STUDY: More Complex Physical Health Needs Result in Greater Stress and Diminished Quality of Life for Caregivers

23 Aug
August 23, 2014

NEW YORK, NEW YORK August 19, 2014 The United Hospital Fund and AARP Public Policy Institute issued a report today with compelling new evidence that family caregivers who provide complex chronic care to people who also have cognitive and behavioral health conditions face particularly demanding challenges, including high levels of self-reported depression. As a result, a majority of them (61 percent) reported feeling stress “sometimes to always,” between their caregiving responsibilities and trying to meet other work or family obligations.

Adding to the challenge, people with cognitive and behavioral conditions (collectively termed in the report “challenging behaviors”) were generally sicker than other people requiring caregiving.  These persons needing care often had chronic physical health diagnoses—including cardiac disease, stroke/hypertension, musculoskeletal  problems (such as arthritis or osteoporosis), and diabetes—at higher rates than those without cognitive and behavioral conditions. Further illustrating the complexity, family caregivers of people with challenging behaviors often met with resistance from the person they were trying to help. Caregivers noted that “more cooperation from their family member” would make one key medical/nursing task—managing medications—easier.

take care elder symbol

 Can we all agree there’s nothing noble about being stuck and cornered into providing 24/7 long-term care for a parent, sibling or friend. Nothing inherently virtuous about helping them use a bedpan/urinal, or providing a steady hand to bring food to their mouth.

Yes, it can be satisfying on many levels, but –let’s face it — if professional assistance was both available AND affordable, wouldn’t you enjoy the option of respite for you and/or parent?  Or if you could sleep through the night, soundly for two nights in a row, wouldn’t that go a long way toward lifting the depression that has covertly attached itself, body and soul?  

Why is caregiving so difficult? 

These, of course, are rhetorical questions — we  know the answers, and those answers, in large part, are due to a lack of planning and confrontation avoidance during the years we are young and in good health.  We believe that somehow, magically, these things will “work themselves out” somehow, somewhere. But they don’t. And the consequences are often tragic.

I am in the process of securing a Congressional Resolution, setting aside Dec. 23rd as NATIONAL LONG TERM CARE INTERVENTION DAY.

It will encourage families to spend quality time together, talking about long term care options.

Hey, it’s a start.   Martin Bayne

 

THINKING THE UNTHINKABLE

16 Aug
August 16, 2014

 

buzz

 

With the tragedy of Robin Williams still fresh in my mind, I want to share something with you.

Suicide saved my life.

I mean no disrespect to the surviving family with this statement, nor do I seek to make light of another’s suffering. I’m simply recounting my experience.

In 1995, at the age of 45, and in the ascendancy of my life professionally, socially and spiritually, I was diagnosed with Idiopathic Parkinson’s Disease.

Today, nearly 20 years later, I look back in astonishment at the last two decades and wonder how I managed to not only survive, but to actually grow emotionally and creatively. Make no mistake: Parkinson’s is as ruthless as it is cunning – always searching for weakened neurological conduits and components; taking every opportunity to enslave me psychologically; making it more difficult to live with dignity and purpose.

How have I survived? I decided to fight. I made a covenant with myself, vowing to never let Parkinson’s get the upper hand.

And what is that upper hand? It’s attitude. It’s a focused resolve to live my life fully and joyfully, in service to my fellow man, regardless of how I might feel at any given moment. Does it always work? No. I fall down, literally and figuratively nearly every day. Yet, I don’t compound the falls with self-punishment. I simply get up and continue the journey.

And what do I  say about Mr. Williams? I say I can’t possibly imagine what life would be like with this disease AND a difficult marriage, a substance abuse struggle, the stress of fame, and the battalion of demons that often follow genius.

Have I ever contemplated suicide?

I never needed to.

Just knowing I could “opt-out” of the dark abyss of depression that is so often a component of Parkinson’s, was enough to prevent the act of suicide itself.  Yet, don’t for a minute think I was able to side-step the abyss – 18 ECT or “shock treatments,” 6 years of cognitive therapy, and 233,000 pills later, I’m still struggling with PD and my loss of the activities of daily living. (I’ve always said the true test of humility is having to ask a perfect stranger to wipe your behind.)

The circle now complete, we find ourselves back where we started: suicide.

My vision of the Creator, as insignificant as it is, does not include a punitive and vindictive father.

I choose to believe that at this very moment, Mr. Williams is enjoying  a ” Peace that passeth all understanding.”

The same Peace I wish for you.    Martin Bayne

ROBIN WILLIAMS 1951-2014

15 Aug
August 15, 2014

Now cracks a noble heart,

Good night sweet prince

May flights of angles sing thee to thy rest

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The Nine Principles of Dynamic Kindness

04 Aug
August 4, 2014

241

 

THE NINE PRINCIPLES OF DYNAMIC KINDNESS

With gratitude, both “good” and “bad” become capable teachers.

With generosity, even small stones can create great ripples.

With tenderness, we turn the stream of compassion within.

With stillness, we sit quietly in the center of the cyclone.

With insight, we accept the change of life’s seasons

With courage, we move forward – despite our fear.

With service, no time to ask, “Why am I here?”

With forgiveness, we discover true freedom.

With faith, we learn to surrender.

Caregiving is often a multi-layered, emotionally exhausting, physically challenging series of daily, and 24/7 implementation of care plans, statuatory regulations, federal guidelines and (lest we forget), the needs and wishes of those receiving the care.  There is also the ambient despair that is part of a life of disability, depression, dementia and death. I know. I have been on both sides of the care-giving fence for more than twenty years.

What have I learned during those years?

I learned that of all the techniques, healing systems, protocols, clinical trials, methodologies, and treatment plans, what works most reliably, most consistently, with the greatest rate of success is simple kindness.

The list of Dynamic Kindness pre-cursors is listed at the top of this page.

Study it well: let the words flow into that part of you that is birthless and deathless.

You will never regret it.      Martin Bayne

 

Turning the Other Cheek

27 Jun
June 27, 2014

slap

Matthew 5:39
But I tell you, do not resist an evil person. If anyone slaps you on the right cheek, turn to them the other cheek also.

Luke 6:29
If someone slaps you on one cheek, turn to them the other also. If someone takes your coat, do not withhold your shirt from them.

“The drama (of human life) is this. We came as infants “trailing clouds of glory,” arriving from the farthest reaches of the universe, bringing with us appetites well preserved from our mammal inheritance, spontaneity wonderfully preserved from our 150,000 years of tree life, angers well preserved from our 5,000 years of tribal life–in short, with our 360-degree radiance–and we offered this gift to our parents. They didn’t want it. They wanted a nice girl or a nice boy.” – Robert Bly

Bly sets the stage for why many of us are already at war with ourselves by the time we are teenagers. And as the responsibilities of our lives increase, and the demands of the marketplace intensify, the war expands and the weapons become more sophisticated.

Self-contempt drills down deep into the psyche; we cover the wound with a patch: money, romance, power, notoriety, but the patch never holds and we cannot stanch the hemorrhage.

Yet, scabs are unsightly, and we hide the wounds under silk shirts and satin sheets. It is only when we stand and watch in horror as a “bleeder” walks out of his high school lunch room with a nine millimeter automatic and a trail of bodies behind him do we  roll back our own bandages …..

Why does this happen? Each of us has a dominant inner voice – it’s part of being human and having an ego.

That voice “speaks” to us thousands of times a day; for some, the tone is generous, supportive and playful; for most, however, the conversation invariably turns ugly: “You’re not living up to your potential, you could be doing more,” and “you should feel ashamed or embarrassed about ______,” or “why can’t you be more like ______?” When you hear someone use the expression, “If you only knew the real me…,” they are almost always referring to their Raging Voice.

And so, for 20, 30, or 90 years we play a game with ourselves. We pretend to ignore the voice. We fill every waking, conscious moment of our lives with noise and motion. We drive our cars with the radio on; we eat our lunch or make the bed with the TV on. Anything to avoid coming to a stop in silence.

For it is there, in the silence of non-movement, that we are left alone with our voice. And the thought of being alone with that Raging Voice terrifies us.

I smile now as I write these words, but forty years ago – as a Soto Zen Buddhist monk – I would quickly make my way to the Zendo each morning at 5 AM to join the rest of the community for what turned out to be my first introduction to the Raging Voice. Through the practice of zazen – a form of meditation where the monk sits mindfully in front of a wall – you set aside all distractions and opinions. It’s just you and “your stuff,” your Raging Voice.

The years at the monastery were invaluable – I could now easily identify the Raging Voice – but that’s as far as I got.
It took another 25 years for me to realize that, despite using every weapon imaginable, defeating the Raging Voice was impossible.

It was at that point I gave up. To be more precise I surrendered. To be exact, I asked the Raging Voice to join me at a Peace Summit. To my utter astonishment, He agreed.

That first Peace Summit was the most gratifying moment of my life.

And that which I had feared the most — actual “voice” itself? — a collage of childhood personas that simply wanted attention and recognition, like any child. Once I recognized that these schoolyard bullies were as confused and vulnerable (and afraid!) as I was, it was like meeting old friends after a 45-year sabbatical.

Finally, there’s the issue of the two biblical passages I left dangling in the wind.

Are you able now to see them in a different light?

“It’s rather elementary,” dear Watson . . . We are both the person who slaps and the person being slapped.

See this fundamental truth with your own eyes, and the gates of heaven are revealed.

Pope to Mafia: Bafangool !

23 Jun
June 23, 2014

headvisblog07ENmm

 MASS IN SIBARI: THOSE WHO TAKE THE PATH OF EVIL ARE EXCOMMUNICATED

(POPE EXCOMMUNICATES ITALIAN MAFIA!)

Vatican City, 21 June 2014 (VIS) – During his journey from Cassano all’Jonio to Sibari, a distance of slightly less than twenty kilometres, the Pope stopped in the parish of San Giuseppe where, on 3 May last year, the priest Lazzaro Longobardi was murdered. Bishop Nunzio Galantino, secretary of the Italian Episcopal Conference, described him as “a martyr to charity”.
The Holy Father arrived at Marina de Sibari at 4 p.m. and, after greeting the numerous faithful awaiting him, he celebrated the Holy Mass of Corpus Domini, commenting that while on Holy Thursday we celebrate the institution of the Eucharist in the Last Supper, Corpus Domini is a feast primarily of thanksgiving and adoration.
“Indeed, the procession with the Most Holy Sacrament is traditional on this day”, he explained. “Adoring Jesus Christ and walking with Him. These are the two inseparable aspects of this feast day, which characterise all the life of the Christian people: a people who adore God and a people who walk, who do not stay in one place, who walk!”
First of all we are people who adore God. We adore God Who is love, Who in Jesus Christ gave Himself for us, Who offered Himself on the Cross to expiate our sins, and through the power of this love, rose from the dead and lives in His Church. We have no God other than Him! When, instead, we substitute adoration of the Lord with adoration of money, the way opens to sin, to personal interest and abuse; when one no longer adores God, the Lord, one becomes an adorer of evil, like those who live through dishonesty and violence. Your land, so beautiful, knows the signs and the consequences of this sin. The ‘ndrangheta is this: adoration of evil and disdain for the common good. We must fight this evil and expel it. We must say no!”, he exclaimed. “The Church, who is so committed to educating consciences, must make increasing efforts to ensure that good may prevail. We ask this of our boys and girls, our young people in need of hope. To be able to respond to these needs, faith can help us. Those who follow this path of evil in life, as the mafiosi do, are not in communion with God: they are excommunicated!”

How to Come Awake

18 Jun
June 18, 2014

Silhouette of a tree during an orange dusk

Most of us go through our lives, from day to day, completely asleep.

Suffering can wake us up.

You might think this story is about my friend Martin Bayne. He once had a career selling long term care insurance. Then, in 1994, he was diagnosed with early onset Parkinson’s.

It woke him up. He became an advocate for buyers of his insurance as Mr. Long Term Care. Even when he himself came to need full-time care, he didn’t give up, becoming an advocate for patients. And, now, for that pig making its way down the full length of the python, the tens of millions of baby boomers facing their own (our own) decline, decay and death, he is our advocate, our guide, and our friend.

Martin’s not alone. Michael J. Fox has done most of his best work since being diagnosed with Parkinson’s.  Mohammed Ali has had Parkinson’s for years, and Janet Reno served as Attorney General with it. They are all great examples to a new generation of sufferers, like singer Linda Ronstadt, fight trainer Freddie Roach, and basketball player Brian Grant, all of whom have “woken up” to the angels of their better natures after being diagnosed.

But you don’t need Parkinson’s to get the wake-up call. Any intimation of mortality, or infirmity, can make any of us connect our minds to our bodies and start changing.

I didn’t start taking care of myself until being diagnosed with hypertension in 2000. My wife finally got on the exercise train after tearing a meniscus ligament in her knee a few years ago.

You may want to do the same.

What does being “awake” mean anyway?

It means living a full life, every day, in every way you can. It means smiling through your troubles and not giving in to despair. It means caring about others more than yourself.

That can be hard. My mom, who is 90 years old, was recently moved into a personal care home and I can hear the struggle in her voice, each day I call. “I want to go home,” she says. But incontinence and the onset of dementia mean she needs 24 hour care, care me and my relatives can’t provide for her.

Will her struggles awaken her? Or will then send her down for the last time?

No one knows until they face that music.

Of course, there is another way to wake up. When you reach the top of the mountain, look down, and see the trash littering that mountain, it can wake you up big-time.

I knew Bill Gates, as a technology news writer, back in the 1980s. He was a nerdy, driven, focused marketer, so asleep to the world outside himself that some of us journalists felt sorry for him.

Then, as he achieved his own goals, a strange thing happened. Maybe it was his wife Melinda. Maybe it was having kids. Maybe it was finding he was the world’s richest man, but that it was making him the king of a dung pile.

So he transformed himself. He took a small foundation he’d started in 1994, with some vague ideas about global health, combined it with a foundation he and his wife had started for giving libraries Internet access, and threw his whole fortune into it.

The Bill and Melinda Gates Foundation isn’t just a giant pile of money. It is $38.8 billion, and climbing, dedicated to wiping out dread diseases like AIDS, tuberculosis, malaria, and polio, some of which are coming back because ignorant, sleeping Americans refuse to vaccinate their own kids. It is not just his fortune, but that of mega-investor Warren Buffett as well.

And it’s not just a foundation. It’s the family business. Bill, Melinda, and Bill’s father, a former lawyer whose name he shares, have become immersed in the work, traveling the globe to see what their money is doing and what it still needs to do. When Bill Gates lands in Seattle now his skin is crinkled from days in the hot sun, but his eyes are bright, alive, and shining. His kids won’t join the class of the ultra-wealthy, because in his example they will have something much richer.

The city where I live, Atlanta, was built by men like this. Robert Woodruff, the legendary chairman of the Coca-Cola Co., gave millions of dollars anonymously and didn’t let his role be revealed until near the end of his long life. He did more for the world after his 1955 retirement than he did in building the company. Jimmy Carter transformed the office of ex-President when he left it aged 58, turning the Carter Center into a leading voice for democracy and charity.

Whether you wake up in the pit of despair or on top of the mountain, it’s the waking that matters most. People who are awake go through each day with a smile on their face. They have something to do, their days and lives matter, because they have chosen to make it so. Bernie Marcus created the city’s largest tourist attraction with the money he made as CEO of Home Depot, and has focused his own foundation on the fight against autism.

You can join them. You don’t have to reach the top or see the bottom to do that. You just have to commit to it. Seek meaning over money, value people over wealth, do your part however you can, from wherever you are.

Just wake up.

 #####

Dana Blankenhorn has been a professional journalist since 1978, so he has yet to work a day in his life. He turns 60 in January, and knows he is luckier than most people.

 

15 QUESTIONS

07 May
May 7, 2014

15 QUESTIONS

YOU NEED TO ASK WHEN LOOKING AT ANY LONG-TERM CARE FACILITY

 Martin Bayne and Joy Loverde

1.   What is a reasonable response time from your staff for medical alert devices?

2.     In an industry known for its extraordinary staff turnover, how do you manage yours?

3.      How do your residents and staff keep up-to-date on assistive and accessible technology?

4.      How do you support residents and their families during an end-of-life transition?

5.      How do you integrate new residents into the community? (eg. Welcoming Committee)

6.      What customization do you offer residents regarding food choices?

7.      What off-site transportation services are offered?

8.      What is your average Personal Care Assistant-to-resident ratio?

9.   How often do residents get a comprehensive pharmaceutical audit?

10.   How frequently do you hold resident council meetings?

11.    What provisions have you made for residents who wish to exercise regularly?

12.    What is your policy regarding an overnight guest?

13.   What one book would you recommend to residents?

14.   Give an example of an activity that you are especially proud of?

15.   What one question do you want to ask me?

 

 

Person-Centered Care

09 Apr
April 9, 2014

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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

 

 

A LONELY COWBOY

29 Mar
March 29, 2014

crying_baby

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.

© 2012 Copyright - The Voice of Aging Boomers