Wednesday, July 29, 2009

health care reform, what me worry?

Is anyone else getting a headache trying to follow health care reform?

“What, me worry?” is not an illogical response to the overload of confusion and squabbling, especially when most people have some kind of health insurance.

Or is it? … Almost 5 years ago during a ‘Back to School Night’ at our daughter’s high school German class I stared in amazement at a student created display board of ‘features of Germany’. “Guaranteed Health Care for Everyone” was ranked #1.

Makes me wonder if confusion is intentional?

Players have no motive to change. Physician, medical insurance, and pharmaceutical parking lots look like BMW dealerships while for ‘we the people’ 50% of mortgage foreclosures and 62% of bankruptcies result from health care costs whether insured or not.

What happened to doing the right thing?

As a spouse caregiver for nearly 20 years and living with Multiple Sclerosis as a family we have seen US health care for both its best and its worse. Increasingly it is more like being in the belly of the beast.

Interestingly, this week on July 30th will mark the 44th anniversary of Medicare. While Medicare is certainly not perfect, it was a benchmark in caring as a society and has benefited countless Americans for decades.

‘Great Society’ legislation including civil rights, Medicare, Medicaid, education, and the ‘war on poverty’ were not accomplished with oratory, town hall meetings, public opinion polls, or consensus. President Lyndon Johnson strong armed Congress and twisted politicians’ arms until they did the right thing.

Doing the right thing is rarely the easiest way.

Caregivingly Yours, Patrick Leer
web site:

Monday, July 20, 2009

Caring is as caring does

Today, July 20th, is our 24th wedding anniversary. My 20th anniversary as a spouse caregiver lies 5 months ahead; yes, Patti still has Multiple Sclerosis.

Phenomenal what science CANNOT accomplish.

40 years ago, on July 20th, I sat mesmerized by television images of Apollo 11 successfully landing on the moon. Only a dozen years earlier, I watched the Soviet Union’s Sputnik satellite float across the night sky.

Phenomenal what science CAN accomplish.

Science is as science does.

As pictured, 24 years ago, it was an eclectic reception, cake was traditional attire was not. Foregoing the rote vows of "in sickness and in health ..."; we embraced the poetry of Khalil Gibran.

“Give your hearts, but not into each other's keeping.
For only the hand of Life can contain your hearts.”

In spite of progression of Multiple Sclerosis, home care, and care facility era endlessly redefining our lives, the poetry sings through time.
“Let there be spaces in your togetherness,
And let the winds of the heavens dance between you.
Love one another, but make not a bond of love.”

Caring is as caring does.

In my private daily temple to "if you can put a man on the moon, why can't you cure ..." NASA photos of Apollo 11 decorate our laundry room; one small step for man one giant leap for appliances.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Friday, July 17, 2009

Living with MS is a story of families

“The worst thing that happened during my teenage years was my mother becoming ill. She was diagnosed with Multiple Sclerosis … when I was fifteen. … it was a terrible shock to hear that she had an incurable illness, but even then, I did not fully realise what the diagnosis might mean.”

Anne Rowling died at age 45 after a 10-year battle against multiple sclerosis.

"I was writing Harry Potter at the moment my mother died. I had never told her about Harry." shares author JK Rowling.

Sitting in a movie theatre viewing the midnight release of the latest Harry Potter movie I reflected on how Rowling’s magical storytelling has intertwined our story.

It was 10 years ago “Harry Potter” first came home with us from a book store outing. It was the last Harry Potter book we would ever buy only one copy of.

For Megan and me, midnight book releases over the last decade have kept us awake until our two copies were read cover to cover. Talking book versions for Patti have never captured her attention and midnight anything is not for her.

Living with MS as a family is about more than Multiple Sclerosis itself. Anxiety about family worms its way into your head.

What effect does a parent with MS have on a child? In 1989 there was NOTHING good available, factually or anecdotally.

While we searched in vain, elsewhere Jo Rowling was a research assistant for Amnesty International. Michelle Robinson was a summer associate at a Chicago law firm. Both would shortly loose a parent to Multiple Sclerosis.

“I am constantly trying to make sure that I am making him proud -- what would my father think of the choices that I've made …” Michelle (Robinson) Obama

"Barely a day goes by when I do not think of her. There would be so much to tell her, impossibly much. … Support for people living with MS is as woefully inadequate today as it was (then). She would have found that difficult to understand, and so do I.” JK Rowling

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Monday, July 13, 2009

cursing and swearing and Multiple Sclerosis, oh my!

Cursing and swearing has always been one of the oddest changes in Patti with Multiple Sclerosis progression.

“World-renowned expert in cursing”, Dr. Timothy Jay, Massachusetts College Of Liberal Arts offers:

“Swearing is like using the horn on your car, which can be used to signify a number of emotions …”

(“The utility and ubiquity of taboo words” Perspectives on Psychological Science, April 2009)

Dr. Richard Stephens of Keele University in England concludes

"I would advise people, if they hurt themselves, to swear."

(“Swearing as a response to pain” August 2009 NeuroReport)

Challenging economic times have obviously not affected academic funding for research.

Previously, in caregiving: “Hello! You little brat!” I discussed disinhibition, dysphasia, and dysarthia as factors in MS and speech challenges.

Cursing and swearing is different than language, activating the emotional centers in the right side of the brain, rather than the cerebral communication centers on the left.

While trying to watch “Brüno” at a theatre last night Patti experienced one of her ‘choking-like episodes’. Triggered by a scene Patti found hilarious, obviously too hilarious, communication between her brain and throat muscles went all out of MS whack.

When you factor in all the muscle miscommunication ‘not involved’ in swallowing due to MS related dysphagia and left vs right side who’s in charge here you can get an epic portrayal of choking except that Patti is not actually choking. Calming her, distracting her, ‘rebooting her brain’ are the best ways to resolve these episodes.

Coughing, hacking, and gasping for breath is punctuated with expletives that could turn any theatre into X-rated.

Shortly I found a well intended patron at our side offering to help, exiting into the hallway we were joined by theatre staff.

Patron: “Is she OK?”

Patti: “NO!” (gasp) “I am f@cking choking!” (cough)

Patrick: “Patti you are NOT choking!”

Patti: “Eat sh#t (hack) and die (gasp) muther f#cker!”

Staff: “Should I call an ambulance?”

Patti: “No! (cough) You as*hole. (belch) I need a cigarette.”

At least it is NEVER boring!

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Sunday, July 12, 2009

Multiple Sclerosis and Long Term Care: PROXIMITY

Knowing what I know now, what do I consider the most important factors about Multiple Sclerosis patients in long term care facilities?

Families are at their most vulnerable when wading through the exhaustion, emotions, and confusion of home care vs care facility decision making. Foresight is elusive, on the other hand:

“Hindsight is always twenty-twenty.” Billy Wilder

Over the past five years some factors have become more important than others.

Proximity tops our list!

Continued involvement with family, friends, and home is quintessential. Proximity keeps everyone just a hop, skip, and a jump away. “Out of sight, out of mind” can too easily become a trap of convenience.

In our story, Patti’s care facility is 11 miles away. In 17 minutes I can be there to pick her up for an outing, bring her home for the evening, or simply include her in running around.

Proximity is also about a facility’s neighborhood. Transferring to and from different vehicles may get challenging so it is important to have nearby activities. In our story, it is an easy 15-20 minute wheelchair push through an adjoining park to a mall with a movie theatre, restaurants, and shopping.

Most important to the definition of proximity is YOU, family and friends and how you CONTINUE to be a part of their life in this latest chapter.

Do not expect any facility to replace family. Rumor has it that St. Peter checks his list at the Pearly Gates against the visitors’ lists from long term care facilities.

Life gets busy, carve your involvement in stone. My goal, for example, is to include Patti in 4.5 evenings per week each winding down with me preparing, transferring, and tucking her into her bed myself.

Caring is never about a building it is about people.

For further information, visit Care Facility: Transition to care facility from home care.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Saturday, July 04, 2009

caregiving: Happy DEPENDENCE Day!

(from the Boston Globe)

Our parents raised us to be independent. We raise our children under the same rubric. What we left out is the lesson that caregiving continues through the life cycle.

About 34 million Americans provide at least some of the care for family members and yet we don’t see it as a normal, predictable part of the life cycle.

we retain “this hazy idea that we’ll all be healthy for years and years and then just die.’’ ...

Happy Dependence Day

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

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