Another Thanksgiving as an assisted living resident! My eleventh to be exact. I navigate my wheelchair through the dining room’s maze of glass-topped tables with festive centerpieces, courtesy of our own octogenarian artisans and park my chair in front of the “Martin Bayne” name card on the table. Locking my wheels, I reach over and move the table display of paper flowers, carefully setting it on the floor. “Now I can see your face, Tom”

Tom is an 86-year-old retired CPA. His wife of 57-years died last year from a rare form of bone cancer, and after surviving a dozen skirmishes with Congestive Heart Failure (CHF) himself, his children — much to his protestations — convinced him to become an assisted living resident.

 At first, Tom found the experience almost unbearable. He desperately missed his wife, and the first time an aide (Brenda, 22) young enough to be his great grandchild showed up to give him a shower, it took the Admissions Director and two nurses half the night to convince him not to pack up and walk out that very next morning. But, truth be told, it was the Director who put Tom’s \dilemma in perspective without saying a word. When she walked in that morning, carrying coffee and donuts for the staff, she noted the discussion and listened in for just a few seconds. Then she casually walked into her office, withdrew a business card from her desk and walked out to where Tom was sitting and handed him the card.

 Tom took one look at the card, placed it in his pocket, and said, “I’m sorry for any time of yours I may have wasted. If there’s nothing else, I’ll excuse myself and have breakfast.”

 Now I’ve seen the Director (Marsha) use what I call “the magic business card trick” on more than one occasion. It’s not pretty and I don’t recommend it, but as a last-ditch effort to get to residents to focus, really focus, on the problem at hand, it’s quite effective. The business card is actually from a local homeless shelter. It usually takes a resident about 20 seconds to connect the dots. Like I said, it’s quite effective.

 Today, Tom has an easy smile and offers a generous “Good Morning,”which is returned in kind. He waves a server to the table and seconds later wraps his hands around a steaming cup of coffee. “Just a bowl of bran flakes,” he says to the server, “have to save plenty of room for the turkey.”

 I turn to Tom, “They’ve got a big bird this year. Three of them actually . . . “

 The server arrives at the table with a pot of coffee.

“I’ll have a cup, and you, Tom?  The waiter, seemingly confused, looks straight ahead, avoiding my eyes. “I’m sorry, Martin, but who’s Tom? There’s no one but you at this table.

 I look away. Emotions jostle for position: embarrassment, anger, confusion, and sadness. I finish my coffee and slowly make my way out of the room.

“This, too, shall pass, Marty” I tell myself. This, too, shall pass.”

What No One Should Have to Witness

Twenty years ago, at the age of 44 and recently diagnosed with Parkinson’s, I wrote the following

“When first thrust into the role of a long-term care caregiver or patient,

we begin to understand that our adversary is a formidable opponent.

And as the true nature of this adversary is revealed, you begin to realize what’s at stake —everything.

What we all value most — our dignity, independence, family relationships, even our life savings — becomes barter overnight

In essence, our very lives become negotiable. In the mere blink of an eye, the concept of “safe harbor” vanishes from our lexicon.

Against this backdrop I consider my diagnosis of Parkinson’s Disease as a stroke of good luck.

Unlike Christopher Reeve, I’ve had time to familiarize myself with my opponent: to take inventory, to prepare myself.

Unfortunately, a significant number of those reading this will not have the good fortune I did.

You will meet your adversary suddenly, abruptly, with little warning,

And you will meet him, on his turf .

And he will show you little mercy.” MKB

My thinking in those days went something like this:

I will survive Parkinson’s — stave off this wretched disease — until it is my turn to step out of my body and meet my creator.

In my wildest dreams, I never thought I would live to see 65, now just 15 months away.

But here it comes — like a freight train at full speed; thundering down a ribbon of steel, and with it, my greatest fear . . .dementia.

You see, Parkinson’s almost always slides into dementia, and not necessarily because of the disease itself, but rather the drugs used to treat the disease.

And yes, I’ve seen the new “memory enhancement” and “cognitive rehab” facilities.

And they’re exactly like you imagine them to  be.

Why am I telling you all this?  Because if you’re a Baby Boomer, NOW is the time to create an advocacy relation with someone.

Please, PLEASE take my advice to heart and make sure you have an advocate — a spouse, sibling, or perhaps even a professional.

Because the next time I visit a friend in one of this nation’s new dementia  facilities, I don’t want to see you sitting alone in a wheelchair in the hallway, confused, isolated and mumbling to yourself as you stare into space.

Martin Bayne

LONG TERM CARE TRAIN WRECK

Take a look at the data below.  Without saying a word it tells a story. The entire theme of the story is encapsulated into two words. Do you know what those two words are? HINT: you would if you’d read my 2,500 word essay in this nation’s most cited journal of health care policy Health Affairs, articles in the Washington Post, New York Times that drew more than 800 replies, and my NPR Fresh Air interview with Terry Gross. Skeptical? Check out  Wikipedia and see what they have to say.   Oh yes, the two words. Ambient Despair.

A Profile of Older Americans: 2012

The older population (65+) numbered 41.4 million in 2011, an increase of 6.3 million or 18% since 2000.

The number of Americans aged 45-64 – who will reach 65 over the next two decades – increased by 33% during this period.

Over one in every eight, or 13.3%, of the population is an older American.

Persons reaching age 65 have an average life expectancy of an additional 19.2 years (20.4 years for females and 17.8 years for males).

Older women outnumber older men at 23.4 million older women to 17.9 million older men.

In 2011, 21.0% of persons 65+ were members of racial or ethnic minority populations–9% were African-Americans (not Hispanic), 4% were Asian or Pacific Islander (not Hispanic), less than 1% were American Indian or Native Alaskan (not Hispanic), and 0.6% of persons 65+ identified themselves as being of two or more races. Persons of Hispanic origin (who may be of any race) represented 7% of the older population.
Older men were much more likely to be married than older women–72% of men vs. 45% of women (Figure 2). 37% older women in 2012 were widows.

About 28% (11.8 million) of noninstitutionalized older persons live alone (8.4 million women, 3.5 million men).

Almost half of older women (46%) age 75+ live alone.

In 2011, about 497,000 grandparents aged 65 or more had the primary responsibility for their grandchildren who lived with them.

The population 65 and over has increased from 35 million in 2000 to 41.4 million in 2011 (an 18% increase) and is projected to increase to 79.7 million in 2040.

The 85+ population is projected to increase from 5.7 million in 2011 to 14.1 million in 2040.

Racial and ethnic minority populations have increased from 5.7 million in 2000 (16.3% of the elderly population) to 8.5 million in 2011 (21% of the elderly) and are projected to increase to 20.2 million in 2030 (28% of the elderly).

The median income of older persons in 2011 was $27,707 for males and $15,362 for females. Median money income (after adjusting for inflation) of all households headed by older people rose by 2% (not statistically significant) from 2010 to 2011.

Households containing families headed by persons 65+ reported a median income in 2011 of $48,538.

The major sources of income as reported by older persons in 2010 were Social Security (reported by 86% of older persons), income from assets (reported by 52%), private pensions (reported by 27%), government employee pensions (reported by 15%), and earnings (reported by 26%).

Social Security constituted 90% or more of the income received by 36% of beneficiaries in 2010 (23% of married couples and 46% of non-married beneficiaries).

Almost 3.6 million elderly persons (8.7%) were below the poverty level in 2011. This poverty rate is not statistically different from the poverty rate in 2010 (8.9%). During 2011, the U.S. Census Bureau also released a new

Supplemental Poverty Measure (SPM) which takes into account regional variations in the livings costs, non-cash benefits received, and non-discretionary expenditures but does not replace the official poverty measure. The SPM shows a poverty level for older persons of 15.1% (more than 6 percentage points higher than the official rate of 8.7%). This increase is mainly due to including medical out-of-pocket expenses in the poverty calculations.

*Principal sources of data for the Profile are the U.S. Census Bureau, the National Center for Health Statistics, and the Bureau of Labor Statistics. The Profile incorporates the latest data available but not all items are updated on an annual basis

He awoke like he always did, regardless of the season or hour: groggy and hung over – his stomach alternating between a sea-sick-like nausea and a ravenous hunger.

“Here,” said a disembodied voice on his right. A warm, wet face cloth hung in the air, as if by magic. Below the cloth, a breakfast tray was balanced with the morning paper, a small stack with a mound of home fries, bacon, eggs and coffee. The faces that spoke to him were always hidden behind desk lamps – ostensibly, he thought,  to hide their true identity.

He eyed the food warily, captive to both a growing hunger and a hatred for his captors.“He upset the food tray and threw the wash rag on the floor. “No “Stockholm Syndrome” today, he shouted to the crew – all professionals, he assumed, given their self discipline and training.

No, this was not just another Mexico City taxi kidnapping he thought. By the looks of it, they must have abducted at least 50 men and women of every shape and color..

But he had a secret. A secret that would save his life. A secret so clever, it would even force his captors into the hands of local law enforcement.

The secret? He had contacted his son, Mark with the news of his horrendous experience, as well as his GPS coordinates. Dear God in Heaven – I’m finally going to be free again.

That evening, Mark and his wife showed up at the given coordinates precisely at 8:00pm.

Mark threw his arms around his father, but his father remained motionless. He looked into his son’s eyes . . .”Who are you?” he asked his son, but Mark had learned, that in the advanced stages of dementia, a good hug was something to be grateful for.

Last night, I joined eleven residents of my assisted living facility for a friendly game of poker. Well,  not “real” poker; there was no bidding, betting, bluffing or exchange of money.  In fact, the outcomes of the hands dealt were of little interest to the residents. People gathered in the Activity Room for poker because, for many  it’s the most opportune time of the day to enjoy the social intercourse of each other as a family. No, not a bloodline family — but in every sense of the word, still a real family. You see, when someone  moves into an institutional aging community, they automatically become a member of the family that is the community.

It’s (the nightly card game) also – for reasons unknown to me – a “safe” time to express emotions of affection and kindness. I’ll give you an example: like most assisted living communities, there is a growing percentage of residents who suffer from some measure of dementia. Our community is no different. In many communities, these residents would be quietly ostracized from group activities. But my community, Sacred Heart of Center Valley, Pennsylvania, seems to take a different approach. At the card game, for example, each resident with memory issues, is “adopted” by one or more residents who, during the game, help the resident with dementia make sense of the hand they were dealt. (pun intended)

This morning at roughly 7:20am, as I was writing this blog post, I decided to call one of the country’s most astute, insightful individuals on the subject of dementia, Jackie Pinkowitz. I asked her to comment on the state of dementia in the US. After a terse “Do you have any idea what time it is?” she offered the following . . .

“In 2001, the Institute of Medicine’s (IOM) report titled “Crossing the Quality Chasm” described our nation’s healthcare system as impersonal and fragmented. The report stated that a critical element needed in that redesign was a shift to a person-centered approach.

In the spring of 2012, CCAL convened a Thought Leaders’ Summit in Washington, DC with more than sixty national dementia experts from research, policy and practice to change the impersonal state of dementia care in our country to one that reflects humanistic principles and practices, encompassing all aspects of health and well-being. The resulting consensus white paper, published in January 2013 can be read at http://www.ccal.org/national-dementia-initiative/white-paper/

Now, CCAL, Eden Alternative, and Planetree have joined together as a leadership team to launch the Dementia Action Alliance, intended to coalesce and connect the voices of people living with dementia and their care partners and other advocates across the country with stakeholders across research, policy and practice to make person-centered care and services the standard for care in our country.

With untiring advocates like Martin Bayne, sending his insights and compassion and humanity out across this country in his writing and his speeches, we will build lasting bridges of commitment to person-centeredness across any and all chasms.”

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
jpinkowitz@gmail.com
732-212-9036
www.ccal.org
www.theceal.org

This is a recording of a keynote address that I gave to a group of nurses and administrators today, 9/20/13.

Podcast: Play in new window | Download

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.

Conclusion:

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

MB      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.

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.