didn't expect the staff "to be perfect every day." But they had problems keeping her clean, giving her proper medication and keeping her from becoming dehydrated. "I'm running around trying to believe they'll actually do what they're telling me. I was thinking, 'What's gonna happen to my mom?' There were a lot of scared people in there just like me."
Throughout his diary, he noted how Iris was not being cleaned properly after meals. Her diapers often weren't changed as frequently as they should have been. His breaking point came on April 16, 1999, when the diary entry read: "Mom sitting in own excrement again. [An aide] who was to clean her stated that some of the excrement had already dried to her...Staff shortage for ward."
In his note, he recorded that an ombudsman, a volunteer who serves as a link between the home and patients' families, told him she hoped she would "never end up in a nursing home." She promised she'd check into what went wrong and call him the next day.
When that didn't happen, Carnathan called the Texas Department of Human Services to file a formal complaint. "I realized I wasn't going to get anything going on my own."
In the next two months, Carnathan filed more complaints, moving in his own personal journey from scared and frustrated to fed up and firm.
It was his frustration that led him to Lee Lutz, a like-minded relative whose mother had arrived at the home in 1997.
Lutz didn't need a period of personal evolution. A Connecticut native used to speaking her mind, the 56-year-old Lutz has worked in social and political causes running from opposition to a highway project in New York City in the 1970s, to setting up free legal aid in Oregon in the early 1980s, to working with the disabled and promoting mass transit in Garland today. Married to a transit engineer, she's a frequent civic volunteer and a member of Garland's housing standards panel.
"A lot of people aren't involved. Lee is very, very involved," says Garland City Councilman Jim Dunn, adding that Lutz has a reputation on the housing board for being boot-tough on slumlords. "Lee is one of those people who keep their eyes on the prize."
Lutz's mother, Emily Burns, was active well into her 80s, attending the opera, reading good literature, volunteering at local hospitals and a newcomers' club. Then her health deteriorated after a second mastectomy and a series of strokes. In 1997, Lutz decided to move Emily to a nursing home when she realized she could not pick her up and move her around without both of them getting hurt. "I've worked with people with disabilities, and I made the decision it was time for respite care," says Lutz, talking at the breakfast table of her comfortable Garland home.
She chose Silver Leaves because it was reasonably close and, at that time, highly rated by the state, which sends licensed nurses to inspect homes at least once each year. Also, Silver Leaves accepted patients on Medicaid. "At $3,000 a month, I knew it wouldn't be long before her own assets ran out," she says.
For the first year, Lutz says Emily seemed to enjoy Silver Leaves even more than staying at home, given all the social activities. She crocheted 30 big, white angels and "made some good friends," Lutz recalls.
In 1998, the home's corporate owner, Chartwell Healthcare Inc., ran into deep financial problems--at one point missing payroll and skipping meals--and sold it to a new owner, 22 Acquisitions Corp., of Horsham, Pennsylvania.
Lutz and Carnathan say the new management made a lot of promises, but during their first year at the helm, things began going downhill.
"In little ways you started to see them slipping in terms of staffing, quality-of-care issues. It wasn't terribly bad, but it was getting a little shabby. It made you insecure. You weren't sure what direction they were going," Lutz says.
As with Carnathan, Lutz says her patience ran out when the problems landed on her mother. In August 1999, she noticed a fresh set of fist-sized bruises on her mother's back. Emily, who had retained her mental altertness, said nobody had hit her, Lutz says, adding that she determined later after talking to an aide that no harm was meant. The staffer hurriedly lifted her in a way that left marks.
"That's why I began thinking about a family council," Lutz says. "I thought it was a good idea to pull families together, because I'd met other people who were having more problems. They all were saying the same thing."
Under state regulations, residents and family members have the right to organize a group. The home in turn must provide a place to meet and at least listen to their views. Staff members can attend meetings with the council's permission, and a common practice is to open part of the meeting and leave part closed to encourage frank talk. "We were concerned about good care and a positive workplace," Lutz says. "We were thinking about a way to help family members and elevate the staff." She was aware that a national shortage of nurses and a vibrant job market in other, better-paid fields made finding good employees a priority for all.
So the Family Partnership of Silver Leaves, as they named themselves, went to work. It was part watchdog, part emotional support group, part PTA. The group described itself as a "modification on the family council concept with an emphasis on action." In little time, 20 to 25 regulars were attending the monthly council meetings in the home's rehabilitation room, which sits along one of the long, well-waxed halls that connect four nurses' stations. In between, residents are housed two to a room, some with ventilator tubes attached to their throats. Bouquets of plastic flowers, cards and deflated birthday balloons brighten some quarters; others are bare.
Rosie Belt, whose mother turned 100 in the center, says she liked the way the group worked to brighten the clinical setting with caroling in the halls at Christmas and its adopt-a-resident "buddy program." It asked members to look in on roommates and others with no close relatives of their own. A genteel, "if you can't say anything nice..." sort of woman, Belt says she felt more confident acting through the group when it was time to put her foot down. "When we turned things in [to the state] as a group, you didn't have to worry as much," she says.
One of the first things the council obtained was a copy of the state's nursing home regulations. "The management was 10 times smarter than us; they knew what the rules were," says Carnathan, who with Lutz became co-chairman of the group. "Once we got our hands on the rules, which set out the minimums, we could go in there and say, 'Hey, you're three people short today. Why don't you get somebody?' We could tell them, 'You need to increase the food allocations,' because we knew what they were."
Over the council's first year, it arranged for a covered bus shelter to be built for the staff, started an employee-of-the-month program, worked on an educational program for nursing aides, bought coffee makers for the nurses and helped the home put new bold signs on its doors and rooms.
When rings, cash and residents' supplies began to disappear, they called in Garland police to set up an internal crime watch. When the home's Christmas decorations ended up missing, they raised money to replace them. They brought in monthly speakers, a lawyer on living wills, experts on Alzheimer's and dementia and psychologists who advised them on the strains of having a loved one in a nursing home.
Since staff training and quality are so critical in a facility where many residents are immobile and require help for their every need, Lutz says, one of the group's chief goals was to elevate the staff. "They're generally underpaid, because Texas' reimbursement [for Medicaid] is at such a low level," she says. Lutz saw the council's role as one of helping management deal with high turnover and poor morale.
If minutes to the group's monthly meetings are any measure, however, the top issue on the agenda, right from the start, was Silver Leaves' regulation violations and what the home was doing to fix them.
In the first half of 2000, for instance, the group submitted eight pages of recommendations and met five times with the home's managers to go over violations.
Don Harris, a regional director for 22 Acquisitions who became the on-site administrator at Silver Leaves early this year, began dealing with the group in April 2000. Harris, whose voice became testy at the mention of Lutz and Carnathan, declined to comment on any aspect of the council's activities or the home's problems. "Write it one-sided and we'll deal with the lawyers," said Harris, who declined to let the Dallas Observer interview his staff. A previous administrator, who is now managing a home in Plano, also declined to comment.
Texas Department of Human Services records show the home has had waves of regulatory violations from mid-1999 to the present day.
As a result of its annual inspections, follow-ups and investigations of complaints, the state moved to stop government payments for new admissions four times in that period--August 1999, January 2000, February 2001 and March 2001. Three times it recommended all government money be cut. During its most recent annual review in December, for instance, the state turned up eight deficiencies, including inadequate assessment and prevention of pressure sores, problems with feeding tubes, inadequate staff training, unsanitary kitchen conditions and rooms and bathrooms kept in substandard repair.
Two months later, during its follow-up visit, the state found evidence of more problems: inadequate screening of newly hired workers for histories of abuse and neglect; insufficient staff; medication errors; poor nail, bath and incontinent care; inadequate assistance with meals; and a failure to "treat residents as individuals with dignity."
"They have a history of problems in meeting requirements. It's a number of different kinds of things," says Rosemary Patterson, a DHS spokeswoman. "We find problems, and it takes them quite awhile to fix them. Then we find more. They can't stay in compliance for any length of time." She said Silver Leaves ranks below average but is hardly the worst home the state has seen.
Over the past two years, the state has fined the home $107,800--proof that it frequently took prodding and penalties to move Silver Leaves to act, Patterson says.
The family council would usually air its complaints to Silver Leaves administrators before calling the state, Carnathan says. The response was usually what he calls "the yo-yo effect."
"We'd raise some issue and they'd be good for a couple of days, then it would drop back down," he explains. "It became a monthly process. Usually they'd come up with the excuse, 'We're short on staff.' Well, that isn't my problem."
He and Lutz say they tried working up the chain of command--from nurses, to nurse administrators, to the administrator. But they came to realize early on that the only way to get action was to blow the whistle and call the state.
The record-breaking heat of last summer didn't spare the residents of Silver Leaves. With the ground baking and daytime temperatures approaching 110, the home's air conditioners were falling behind. When temperatures in some rooms broke 85 degrees--uncomfortable, if not dangerous for the elderly infirm--the family council began to steam.
"Mom's room 87 degrees," Lutz wrote in ink on a copy of the minutes of the council's July 2000 meeting.
"A lot of families were worried. You kept hearing on TV about the risks to the elderly from the heat," she recalls now. "The management told us, 'We go around and ask people if they're OK.' Older people may not recognize they have a problem, so we didn't think that was enough. Besides, they always want to be very obliging. They were raised to be nice, especially to a person in authority."
The home, according to a local newspaper account, brought in portable coolers five days after an air conditioner broke. In the meantime, the council called state Representative Fred Hill and Jim Lehrman, deputy commissioner for long-term care at DHS, who initiated a complaint investigation.
In a Garland newspaper, a Silver Leaves administrator was quoted at the time saying the state had taken no action. In fact, the state cited the home for "failure to maintain a safe and comfortable environment" and failure to do preventive maintenance. "Temperatures were as high as 85 degrees, and that's hard on the elderly," says DHS' Patterson. "It's not healthy."
In going over the regulations, Carnathan says he and Lutz first came across a passage that said the home should be required to maintain temperatures between 71 and 81 degrees. But they missed in the fine print an exemption for facilities built before 1992, which were grandfathered out of the new standard. That included Silver Leaves.
They also wondered what local codes might apply. "I called the [Garland] building department and asked what are the codes for nursing homes," Lutz says. "I was told, 'Lee, it falls under the standard building code.' They're in the same category as warehousing and outside storage. There's no regulation for heat and air."
Garland City Council members Jim Dunn and Jackie Feagin, both friends of Lutz's, say they became interested in the issue and knew it extended beyond Silver Leaves. Another Garland nursing home had problems maintaining heat the previous winter. "It's devastating when nursing homes don't do what they're supposed to do," Feagin says.
After researching the issue with the city's legal department, they concluded the city could set its own "comfort zone" standards, as it does for hospitals and schools. Dunn says the city has some very good assisted living centers and some nursing homes that have problems meeting requirements. "These issues are really something people tend to put out of their minds," he says. It takes a squeaky wheel like Lutz to get them into view. "This is what Lee does," says Dunn, who appointed Lutz to the city's housing standard board. No doubt, she irked Silver Leaves, he says. "Management tends to hate it when someone's looking over their shoulder."
This past March, the Garland council unanimously passed a measure as part of its health code requiring nursing homes in the city, regardless of age, to keep temperatures in the 71-81 range.
"I've never known Garland to be particularly progressive," says Lutz of the Republican-leaning, Middle America suburb she moved to in the mid-1980s. "We were very good on this."
By last fall, with the air conditioning matter still fresh and a list of grievances adding up, the Family Partnership of Silver Leaves pressed its agenda even harder. At its September meeting, Lutz noted that of 47 nursing homes in Dallas County, Silver Leaves had fallen to dead last in a state quality survey.
It scored 25 out of a possible 100. State records show complaints were being filed at the rate of five per month. And that was about to pick up and reach 15 a month by the start of 2001.
As a foreshadowing of what was to come, the group had noticed that when new residents arrived, administrators weren't telling them about the family council.
In February, they learned why. Early that month, Harris stopped Lutz and Carnathan in a hallway and told them he would no longer recognize their group. He told them one of their members, Joan Allen, a Garland real estate agent, had complained about their aggressiveness. The administrator told them a new, alternative council was forming around a small group of family members and that he was required to recognize only one. In other words, they were out, moved aside, dismissed.
"They found a way to circumvent the regulations," says Beth Ferris, an Austin representative of the Texas Advocates for Nursing Home Residents, referring to federal and state rules about family councils. There is nothing in the loosely written rules that protects an aggressive family group from being pushed out by management.
"I've heard of family councils that had to meet outside their facility because they were afraid of the administration. Some homes don't want families talking to one another," Ferris says. "We're even finding nursing homes that ask residents they have to go into mediation if there's a problem, and they make it binding on family members as well. In most cases, you don't find there's a person who's strong enough to be a leader, who won't get intimidated by these tactics."
Lutz says that rather than argue with Harris, she and others in her group decided to join the new group and carry on. Apparently, though, the home had an answer to that as well.
Carnathan and several other members had watched their parents pass away during the council's year and a half of activity, but the council had encouraged them to stay on and continue to participate and volunteer. At the first meeting of the renamed Family Council of Silver Leaves, the new leaders put an end to that. They restricted membership to those with relatives in the home, so Carnathan was barred from the new group. He and Lutz say those rules were put in place without a proper vote, but there was little they could do.
Shirley Selman, the new group's president, says the rules were indeed changed to move dissenters out. She says the former council was dedicated to "a lot of nitpicking, to be real blunt."
Selman visits Silver Leaves several times a week to visit her mother-in-law and says she is happy with the home. "It's never been untidy. I have no reason to think there's any unsanitary conditions," she says. "The residents are clean and well-cared for."
She says she has taken no interest in what state inspectors have to say about the home and does not read their reports, which by law are available and visible in the lobby.
Says Lutz, when told of that: "Perhaps that's what [the home's administration] prefers."
Joan Allen, who has been active in both groups, says the old council had become "so negative" that in her view it was time for a change. "The approach was, 'If you're not happy, call the state.' I was worried sick that they [the council] were going to close them down."
Allen, whose mother has been at Silver Leaves for eight years, says moving her mother would have been the worst outcome of all. "It's so close for me. I'm there two, three times a day," she says, adding that she picked a home "where I could be there the most time."
In Allen's view, the old council's approach was too forceful, too divisive, and it escalated into fights that she thinks were unnecessary. "It got so negative I didn't want to go," she says. She says Lutz and Carnathan's style seemed too bare-knuckled for "this little small town," more suited for larger political fights than efforts to improve conditions in a home.
Allen, who called Lutz intelligent and well-connected in Garland and beyond, agrees with some of the council's fundamental criticisms of Silver Leaves over the past two years. The home has been short on staff and would hire aides off the street, give them a little training and put them to work, she says. Now, she says Harris is hiring only trained aides and has addressed many of the deficiencies that plagued Silver Leaves at the beginning of the year. "Today's lunch was wonderful," she said.
The new council is lower key and does less on all fronts, including the "ladies' auxiliary" functions that Lutz and Carnathan's group organized with such aplomb.
"I think everyone was burned out," Allen says.
The most striking difference between the two groups is the trust the new one has put in the administration. Residents are encouraged not to call the state.
At their June meeting, for instance, Selman encouraged the nine members in attendance not to call regulators and instead deal with lower-level staffers and the home's manager. In fact, the chief message at the meeting, which was attended by almost as many staffers as family members, was to stay off the phone.
"The buck stops at Don Harris," Selman is quoted as saying in the group's minutes--a statement she repeated in an interview.
Someone also told the meeting that some complaints to the state were made "to harass the facility" and that "the center could take action" against those who complain.
Still, there are legitimate matters to complain about. In July, DHS cited the home for failing to report an allegation of sexual abuse. And last month, Inez Jones, a 78-year-old double amputee, fell out of a shower chair, knocked her head and died the following day. State regulators faulted Silver Leaves for "failure to provide appropriate intervention" following the fall. Rather than immediately call for an ambulance and render her immobile, the staff moved her back into her bed. Jones' family has hired a plaintiff's lawyer who is looking into the matter and could file a negligence suit.
The activist family group was gone. Problems were not.
In March, Lutz's mother figured out she had been in Silver Leaves too long. "She told me, 'Lee, I don't think they want us here anymore,'" says Lutz, who moved Emily to a home in neighboring Richardson. She says Harris wouldn't even acknowledge her mother if they were in the same room.
At the same time, the remnants of the old family council turned to Austin and some of the larger issues involving nursing care before the Legislature. "We became more political because we didn't have anything holding us back," Carnathan says. "We were also trying to become a kind of Johnny Appleseed and invite people like us to get family councils started in their own nursing homes."
Through the Garland/Richardson Association of Family Councils, which they formed the year before, they lobbied for higher state reimbursements, fixed staffing requirements and other issues that they could see were root causes of problems they saw in Garland.
"Lee was able to bring in folks who have stories to tell. She got a lot of grassroots support going across the metroplex," says Abby Sandlin, a lobbyist for Texas Watch, a consumer advocate group. In a session in which the industry pushed tort reform and consumer advocates pushed for more state money to hire staff, each got a little of what it wanted.
Lutz says she was disappointed with the outcome: a moderate increase in state funding and mandatory insurance requirements for the homes. "We're still 47th in the nation in money spent per bed," she says.
Meanwhile, Lutz says people at Silver Leaves still call her regularly, as if she remains the place to go to lodge a complaint.
As for the remaining critics, Harris appears to have discovered a new weapon: criminal charges.
Loyd Chipman, an 85-year-old former Greyhound mechanic whose wife, Minnie, is an Alzheimer's patient at Silver Leaves, says he went to Don Harris' office in late May with a question about a bill. Chipman, who has hearing aids in both ears, was listening to Harris explain something, but he was speaking too fast. The 135-pound senior says he put two fingers on the administrator's shoulder as he leaned forward and asked him to slow down.
Harris, a robust man of at least 200 pounds, told Chipman he had just assaulted him and called the Garland police, Chipman says. An officer took a report from Harris and wrote Chipman a citation for misdemeanor assault.
He said he didn't bring the matter to the new family council because he doesn't see it standing up for people like him. "They're in there for the company," he says.
Chipman's story got back to Lutz and Carnathan, who accompanied him to court in June for a preliminary hearing, along with his son Bob. When Harris failed to appear, the judge tossed out the case.
Coincidentally, a nurse filed a similar misdemeanor charge against another family member two months before.
Marelene Shinaberry, who was active in the old council, frequently visits her 84-year-old mother, Juanita Zeller, at the home. She put her there four years ago after Juanita had a stroke, "and she never came back," says Shinaberry. Today, Juanita is bedridden, slipping steadily into dementia, increasingly dependent on others for her every need.
"Who is that?" she asked her daughter about a new visitor one recent afternoon. She napped for a few minutes, awoke and asked, "Who's that?"
Minutes later she nodded off again, her hair, face and nightgown blanched the same silver shade.
Shinaberry says she was at the home late one night in March and noticed that at least one aide in her mother's section had not shown up. She says she complained, and eventually someone came to fill the shift. A few days later, a Garland police officer came to her home and told her they'd received a complaint alleging misdemeanor assault, says Shinaberry, a longtime catalog sales representative at Neiman Marcus. The complaint was filed by a nurse to whom she had spoken one night about a shortage of help, Shinaberry says. "I never touched anyone. All I did was complain."
A municipal judge subsequently threw out the case on a technicality, and it was never refiled.
Shinaberry says now she is making plans to follow Lutz and move her mother away. "I've never liked it here," she says. Nancy Chipman, Loyd's daughter-in-law, says her family would like to vote with their feet, too, but they have no choice. Minnie Chipman needs a feeding tube and constant care, which they pay for without government aid.
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"That place is a hellhole, if you ask me," Nancy Chipman says, but the nearest home that might take her is in San Angelo, 280 miles away. "We'd move her tomorrow if we could. The question is where."
Throughout the council's battles, Lutz says a few other relatives told her that if she didn't back off, Silver Leaves would be shut down and dozens would be faced with the same dilemma as the Chipmans.
"I always asked them, 'Why would I want to close the home my mother is in? At her age, a move isn't easy or good."
When they began their council, there was a lot of talk of improving the home, and they went about it with a degree of optimism. "We didn't start out to pick a fight. It isn't something we enjoyed," says Lutz. "We started out taking things to the appropriate people, the charge nurse, the unit manager, the director of nurses and up to the administrator. When they go on not feeding people, not changing their diapers, not making any changes, what can you do?"