Tuesday, February 23, 2010

Adverse Information on Health Care Practitioners

On March 1st, the National Practitioner Data Bank for Adverse Information on Physicians and Other Health Care Practitioners becomes available to hospitals and other eligible ‘queries’.

Originally created 22 years ago by Congress, it was intended as a one stop clearinghouse to check for disciplinary actions taken anywhere in the country against health care professionals.

This expanded version includes not only doctors and dentists but all licensed health care workers such as pharmacists, technicians, nurses, and aides.

ProPublica and the Los Angeles Times offer an investigation into problems with failed oversight, missing data and flaws in reporting and compiling of data by both Federal and State governments. Dangerous Caregivers Missing From Federal Database 

Unquestionably there are pluses and minuses whenever government collects and compiles data no matter how well intended. A month ago in ooops! Government looses hard drive I shared my own experience.

What hits me right up side the head about this data bank is who is authorized to query.
What about ‘we the people’? Are we not the ultimate employers of health care?

What is this … government knows best … hospital knows best … lawyers know best … BUNK! Who is more affected by ‘adverse information on physicians and other health care practitioners’ than the people receiving care?

On the White House web site you can read “My Administration is committed to creating an unprecedented level of openness in Government … Transparency promotes accountability and provides information for citizens …” I guess you can find graffiti anywhere.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Sunday, February 21, 2010

WE laugh in the NOW. I remember for us both.

Pondering the dichotomy of change and caregiving over morning coffee a robin alighted on the snow outside my window. Omens are too weird over the first cup of coffee. I left Stardust to monitor nature’s contradictions while I took my head for a walk.
A month ago I shared in an entry, Whac-a-problem, about a change in Patti’s room assignment at her care facility.

While the change was a week of angst for me, Patti on the other hand summed up the transition, “What room?”

Why does it rub me wrong when a friend shares how much insight they have gained into cognitive decline of a 50 something woman from a fictional novel? Is fiction more ‘understandable’ than real life? Maybe it is.

We have been living a battle with cognitive decline, memory loss, and dementia-like symptoms of Multiple Sclerosis for almost 10 years. Real life is not only exhausting but long, slow and filled with wildcards. It is not as easy to gleam information from.

I think when she cannot. This role I do not enjoy. You pressure yourself so much more when required to think for another.

As a caregiver I replace and keep replacing that which is lost. Is it sad if Patti cannot remember some outing or activity shortly after it happened? I cannot answer for her. I simply conjure up another ‘now’.

‘We’ laugh in the NOW. I remember for us ‘both’.

Tell me grasshopper which is more important, the life we live or the life we remember? 

 Caregiver's Perspective: Multiple Sclerosis and Cognition 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Friday, February 19, 2010

Miss Pickle to marry Mr. Pickle

Some days you just have to smile!

Back on New Year’s Eve, Patti and I enjoyed a fun and totally accessible evening in Dillsburg, PA. Pickle drop at Ireland’s midnight in Pennsylvania 

How could I not smile out loud as I read this morning’s email:

Long-Awaited Wedding Date Chosen!

Dillsburg Area Business Association is pleased to announce the nuptials of “Mr. Pickle” to “Miss Pickle” will be held during PICKLEFEST on Saturday, May 8th, 2010.

The Public Ceremony begins at 11:00 AM. Guests may register at 10:00 AM for $2, at NYCHAPS’ Maple Shade Barn on the corner of Greenbrier Street and Harrisburg Pike. Proceeds benefit the Northern York County Historic & Preservation Society.

Wear official wedding colors, green and purple, or create pickle-themed attire to be considered for selections of Maid-of-Honor and Best Man. All registrants take part in the ceremony and will appear in the Wedding Album.

Dillsburg Mayor Henry “Hank” Snyder will officiate the service. The bride’s gown was lovingly donated by Dillsburg’s “Bon-Ton” Thrift Shop.

You can bet this is marked on our calendar!

"You know you're in love when you can't fall asleep because reality is finally better than your dreams." -Dr. Seuss

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Monday, February 15, 2010

Snow Removal for People with Disabilities

Curb cuts are inadvertent victims of street plowing. Accessible parking spaces do seem to be too frequently used for snow piles. Ramps and inclines can get treacherous.

New Jersey pioneered a “Snow Removal Law” in 1999 to enforce removal of “snow, ice, or other obstacles from accessible parking spaces, curb cuts, and other improvements designed to promote accessibility”.

As a 20 year veteran of Multiple Sclerosis caregiving and wheelchair pushing, I do not believe plow operators, businesses, and homeowners are really criminal minds. I find most people simply overwhelmed by snow storms in general and unaware, bordering on oblivious, of the ripples that deny access to others.

As much as anyone I was thrilled to see snow plows keeping our neighborhood streets open. However where are they going to put it? Here Pennsylvania “may inconvenience the property owner by plowing snow onto the sidewalk rather than allowing snow accumulation to become a hazard on the highway.”

Inconvenience? It was difficult to tell if I was shoveling plowed snow off my sidewalk or spelunking.

While the pictures below may appear to signal my success restoring our sidewalk’s access for Patti, there is also a curb cut still buried under the snow to Patti’s left.

But that is a project for tomorrow. Today was Valentine’s Day, Patti seemed impressed visiting our snow canyon before we headed off to some fun and dinner at Hollywood Casino at Penn National Race Course.

We spent a couple hours enjoying penny slot machine physical therapy with Patti alternating her left and right arms as she pulled the slot machine lever, with of course breaks for cigarette smoking therapy for eye hand coordination. Started with $10 and cashed out with $11.01!

Laughter and good times are accessible. Too often their greatest obstacle is time and effort.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Saturday, February 13, 2010

get your caring mojo going

Once upon a time, by one magical ‘dawn's early light’ …
‘we the people’ were blessed with snow from ‘sea to shinning sea’.

49 states dusted with snow; Hawaii's the holdout 

Get your caring mojo going! Living with a disability is living on the edge whether independent or assisted. There is no extra time in a day.

Embrace winter! Enjoy snow! Look around and CARE. Helpful services such as ‘Meals on Wheels’ are often suspended. Would you like to go without a meal for a day? Wondering why your neighbor’s driveway is not shoveled? Stop wondering – shovel it.

As the inches pile up, so do your chances to care.

Here is an excellent example from the Nation's Capitol:
Schools Ask Community To Help Shovel Out

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Friday, February 12, 2010

'Friends' torture, kill disabled woman

No horror writer could even write much less imagine the following:

A mentally disabled woman was fed vegetable oil, spices, detergent, urine and medications, then forced to write a suicide note, stabbed to death, wrapped in plastic, put in a garbage can and dumped in a school parking lot …

Her head had been shaved, and she had been bound with Christmas decorations and clothing; she also was hit with a towel rack, vacuum cleaner hose and a crutch

Sadly this is not fiction. Five adults and one youth are all charged with criminal homicide and kidnapping, and being held without bond in the Westmoreland County, PA prison.

Jennifer Daugherty had become involved in a community center in Greensburg, PA where she met several people whose names she had mentioned to her family as ‘friends’ - including several whose first names share those of some of the suspects.

Jennifer Daugherty rest in peace.

Pa. family: 'Friends' torture, kill disabled woman

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Thursday, February 11, 2010

activities of daily living / child of the north wind

While a snow storm may temporarily inconvenience “the things we normally do in daily living” imagine your personal activities of daily living (ADL) slipping out of your control permanently.

Multiple Sclerosis is a relentless and random thief of one’s abilities to perform ADLs. There is no thawing change in seasons.

Maybe it is because winter and snow have always been energy sources for both Patti and I that the unfairness of MS seems more outrageous.

Patti was an avid skier and with her long term memory more vivid these days than her short term memory well snow storms trigger recollections of slopes of powder. All the more I wanted to rail at the heavens when I went to pick her up for our pre-blizzard outing and watched her needing the assistance of three aides plus a Hoyer lift and sling to get out of bed, changed, and dressed.

Instead I found strength from her good spirit and laughter through it all. No lift tickets these days but instead a wheel chair accessible smoking lounge on wheels.

Heading back home it was time for me to take on Winter. Since Punxsutawney Phil saw his shadow on Groundhog's Day, 40” (1.02 m) of snow has fallen on our little piece of the Earth.

Piles of shoveled snow plus drifts are getting rather epic. Media talking heads claim we have more snow than the Vancouver Winter Olympics.

Conditions were so bad on Wednesday birds took shelter in our lilac bush shielded from blizzard winds.

While I battled to keep the driveway clear, township snow plows arrived as the storm was kissing us good bye. Trying to maintain our tradition of picking Patti up for a post storm outing I was foiled as Pennsylvania closed three major Interstates, which in turn transformed secondary roads into parking lots.

Alas! At least as a fellow child of the north wind, Patti knows that sometimes the mountain wins.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Saturday, February 06, 2010

shoveling snow for a cat

22 inches (56cm) of snow can affect life, yet cats help us all keep it in perspective. Our cat, “Stardust” could not push open the flap on her cat window this morning. It was time for yours truly to get busy, and supervised.

Before I could start on our vehicles and driveway, additionally a cat trail was necessary in the back yard.

Back in December a 22 inch (56cm) snowfall left me stranded for two nights. This time it was on my home court, bring on the rematch!

Unquestionably heavy snow falls also affect both visiting and/or outings with Patti. There is some intangible balance between safe travel conditions and keeping Patti part of life outside her care facility walls.

"Neither snow, nor rain … stays these courageous couriers …” Yes, the Greek historian, Herodotus was referring to Persian mounted couriers, 2500 years ago, but it equally applies to caregiver mentality.

So we bookended the snow storm with outings. Lunch and errands as the first snow flakes fell, Friday afternoon. Then after spending today shoveling, I managed to navigate our wheel chair van for a Saturday evening outing.

Interestingly I found Patti already in bed when I arrived to pick her up. She told me she was not feeling well and had been throwing up all day. Not that I do not believe her but I know that Multiple Sclerosis related memory loss and mental confusion sometimes gets the better of her. Checking with nursing staff and aides they were not aware of any vomiting, nor had Patti complained of not feeling well. Whatever! The offer of an outing and a ‘smoke’ instantly cured the patient and she was ready to roll.

While we managed to be out and about, few others could say the same. “Pennsylvania Gov. Ed Rendell declared a statewide disaster emergency … National Guard forces were deployed to help state police” Unfortunately, not much was open, even McDonald’s was closed!

Yet one wheelchair van rolled through the streets with two occupants having a grand old time enjoying the snow.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

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