Compassion helps Alzheimer’s patients cope

Kirk Baird

Tuesday, July 11, 2000 | 9:11 a.m.

Shelton Wells sits quietly at one end of a small table in a large room. A thin, elderly man with a mixture of dark and gray hair that's shorn close to the scalp, by all appearances he's the same as anyone you might encounter on the street.

The difference, however, becomes painfully apparent when you look into Wells' eyes. There's almost a blank quality to them, like he is under some deep hypnotic trance.

As he rocks his head gently back and forth, Wells typically remains silent when addressed, even when asked such simple questions as "How are you?" and "Who am I?" by his wife, Sarah, as she patiently feeds him popcorn -- one kernel at a time.

It's not that Wells doesn't try to answer, but he's unable to form the words. He simply stares ahead at the empty space in front of him. It's as if there's a giant wall in his mind blocking his ability to process any information -- both incoming and outgoing -- rendering him virtually unable to communicate.

It's chilling to see a couple so physically close, but so mentally distant -- due to a state of mind Wells began to experience nearly a decade ago, his wife said. The last few years have reduced him to near zombie-like status.

Sarah calls it "the living death."

Most everyone else calls it Alzheimer's disease.

Mental disease

A progressive disorder that slowly kills nerve cells in the brain, Alzheimer's disease (AD) affects memory and the ability to think logically, eventually hampering the ability to perform such routine tasks as bathing, dressing and eating. Even more frightening, there is no cure for the disease, while the debate as to its cause continues.

One thing is certain, however: How rapidly the disease advances depends on the person. Ultimately, this may lead to confusion, personality and behavioral changes and impaired judgment, as well as difficulty in communicating, including the inability to remember words, finish thoughts or follow directions.

By the late stages of the disease, the victim becomes unable to take care of himself or herself, which makes it difficult and even dangerous for the person to remain at home -- which is where places such as Willow Creek Memory Care Residence West in Las Vegas come in.

One of several such facilities locally, Willow Creek -- which houses 27 full-time and 20 day care-only residents -- is there to meet a demand.

First identified by Dr. Alois Alzheimer in 1906, the disease, according to the Alzheimer's Association website, afflicts 4 million Americans, including one in 10 over the age of 65 and nearly 50 percent over the age of 85.

While nearly 75 percent of those suffering from the disease receive home care, the site estimates that half of all nursing home patients suffer from Alzheimer's or a related disorder.

And with the life span of an Alzheimer's patient lasting anywhere from eight to 20 years after diagnosis, at a cost ranging from $12,000 to $70,000 per year for care, AD is the third most expensive disease in the United States, behind heart disease and cancer.

"Most of our residents come from very loving home lives," said Marilyn Pessina, assistant activities director at Willow Creek. "We want to show them that you care about them in this home as well as the home they come from. This is home to most of them."

To reach the unreachable

John Young stands in the middle of a circle of chairs and watchful eyes. Feel-good music straight from an oldies station blares from a boombox at one end of the large room as dozens of elderly hands reach out to hit small blue balloons.

There's joy in the air and enough laughter and smiles to fill a circus tent.

But perhaps the biggest grin is on Young's face.

A native of Buffalo and a Las Vegas resident for four years, Young is 30, handsome -- looking a bit like Cuba Gooding Jr. -- nattily attired and full of enough energy to power a small city.

As activities director of Willow Creek, Young needs all that he can muster because it's pretty much a nonstop job for him as soon as he enters the building.

Typically in by 8:30 a.m. and out by 6 p.m., Young's day really begins as soon as he finishes paper work upstairs -- usually by 9 a.m. -- and comes down to meet the residents, many of whom wait patiently at the front door for him to arrive.

"From the time I get in until the time I go, that's them -- they're pumping my energy level," he said.

The residents are eager to begin their activities. They begin with the movement group, which focuses on gross motor skills, such as hitting balloons and passing a ball. The hand-eye coordination games are followed by cognitive awareness exercises -- such as discussing today's date and where the group is located -- and then a tea-and-coffee social.

During the nearly two-hour session Young is bouncing back and forth between the group participants, calling them all by name. Most know him by name too, and those who can't remember certainly recognize him. And all seem to love him.

"I don't know what we'd do without him," says Lois Burkett, a day-care resident who's been coming to Willow Creek for seven months -- two months longer than Young has worked there. "When he's not here, everyone misses him. He picks everybody up."

That includes Phillis Gentilcore ("My firecracker," Young says), who repeatedly dances with him to songs such as "The Twist" and "Monster Mash." Then there's Marie Vitile, who flirtatiously pats Young's behind several times, as if playing the drums, to which he turns around, smiles and laughs good-naturedly.

One elderly female resident asks Young if he's married or has a girlfriend. "No. Why? You want to marry me?" Young says. "You little flirt."

And even men, such as Sam Krasner, get in on the act, regularly cutting a rug with Gentilcore, Young and whoever else is standing close by. Watching the frivolity, it's easy to forget that the room is filled with people suffering from AD.

And then you see Bill Hart.

High on the AD spectrum, meaning that his cognitive abilities have deteriorated beyond most of the other residents, Hart is slumped forward in his chair, almost motionless.

Even as other residents try to engage him in conversation, he doesn't answer, remaining quiet -- for all intents and purposes unaware of anyone around him. In many ways Hart is a prisoner -- trapped in the cell that has become his mind.

After a few minutes Hart suddenly gets up and walks slowly toward the nearest door. Young sees this, gently hugs Hart and asks him where he's going. Hart doesn't answer.

Young gives him a blue ball and Hart continues on toward the door. Then, inexplicably, he stops, as if suddenly forgetting his direction and purpose. He stands motionless for several minutes.

The door is only inches away but might as well be miles.

On the job

"This disease is a strange disease," Young says, "but it's a killer. It's a scary thing to forget your past and your present and who you are."

It's a rare moment, one when Young seems to allow the tragedy of what he sees six days a week to enter into the conversation. Until now the talks have been about individual residents -- and what a blessing they are -- and their idiosyncrasies as well as how much he enjoys his job.

But as upbeat as his demeanor is, he admits that there are times when it gets to him; times of discouragement when a patient falls, forgets who Young is or even passes away.

"You just have to remember in the back of your mind you have to keep the group going," he says. "You have to keep up hope and strength for the other 40 residents."

Part of that strength can be found in the success he's had in the programs he's created since arriving at Willow Creek, such as the group sessions and activities outside of the walls -- including swimming and trips to the Strip for ice cream.

"That's my biggest thing -- to get them out into their community. It's not just ours," Young says. "I wanted to take a holistic approach, keeping them actively involved and stimulating not only their minds but their bodies."

Since he's implemented these changes, Young says that the difference with the residents has been like night and day. They eat better, sleep less, are less disorientated and overall feel more positive.

Perhaps no one exemplifies that success more than Marguerite Ward.

Although she doesn't suffer from any mental diseases, Ward suffered a debilitating stroke several years ago that left the left side of her body paralyzed. It wasn't until Young came to Willow Creek and Ward began to participate in a new exercise program that she regained use of her arm and leg. Now she proudly lifts her arm over her head and walks with the aid of a walker.

"He's a real blessing," Ward says. "I'm scared to death someone's going to sneak in here and offer him more money."

Young laughs when told about Ward's concerns and promises that he's not about to leave his group or Willow Creek. "I love working with them. I don't want to do another job," says Young, who's been an activities director for 11 years at various facilities.

Although he admits that "the money's not great" for his line of work, he says that "you can't do it for the money -- it's got to be out of love. The motivation comes from within."

The long goodbye

As 5 p.m. approaches, Young is sitting at a small dinner table -- still as energetic as when he arrived. It's almost as if he'd been popping caffeine pills throughout the day, but the only thing even remotely close were a few Tic Tacs.

Young says that he's always been an active person, but since he started working at Willow Creek he's become more patient, more tolerant and more knowledgeable. And, maybe most importantly, he says, "I have more joy than I've ever had in my life."

Part of that joy, he says, can be attributed to the residents he works with, such as Emilie Pieper.

A spunky elderly woman with a spring in her step and a fluid vocabulary, at first it seems that Pieper is there almost by mistake.

Then she says she's looking for her clothes, which she left out earlier for someone to pick up, and tells how she drove herself to Willow Creek that morning. Young knows she's confused, but he doesn't play along with her, preferring to stick to the truth.

He tells Pieper that her clothes are at home where they've always been and that she didn't drive herself to Willow Creek, having had her drivers license taken away. He then says that her son will be along soon to take her home.

Pieper seems satisfied with the answers and smiles.

"You've got to let them know the truth," Young says. "Keep her in the here and now."

It's now nearly dinner time and many of the residents have gathered in the dining room to wait for their meal.

Meanwhile in the large living room next door, Hart and Wells sit quietly -- one in a chair, the other on a bar stool -- separated only by a few feet.

There's a buzz of activity around them from care-givers and other residents, but both are seemingly unaware -- staring blankly at nothing but the walls.

Both inch further into the sunset of their lives.

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