Alzheimer’s Association of Northern Nevada

As I always say:  “There are a number of good people who want elders cared for and protected in Nevada.  Reno is its own unique experience.”

That being said, this post will cover my seven year experience with the Alzheimer’s Association of Northern Nevada.  One thing to grasp off of the bat:  it is a franchised arm of the Association.  What that means?  In my dealings with bringing the local chapter’s fundraising and strong-arming issues to the head of the national group, it provided them with enough wiggle room to distance themselves from the chapter.

And you don’t have to take my word for it.  Here is an excerpt from another individual’s experience:

Dear Alzheimer’s Association Leadership, I am writing to express my serious concern about the current direction the Alzheimer’s Association is heading, and to request that you make immediate changes to be more effective and more responsive to the needs of AD sufferers and their support groups. I am an AD caregiver (caring for my wife) who is very interested in supporting the stated goals of the Association. However, I’ve been reading with concern the news of local chapters seeking independence from the national program. I was even more disturbed to find that Charity Navigator gives the Association one of the lowest ratings I’ve ever seen (and I’ve looked at over 100 charities on that site). My concern is twofold: first, I believe that support for the Association is going to continue to drop (or be withdrawn) as long as your effectiveness ratings remain so abysmally low. Second, I believe it is essential for us to have a strong national program that can guide and focus programs to improve the daily lives of AD sufferers and caregivers — hence, I am saddened by the apparently growing movement away from the Association. Won’t you please take my comments into account and begin searching your hearts as well as your minds for corrective actions that can bring us all back into alignment on the movement to eliminate AD; and more importantly, to comfort those of us who are on the front lines trying to improve the quality of life for AD sufferers that we love and care for. Thank you very much for your consideration.

Sincerely, John Broadwater Williamsburg, Virginia

Here, another insider joins in.

Thanks so much for speaking out. Many chapters were unhappy with the national office in 2000 and left to form the Alzheimer’s Foundation of America: http://www.alzfdn.org. You can read an interesting article about the relationship between the two here: [See article, below.]

I’ve never understood why the national office doesn’t have two priorities: 1. Improving the lives of today’s family caregivers with respite, information and support; and 2. Funding research.

The national office has long held a reputation (as long as I can remember, going back to 1995) of being difficult to work with, territorial and incredibly political. Hopefully, your letter (and the letters that follow yours) will begin to make the needed changes.

Best, Denise Brown Caregiving.com

A Letter from Richard Taylor, Ph.D. – Alzheimer’s Warrior, Author, and Inspiration [as written]

Hello, to few folks surprise, I have been mulling over in my disorganized mind what next to do, where best to go with my issues/concerns with my/our/your National Alzheimer’s Association.

Let’s all stop dancing around the naked emperor

It’s time to stop pretending the National Alzheimer Association is doing what it is supposed to be doing, helping who it is supposed to be helping, spending our money like it is supposed to be spending our money.

It/they/Harry and Angela need our help/suggestions/offers of support. They have, to be kind about it, strayed from leading a movement to championing a narrow unrealistic dream of theirs and their Board of Directors. “Creating a world without Alzheimer’s”

They cannot be all things to all people. They don’t have the money, time or staff. They cannot be the champion of research and the champion of people living with dementia and their caregivers. They don’t have the money, time or staff. They should not expect their local chapters to finically support their 25 yearlong dream quest while at the same time providing services to local area residents living with all forms of dementia. This mandate from National puts local chapters in an awful position – raise lots of money, send 40% of to National – and with what is left over meet the needs of the folks living in your vast geographic area who are dealing with dementia. Educate everyone, support everyone, be everything to everyone – just plan on spending only .60 cents of every dollar your raise. This is absurd!

End of Excerpts

My first dealings with the Alzheimer’s Association of Reno came from my interest in being a sponsor for their annual fundraising event known as The Memory Walk.  Interesting concept for the event, folks soliciting sponsors for miles walked as they gather in a march to honor their loved ones who’ve died from dementia.

The price for a table:  $1500.

Yes, that much for a table at an event with a useful time of two, three hours.

I paid it.  In the small/large community that is Reno the exposure as a new dementia care facility is useful.  And I knew that serving the community in a good way would help in establishing our credibility with the Division of Aging, and those other people who needed to know about us.

Fair to say that for the $1500 other things were promised:  Our logo would be on the local chapter’s website, as well as printed publicity materials … prominence at the event.  Did any of that happen?  No, it didn’t.  But they sure took the money.

As there’s a lot to absorb here, I’ll add some other details in the next post.

 

Until then…

 

It Takes A Pillage

If you have been following this blog, and wanted to know if I’d disappeared.  Well, kinda.  I apologize.

There’s a couple of reasons for this:  One, I’ve been very involved in writing screenplays.  As of late I’ve done well in two major contests.  As screenwriting pays very well and contests are one way of breaking in it was a good use of time.

And, quite honestly, there is no joy in writing about corruption, people being used, thrown away in their golden years.  Who wants to hear it?  And, especially in the small world of Reno, Nevada, is it a good thing to talk about.

Yes, it is.  A visit with my eighty-one year old mother recently convicted me of this.

Mom lives with my sister in Las Vegas, and I took some time to drive down and make repairs on their house.  Seems that Vegas has very hard water that makes for interesting pipes.  They haven’t had the best luck finding a good handyman.

After the repairs were done, I hung out with my mother in the kitchen.  Make no doubt, I’m checking for her fire awareness, how she gets around.  Do I need to worry about fire extinguishers?  Is there any possible danger that I can help circumvent?  That day will come, but as of yet, it isn’t here.  Relieved, we settled into a conversation.

“How’s that neighbor of yours doing?” I asked her.  “You know, the one with leukemia.”

“Dee?  She passed away.”

“That’s too bad.  How’s her husband doing?”  Much of my own life and outlook changed after losing my wife to cancer.

“Her husband?”  Mom shook her head; her teeth flashed from laughter.  “Oh he’s gonna be fine.  He was a Mormon, you know.  Gave it up, but he’ll probably go back.”

“Huh?”

“Oh,” she said.  “You never heard that story.”

 

 

 

 

 

Senior News To Use – Life Stressors and Your Health

Life Stressors Increase Mortality Risk

BARCELONA — Older individuals who have experienced three or more major life stressors — such as loss of a partner, death of a child, or changing residence — are at greater risk of death than people with fewer of these events, researchers said here.

When Femke Rutters, PhD, a postdoctoral fellow at VU University Medical Center in Amsterdam, compared outcomes of people who experienced stressful events with those of people who experienced no life stressors over an average of 15 years, she found no significant difference for those with one or two events, but a 29% increase in the risk of mortality (95% CI 1.01-1.65) if a person experienced three life stressors, and a 51% increased risk of mortality (95% CI 1.15-1.99) if a person experienced more than three events.

“Having three or more stressful life events is associated with a significantly increased risk for all-cause mortality, cardiovascular mortality, and cancer mortality in our elderly population-based cohort,” Rutters said at her poster discussion presentation during the annual meeting of the

She and her colleagues attempted to prove their hypothesis by utilizing data accrued in the population-based <a “=”” href=”http://www.medpagetoday.com/MeetingCoverage/EASD/” target=”_blank”>European Association for the Study of Diabetes.

The life stressors she included in her study were:

  • Serious illness of a child
  • Problems with children
  • Death of a child
  • Problems with a partner
  • Death of a partner
  • Death of a relative
  • Financial problems
  • Death of a friend
  • Moving to a new home
  • Ending an intense relationship

 

She told MedPage Today, “Everything you experience as stress is psychosocial stress, whether it is real or imaginary. Real might be being driven over by a bus, or imaginary might be being in front of an audience and giving a presentation. Our hypothesis is that when psychosocial stress is chronic people develop changes in their lifestyle which then leads to developing chronic metabolic diseases like obesity, type 2 diabetes and cardiovascular disease. And with these diseases people have a higher risk of dying.”

She and her colleagues attempted to prove their hypothesis by utilizing data accrued in the population-based Hoorn study. Rutters explained that most studies that scrutinized stressors in life tended to use patient-based cohorts; the Hoorn study gave the researchers an opportunity to use a population-based cohort.

In the study, the researchers included 2,385 subjects; 46% were male and the mean age at baseline was 62 years. The average follow-up was 15 years. During that period, Rutters reported that 834 of the subjects died, including 239 who died of cancer and 235 who succumbed to cardiovascular disease.

When they looked at life stressors and mortality, they found that 510 persons said they experienced none of the 10 major life events, and over the course of the follow-up, 159 of them died. Of the 853 people who listed one major life event, 276 died — a crude nonsignificant 4% increased risk of all-cause mortality compared with those having no life stressors.

Of the 588 individuals who experienced two life stressors, 213 died, translating to a crude 21% increased risk that also failed to achieve statistical significance. The researchers identified 257 people who experienced three life stressors, and 101 of them died, a crude 50% increase in all-cause mortality that was significant. They also reported that 177 persons experienced four or more life events, and 78 of that group died, translating to a crude all-cause mortality increase was 60% higher than those with no life stressors, also significant.

When the researchers adjusted for age and sex, the significant findings held for those with three or more events. When the figures were also adjusted for glycemic parameters, type 2 diabetes prevalence, body mass index, hypertension and cardiovascular disease prevalence, significance remained for those with four or more life stressor events — a 38% increased risk (95% CI 1.0-1.8), Rutters said.

“We think that our study shows that most people can handle one or two life stressors, but the accumulation of events is more than they can handle, and that manifests itself in chronic disease and in mortality,” she said.

“What we see here is that the brain is connected to the rest of the body, and what impacts the brain can have an effect on disease states,” said Norbert Hermanns, PhD, professor of psychology at the University of Bamberg in Germany.

Hermanns, who moderated the poster session, told MedPage Today, “This is an interesting study that supports a lot of what we believe about how life stressors can influence overall health.”

Kickbacks 101

She walked in with her husband Jerry.  Jerry had worked for the State of Nevada.  A sharp guy at one time; he’d dealt with computers, programs.  All heady stuff.  Lots of stress in his job; I didn’t ask why or how.  Stress is rampant, kinda like the reality show we’ve all gotta watch, because it’s our show.

Nice lady, Gayle, but worry had pressed its mark in her face.  When she smiled, which was rarely, it seemed as if her body had forgotten those muscles.

“Jerry had a stroke,” she said.  “How many I don’t know.  The other places don’t want him.”

I knew of “the other places.”  The County’s Daybreak, Share the Day, and the Continuum.

“Seems odd,” I said.  “He seems to be a good enough guy.”  I looked at Jerry.  “You’re a good guy, ain’t ya?”

He shrugged.

“We fight at home,” said Gayle.

It was an early introduction to the caregiving world, at least those of other people.  Here was a woman who’d married a man in the prime of his life.  He’s working his ass off for her, for him, for a future.  It’s not easy; one day a blood vessel pops, and this baby is in a bad place.  Everything changes.  You want love to solve it all, and it does for a while.  Then fatigue sets in, your back wrenches, the bathroom becomes a sanctuary.

I’d felt this with my late wife.  You want them to live, you want normal.

And it just doesn’t happen.  “What places did you try?”

Gayle sighed.  “The Continuum doesn’t want him.  I won’t even look at Share the Day.”

My wife and I exchanged looks.  We’d visited that place.  I thought it was more like a doll house, cozy and creepy at the same time, but why comment further?  Not a great conversation starter.  No problem – Gayle pressed on.

“The woman who owns that place,” she continued, “I knew her when she was a kid.  Nuts.  When it came time to put her grandmother in a home, you know what she did?”

I shook my head.  “What?”

“She demanded a kickback.”

I was surprised.

I shouldn’t have been.

KICKBACKS (Part II Updatd August 21st)

It’s a different life.  Have you ever had one?  Gone through a divorce, illness, a major move, birth, marriage…?

Death?

Patty battled like a goddess, but the cancer won.

In this blog/book, I pick up the story of Reno’s elder corruption five years after Patty passes away.  I am not yet married, but am dating a wonderful woman, Kia, who has also lost a husband to cancer.  We have opened a center for the care of people with dementia and Alzheimer’s disease.

There is a need in Reno as only a few places exist for this purpose:  The CONtinuum, and Share The Day, run by a woman named Tammy.

The road to our center had been serendipitous.  The burden of caregiving had permeated my core since my days with Patty.  Also, Kia’s parents were into the zone where future issues had to be addressed.  We’d checked out the Adult Day Care options in Reno with thoughts of relocating them in this area.

Our research led us to this opinion:  We didn’t care for the institutional nature of the CONtinuum, nor the Barbie-doll atmosphere of Share the Day.

I believed we could do better.

There was a need, at least for a place which didn’t appear to be a warehouse.  No, the Reno options didn’t appear as something out of a Charles Dickens novel, but anyone with even a small eye for detail could tell there was something going on.  For example, why were the Adult Day Care options only in the seedier parts of town, with little to view but another strip mall or homeless people trudging by?  Why was it not permissible to “drop in”?  Meetings were structured as appointments with no wiggle room on either side of the clock.  Were the clients that uncontrollable, or was there something else going on?  One enters the world of elder care and it seems like a secret society.

Well, it is.

It took a year for us to get our first knock on the door.  One year, and that was a referral from a counselor who is married to a minister.  Mrs. C has her own stories of Washoe County corruption, and as I haven’t asked permission to repeat those stories, I won’t.

Our first, client, however, had known an adult day care owner.  And she had stories.  The story of our first dealing with kickbacks resumes in my next post.

Thanks to all of you who keep up in this blog.  Your comments are appreciated.

 

 

 

 

 

KICKBACKS

I took a break from this blog for a few reasons.  One, I was developing an opportunity for one of my screenplays to be considered by a major studio.  The other was to garner resources for some of the stories in this blog/book.  Lastly, there was also a time buffer element  By that I mean it’s not popular to speak and write about this subject, especially in the eyes of the caregiving community.  I had concerns that some might come after me, and not to re-butt what I write, but in a different manner, by trying to trash my reputation in the other endeavors I do in this town.

While I’m not concerned about that as much, there was a side benefit to my time off.  In the other businesses I am part of, luck of the draw put me in the face of many in the government community that handles the money and the programs that help seniors.  This included Medicare and Medicaid.  The word coming down is that everybody in the Fed/State end of senior care in this state knows it’s crooked, but don’t see anything getting done.  The good people will leave the field, or move on to a new state.

Yes, I suppose there’s corruption issues all over.  Government trust is pretty low right now.  My experience has led me to the opinion that Nevada, and specifically, Reno is unique.  Reno is so close to Carson City, the capitol and hub of the state, that the relationships between Reno and Carson are more evolved than Vegas and Carson.  And Vegas is where the money is.  One can’t ignore the fact that Las Vegas has a good influx of Californians.  These folks have a sense of how things are supposed to work and how they should be run.  One of the popular bumper stickers in Reno is:  I Don’t Care How They Do It In California.

Reno is getting quite in influx of people from the Bay area.  Old money is meeting new money.  Things are going to change here.  I’m sure this blog will be appreciated at some point in the future.

The short and sweet of my interactions with people in the know is that Nevada is scaling down its Medicaid, having private contractors deal directly with the Feds.  Sounds great, but now it’s state people who are giving referrals to the businesses they helped create.

No fooling.  Nevada’s a great place.  Until you become vulnerable, that is.  We used to have Mafia.  At least the Mafia had a code.

Back On Track – Some Past and Recent History

I have been away from my own blog for too long.  I want to explain.

Some screenwriting opportunities had come up, and while things are in the works, Hollywood works at its own time frame.  Recently the Goldwyn Studios looked at a faith based screenplay.  I’ve learned from my time in Hollywood that when things heat up you have to give it the time.  If it develops I will keep my posts here active.  I write, screenplays are the chosen media at this time, but the truth here is important.  Very important.

Another thing.  I’d made efforts to try and get some confirms within the state of Nevada.  Guess what?  Not so eager over there.

Why?

Because the system is corrrupt.  It has operated in the dark, and will continue to do so.  In the past few months here’s what I’ve had to deal with.

A couple of years back, the justice system went after a local realtor for “Abuse of an Elder.”  In a word, financial abuse.  She’s serving time in prison.  I’ve gone through the court transcripts and even for Reno, it’s a wild ride.

How about this:  A sitting judge with a voo-doo doll, using it behind the bench … during the case?  I wouldn’t believe it myself if I hadn’t talked to someone deep into the case.

So, you’re asking yourself:  Huh?  He says what?  How could that happen?

Well, a few years back the county, and the powers that be were embarrassed by one of their own.  A former public guardian had decided to move on from public service and establish her own private guardianship business.  In this business, it’s not unusual for someone empowered with a wealthy, vulnerable person’s money to charge a hundred bucks an hour for their services — and that includes going for a hamburger.

Angela, the former guardian, embezzled 350 thousand from a few of her clients.  For her gambling, for drugs.  Because she could do it and she decided that she would.

She’s serving time.  The county was embarrassed.

One has to know the system, be inside it to connect the dots.  There are too many people involved in keeping Reno’s image clean for the sake of … well, their own embarrassment I suppose.

Example:  In the news recently, California claims that Reno ships off its mentally ill to other states.  The governor denied it.  If one knows the system here, no surprise.  Does anyone care?  Well, California did.  Probably more for economics than humanitarian reasons.

People flock to Nevada, and Reno specifically, for its climate, and lack of a state income tax.  Retirement looks good here.  Funny thing, age and decline are going to follow.  Here’s a hard truth — we’re all going to die.  We hope it’s painless, that we die in our sleep and our loved ones heal up and life goes on.

Doesn’t always work that way.

So … having taken a break from the live blogging, I will cruise through many vignettes, true to life stories of dealing with seniors in Reno.  It’s not going to be pretty.  It will be informative.  Also, I will be posting a link on the White House website for a national program to deal with elder care.  I have some ideas.

Thanks to those of you who didn’t give up on me.  Some of you e-mail me behind the scenes.  And some are public.  I’ve changed my settings so that those of you who have commented before have to get approval for the comments to be public.  The settings before had been set for auto-pilot approval if you commented more than once.

Talk to you soon…

What You Are Is … what you are

Some hard facts before an obvious question is asked.  Firstly, the older one gets, the more likely they are to acquire Alzheimer’s disease.  And that’s just normal aging, nothing that includes using/abusing alcohol, environmental conditions, or head trauma.  Alzheimer’s is being studied in earnest for a few reasons;  a huge numbers of aging baby boomers, and for the money that will bring.  So the question is:

Do you care?

That’s just the practical side of it.  I want to go a step further, borrow from personal stories.      Please know that I’ll likely add to this post later.  It’s been a few days, lots going on, but I wanted to keep the pages going.

In our day center, we had seven years worth of people coming through our doors.  Dementia developed from many conditions:  stroke, alcohol, aging, combinations of all of these and more.  (These were the most common).

Dementia, (of which Alzheimer’s is only one of many classifications) isn’t judicious about what part of the brain it affects.  Let’s say it messes with your memory; you don’t remember that your spouse has died.  In your world, they’re alive, but they’re not around.

They never show up.

Something must be wrong, you’ve hurt them.  Perhaps they’re out somewhere bleeding.  Thoughts, fears, rush into your head.  Where the hell are they?  You love them, want them here!  NOW!!!

A grey shadow flutters across the window — maybe it’s them.  No.

A bird calls, what or who disturbed it?  Them?  No.

Pause a moment, consider that as your reality.

Fear floods your brain.

Your inner voice races.

More voices join in.

And … and …

You are what you are.  Scared to death.

No escape.

No exit.

You see a head in a box … it’s yours.

 

Dollars For Docs – Of Interest To Seniors

A public resource for checking out if your doctor or institution is receiving money from drug companies is available.  A quick search of Renown and some geriatric doctors in the Reno area provided these results:

Name / Payee City State Company Year Category Amount
RENOWN REGIONAL MEDICAL CENTER Reno Nev. AstraZeneca 2011 Research $2,000
RENOWN REGIONAL MEDICAL CENTER Reno Nev. AstraZeneca 2012 Research $13,236
ERIC DRUMMER (Payee: RENOWN REGIONAL MEDICAL CENTER) RENO Nev. Eli Lilly 2011 Research $13,675
ERIC DRUMMER (Payee: RENOWN REGIONAL MEDICAL CENTER) RENO Nev. Eli Lilly 2012 Research $22,718
Name / Payee City State Company Year Category Amount
Deborah Hughes Las Vegas Nev. Valeant 2011 Meals $0-100
Deborah Hughes Las Vegas Nev. Valeant 2011 Meals $0-100
Deborah Hughes Las Vegas Nev. Valeant 2012 Meals $0-100
Deborah Hughes Las Vegas Nev. Valeant 2012 Meals $0-100
DEBORAH MARTZ LAS VEGAS Nev. Eli Lilly 2010 Other $17,400
DEBORAH MARTZ LAS VEGAS Nev. Eli Lilly 2010 Travel $3,631
DEBORAH MARTZ LAS VEGAS Nev. Eli Lilly 2011 Other $600
DEBORAH MARTZ LAS VEGAS Nev. Eli Lilly 2011 Consulting $14,250
DEBORAH MARTZ LAS VEGAS Nev. Eli Lilly 2011 Travel $3,373
DEBORAH S BAKER RENO Nev. Pfizer 2010 Meals $284
DEBORAH WALKER FREDERICKS RENO Nev. Novartis 2010-11 Speaking $750

From the article:  (Susan Abram – Daily News)  Speaking about diseases for a drug company has become a lucrative moonlighting gig for those in the medical profession locally and across the nation.  But while the practice of speaking is not illegal, it raises the question of conflict of interest: Is the drug being given to you because you need it, or because the doctor writing out the prescription is paid by Big Pharma?

“Pharmaceutical companies used to take doctors to dinner, but that was banned years ago,” said Dr. Arthur Chanzel Jeng, an infection control specialist at UCLA-Olive View Medical Center in Sylmar.  “Now they must provide some educational content.”

I will post the link for the search at a later time, or am happy to answer your e-mails.

Secrets From A Good Lady From the Nevada Division Of Aging Services

As always, I want to say that good/bad people and systems exist everywhere.  Reno has a unique relationship with Carson City, (Nevada’s Capitol), which makes it easier for bad social service systems to maintain legitimacy.

What follows in bold type is an excerpt of an e-mail.  It comes from a high-ranking member of the Nevada Division of Aging Services.  She was going through her own cancer battle, something close to my heart.  We developed a deep friendship from understanding this disease, and she has been good enough to allow me share some of her e-mail’s content:

Tony,

Just wanted to send a heartfelt thank you for spending your precious time and spirituality with me, for your kindness and empathy. Perhaps even more so than my daughter and best friend, I think you understand why I must die at home, why I cannot give up my house and go into one of those places.

I am fortunate that I receive both PERS and SSD. I can fill in gaps that others, especially those on SSI, cannot.

I don’t think I’ve told you that I was one of the people responsible for getting the medicaid waivers into place. And Charlotte Crawford just sat on them.

During the 2001 legislative session, Sen. Rawson–a good man, one of the last of what I call the old school Republicans, defeated by neo-con Beers in 2005 (?)–shredded Charlotte. She just lied and was caught in her lies. The regulations were in place, the funding had been appropriated during the 1999 session, and Charlotte did nothing. Meanwhile, people who could have stayed in their homes were forced into SNFs. Unconscionable. Charlotte took me off the legislative committee, but Sen. Rawson still called me to see what was going on.

2001 was the last great year for Nevada social services.. 

It helps greatly to have these words from an agency insider for the insight it provides.  I do receive e-mails from other people in the system, but they are still employed by the state of Nevada.  Makes it difficult, but I respect anonymity.  As I’ve said before, e-mails from the state are parsed out like Manna from heaven.  I recently left as co-chair of the Council for Adult Day Care, and didn’t even receive a “thank you.”  I’m sure they were happy to have a burr in the saddle out of there.  Sure as heck, they didn’t want to acknowledge anything by e-mail … too much of a paper trail.

Looking at a few things that stand out to me, and not those familiar with this terminology, SNFs is Skilled Nursing Facility.  A person on Medicare is entitled to the highest level of care if they’ve had a three day hospital stay, and show improvement.  A doctor, of course, has to approve it.  What she is saying here is that no way did she want to end up in a skilled nursing facility in Reno.  She’s seen what happens there, and this comes from a member of the Division of Aging staff!

An insider tip for you:  A lot of skilled nursing also double as Medicaid residential living.  A facility gets in the range of $1800 per month from the government when they house someone (seniors) on the Medicaid program.  On Medicare, (ending in care, not aid), they get about $8000 per bed.

Is it clear enough to see that Medicare would be greatly preferred over Medicaid?  And, if a facility houses many seniors at the $1800 a month rate, is it understandable what the potential for neglect can be?

Please digest this information, ask questions as you wish.  I’ll work to give a cogent response.