“It’s All About Living and Dying Well” An interview with Joy Loverde

30 Aug
August 30, 2013


tcepMB      We’ve known each other for more than 20 years and asked to describe you, the one word that comes to mind is “advocate,”  especially when related to eldercare. What’s the genesis of this advocacy?

JL        When I was only 14-years-old and in high school, I made a commitment to myself that I would visit a nursing home on Thanksgiving. I am still haunted by that experience. I think it’s fair to say that I knew that Thanksgiving what I wanted to do with my life.

MB      What did “wanted to do” look like to that young girl of 14?

JL      Influencing family members to start talking to each other about growing old and eventually facing death together.

MB    You must have been a big hit at parties.

JL      I’ve always been respectful of the difference between proselytising and advocacy.

MB    What was that Thanksgiving day like? In other words, what moved you to the degree it did?

JL      I can still smell the urine in the hallways that day, and see the terror and hopelessness in the eyes of the residents.

MB    That Thanksgiving day was roughly 50 years ago. Would you say your advocacy has been successful?

JL    If you mean, “Does the conversation about living and dying well continue?” the answer is yes, now more than ever.

MB  How would you define your role as an eldercare advocate?

JL     I help consumers, employers, and organizations sort fact from fiction, prioritize their issues and guide them to long-term care professionals, such as geriatricians and elder law attorneys, who can continue the conversation..

MB   How much does your award-winning book help in this process?

JL   The Complete Eldercare Planner, allows me to personalize the experience of an intimate conversation about life and death at the reader’s convenience.

MB  Is there a need to certify what you do professionally, which is to say, do you see a benefit to offering this process as a college-based curriculum?

JL   Who would take the course?

MB  I suppose those brave and compassionate souls that also spent their thanksgiving holiday in nursing homes.

JL    [laughs] We’re talking about a two or three-person class, but I imagine anything’s possible.

Life 101………….. Feb 20 1950 – August 22, 2013 (click on image)

22 Aug
August 22, 2013



12 Aug
August 12, 2013



I had a discussion with two friends last night. Two of the most loving, kind and authentic human beings I’ve ever met. When I used the term “turning the stream of compassion within,” they both bristled.


Rather than skirt the issue, and try and second-guess them with meaningless questions, I asked but one: “Why the problem with self-love?” (BTW, I’ve always felt that the importance placed on loving our neighbors as ourselves was meant for our benefit — not our neighbors).


Quite a bit of dialogue followed, and the theme that emerged from their side of the fence was that our culture spends quite a bit of time loving itself, thank you. A bit more emphasis on the “other guy” was what we needed.

Under normal circumstances, I’d relish a bit of the ol’ “I’m right, you’re not,” over a cup of coffee and a cigarette, but I quit both smoking and debating to hear myself talk, twenty years ago.



Besides, lecturing on love to this couple was the equivalent of trying to impress Al Einstein with my grasp of sub-atomic particles.(This reminds me of the definition of chutzpah: a man walks into a bookstore and says: “I’d like a book on chutzpah and I’d like you to pay for it.”)


The outcome? A clear understanding that you can talk about honey, or actually reach in, grab a handful of the wax-filled golden nectar, all the while, watchin’ the bees dance.


10 Aug
August 10, 2013

JULY, 2009

I am physically and emotionally exhausted as I write these words on a notepad, sitting on a hospital bed. Below me, a black rubber mattress amplifies the almost unbearable heat of this steamy July evening, as sweat pours off my face onto my glasses, and I must pause every minute or two to wipe the warm broth from an ancient pair of bifocals held together with scotch tape. I hope to complete my thoughts before the tape on my glasses unravels. It will be close.


As alcoholics and heroin, methamphetamine, and crack cocaine addicts pace the hallway just ten feet from where I’m sitting, the drape around my bed is drawn and I am acutely aware of any shadows or sounds that could indicate the presence of a nurse or aide nearby. If my notebook is discovered, I could face disciplinary action, or even tossed out of the program.


Under normal circumstances, quitting this program and going home would be my first choice right about now, but these are not normal circumstances. If I cannot complete this regimen, I am locked out of the assisted living facility where I have resided for the last six years.


This is the third night I will toss and turn in the sauna that is room 6419 in the Detox Unit of Saint Peter’s Addiction Recovery Center (SPARC) in Albany, New York — an experience this author believes exists solely in the bowels of hell.


Part One


Xanax and Valium belong to a family of drugs known as benzodiazepines. Initially created as a smooth muscle relaxants, they soon found great favor in the medical community as anxiolytics. (anti-anxiety) Both drugs are highly effective and have an impressive safety profile. In New York State they are classified as “Controlled Substances,” and require a special three-part prescription form.
In the summer of 2009, after taking Xanax for nearly 15 years to help combat Parkinson’s-related anxiety, my primary care physician suddenly refused to write anymore prescriptions for the drug. He also suggested that I admit myself into the addiction recovery center (SPARC), where – as director – he would personally see to it that I received “the best care possible.”
I made a compromise: I would admit myself through the ER to a medical surgical ward, but clearly stated I was not interested in the drug rehabilitation unit. And that’s exactly what I did. Two days later I was informed that I was being transferred to the drug rehab unit. I was also told that this offer was nonnegotiable: either I complete the drug rehab program or my assisted-living facility would not let me return home. Just like that.
Within hours I was admitted to the drug rehabilitation unit, strip-searched, and given a bed. Once  “processed,” and contrary to everything they teach you about HIPAA, from that moment forward, your medical records will always carry a diagnostic entry that reflects your stay at the

Hotel California: “Relax said the night-man, we are programmed to receive; you can checkout any time you’d like, but you can never leave.”  

Upjohn, the manufacturer of the drug strongly suggests a titration schedule that slowly and gradually brings the patient safely off the drug. In my case, the titration schedule – according to Upjohn – would consist of a minimum withdrawal period of 21 days.

They gave me a mild sedative (Librium) for three days, then announced my withdrawal program was “officially over” and I was being discharged to a halfway house, where I would stay for the next 27 days. And oh, by the way, this too was nonnegotiable. If I failed to stay the full 27 days, the director of my assisted-living facility said bluntly I would not be welcomed back.

This time, I stood my ground. I refused to go to the halfway house. Instead, I called my former tennis partner, a well-respected attorney in Albany, and explained the situation.

He made one phone call to my assisted-living facility and within two hours of vehicle from the facility was dispatched to pick me up and bring me back to the facility.

Within an hour of returning to the facility, a med tech came to my room to deliver my scheduled medication. I remember the moment vividly because I was hallucinating.

The “three-day cure” had initiated my decent into hell.

Part Two

From that moment forward, things went from bad to ‘worst case scenario.’

I was actively hallucinating, terrified of leaving my room and was taken by ambulance on at least ten occasions to local area hospitals.
On one of my myriad trips to local Emergency Rooms – and without my knowledge – a physician wrote a prescription for a drug used to control Parkinson’s. Known side effects of the medication include:
difficulty remembering or concentrating


During the next six months, I was admitted to seven different hospitals, each one more brutal than the last – all the time unaware that this medication-induced nightmare could have been reversed if I’d only had an advocate and a medication audit.


It should also be noted that it was during these terrifying months that I was formally ejected from my assisted living facility.


In the final analysis, it took a near-death experience, and the love and devotion of my sister and brother-in-law to save my life as I continued to spiral downward.


As a patient in the psychiatric ward of a hospital in Schenectady, New York, I was beaten unconscious in the shower by three aides, then watched from a remote vantage point as they rushed me to the Intensive Care Unit with two pulmonary embolisms. I remember the doctors saying it was a close call.


Shortly after that, my sister and brother-in-law, who lived in northeastern Pennsylvania, found an assisted living facility near their home, and personally packed up everything I owned and moved it to an assisted living facility, Sacred Heart Senior Living in Center Valley, Pennsylvania.

 To Be Continued . . .








26 Jul
July 26, 2013



FRONTLINE and ProPublica Present

Life and Death in Assisted Living

Tuesday, July 30, 2013, at 10 p.m. on PBS


www.facebook.com/frontline | Twitter: @frontlinepbs #frontlinepbs

With America’s population of seniors growing faster and living longer than ever before, more and more families are turning to assisted living facilities to help their loved ones age in comfort and safety.

But are some in the loosely regulated, multibillion-dollar assisted living industry putting the lives of those loved ones at risk?

FRONTLINE and ProPublica explore that question in Life and Death in Assisted Living, a yearlong investigation premiering Tuesday, July 30, at 10 p.m. on PBS (check local listings).

From the Texas assisted living resident who froze to death on Christmas morning to the Hall of Fame football player who drank unsecured toxic dishwashing liquid and died 11 days later, this major investigation raises questions about fatal lapses in care and a quest for profits at one of America’s best known assisted living companies.

“One of our interview subjects told us, ‘Assisted living is the rock America doesn’t want to look under,'” says FRONTLINE correspondent and ProPublica reporter A.C. Thompson.

“It’s one of the most important and difficult decisions anyone can make: Who should we trust with the care of our aging parents?” Thompson says. “But again and again, the families we spoke with described struggling to find the facts they need to make informed choices about the care of their loved ones.”

As FRONTLINE and ProPublica report, the once-promising concept of assisted living took shape two decades ago, an earnest effort to create an alternative to nursing homes for America’s aging population.

Today, nearly 750,000 people live in assisted living facilities across the country. National for-profit chains, concerned both about caring for their residents and pleasing their shareholders, have come to dominate the industry. Standards for care and training—and even definitions for the term “assisted living”—vary from state to state. Assisted living facilities, unlike nursing homes, are not regulated by the federal government. Meanwhile, those winding up in assisted living, year after year, are sicker and more frail, and many of them are afflicted with dementia.

Case in point: Emeritus Senior Living, the country’s largest assisted living operator and one of its largest dementia care providers. As Life and Death in Assisted Living reports, Emeritus has the ability to house some 37,000 elderly Americans in more than 400 facilities across the country. Wall Street likes its cash flow. Its top executives have made millions. The company likes the country’s demographic trends—elderly Americans in poor health willing to spend tens of thousands of dollars for the chance at safety and care. Indeed, Emeritus holds itself out as the industry leader, one eager to expand further, even internationally.

But in some states, regulators have cited the company in the deaths of residents. Other officials have regularly found the company’s facilities to be understaffed and their employees to be inadequately trained. Some current and former executives say the push to fill facilities and maximize revenues has left staff overwhelmed and the care of residents endangered.

“There are, of course, skilled and dedicated individual caregivers working in the assisted living industry—professionals who are absolutely committed to providing our parents and grandparents with the best possible care,” Thompson says. “But Emeritus’ history— its explosive growth, its move to take in more and more residents with greater and greater health problems, its desire to reward investors—makes for a perfect study of what’s taking place in this rapidly expanding corner of the country’s health care business.”

On the same day that Life and Death in Assisted Living premieres on FRONTLINE, ProPublica will publish a text investigation about the assisted living business.

“This investigation,” Thompson says, “adds a new dimension to conversations about the best place for Mom and Dad.”


Life and Death in Assisted Living is a FRONTLINE production with Yellow River Productions in partnership with ProPublica. The producer is Carl Byker. The co-producer is A.C. Thompson. The writers are Carl Byker and A.C. Thompson. The correspondent is A.C. Thompson. The deputy executive producer of FRONTLINE is Raney Aronson-Rath. The executive producer of FRONTLINE is David Fanning.


FRONTLINE explores the issues of our times through powerful investigative storytelling. FRONTLINE is produced by WGBH Boston and is broadcast nationwide on PBS. Funding for FRONTLINE is provided through the support of PBS viewers and by the Corporation for Public Broadcasting. Major funding for FRONTLINE is provided by The John D. and Catherine T. MacArthur Foundation. Additional funding is provided by the Park Foundation and by the FRONTLINE Journalism Fund. FRONTLINE is closed-captioned for deaf and hard-of-hearing viewersFRONTLINE AND PROPUBLICA INVESTIGATE ASSISTED LIVING IN AMERICA

The Clean Slate

12 Jul
July 12, 2013

chalkThomas Richard Delancey was born in Portland Oregon on a July morning in 1945, the only child of two physicians. Although his parents had always hoped he would attend medical school, Tom would travel a different road. Shortly after graduating with his Bachelor’s Degree in 1966, he was drafted into the Army as a Second Lieutenant, and three days before his 22nd birthday, boarded an Army transport for the 10,000 mile flight that would formally introduce him to jungles of Vietnam.

Eleven days later, on a rainy Saturday afternoon, Tom’s parents received word that he had been killed during a mortar attack on his base compound. His father, Richard, badly shaken by the death of his only child, took a leave of absence from his medical practice and for the next eight years rarely left his home, anesthetized within a cocoon of despair and alcohol. He divorced his wife in 1970.

In 1976 Richard was hospitalized with prostate cancer. The night before his surgery was scheduled he had a visit from the surgeon. David Cohen, a former colleague and one of his closest friends. “As you know, Richard,” David said, “the pathology report was good. Your biopsy revealed a small, encapsulated tumor with no evidence of metastasis. And normal circumstances both the surgery and recovery would be uneventful.”

Then David leaned over and looked into Richard’s eyes. “But these are not normal circumstances,” he said. “Personally, I don’t think you’ll make it off the table.”

Richard was stunned. “Why on earth would you say such a thing?” he shouted angrily. If this is your idea of humor, I think it is ill timed and in very poor taste. “What exactly do you call this macabre bedside manner?” he snarled.

David slowly stood up and said, “I call it the truth, Richard. You have squandered the last decade on self pity and anger, and in the process, turned your back on everything that gave your life meaning: your wife, your practice, and your Creator, to name only three,” In short, ” he continued. “you didn’t lose your will to live – you simply gave it away.” Then he carefully reviewed the entries in Tom’s medical chart and prepared to leave. “The good news,” he said, as he walked towards the door, “is that you have 14 hours to reclaim it.”

That night, Richard confronted his demons, but after a decade of self hatred and despair, he was unable to find the forgiveness and self compassion he needed to release them – as hard as he tried, he could not surrender the pain of his past. At 3:00 AM, a tired and beaten man, he closed his eyes and began to weep. It was during these lonely hours that he suddenly felt a hand on his shoulder. He looked up to find David standing over his bed.

“What time is it?” asked Richard. “4:14 AM,” David replied, “and yes, I realize how late it is, but I wanted to share something with you.” David then placed a small chalkboard, two pieces of colored chalk and an eraser on Richard’s bedside table.

“My father gave me this chalkboard when I was eight years old,” David said quietly. “Each night, after saying my bedtime prayers, my father would bring the chalkboard into my room. He would then ask me to write the most important things that happened to me that day on the slate.” “He told me it didn’t matter if the events were ‘good’ or ‘bad’ and then sat patiently while I wrote them down. Then he would hand me an eraser, and I would erase everything I had just written.”

“Now son, when you wake up in the morning,’ he would say, ‘you start the day with a clean slate. No past or future concerns, just the miracle of the next 24 hours.”

“But what should I do with it?” asked Richard. David said nothing. He just gave Richard a hug, quietly closed the door to his room, and headed to the nurse’s station to review his charts.

Later that morning, after successfully removing his tumor, David helped the post-op team bring Richard back to his room.. While the team was transferring the patient back into his bed, David noticed his chalkboard sitting on the night stand. But the two six inch pieces of chalk that he had left earlier that morning were now only small nubs, and the eraser was caked with chalk.

The chalkboard had proved to be the turning point in Richard’s life. Eight months later he fell in love and married one of the nurses who had cared for him in the hospital. He also returned to medicine. No, not to his gastroenterology practice, the specialty he had trained for. Instead he decided he would pursue psychiatry.

Today, Richard is a board-certified psychiatrist – a prominent therapist with one of the longest patient waiting lists in San Francisco. He and his wife are also the proud parents of a new daughter.

If you ask Richard why he is one of the most sought-after psychiatrists in the Bay Area, and what is so unique about his psychotherapeutic technique, you will discover that he is actually quite modest about his success.

There’s nothing very mysterious about what I do, ” he will tell you, “I simply start each session by handing my patient a chalkboard.”

copyright (c) 2001

Martin Bayne


Never,NEVER Give up.

10 Jul
July 10, 2013 YouTube Preview Image


07 Jul
July 7, 2013


Whenever I’m asked how I measure friendship, I recount the following story:

Roughly ten years ago, there was a Nor’easter that dumped seven feet of snow on the upstate New York town where I lived. The storm was a particularly powerful one – officials closed most of the NY State Thruway at midnight and drivers in the path of the storm were warned to seek shelter and stay off the roads!

I awoke at 3:00 that morning in acute intestinal and colonic distress. In short, I couldn’t move my bowels and the pain was increasing exponentially—I was doubled over when, as a last resort, I decided to call Bobbie Bowden, a colleague and friend.

Despite the weather and the hour, she answered the phone as she usually did—pleasantly upbeat . . .and said when she heard my strained voice, ”Marty, what’s wrong?”

After describing the problem she said, “Sounds to me like you need an enema. I’ll be right over.”

She then quickly shoveled an ungodly amount of snow from her driveway, grabbed her black Labrador and crossed her fingers while turning the starter on her ancient Volkswagen van. It started!

The fifteen-mile journey itself was uneventful and she arrived and returned home unscathed.

*** The rest of the story has been redacted due to HIPAA restrictions. Suffice it to say, everything came out just fine.


I am a fortunate man, blessed by the gods. I recently met a woman, Jackie Pinkowitz. Her capacity to love is greater than any human being I’ve ever met on my 63-year-old journey. To know her is to experience a dynamic that is life affirming far beyond what most of us are used to or settle for.

She and her husband, Lon (an amazing man in his own right). lived through the paralysis of grief when their young son was killed in a freak accident. Yet, with indefatigable determination, they transformed the unthinkable pain of their son’s death into a symphony of activism,compassion and joy now experienced by every life she and Lon touch.  Jackie and Lon — I love you  both.

More on Jackie later. I am exhausted. The therapy sessions at the new skilled nursing center I live at can be very tiring.

A day in the life of Jackie Pinkowitz

Jackie Pinkowitz,M.Ed.

Chair, CCAL-Advancing Person-Centered Living

Vice-Chair, Center for Excellence in Assisted Living

Leadership Team – National Dementia Initiative

Instructor, Prof. Cont. Ed., Rutgers University School of Social Work, Gerontology Program



“All She Wants Is Your Blood”

27 Jun
June 27, 2013


“”At first, the soliloquy  was muted, almost a whisper. As 11:00 pm came and went, and the wall clock’s small hand pushed its cohort toward midnight with the determination of Sisyphus, the speaker picked up the pace . . .his  larynx now pounding out the words like a finely-tuned Formula-One engine.

Soon he was shouting a litany of female names, peppered with the occasional “Bill” and “Serg.”

As time grinded forward with the speed of growing mushrooms, the timbre and urgency of the voice became demanding and cruel. “GINA!” he yelled, “Why did you run away?”


Last night, from 9:00 pm to 6:00 am, I experienced what I imagine a nine-hour rollercoaster ride in hell would be like, performed simultaneously with an exorcism.

In other words, I had my first, formal introduction to Alzheimer’s–no, not as a patient, not even as a caregiver, just as an observer/onlooker.

As some of you already know, I was recently admitted to a skilled nursing facility for an indeterminate period of rehabilitation. (A combination of Parkinson’s meds, sporadic bouts of depression, confinement to a wheel chair and myriad other factors, had created a long-standing battle with morbid obesity; and I was losing.)

I will freely admit the prospect of leaving the simple, private comfort of my 400 sq. feet of assisted living and trading down to the roommate mentality of skilled nursing, invoked sheer terror in this writer’s soul. Thus I was pleasantly surprised when I checked into my new digs three days ago: no roommate, air conditioning 24/7 and the worst food since Soylent Green.(Which was great for me! Even the thought of a complete meal was enough to induce nausea.)


A mistake? An unfortunate Act of God? A practical joke? (No, none of these, but I can assure you this is where this fairy tale becomes Grimm).

You see, my new long-term care combatant is a 90+ retired auto body detailer with a broken hip and (lest I say the “A Word?”) Alzheimer’s.

Let’s start with what we know about Alzheimer’s — in a nutshell we know what we don’t know is infinitely greater than what we do know.

Look, I hate to be the bearer of bad news, but as an MIT scholar and former cell biologist, let me level with you, the news about Alzheimer’s ain’t good.

It is axiomatic of most human disease that “…within the cause lies the cure.” Thus, I’ve listed the latest causes of AD

The cause for most Alzheimer’s cases is still essentially unknown[34] (except for 1% to 5% of cases where genetic differences have been identified). Several competing hypotheses exist trying to explain the cause of the disease:

Cholinergic hypothesis

The oldest, on which most currently available drug therapies are based, is the cholinergic hypothesis,[35] which proposes that AD is caused by reduced synthesis of the neurotransmitteracetylcholine. The cholinergic hypothesis has not maintained widespread support, largely because medications intended to treat acetylcholine deficiency have not been very effective. Other cholinergic effects have also been proposed, for example, initiation of large-scale aggregation of amyloid,[36] leading to generalised neuroinflammation.[37]


Amyloid hypothesis

In 1991, the amyloid hypothesis postulated that beta-amyloid (βA) deposits are the fundamental cause of the disease.[38][39] Support for this postulate comes from the location of the gene for the amyloid precursor protein (APP) on chromosome 21, together with the fact that people with trisomy 21 (Down Syndrome) who have an extra gene copy almost universally exhibit AD by 40 years of age.[40][41] Also, a specific isoform of apolipoprotein, APOE4, is a major genetic risk factor for AD. Whilst apolipoproteins enhance the breakdown of beta amyloid, some isoforms are not very effective at this task (such as APOE4), leading to excess amyloid buildup in the brain.[42] Further evidence comes from the finding that transgenic mice that express a mutant form of the human APP gene develop fibrillar amyloid plaques and Alzheimer’s-like brain pathology with spatial learning deficits.[43]

An experimental vaccine was found to clear the amyloid plaques in early human trials, but it did not have any significant effect on dementia.[44] Researchers have been led to suspect non-plaque βA oligomers (aggregates of many monomers) as the primary pathogenic form of βA. These toxic oligomers, also referred to as amyloid-derived diffusible ligands (ADDLs), bind to a surface receptor on neurons and change the structure of the synapse, thereby disrupting neuronal communication.[45] One receptor for βA oligomers may be the prion protein, the same protein that has been linked to mad cow disease and the related human condition, Creutzfeldt–Jakob disease, thus potentially linking the underlying mechanism of these neurodegenerative disorders with that of Alzheimer’s disease.[46]

In 2009, this theory was updated, suggesting that a close relative of the beta-amyloid protein, and not necessarily the beta-amyloid itself, may be a major culprit in the disease. The theory holds that an amyloid-related mechanism that prunes neuronal connections in the brain in the fast-growth phase of early life may be triggered by ageing-related processes in later life to cause the neuronal withering of Alzheimer’s disease.[47] N-APP, a fragment of APP from the peptide’s N-terminus, is adjacent to beta-amyloid and is cleaved from APP by one of the same enzymes. N-APP triggers the self-destruct pathway by binding to a neuronal receptor called death receptor 6 (DR6, also known asTNFRSF21).[47] DR6 is highly expressed in the human brain regions most affected by Alzheimer’s, so it is possible that the N-APP/DR6 pathway might be hijacked in the ageing brain to cause damage. In this model, beta-amyloid plays a complementary role, by depressing synaptic function.


Tau hypothesis

The tau hypothesis is the idea that tau protein abnormalities initiate the disease cascade.[39] In this model, hyperphosphorylated tau begins to pair with other threads of tau. Eventually, they form neurofibrillary tangles inside nerve cell bodies.[48] When this occurs, the microtubules disintegrate, collapsing the neuron’s transport system.[49] This may result first in malfunctions in biochemical communication between neurons and later in the death of the cells.[50]


Other hypotheses


Herpes simplex virus type 1 has also been proposed to play a causative role in people carrying the susceptible versions of the apoE gene.[51]


Another hypothesis asserts that the disease may be caused by age-related myelin breakdown in the brain. Iron released during myelin breakdown is hypothesised to cause further damage. Homeostatic myelin repair processes contribute to the development of proteinaceous deposits such as beta-amyloid and tau.[52][53][54]


Oxidative stress and dys-homeostasis of biometal (biology) metabolism may be significant in the formation of the pathology.[55][56]


AD individuals show 70% loss of locus coeruleus cells that provide norepinephrine (in addition to its neurotransmitter role) that locally diffuses from “varicosities” as an endogenous anti-inflammatory agent in the microenvironment around the neurons, glial cells, and blood vessels in the neocortex and hippocampus.[57] It has been shown that norepinephrine stimulates mouse microglia to suppress βA-induced production of cytokines and their phagocytosis of βA.[57] This suggests that degeneration of the locus ceruleus might be responsible for increased βA deposition in AD brains.[57]




Well, I managed to complete this blog post on one hour of sleep. (Good for me!)


PS The title refers to a comment made by a personal care attendant to my new neighbor about a phlebotomist who wanted to draw a specimen.








From The Front Lines, a Fight for Aging Boomers

23 Jun
June 23, 2013


Martin Bayne, 63, in long-term care, is still trying to wake up his cohort: There is no solid system to care for elderly.


POSTED: Sunday, June 23, 2013, 3:01 AM


Martin Bayne doesn’t so much sit in his wheelchair as he sprawls in it. He looks like he might slip out at any moment. He is obese – a consequence of so many diseases, medications, and limitations.

His world is so small now, a room and occasionally the hallways of a personal-care home near Allentown.

It is from this isolated existence that Bayne, 63, has reached out to an enormous audience in the last year. He has had an essay published in Health Affairs, a leading health-care journal, and has been interviewed by the New York Times and by Terry Gross on her NPR radio show, Fresh Air.

Bayne sees himself as a “clarion” for aging baby boomers. For 11 years, since early-onset Parkinson’s disease left him unable to care for himself, he has been living in a world that primarily elderly people inhabit – institutional long-term care.

He has made many discoveries about this life, about its limitations and indignities, and he’s trying to wake up his generation. He borrows an analogy from Jimmy Carter: Boomers are on an elegant train, in the dining car, feasting on foie gras and steak, but only a few miles ahead, the track is out.

“A lot of people are going to get hurt,” he says. “Lose their dignity. Lose their way of life.”

Bayne recently got out of the hospital after weeks of pneumonia. Doctors also found a mass the size of a grapefruit on his thyroid. This is all on top of congestive heart failure, two pulmonary embolisms, and more.

Every word he spoke  during a visit last week was a struggle, but his wit was intact. Asked how he was doing, he said, “I’ll make it through the interview.”

Bayne excelled early on as a salesman of long-term-care insurance. The more he sold it, the more he saw its limitations, and the more he realized America needed to develop a new attitude about growing old and a comprehensive system to care for people as they declined.

Bayne realized that millions of Americans were suffering from chronic illness, but that there was no comprehensive system to help pay staggering bills or to provide care in acceptable settings. He became such an expert in long-term care and an advocate for reform that he earned the moniker “Mr. Long-Term Care” and once ran a popular website.

He tilted at the biggest windmills. In an interview with The Inquirer 13 years ago, he said: “The culture doesn’t know what to do with people who are old and frail. We hide them away. We have such a pathological view of aging. They want us kept young forever, having face-lifts. Until we deal with how we turn away from aging, long-term care will always take a second seat.”

As his Parkinson’s progressed, he became an enormous consumer of long-term care, first at home with aides, then for the last 11 years in two different facilities.

He had foresight to buy a long-term-care policy at age 40, for a $1,000 annual premium, which would pay up to $231 a day for life. His policy, he said, has paid about 80 percent of his $750,000 in long-term-care costs.

Bayne has now lost hope that America will develop a system to provide for the long-term care needs of its citizens. Neither the people nor the politicians have the will. His blunt solution: “Children should be tasked with taking care of their parents.”

Alas, Bayne, divorced, has no wife, no children. As his world has shrunk, so have his goals. He now just tries to improve the life of residents in his community. His descriptions are so powerful they have carried his voice far beyond his isolation.

“Most residents in assisted-living facilities, by necessity, live secret lives,” he wrote last year in Health Affairs. “On the outside, there might be a calm, even peaceful, veneer. But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in this type of facility.

“It’s the result of months or years of loneliness and isolation and of a lack of true social interaction among residents. It’s also the result of burying our feelings and emotions about the exceptionally high numbers of demented and disabled neighbors around us and being surrounded by frequent death.”

Bayne recounted a story about an elderly resident who interacted with no one. Bayne tried repeatedly, day after day, just to shake the man’s hand. He cut the man off with his wheelchair after dinner, blocking his exit, and still the man refused. Finally, one day, the man accepted Bayne’s extended hand.

“After that day, something happened to him deep down inside,” Bayne said. “Every meal after that, I would shake his hand.”

One day, the man, who always dressed in shabby clothes, came down in a fresh, pink oxford shirt. Bayne knew what it meant. “I started crying,” Bayne recalled. “My friend said, ‘Don’t worry. Everything is going to be just fine.’ He died that night.”

“Residents all feel enriched by their relationships with Marty,” said Suzanne Panick, the administrator at Sacred Heart Senior Living in Center Valley. Bayne routinely now sits with residents when they’re dying. A woman said to him, “There’s no place like home,” before drifting off and dying days later.

Bayne has changed in these last years. As he has grown more dependent, he has become more giving. “I learned how to reach in and touch a person’s heart,” he says. “Not in a manipulative way. But in a powerful way, in a way that gives the person being touched great power.”


Unexpected upset

This story takes a sharp turn.

On Tuesday, the day after our first interview, Bayne went by ambulance to a hospital in Bethlehem.

He had fallen out of his wheelchair. A personal-care home is not prepared to care for someone of his size, with his needs, said Panick, the administrator.

From the hospital, he will go to a nursing home. Panick says she worked hard to find a nursing home that would take someone of Bayne’s size. It will have equipment to lift him when he falls. And a therapist who can work with him to lose weight.

Bayne vehemently didn’t want to go. He wanted to stay in his assisted-living facility, his home. But in his eyes, what he wanted didn’t matter.

From his hospital bed, by cellphone, struggling for breath and words, Bayne said Wednesday: “I’ve spent most of my adult life being an advocate for other people. And when it’s my turn, I don’t have anyone to step up to the plate for me and no one to turn to.”

Panick, the administrator, visited Bayne in the hospital Thursday. She is fond of Bayne, and he knows that. She explained that Sacred Heart just didn’t have the facilities to help him. He needed rehabilitation to get stronger, lose weight, and return.

“I’m not upset,” Bayne said, barely audible on the phone. “It’s all changed again. But that’s the way it is. I look at it as a challenge. And that challenge might be good for me. So I’ll make the best of it.”


Contact Michael Vitez at 215-854-5639, mvitez@phillynews.com, or follow on Twitter @michaelvitez.