This is a recording of a keynote address that I gave to a group of nurses and administrators today, 9/20/13.
This is a recording of a keynote address that I gave to a group of nurses and administrators today, 9/20/13.
Greetings, Fellow Baby Boomer.
You and I have traveled halfway across the known Universe for the opportunity to experience this, the final season of our lives. No need to worry – we’re not alone. Seventy seven million other Boomers are here to provide us with every level of support imaginable. And should we deplete those resources, there are an additional six billion on call. The only stipulation is we have to ask.
I want to also congratulate us on our impressive survival skills. Born between 1946-64 we’ve already survived:
The Bay of Pigs invasion, The Cold War, The Hungarian revolt, The Algerian War, The Arab-Israeli War, Zanzibar Rebellion, The Mau – Mau Uprising, The Ethiopian/Somali Border War, The Congolese Civil War, The Sudanese Civil War, The Angolan War of Independence, The Cypriot War, The Palestinian/Lebanese Civil War, The Argentina Revolt, The Burmese Guerilla War, The French Indochina War, The Vietnam War, The Korean War, Hukbalkahap Rebellion, Indonesian Wars, Laotian Civil War, Sino-Indian Border Dispute, Malay Jungle Wars, Achinese Rebellion, Desert Storm, Shock & Awe, Operation Enduring Freedom and Chicken Pox.
We’ve suffered through the assassinations of John and Bobby Kennedy, Martin Luther King, Jr., and Malcolm X. We even endured the pointless murder of John Lennon. Imagine.
We’ve also spent somewhere between 50-100,000 hours in front of a cathode ray tube, absorbing God-knows-how-much of the electromagnetic spectrum and, surprisingly, we can both still remember where we live and how to spell our names. Come to think of it, “when I think back on all the crap we learned in high school it’s a wonder we can think at all.”
But, come on . . . admit it, there were perks: the music, oral contraceptives, Freedom-of-Information Act, Civil rights Act, Americans with Disability Act, and the end of military conscription to name a few.
Now there are but two challenges remaining, two tiny speed bumps on the great road of life: aging and dying.
Unfortunately, there’s not much I can do about the second of these, so we’ll focus on the first.
I recently spent five weeks in a skilled nursing facility (nursing home). The administrators from the assisted living facility where I’ve been a resident for 3.5 years, arranged for the rehab with the idea that the muscles in my legs – after 15 years in a wheelchair – needed a tune-up.
They were right.
To date, I’ve had Parkinson’s for 19 years, about 15 of those in and out of a wheelchair. And here’s the problem . . . Our leg muscles atrophy if they’re not used on a regular basis. Once they’ve gone into a state of prolonged senescence, it’s a bugger to get them to work again. (Someone once said, “If I’d known I was going to live this long, I’d have taken better care of myself.”)
Well, long story short, my legs don’t work so well these days. As a matter of fact, they don’t work at all. Ergo my sabbatical at Lehigh Center in Mucangie, Pennsylvania.
I’d like to report to you that the rehab was successful and I’ve already signed up for two iron-man triathlons. I’d like is the operative term here. The truth is that my legs are unlikely to ever work at full capacity again, but even a small gain would make me happy.
Using the last 100 years as our baseline, social demographers have a pretty good handle on the 77,000,000 of us that are moving like a massive glacier toward any and every thing in its path.
Yes, Baby, we’re the Boomers, rockin’ and rollin’ our way through Clintonian bubbles, the near collapse of the US banking system, the constant threat of nuclear conflagration, the Fall of the Wall in Berlin and a global safari for Alan “Al” Qaeda.
And we ain’t dyin’, not until we’re damn-well ready.
Peace, Martin Bayne
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.
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.
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.
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.
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 . . .
FRONTLINE AND PROPUBLICA INVESTIGATE ASSISTED LIVING IN AMERICA
FRONTLINE and ProPublica Present
Life and Death in Assisted Living
Tuesday, July 30, 2013, at 10 p.m. on PBS
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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
Thomas 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
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
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