Death raises questions of elderly self-neglectWritten by Caitlin McGlade | | email@example.com
This is a story about a woman who did not get help.
She did not ask for help. Some hypothesize that she did not want help.
No one around her was required to help.
Not the neighbors. Not the apartment complex management. Not the maintenance staff.
Carlene McNeil spent the last weeks of her life holed up in her apartment at Pelham Manor — a rental housing complex that caters to low-income individuals who are 62 years old or older — with no working light bulbs. A broken toilet seat. Trash heaped all over the floor, some of it stained with blood. No sheets on her mattress. Her 5-foot-9-inch frame had withered to 85 pounds.
Each room at Pelham Manor has a pull cord for emergencies. McNeil did not pull that cord. The management encourages residents to hang a sign on their doorknob at night. Someone will check on them if the sign still hangs by 11 a.m. the next day, according to the tenant handbook.
McNeil did not use that sign.
The neighbors noticed newspapers piling up at her doorstep. They noticed that she looked ill when they saw her in the laundry room. They visited the front desk multiple times asking the staff to check on her.
But the staff could not, said Eileen Gates, director of Pelham Manor. They could call to ask if she was all right. They did once and she said she was fine. They tried again a couple of days later and left a message. They tried a third time before they went to her room and forced themselves inside to find her dead at age 79 on March 6.
A social worker at the complex, located at 2700 Pelham Road, typically meets with each resident in her office to educate them about services. A nurse stops by every Monday to check blood sugar and pressure and to make referrals. But if a resident doesn’t ask for help, there’s not much the management can do, Gates said. Privacy is the primary concern.
“They don’t want to feel like they’re living in a nursing home,” Gates said.
The staff can enter apartments if they suspect trash is building up, she said. Policy states that the staff may also conduct unannounced inspections to respond to complaints of “strong odors, evidence of rodent or insect infestation, appearance of water, or other cues that signal unsanitary or unsafe conditions.”
The U.S. Department of Housing and Urban Development (HUD) designates the site as an approved Section 8 facility, meaning that many of its residents are HUD subsidized and the apartment complex must adhere to a set of standards.
The owner of the property is responsible for enforcing the terms of the lease regarding “decent, safe and sanitary” housing. But the owners are not responsible for problems within a resident’s unit that are not reported to management between inspections.
Section 8 sites are inspected every one to three years. Pelham Manor has passed all of its inspections going back several years, said Laura Feldman, spokeswoman for Region 5 of HUD, which includes Toledo.
“We’d never expect someone to live in anything not sanitary,” Gates said. “But we could have evicted [McNeil] because of her housekeeping.”
She said McNeil did not make maintenance requests and would seldom let anyone enter her apartment. Even when the maintenance staff brought bedbug-sniffing dogs to each unit, McNeil refused to let them in, Gates said.
The only time anyone from the management could enter her apartment was during annual inspections.
The few times the maintenance worker saw the interior of McNeil’s apartment, he mentioned to the office how dirty her space had become but Gates said she thought he was exaggerating. She had a “really strange living style,” Gates said, pointing out that McNeil had no furniture and slept on a pad on a floor for much of her time at Pelham Manor.
She didn’t have a bed for years.
McNeil’s neighbor Charon Adams questioned where the line should be drawn.
“The privacy rule is fine with healthy, young residents,” Adams said.
Adams had noticed something amiss with her neighbor. McNeil had stopped taking the bus to go shopping and had stopped leaving her apartment.
She had attended a group once every three weeks in which members would gather to educate each other about history, art, music, education or science. She stopped going to those, too.
But even when she was healthier, when her friends would come visit her, she’d either meet them in the laundry room or ask them to wait outside for her, said her friend Genie Waggoner, who participates in the group.
This case is not all that unusual, said Emilie Owens, vice president of nutrition and wellness at the Area Office on Aging of Northwest Ohio.
When older adults begin to have problems, their reaction is often to conceal it. If unable to maintain cleanliness in their dwelling, they might become ashamed and reclusive so others remain unaware. Hoarding can even become a source of comfort for some older adults who do not have close family or friends, Owens said.
“They accumulate lots of stuff and that becomes what they have a relationship with,” Owens said.
Or, Owens said, older adults who have spouses may cover for each other. For example, if grandma falls ill, grandpa might agree to lie to family members about her well-being.
But for the peers and family who see through these attempts, there is Adult Protective Services (APS). Self-neglect is the most reported type of elder abuse or neglect in the county. The county agency took 448 suspicion of self-neglect calls from July 2010 through June 2011, compared to 105 calls reporting abuse by others, 121 reporting exploitation by caregivers and 171 regarding neglect by others.
About half of the self-neglect calls come in from neighbors, peers, family members or church friends, while the other half come from people who are mandated by law to report if they witness the problem, such as police officers or social workers, said Barbara Van Wormer, senior services coordinator for APS.
Within three days of receiving a call, an agent visits the person in question at his or her home. If that person won’t allow the agent to enter, APS can obtain a court permit. Then, the agent must assess whether the individual has the capacity to make decisions and the ability to carry them out. If not, APS must link that person to services that will help. This could be as minimal as coordinating with an in-home care provider to visit regularly to clean or cook. Or, APS might deem that the individual needs to move into a nursing home.
If the individual resists, APS works with court to obtain a mandate.
“The question is at what point is it OK for the government to say it’s not OK to live the way you’re living anymore?” Van Wormer said.
She said 189 of the self-neglect calls from 2010 — 2011 were validated. Most of the adults APS investigates are between 72 and 83 years old. And most are women.
Typical signs that should evoke concern include whether the older adult is losing weight, withdrawing from hobbies or interests, appearing less well-kept than usual or emitting strange odors, she said.
Independence and privacy
Gates said she hasn’t had to report to APS because most of the residents at Pelham Manor have family who intervene if necessary. And although the coroner’s report described McNeil as “emaciated,” Gates said the resident’s appearance was impeccable.
“I’ve heard stories where they had no idea that the person was sick or having problems until after the person passes away and then they find bandages or pads and whatever it is to make what was happening to them a secret,” Owens said.
What is the crux of this behavior?
“People think, no matter what, they have to manage things on their own,” Owens said. “Everyone has this irrational fear of nursing facilities — they would rather live like that instead of going to one.”
She cited a perception among older adults that moving into an assisted living facility is somehow giving in, or that asking for help is a sign of failure to “age successfully.” Some older adults who are healthy and take care of themselves sometimes shun those who cannot, she said.
Refusing to admit to frailties is an attempt to reject that sense of failure, she said.
Even if that older adult is showing the signs, peers are often hesitant to say anything. These reactions — whether you’re the neighbor or the older adult concealing your troubles — are rooted in common American values.
“We fought the Revolutionary War about independence — independence is extremely important in our culture,” Owens said. “And unfortunately sometimes it is the wrong thing in terms of protecting people. But you can’t protect someone from their own choices.”
An independent woman
Waggoner, McNeil’s niece Julie McNeil and McNeil’s lifelong friend Bob Box said they thought someone at Pelham Manor should have kept a closer eye on McNeil.
Julie contacted Toledo Free Press in March, asking that her aunt’s story be shared.
Julie and her aunt had only recently began talking to each other again, after years of growing distant. But the pair had been close when Julie was a child, so she flew in from her New Hampshire home to take care of her aunt’s business after death.
She was mortified.
“Even if they’re not legally responsible — that’s not what I care about. The issue is how the heck did this happen?” Julie said. “I mean, at what point are you starving to death? She was obviously in that process. Wouldn’t you think that you’d keep an eye out for that stuff?”
Julie said the management should have noticed her aunt’s mail piling up for weeks, or the fact that she weighed 85 pounds. Julie insists her aunt must have looked unhealthy.
But McNeil clung to her pride, Julie said.
She remembers being 18 years old, sitting in McNeil’s dining room with her feet propped up on the chairs. Julie said her aunt “opened a whole new world for her” because she was the first person who told her that she could disagree with a book, or that she could question people and have her own opinions. She and McNeil would read the Sunday New York Times together and discuss world events.
Raised in the 1930s in Toledo, McNeil attended Scott High School. She continued her education at the University of Toledo and moved to New York City shortly after she graduated. There, she became an editor at the Macmillan Publishing Company, Julie said.
McNeil was an artist and an avid reader. Fiercely indepedent, she never married and never had children. But when her mother fell ill, she moved back to Toledo to take care of her. McNeil went back to the University of Toledo and earned a masters degree in education in 1976. She taught grade school in Genoa and later taught English at the University of Toledo, Julie said.
She got involved in Waggoner’s group and regularly presented about Emily Dickinson, art history and other writers. Waggoner knew McNeil for years, but she didn’t know that she was struggling, she said.
“For someone who is so well educated to end up like that — that goes for a lot of people who are alone today — that is a scary feeling,” Waggoner said.
McNeil cashed out her retirement in 2003. She sold all of her valuables in 2004 and moved into Pelham Manor in 2006. The only piece of furniture she owned by that point was a table and chairs on loan from a friend.
“This has taught me a lesson that I need to prepare, if you’re going to be alone,” Julie said. “We’re all going to get old and everyone we know is going to get old — it’s just that one would hope that one could do it more comfortably.”
Box, who was best friends with McNeil’s brother since childhood, lives in Arizona. He visited Ohio occasionally, meeting McNeil for museum tours or lunches. He, too, said he had no idea that her living situation was in shambles.
Box said her excuse for not inviting him into her apartment was always that she had not unpacked from the move, so the apartment was a mess.
He said she didn’t have any close relatives nearby who could have been her caregiver or advocate and he questioned if that increased her vulnerability. He also questioned what the odds are that elderly receive care they should receive. He said everyone failed her.
“We must listen closely when one speaks and be aware of what body language might tell us,” Box said. “We all have a moral responsibility for one another’s welfare and when we cease to acknowledge this and act accordingly we are no longer a civilized society.”
As Julie moved trash bags out of her aunt’s apartment, she found a book of poetry. Her aunt had marked a poem titled “What I Learned from My Mother.” Julie paused at the irony of its words in the context of her surroundings.
“I learned from my mother how to love the living … I learned to attend viewings even if I didn’t know the deceased, to press the moist hands of the living, to look in their eyes and offer sympathy, as though I understood loss even then … To every house you enter, you must offer healing: a chocolate cake you baked yourself, the blessing of your voice, your chaste touch.”