By Matt Ward
On Wednesday, Rossington could barely sit down during a meeting of the Alzheimer’s Association Desert Southwest Chapter; she was afraid if she sat down grief would overcome her.
If tears were currency, this would be one of the wealthiest organizations in the Silver State; the Pahrump branch of the support group meets every second and fourth Wednesday at UNR’s cooperative extension office on Calvada Boulevard and Dandelion Street.
It’s probably the only refuge for Alzheimer’s and dementia sufferers and their caregivers in Pahrump.
What’s troubling about that is that rural Nevada communities like Pahrump are about to become ground zero in an epic struggle to care for those suffering from Alzheimer’s and other memory-related ailments.
The coming tsunami threatens to swamp the limited resources available to care for these people and assist their families.
The statistics are mind-numbing, the lack of resources outrageous, and the growing crescendo of voices seeking help in neighborhoods across this valley is heartbreaking.
With 10,000 baby boomers retiring every day and more than half moving from their home states after retirement, communities in the Southwest are set to receive an influx of older newcomers for at least the next few decades.
One in eight will bring with them the seeds of Alzheimer’s or dementia or some other brain disease that will steal from them everything — their independence, their memories, their personalities, their spirit, and finally their lives.
The disease will do as much damage or more so to the people struggling to care for those suffering under the weight of these terrible conditions — an astonishing 60 percent of caregivers die before their Alzheimer’s-suffering loved ones do.
And in Nevada, a state long known for its go-it-alone attitude and stingy public finances, this situation could easily become a catastrophe.
Ask those struggling with it today, and they would agree the future looks particularly bleak.
Faces of the struggle
Toni Wombaker spoke last week at the regular Rotary Club meeting at Mountain Falls. She showed a video she made over the summer featuring her mother, her four children, herself and her husband. It’s on YouTube, where it’s already garnered about 1,500 viewers. It’s amateur quality belies a powerful message no Hollywood production could match in a million tries.
The star of the show is Yvonne Jensen, 69. She’s Toni’s mom and she’s suffering from early onset Alzheimer’s. Yvonne’s better known in northern Nye County for being Judge John Davis’ companion — he was her caregiver for a time, until he died from cancer.
Toni made the video to showcase the struggles her family shares coping and caring for Jensen, who rarely speaks anymore, doesn’t recognize the faces of her children and grandchildren and is slipping away from this world in an ever frightening way.
Toni says it all in the first few minutes of the video.
“Here is my reality. I have watched my dear, sweet mother go from being an independent, beautiful, educated artist, banker, seamstress and all-around strong woman into an extremely quiet shell of who she used to be. She has no idea what to do with her time or how to care for herself. My mom was so amazingly talented with numbers, painting, crafting, sewing, basket weaving. She was a strong swimmer, an incredible cook and baker — I could go on and on.
“But the reality is, though, Alzheimer’s has stolen that all away. She is still dear and sweet and seems to be content and happy, with a beautiful smile and a twinkle in her eyes. But all her talents, skills and most of her memories are gone. I have watched her slowly slip away, day by day. Does she know who I am? I can honestly say no, I don’t think she knows who I am, which is heartbreaking.”
As hard as it is to believe, Toni and Yvonne are among the lucky ones — Toni’s husband Tim has a good job; Toni is able to care for her mother nearly full-time with the help of volunteers; Yvonne was wise enough to set aside money for her old age; and she will likely die surrounded by children and grandchildren who love her dearly even if she hasn’t spoken more than a few words to them in the last few years.
Los Angeles transplant Vincent Hedges’ longtime girlfriend — her name is Joyce; he calls her a life partner — will not be so lucky. With no kids and no nearby family to speak of, Joyce will be fortunate if Vincent is around when she succumbs to her disease, a form of dementia called frontotemporal dementia.
Vincent showed up at the Alzheimer’s support meeting on Wednesday — it was his first time attending.
“Her disease is progressing at a somewhat alarming rate. I don’t know if the progression is continual or if it kind of goes in spurts and slows down. So I have to think ahead now in terms of what do I do and what resources are available when it gets to the point when I can’t take care of her. That’s the reason I’m here,” he told the group.
Like many who move to Pahrump, Vincent and Joyce had big plans for their retirement — dementia was not part of them. A retired entertainment executive, Vincent said he and Joyce left L.A. because they were tired of the big city. They initially moved to Las Vegas, but couldn’t find a house they liked. Both had heard of Pahrump many times from listening to Art Bell’s Coast to Coast show on the radio over the years. It’s a story that resonates with baby boomers and should ring in the ears of policy makers because it’s likely to be repeated over and over and over.
“I’ll be honest, the first time we came out here, we were kind of, you know. But we kept coming out and coming out. It Pahrump kind of grows on you. We found a house we liked,” Vincent said. “I think the thing that frustrates me the most is that we came out here expressly to retire and do a bunch of things and we can’t do that anymore. I have some hobbies that I’m having to put on hold because I can’t do them. That’s frustrating.”
Joyce’s disease causes her to do a number of things, including sometimes lashing out, eating meals one after another because she forgets she just ate, and she enjoys playing with her jewelry, almost like a little girl, for hours and hours.
Vincent can only leave her alone for brief periods of time.
“She won’t do anything. Rarely will she do anything I ask her to do. What she does almost all the time is she’ll get her jewelry boxes out and she plays with her jewelry for hours. Toni’s mom does this too . It used to upset me initially. But the only person getting upset is me. It’s not affecting her at all. It’s not affecting me at all, so if she wants to do that for eight hours a day so be it ,” he said.
Vincent says his number one concern is that something will happen to him.
“I’m not at that point yet where I’m completely worn out and exhausted. I’m trying to prevent that from happening,” he said. “Other than what is happening to her and the progression, my biggest worry is what is going to happen if something happens to me?
“You have to plan way ahead if something happens to me, because there’s no one else who’s going to take care of her.”
Frank is 63 years old. His wife of 37 years is 75. They’re from the East Coast originally. She survived polio as a child, but suffers today from dementia — her particular disease is referred to as dementia with Lewy bodies and it’s very similar to Alzheimer’s.
Frank chose not to give his last name for this story; he also wished to keep his wife’s name private. Frank, however, shared his particular dilemma with the Alzheimer’s support group on Wednesday. Like Vincent, it was his first meeting. Honestly, Frank looked like one of the many who come to the group when life is at its most unbearable.
“It’s an emotional issue on both parts. We’ve been married for 37 years. We know each others’ shortcomings very well. I have more patience than God, but it is running out. Once every 10 years, I’ll lose it,” he told the group.
His primary reason for seeking support, he said, was that his wife’s condition was deteriorating fast and he believes he will have to put her into a facility soon — but he can’t afford it. He said he needs legal advice so that he can get his wife the care she needs without going bankrupt doing it. The one place in Pahrump he is familiar with, Evergreen nursing home, where an aunt and mother-in-law both once lived, wants to charge $7,000 a month to care for his wife.
“I assume I have three, four or five months maybe. My aunt and my mother-in-law, just to get in there, they’re going back three, six months of financial statements . My mother-in-law had six pages of applications; five years later my aunt had 26 pages of applications. And they nit-pick and nit-pick,’” he said, struggling to describe his ordeal. “The thing with the assets is I can’t get rid of anything because of the damn real estate market. We have a couple of pieces of property here and there. I can’t give them away. So now what?
“That’s the reason I really came here because maybe you guys can guide me to an attorney who knows what the hell they are talking about. Most of them are useless and harmful.”
These are the true tales of the survivors — not only do they have to cope with the daily care of their sick loved ones, they stress about the final days, the medical bills, the legal help, their own physical and mental well-being and finally the lack of easy resources for much sought-after guidance.
Those are the stories that filter through the support group. They’re from people actively seeking help today. The stories coming from the streets, from people who needed this sort of guidance yesterday, are even more frightening.
When the white hats ring
Jennifer Jonas is a deputy with the Nye County Sheriff’s Office. Like most longtime cops, if she hasn’t seen it all, she’s seen more than she ever wanted. Ask her about her encounters with some of the elderly residents she routinely comes into contact with and you can see her tough law enforcement exterior soften a bit — she has a special place in her heart for sufferers of Alzheimer’s and dementia.
Before joining NCSO, Jonas was a cop in Winnemucca. A call in November 2002 changed her perspective on caring for elderly residents. A man was shopping with his wife at Walmart, which in Winnemucca sits on a hill not far from Interstate 80. A call went out at dusk on a chilly day. The wife at Walmart lost her husband — he had dementia and just disappeared.
Jonas and her fellow Humboldt County deputies scoured the area, fearful as the night turned cold that the man would be lost forever. Indeed he was, or at least until April, when hikers found his remains under some sagebrush some quarter mile from the interstate.
Memories of that tragedy still reverberate with Jonas.
Her bosses at the time reacted to the tragedy by signing up to the Project Lifesaver Program — a nationwide effort started in Virginia to supply bracelets with GPS chips in them to families of autistic children and Alzheimer’s sufferers so that police could locate them should they ever wander off. Humboldt County was Project Lifesaver’s first foray into Nevada and Jonas became its coordinator. Nye County joined the program in 2009, though it’s unclear how extensive it is used. Jonas has taught other police officers how to use the directional equipment in three states. She has also taught fellow officers what to do in instances when they come into contact with older citizens who they think might be suffering from Alzheimer’s and dementia.
“Some of them are going to be fearful of us. . . . They are fearful because they have no idea who we are or what we want. Some of them will hide because they think they’re coming for them, they just don’t know what to expect. So part of the training that we teach with Project Lifesaver is how to interact with someone with Alzheimer’s. How to try and reassure them, ” she said.
Describing a typical interaction, she says, “Some of them have ended up, it’s a criminal call, we’ve had some where it’s an issue of domestic violence that are related to it. Because a lot of time people with dementia or Alzheimer’s tend to get easily agitated, upset, angry, especially at sundown, or sunset.”
One particularly poignant incident Jonas remembers happening in Pahrump involved an Alzheimer’s sufferer involved in a domestic dispute. The man was taken to jail — he promptly forgot why he was jailed and spent the rest of the evening asking anyone who would listen, “Why am I here?”
Jonas said the law is clear, the responsible party to a domestic dispute “shall” go to jail — though she admits, it was a heartbreaking thing to put the man through.
Perhaps worse was a call Jonas responded to when she first came to Pahrump. She was on patrol and she was sent on a coroner’s call — an elderly woman had died.
She says she got to the home and found an older gentleman outside with his neighbor. The older gentleman was curious what was wrong with his wife. When Jonas entered the man’s home, it was clear the woman had been dead for several hours. What happened next can only be described as gut-wrenching.
“So I went back outside to get my things, to do the coroner call, and I told him that I was very sorry that your wife passed away and he was crying; they’d been married like 60 years. They were older. So I got my stuff.
“The gentleman with him was probably 10 or 20 years younger, but a friend that they knew at the Elks club or something, so I went inside and was taking care of the call and went out to my car to get a bag for her medication and when I came out — you know I had no clue, I’d just talked to him and went in and started doing my job — I went back out and him and his friend walked back around the corner of the house and he came around and said ‘deputy, deputy is my wife okay?’ I had to stop for a second and I said ‘sir, don’t you remember, I just talked to you a few minutes ago and told you your wife passed away,’ and he started crying again. It was like ‘oh.’ I looked at his friend and asked if he had Alzheimer’s and he shook his head yes. And every time he would see me again, he would ask the same question. To me it was horrifying,” she said, a twinge of emotion in her voice.
“It was a recurring nightmare. . . . it was like fresh trauma for him every time.”
There have been other cases, too.
Once, not long ago, Jonas was dispatched to a home where a man had fallen off his roof. Emergency personnel responded and took him to a hospital, leaving his wife, suffering from dementia, there in the care of deputies. Jonas found herself having to care for the woman while trying to find a caregiver or physician to relieve her — there were other calls for service she needed to answer, after all.
Often in those circumstances, she says police will call Elderly Protective Services in Clark County. But EPS is usually so busy, response times to Nye County vary from hours to days.
Jonas agrees that there is a lack of resources available to communities to sometimes respond adequately in situations like these.
“I hate to say to someone, ‘hey, you need to get your husband to a doctor, he might have Alzheimer’s,’ because we don’t diagnose, but as law enforcement we can help recognize that. We have a lot of people who, especially older, retired folks, as they get older in years, they want to keep their independence. Us coming in and them having to admit that there’s a problem, he’s doing this or she’s doing that, I think sometimes they’re afraid to report it or get it diagnosed because they don’t want to see their spouse put in a nursing home,” she said.
Local firefighters face similar dilemmas when coming into contact with dementia-afflicted residents.
Pahrump Valley Fire-Rescue Services Lt. Steve Moody says about 70 percent of the patients his outfit transports are elderly. When contact with an Alzheimer’s sufferer is made, often the EMTs or firefighters will check their homes for food and electricity and such, as well as make sure a caregiver is within easy reach. He admitted, however, that often, unless there’s an acute medical problem, EMTs turn such patients over to deputies.
“It’s a touchy situation. Just because they have Alzheimer’s doesn’t mean we can kidnap them and take them to a hospital,” he said.
Where are the policy makers?
Fortunately for Nevada, and Pahrump, bright spots are starting to appear on the policy landscape. People are realizing the resources available to sufferers, families and whole communities need to be in place and need to be adequate.
Simply put, lives are at stake.
A legislative health committee task force is right this moment preparing a 10-year statewide plan for Alzheimer’s disease care to be delivered in early October; members and leaders in research are hopeful that rural communities including Pahrump will benefit.
The committee’s chair, State Sen. Valerie Wiener, said the final meeting of five will take place on Oct. 10, and the plan will be complete to send to the legislature then.
“It doesn’t end with our work, it really just begins with the work that we’re doing,” she said. “This will be the last legislative work that I do, but I’ll be the primary advocate of what we do when it goes to hearing in 2013.”
The task force has narrowed its scope to four areas: independence and safety; quality of care and regulation; access to service; and impact of the disease on the state, she said.
“We need to shift our cultural attitude towards dementia and Alzheimer’s disease,” Wiener said. “We have lots of fear about it and we don’t want to talk about it.”
Dr. Charles Bernick, associate medical director at the Cleveland Clinic Lou Ruvo Center for Brain Health and task force member, said that the plan will present a blueprint of care, but to settle all needs would require a lot of money.
Bernick wants to address the current medical model. With more money, he’s optimistic that patient care could improve earlier recognition, education of health providers and the community.
“If we had money, we could do a lot more,” he said.
Nevada is unique from other states because of the distances between cities. Bernick believes telehealth could be part of the answer for more rural communities like Pahrump.
“Using the telehealth system, we can in some sense offer the same care as we can here,” said Bernick, who is based in Las Vegas. “The caregiving programs are the same, the only things we have some limitation on are the availability of day care or respite programs.”
Even if patient care in Pahrump equals the level of care available in Las Vegas, support for caregivers cannot with current resources.
According to the Alzheimer’s Association, there were 29,000 people suffering from Alzheimer’s disease in Nevada in 2010, and they expect that number to rise to 35,000 by 2020. Last year there were more than 132,000 caregivers in the state accounting for more than 150 million hours of unpaid care, or roughly $1.8 billion in unpaid care.
Nationwide, the Alzheimer’s Association estimates that the cost of caring for people with Alzheimer’s and dementia will total $200 billion this year, and will increase to $1.1 trillion per year by mid-center on this current path of care.
“It’s going to be just a tremendous cost for us and the system and Nevada needs to be prepared,” Bernick said.
Although Pahrump’s closer to research centers than perhaps other, more remote towns in the state, the drive is still far enough to call for telehealth services, he said.
“Las Vegas doesn’t help you on a day-to-day basis. Pahrump is a good example of an area that can benefit from telehealth services, particularly for follow-ups,” he said.
The Cleveland Clinic’s center has not conducted patient care programs in Pahrump yet, but it does participate in some caregiver programs, including weekly video conferences with lectures from leaders in research. The conferences are held at noon every Wednesday.
Bernick said he just needs to partner with a facility for telehealth, but he’s worried that the funding isn’t there to fully launch the program.
“Telehealth can never happen without some subsidies,” he said. “Although we can pay physicians the same amount as if they see them in person, it doesn’t account for the overhead of paying for the line. It’s a service that I think the state should pitch in to help.”
Distance care could take some convincing, though. Shirley Alloway, the resource development unit manager for state’s Division for Aging Services, worked on the grant for an experimental telehealth Alzheimer’s care program in northern Nevada that ended earlier this year. She said some patients are still getting comfortable with telehealth.
“Some people with the disease are nervous about being on TV, they’re used to being face-to-face,” Alloway said. “They see themselves in the box in the corner then see the doctor talking to them. Sometimes it’s more than they can deal with.”
Through the grant, Bernick went to Reno twice a month to offer telehealth to people in rural communities — far more rural than Pahrump, Alloway said.
More is obviously needed, but at least the need is recognized.
RSVP for all your needs
Jan Lindsay might be an angel sent from heaven. She is the field representative for the Nevada Rural Counties Retired & Senior Volunteer Program, or RSVP.
She coordinates respite care for people like Toni, Vincent and Frank.
Respite care is just that, a respite for caregivers who are forced to care for their loved ones 24 hours a day, seven days a week. When it was discovered that too many caregivers were dying before their Alzheimer’s-suffering loved ones, some bright individual invented respite care to give those exhausted caregivers a break.
It works like this: A volunteer arrives at your home, offers to help with cleaning or laundry or something, as well as watching your loved one while you take a two-, three- or four-hour break. It can literally mean the difference between life and death — but this time for the caregiver.
“The more publicity that we get the better off everyone is because people with the disease don’t see the publicity but their caregiver does. If something is in the newspapers all the time then it prompts the caregivers to call one of these numbers so that at least they can get information,” she said.
Jan’s program is currently understaffed locally — even Toni was stressed on Wednesday because she’d lost the services of a beloved respite caregiver. Lindsay says RSVP needs three volunteers right away to continue providing a decent level of service. Caregivers are typically older than 55 and need not be retired. Almost 100 percent of the people they would assist suffer from dementia.
Funding for RSVP is meager. Right now, for instance, she’s waiting on a check from the county for $12,000. But there’s nothing else like this program around. Combined with the twice-monthly Alzheimer’s Association meetings and it’s all locals have unless they drive to Las Vegas. Besides the local senior center, there are a few retirement homes in Pahrump that cater to the needs of older residents, but when it comes to aid for caregivers and the loved ones of Alzheimer’s sufferers, this is it.
She will be the first to say it — the level of support stinks compared to the level of suffering.
“In Pahrump, all I can say is I see it on a daily basis. And I see more and more of it all the time, some form or other of dementia; there are many forms. Unfortunately, because we have a senior population, we are going to see it more here than perhaps other places,” she said.
Asked whether Pahrump offers an adequate level of services, she said no.
“Right now families are having to go to Las Vegas, in particular the Lou Ruvo Brain Center. There’s an awful lot of research going on and that’s good. The printed information and the videos, that is wonderful. But in Pahrump itself, we have very few medical personnel qualified to even diagnose dementia,” she said.
Lindsay said really only one doctor in Pahrump seems to be qualified to see dementia patients and that’s Dr. Frank Toppo, who she says is probably overworked at this point.
As for legal advice, Lindsay says RSVP gets free legal advice from an attorney in Carson City whose family has been impacted by dementia.
When the need arises, Lindsay forwards the contact numbers of those seeking help to this attorney for help. The senior center also has an attorney who often visits to provide free legal advice.
Until the cavalry arrives, this is the sum of local help.
The trick is to seek help before desperation sets in.
“Unfortunately, Jan tells us that by the time they contact her they are desperate, they are just worn out and desperate,” says Janice Hubbard, who started the Pahrump branch of the Alzheimer’s Association almost five years ago after her husband died.
Barbara Payne, whose husband hasn’t been diagnosed with dementia, but who has otherwise found a home at the support group, says everyone who is concerned with the impact of dementia on their family or their community is encouraged to visit the group.
“I had a friend whose husband was dying and she refused to come to our group because she was afraid she might cry. I convinced her that that was not a problem because everyone here has cried at one time or another. And that is the purpose of this group, for support,” she said.
“I came in here after my husband had some falls. He’s never been diagnosed with Alzheimer’s but I keep coming back because I get support from everyone who is here. I walked in and I told them I have a jar and it is totally empty of my patience. But you know what? Because I’ve been coming for two years, I at least have this much patience,” she said holding up two fingers. “This group, as a support group, not necessarily just for Alzheimer’s, but for older folks who are having difficulty, the people here are huge support.”
Freelance reporter Laura Phelps, staff writer Selwyn Harris and Alzheimer’s Association support group member Diane Parks contributed to this report.
The Pahrump Valley Times will continue to monitor the level of support in Pahrump for elderly residents, particularly those suffering with dementia and Alzheimer’s. Look for updates to this story throughout the next year.