OC Council on Aging advocate first helps by listening

Any investigator or counselor or really good listener will tell you the same thing: Silence is a powerful tool. Say nothing, long enough, and almost any conversation partner will fill quiet with words.

And, right now, Amy Huff – who needs to be equal parts cop, counselor and next-level listener in her job as an advocate for the Orange County Council on Aging’s Long-Term Care Ombudsman Program – is using silence like a crowbar.

“And…?”

Huff lets the question hang. It’s late morning, in a parking lot on the edge of Beach Boulevard, and the former eldercare lawyer has yet to check in at her day’s first stop, a sometimes problematic, 200-plus-bed assisted living center in Anaheim. Huff isn’t inside yet because a client she happened to see outside is done with her hellos and some gossip about life inside the center, and now seems ready to say something less routine, something Huff might need to hear.

So Huff waits.

The woman is young by the standards of assisted living, only in her late-50s. She’s more mobile and communicative than many of the dozens of people Huff will chat with in any given week.

Still, as she stands in the day’s lukewarm sun, the woman seems unsure about what to say or if she should say it. She switches her weight from foot to foot and looks at the broom she’s chosen to carry today, apparently to sweep dirt off a perpetually dirty sidewalk.

Finally, she answers Huff’s question.

“… And it’s nothing,” she says, laughing. “I guess it’ll be OK.”

“You sure?” Huff asks, smiling politely but looking the woman straight in the eye.

The silence hangs. It’s a key moment.

If the lady with the broom spells out a specific complaint; if she tells Huff that she’s been threatened or struck by a staffer or another resident; if she says she’s lost what little money she had to a greedy relative or scammer; if she’s been fondled or raped – even if she just wants to gripe about this place’s less-than-five-star pea soup – Huff can take steps to help. Huff can file paperwork with the state. She can call bankers or cops. She can have some positive-but-pointed words with management.

Huff can give power to a person who has none.

But, for now, all of that remains in the realm of what is possible. What’s real, by law, is that Huff can’t do anything until certain things have happened.

First, the woman holding the broom, like any of Huff’s clients, has to clearly state the problem. And that problem, however serious or trivial it sounds, has to be something Huff believes to be real, not something conjured in a creative burst of dementia.

Second, the problem has to be something that Huff should deal with, like a crime or a cruelty or a fixable dispute involving another resident or a relative. Huff, 45, of Mission Viejo, is an effective blend of intelligence and kindness and tenacity, but she isn’t tasked with making wayward kids call their parents or preventing the lady down the hall from being so mean.

And, finally, even if the complaint meets those standards, the woman with the broom has to give verbal or written consent directing Huff to take any action on her behalf.

That last rule, Huff explains later, is often the deal-breaker.

People in nursing homes and assisted living aren’t just physically vulnerable, many also worry about being kicked out of what is quite possibly their last home. They’re afraid of being labeled a troublemaker; of not being liked; of being shunned. Small setbacks can feel like small deaths, and the stakes of speaking up can feel bigger than whatever might be bumming them out.

Huff doesn’t encourage complaints. But she does what she can to make people aware that they still have rights and agency over their lives.

“Conflict isn’t easy at this stage,” Huff explains.

Huff doesn’t seem surprised when the woman with the broom shakes her head.

“Yeah. Really. I’m fine.”

So Huff ends the conversation the way she’ll end similar chats as the day plays out. She leans close to the woman’s ear and, in a voice loud enough to penetrate even the cheapest hearing aids, she reminds her who she is and what her job is, and forks over a business card.

Then, before she turns to go inside, Huff gently touches the woman’s shoulder.

“You can call anytime, OK? You won’t get into trouble.”

Behind closed doors

Huff recently spent parts of two work days with the Register, as a way to let the public see a world that’s easy to ignore. Names aren’t being used to protect patient privacy and because people known to be in long-term care can be vulnerable to thieves working online.

The world she revealed is likely to grow.

Over the next two decades, the number of people 65 and older is likely to nearly double in Orange County, meaning long-term care – either with family or in the settings patrolled by people like Huff – is going to become a fact of life for hundreds of thousands of families.

It’s already a huge industry.

Public records show that Orange County is home to 32,110 beds used by people – mostly between the ages of 65 and 100 – who are paying to live in some form of long-term care.

Most (23,713) of the beds are residential, meaning they’re in places that help their customers with day-to-day chores, such as cooking and cleaning, and physical assistance for bathing and feeding, but not medical care provided by doctors or nurses. Residential beds are situated in bigger assisted living centers, many of which are in urban parts of the county, or in much smaller board and care facilities, which typically are run in single-family homes in suburban neighborhoods. Residents in assisted living are free to come and go, but many suffer from physical or cognitive disabilities that render the option moot. Orange County has 997 long-term residential living centers.

The rest (8,397) of the county’s eldercare beds are in skilled nursing homes and rehabilitation centers. These places often look and sound and smell a lot like hospitals, offering medical care to people who need it in order to live. Not every patient in skilled nursing is elderly, and not everybody being treated is near death. Many patients leave once they’re physically able but some live in skilled nursing for many years. Public records say the county has 93 skilled nursing facilities.

In both worlds, residential and medical, most of the beds are full. That means at any given time Orange County has about 31,000 older people – roughly the size of the city of Laguna Hills – living behind closed doors.

All of those people are vulnerable. They can’t live independently because of physical or cognitive ailments. The quality of their lives – often, their survival – depends on the skill and patience and decency of their caregivers.

Those relationships, and the companies that profit from them, are watched over by a small army of regulators.

Every day, somewhere in Orange County, state inspectors go inside residential and medical care facilities to investigate complaints, look at operations and generally make sure the people running those centers are following all applicable rules. Police often go inside, too, responding to calls from patients or families complaining of everything from violence and sexual abuse to fraud and petty theft. Even religious leaders – priests, imams, rabbis and others – wander halls, offer services and check in with worshippers.

Huff’s role is different. She’s one of 44 people working or volunteering for the county’s branch of the federally funded Long-Term Care Ombudsman Program. And while they bring a wide range of work experiences to the job – Huff previously has been an attorney but others were nurses or teachers or detectives, among other jobs – they all have a singular role: to be a voice for patients.

“We represent the resident and only the resident,” Huff explains as she begins to visit people at the first assisted living center of the day.

“We’re the only ones in the system who do that.”

Huff, like most others, works a specific beat. She visits 17 assisted living centers and skilled nursing facilities, which combined house nearly 2,000 people, each month. She doesn’t tell anyone when she’s coming, and she shows up whether there’s been a formal complaint or not.

A typical visit can last a few hours and includes chatting with residents and patients, but it’s hardly limited to that. Huff talks with the people who run the centers, nurses, cooks, activity coordinators; anybody who might shape the lives of her clients.

“I’m the eyes and ears,” Huff says more than once during a couple days of work.

But observation is just part of it. Huff is an umpire of sorts, settling small disputes without regard to who is pleased by her decision. She’s a dispenser of kind-but-respectfully distant advice; a silent squeezer of hands that often can’t squeeze back.

She’s also not a lot of things. She’s not a doctor or social worker or psychiatrist. She’s not a financial planner. She’s friendly, but not a friend.

Huff’s main power – the power for all advocates – is that the reports she writes on some incidents and visits can wind up with one of two state agencies, the Department of Social Services or Department of Public Health, depending on if the issue involves a residential care center or a nursing home. Those agencies can then issue public citations that can influence a company’s bottom line.

It’s not a huge hammer, Huff says, but it’s something.

That said, Huff gets better results – meaning she can help her clients more effectively – with carrots, not sticks. Conversations with people who run the centers are almost always amiable, and even criticisms and complaints are usually offered with a smile.

“The people who want to do a good job, they want to hear from me, I think,” Huff says.

“And I think most people do want to do a good job.”

But each place is unique. Like other advocates, Huff notes that the prices don’t always correspond with quality of care. Expensive assisted living centers and nursing homes sometimes can be poorly run, and people inside face unusual stresses or hardships, while less-expensive places can be top-notch.

The differences extend beyond management.

The residents of each place – however big or small, and whatever services they provide to their clients – form a community. Politics, friendship, violence, generosity, greed, art, ego; anything that drives the younger outside world also plays out among the older people who’ve shifted to life behind closed doors.

As she walks the halls at the assisted living center in Anaheim, Huff puts it this way:

“Each of these places is its own little town.”

Love in the time of dementia

“It’ll be sweet … I think.”

Huff says this to the executive director for another assisted living center in Anaheim, a place that includes a segregated wing devoted to housing people with advanced Alzheimer’s disease and other forms of dementia.

The subject of their conversation — the thing Huff thinks might be sweet — is marriage.

Within the broad world of assisted living, marriage – along with sexual relationships, non-sexual romances, break-ups, make-ups, friends with benefits, and pretty much any alliance you can imagine – isn’t rare. In fact, while romance isn’t their purview, long-term care advocates say they know it to be common.

And long-term care romance often includes physical intimacy. In recent years, national health data shows that residents of age-restricted communities and long-term care facilities have experienced a rising rate of sexually transmitted diseases. As the population ages, and as aging facilities proliferate and grow crowded, the trend is expected to continue.

But within the world of memory care – among people who might not have legal capacity to make many of their own decisions – romance isn’t as common, and marriage is rarer still. Physical intimacy is limited among people who cannot consent.

But the ceremony under discussion is symbolic, not legal, and the relationship isn’t physical.

Instead, Huff explains, both partners feel better in the other’s presence, and they spend as much time together as they can. They’ve also expressed a desire to formalize their bond, and neither has a living spouse.

The hurdle, apparently, involves family. At least one relative is wary, apparently wondering if the event will add stress rather than ease it.

“I’ll talk to them,” Huff says. “They’ve got to know this is what they want.

“They’re vulnerable, but they’re still vital.”

Three weeks later they were married.

Source: Orange County Register