By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
By Eric Nicholson
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."