April 9, 2014

HELP US TO MAKE THE VOICES OF PEOPLE LIVING WITH DEMENTIA

BE HEARD IN WASHINGTON DC!

 

CCAL-Advancing Person-Centered Living is working with the University of Buffalo-Institute for Person-Centered Care on a research project funded by the Retirement Research Foundation.  One of the aims of the study is to gather feedback from a geographically diverse group of people about what they feel is important and/or needed concerning dementia care in America.

The aim of the survey is to develop agreement on priorities for dementia care, research, education, and funding from the perspectives of people living with dementia, family care partners, and advocates for people with dementia. As someone with knowledge about dementia, we invite you to take part in this study.  It is easy to participate and will not involve much of your time. 

There will be at least one more round of the survey as we build agreement. We hope that you will participate in the multiple rounds. We will ask you for your email at the end of the survey so we can send the next survey to you. Your responses and any other information you provide will not be linked to your email. The research has been approved by the Internal Review Board at the University of Buffalo. 

A written survey and a pre-addressed, postage-paid envelop can be mailed to you if you would prefer this method instead of completing the survey online.  Please call the number below and leave your name and address. 

We will combine the views of everyone who takes part in the survey.  We will use the information to help inform federal policymakers about what people feel is important and needed concerning dementia care to better inform and shape their priorities.

Your response by April 25, 2014 would be appreciated.

To take part online click on this link: https://www.surveymonkey.com/s/CoalesceandConnect

To request a paper version contact:

Dr. Davina Porock

Director, UB Institute for Person-Centered Care

(716) 829 2260

Or email ipcc@buffalo.edu.

 Thank you for helping us make your voice be heard!

 

Karen Love, Founder, CCAL-Advancing Person-Centered Living

Davina Porock, PhD, Director UB Institute for Person-Centered Care

 

 

March 29, 2014

I now share a table in our dining room with a 99-year old woman we’ll call “M”.

When I met M for the first time – yesterday evening at dinner – I cried uncontrollably for a good half-hour.  In retrospect, I realize that my tears were the first shed since my mother died last month. The last four weeks I’ve been wondering when the grief would finally hit . . . and yesterday was that day.

I suspect it’s also because M has an uncanny resemblance to my mom: sunken cheeks, translucent skin, and the other myriad realities of old age – making her even more precious.

Today at dinner, I found myself again in tears – only the second time in 4 years I can remember shedding  tears in the dining room. This time the sluice gates opened when M mentioned her dog, Cowboy, and how desperately she missed him, “He’s slept with me every night for eight years,” she said. I asked her to describe the dog and I then realized the dog is now being watched over by a member of the staff, here at my facility. In fact, I remember seeing the dog just yesterday – brought in by the very same staff member – who it turns out is M’s granddaughter!  [I promised M I would look into it tomorrow].

But M said something else today that triggered a small epiphany. You see, “ambient despair,” a term I coined to describe the phenomenon in which residents constantly subjected to abnormally  high rates of dementia, death, depression and disability, “fail” quicker than their counterparts who receive the majority of their care in the community and at home.

Yet I’ve always felt that something was missing from the equation. And tonight, as I bit into a crab cake, and M finished talking about Cowboy, she said, “The trouble with being this old is that everyone tells  you what to do . . .as if you were a child.” That’s when the lights came on.

The inconsistent,  manipulative policies of both staff and administration in any top-down management system, eventually trickle down to the residents.

Here’s an example: my facility has the ability to pump FM radio throughout the building, and every day they anesthetize the residents with the same, dreary, monotonous “golden oldies” station.  All of which begs the question, “Did anyone ever ask the residents what they want to listen to?” (There’s a great little NPR affiliate station in Bethlehem, PA – just a stone’s throw from where I live.)

So, every day, at an arbitrary time slot – whether I’m talking to a friend, writing an essay or reading a magazine on the john, I can be absolutely certain I’ll hear those immortal words:

 If you wanna’ be happy

For the rest of your life,

Never make a pretty woman your wife,
So from my personal point of view,
Get an ugly girl to marry you.

A pretty woman makes her husband look small
And very often causes his downfall.
As soon as he marries her
Then she starts to do
The things that will break his heart.
But if you make an ugly woman your wife,
You’ll be happy for the rest of your life,
An ugly woman cooks her meals on time,
She’ll always give you peace of mind.

Don’t let your friends say
You have no taste,
Go ahead and marry anyway,
Though her face is ugly,
Her eyes don’t match,
Take it from me she’s a better catch.

Say man.
Hey baby.
Saw your wife the other day.
Yeah?
Yeah, she’s ugly.
Yeah, she’s ugly but she sure can cook.
Yeah?. Okay.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

March 19, 2014

 

 

Spring, 1999. I hold the telephone tight against my ear, not wanting to miss a sound.

In the background, the high-pitched whine of Rolls Royce jet engines as the pilot guides the  plane across the tarmac to the connecting hub where the passengers will deboard.

In the foreground a half-dozen prominent voices mix with the PA system as I attempt to make sense of the tsunami of noise. Finally, I hear the former President’s voice. . . a bit more laconic than the peanut farmer drawl I’m accustomed to, but still unmistakable.

“Mr. President?” My voice is strong, but humble – I am fully aware I am now speaking with a man whose voice was once the most powerful on Planet Earth.

“Yes, is this Martin Bayne?”

“Yes, Sir. It sounds a bit crazy there; are you still okay with the interview?”

“It’s pretty normal stuff for a book tour, Mr. Bayne. Fire away . . .”

And that’s how it began.

Jimmy Carter was promoting his most recent book – a personal journal about aging – and I arranged an interview with his publicist.

Today, all I remember of the interview is that the president and I agreed on three immutable truths with respect to long-term care:

First, administration and regulation of long-term care in the United States is controlled by lobbyists and special interest groups.

Two, the engine that powers the machinery of our institutional long-term care system; namely, those who provide the actual care – private care attendants – is a group, that for the most part, is treated with irreverence, indifference and contempt by a top-down management system that often appears more interested in the bottom line than the resident.

And three, the group most likely to be hammered by a long-term care system in disarray is the Baby Boomers.

In fact, today you can almost smell the blood in  the water as sharks surround another bleeding Boomer trying to care for a parent or sibling; worried about the future need for care for themselves.

If you can’t smell it, you can certainly see it.

Every day, a new “senior” multimedia group pops up, reminiscent of the 2008 feeding frenzy when it  was discovered that you could package due-diligence-free –mortgages and sell them as securities, as hedge fund managers from the same firms were swooping in the sell the securities short. Greed flowed like wine.

And before I knew it, the president was again at 30,000 feet and I was breathing hard with an empty feeling in the pit of my stomach.

For God’s sake – is anyone listening?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

March 3, 2014

must have a code,

that you can live by.”

-          Crosby, Stills & Nash

When I listen to the impassioned pleas by celebrities to members of Congress for dramatic increases in Alzheimer’s research funding, I often try to imagine a world where not only have we defeated  Alzheimer’s, but also Cancer, Cardiovascular Disease, stroke and lung disease. In other words, a world in which we have managed to eliminate the major causes of death for human beings.

And when I allow myself to visualize such a scenario – a world in which mankind lives to the age of three or four hundred years . . . I end up with a vision that rivals any horror film I’ve ever seen.

Let’s be honest: would you like to spend the next three-hundred years in an assisted living facility? Neither would I.

And imagine caregiving your 345-year-old mother-in-law. Or working to the age of 230 to qualify for Soc. Sec. benefits.

In short, try to imagine a world of 40 billion human beings, where 80% of them are over the age of 200!

So what’s missing in this incredible fantasy? Why is it so wrong?

Because if seven billion of us can’t get along, at 40 billion we’ll eat our young!

Because, as it says in the song, we need a code to live by.

And because today, 2014, ten thousand years into the game, we still don’t have one . . .

 

March 2, 2014

 

 

A Letter To Sarah Ann Landis

 

Mother,

 

It is 5:00AM on a cold, March morning. My mind paces back and forth like a wounded animal, trapped in a cage of grief, while a single thought:  I will never hear your voice again – burns a hole in my heart.

It’s been almost three weeks since we said our final goodbyes; you, lying in a hospital bed, drifting in and out of consciousness; me, sitting next to you, my hand resting lightly on yours – the skin nearly translucent after 86 years of life and the elements.

“I never truly  experienced love,” you once told me, “until the day you, my first-born, entered this world.”

You also said the years I spent as a monastic novitiate, nearly 3,000 miles from each other, were some of the loneliest you could remember – on more than one occasion referring to that period of time as “the dark years.”

“It was almost a miracle,” you once told me, “when one afternoon, as I vacuumed my bedroom, I looked out a window at the sky, and it struck me that you might be looking at the same sky. Imagine that. Sure, you were still 3,000 miles away, but I had discovered a ‘bridge’ that brought us closer together and it gave me a great sense of peace and joy.”

And Mom, surely you remember the “birthday candy boondoggle?” For nearly 20 years, and regardless of where I was, you sent a box of chocolate-covered cherries to me on my birthday. One day, as the family sat together on my sister and brother-in-law’s deck, with tall glasses of ice tea and freshly-baked cookies, I confessed how much I disliked chocolate-covered cherries, but never had the heart to tell you because of how much it meant to you to make that connection. We all had a good laugh, and on my next birthday I received another box of chocolate-covered cherries. Old habits die hard.

And finally there was Christmas Eve. As a young boy, you and dad would spend the entire evening assembling toys, bicycles, and chemistry sets for me and six younger siblings. If, by 6:00AM you had finished most of the heavy lifting, you’d whisper for me to come down and open one present. As an adult, Mom, you extended the tradition by attending Christmas Eve mass with your first-born. After mass, we would walk home together and celebrate Christ’s birthday with glasses of egg-nog and rum.

I’m going to miss you Mom. God knows, I’m going to miss you.

Martin

 

 

 

 

February 26, 2014

February 26, 2014

Alright! Let’s throw caution to the wind and be completely honest with each other. No, I mean completely honest.

The  subject at hand?  Time efficiency. In other words, what we do with all the time we’re able to save during the course of a day.

And how do we generate time saving? We do what any capitalist-compliant-consumer does. We buy something new, naturally. A new Ferrari, iPad or bundled mortgage securities. Something designed – as the ads say – to give us our lives back, spend time with the family, or do something meaningful that we deserve.

But the clever fellows who wrote the ad copy know exactly what we’re REALLY going to do with the luxury of all this newly-discovered, time — we’re going to play The Angry Birds, Grouchy Chickens or whatever the latest multimedia app is.

That’s why I don’t own a smart phone. I find I accomplish much more when I’m perceived – not as a consumer who strives for knowledge and wisdom – but rather one content on remaining as ignorant  as a bag of  hair.

 

 

February 24, 2014

     February 23, 2014

      Today, Amazon.com President and CEO Jeff Bezos announced the first FDA-approved digital reader for those afflicted with ADD, Macular Degeneration, and postpartum depression.

       ”The Kindle Nine is revolutionary,” said Bezos, munching on a bag of fried pork rinds, “and the technology is bleeding edge. We knew we needed a reader with a more substantial interface, and I think we found it,” he said, pointing to the Kindle’s hydraulic “cranium crusher.”

       Bezos illustrated the concept by inserting the head of a small boy snugly under the bar — which, in turn, exerted  87  psi pressure. on the cranial cavity, ultimately causing the eye and the optic nerve to fuse with the book. “When the optic nerves fuses with the book, genuine molecular osmosis takes place,” Bezos explained, “information is squeezed from the book, through the fractured eye socket, and directly to the frontal lobes.”

        “We’ve discovered that this technology virtually eliminates ADD, Furghower-Shane Disorder, Multiple Melanoma and – in rare cases – stage 3 Halitosis.”

February 23, 2014

February 22, 2014