Tuesday, November 23, 2010

Pilgrims, Wampanoag, and hand turkeys

   Who would have thought when those Pilgrims and Wampanoag gave thanks in the autumn of 1621 they were starting the dysfunctional holiday to end all?

   Keep your eyes on people in Pilgrim attire. Only 57 years after attending that first Thanksgiving, the Wampanoag chief’s grandson was sold into slavery.

   While for those descendents of Pilgrims, well this is also the 45th anniversary of another Thanksgiving Day in Massachusetts, immortalized by Arlo Guthrie, “You can get anything you want at Alice's Restaurant .

   Bring on the hand turkeys! Kudos to Rethink Autism for their “The First Thanksgiving” project, where children with autism will have a chance to see their own "hand turkey" art featured in an animated cartoon, on the Rethink Autism home page as well as on Facebook, iTunes, and YouTube. Children with Autism Create Thanksgiving Cartoon

   I know caregiving and it can be isolating. This use of social media to create a collective story sounds intriguing. And challenged or not, the eyes of children see the most extraordinary views.

   Oh! Samoset, what were you thinking, when you first walked into Plymouth in Spring, 1621 and greeted the Pilgrims in broken English? Imagine if you had greeted them with this year’s travel salutation, “don’t go touchin’ my junk”? Then again, you were wearing a loin cloth, rather visionary for travel attire.

   Twenty-one Thanksgiving mornings ago Patti who had gone to bed able-bodied, awoke unable to walk, see, barely talk and finished that Thanksgiving Day hospitalized with her first Multiple Sclerosis exacerbation.  … While holding our then 18 month old daughter in my arms, I began the journey of caregiving.

   On Thansgiving Eve 2010, Patti will awake in a care facility requiring the attended care of staff for the activities of daily living and a lift to get out of bed. ... While elsewhere a turkey will awake in the Willard Hotel, be chauffeured to the White House to be pardoned by the President, driven to a new home at Mt. Vernon in a horse-drawn carriage and be greeted with a trumpet fanfare?

… What’s in your Thanksgiving? J

Caregivingly Yours, Patrick Leer 

Saturday, November 20, 2010

Sweets for Your Sweet Caregiver Appreciation Month

“Over 25 million Americans provide unpaid, long-term care to loved ones. The National MS Society, Central PA Chapter is asking for your help in celebrating these special caregivers who live in the Central PA Chapter area. In honor of these extraordinary people, the National MS Society, Central PA Chapter would like to help care recipients recognize their primary caregiver and to let them know how much they are appreciated.

Honor your caregiver by having the National MS Society send a chocolate “Heartfelt Thanks” candy bar.

If you would like the National MS Society, Central PA Chapter, to send this gift of appreciation to your caregiver, please call our office at 1-800-227-2108
or email us at: pacvolunteer1@nmss.org.
Share with us your caregiver’s name and mailing address along with your full name (please limit to two primary caregivers and to residents living in our chapter area) and we will send out a

Heartfelt Thanks candy bar
along with a note to say “THANK YOU”."

Caregivingly Yours, Patrick Leer 

Thursday, November 18, 2010

Financial Help for Caregivers

From November/December 2010 Newsletter Centers for Medicare and Medicaid Services ...
 Financial Help for Caregivers
"There are several programs that can help you save money on Medicare premiums, drugs, or basic living expenses. Make sure you explore these options:

   There are programs that help millions of people with Medicare save money each year. States have programs for people with limited income and resources that pay some or all of Medicare’s premiums and may pay Medicare deductibles and coinsurance.

   You may be able to get extra help to pay for the monthly premiums, annual deductibles, and co-payments related to the Medicare Prescription Drug program.

  Many states and the U.S. Virgin Islands offer help paying drug plan premiums and/or other drug costs. Select a state or territory below then click “Search” to see if any programs are available in your area.

Explore national and local charitable programs with Benefits Check Up, created by the National Council on the Aging (NCOA)
   "As of Thursday, November 18, 2010 we have helped 2,645,136 people find over $9.1 billion worth of the annual benefits they deserve."

Visit GovBenefits.gov to learn about government assistance programs
   What is Benefits.gov? The official benefits website of the U.S. government - Informs citizens of benefits they may be eligible for - Provides information on how to apply for assistance

Apply for Medicaid
   If you can't afford to pay for medical care right now, Medicaid can make it possible for you to get the care that you need so that you can get healthy and stay healthy.
... of course, this newsletter was likely prepared before recent elections, and well politics can leave programs like leaves twisting in the wind  …

"Previewing the partisan healthcare battle to come next year, the Obama administration's new head of Medicare and Medicaid squared off against irritated Republicans on Capitol Hill for the first time Wednesday in a renewed debate over the healthcare overhaul …"

Caregivingly Yours, Patrick Leer 

Monday, November 15, 2010

wheelchair accessible Gettysburg

   Wheelchair accessibility certainly met some peculiar challenges at Gettysburg.

   Why are “low emission” parking spaces closer than over half the handicapped parking spaces to the Visitors Center entrance? Are “fuel efficient” cars embarrassed to park among regular cars? 

   Automatic doors to the visitor center are reminiscent of a prank. Rolling up to double doors the “automatic door” button is located on the door jam of the right door; however pushing the button opens the door on the left. A person in a wheelchair needs to turn and scoot to their left then right through the automatic door before it closes. Why doesn’t the button simply open the door in front of you or both?
   We tried querying ol’ Abe but Patti got to laughing too hard after running over his foot with her wheelchair.

   Bottom line is that outside of the above weirdness the miles of paved trails and roads of Gettysburg Battlefield were absolutely perfect for rollin’ around on a 64°F (17.8°C) day in November.

   Gettysburg has been part of my life even when the cannons were taller than me.

   Historic Gettysburg was tempting for our growing appetites, however historic and accessible requires advance work to be reliably fun. Instead we rolled back to our van and headed to the food court at The Outlet Shoppes at Gettysburg. You can always rely on malls.

   With everything decked out for holiday shopping we sat around a Christmas Tree and had dinner with Auntie AnneJ With its roots in Pennsylvania farm markets I have to take my hat off to the pretzel logic of cinnamon sugar pretzel nuggets and pretzel dogs (pretzel wrapped around hot dogs). Considering Patti’s Multiple Sclerosis symptoms that affect her physically feeding herself it was effortless, mess less and that’s a treat.

   Watching the sun set on the field of Pickett’s Charge, where over 8,000 American casualties 
consecrated this one field with their blood on July 3, 1863, eternity echoes “never forget what they did here … that government of the people, by the people, for the people, shall not perish from the earth.”

Caregivingly Yours, Patrick Leer 

Sunday, November 14, 2010

wheelchair shawty

Entertainment has been argued from Aristotle through Nietzsche and likely always will be.

Southern rappers, D'Money N Smoove are bumpin’ the boundaries with their latest song / dance / video “Wheelchair Shawty”

Reactions will likely range from “disrespect” through “imitation is the sincerest form of flattery”. I suspect the intention is nothing more than dancing and making money.

Watching it as someone who has pushed a wheelchair for decades and would never allow anyone to ‘diss’ Patti for using a wheelchair because of her Multiple Sclerosis, I confess I was slack jawed at first but … (and go ahead and beat me, whip me, and make me write bad checks) by the end I was up and doing my best old white guy impression of the wheelchair shawty. And that is an image you do not want to see. J
“wheel wheel wheel let it go
wheel wheel wheel let it go
Wheelchair Shawty”

Caregivingly Yours, Patrick Leer 

Saturday, November 13, 2010

celebrating national caregivers month

Surrounded in cheers and with confetti raining down all around me …  

disembodied voice: “Patrick, it’s National Caregiver Month. This will be your 21st year as a caregiver! What are you going to do?

Patrick: “We’re going to Disney World! Aren’t caregiver’s free?”

disembodied voice: “Uhhh, no, that offer is for overpaid athletes playing games.”

Patrick: “Ok, then we’re going out to dinner. Restaurants must have a Caregiver month special!”

disembodied voice: “Uhhh, no.”

Patrick: “Then it is the movies! Theatres must have a caregiver attends for fee deal for November.”

disembodied voice: “Uhhh, no”

Patrick: “Maybe free popcorn?”

disembodied voice: “Uhhh, no”

Patrick: “Free coffee at Starbucks?”

disembodied voice: “Uhhh, only if your birthday is in November.”

Patrick: “What a about Big Pharma? Free RX refills?”

disembodied voice: “Uhhh, only if hell freezes over in November.”

Patrick: “Respite care? What about you disembodied voice’, want to push Patti’s chair for a while?

disemobodied voice: “Uhhh, remember I am dis-embodied.”

Patrick: “Ah, yes, sorry about that.”

Patrick: “OK, Patti what about you? It’s National Caregivers Month and this will be my 21st Anniversary!”

Patti: “So?”

Sooo … I broke into my best Sam Cooke …

hooh! aah! hooh! aah! Well, don't you know
That's the sound of the men working on the chain ga-a-ang”
… and we headed off to the Warm Hearts Café for dessert, hot chocolate and the music of the Buc Hill Aces 

   Because of her level of Multiple Sclerosis symptoms Patti somewhat engages in a one woman food fight with herself whenever she eats or drinks, except when attending a Buc Hill Aces performance.

   I will never cease to be amazed at whatever affect their mix of ‘Old-Time music’, gospel, blues, storytelling, and humor have on Patti.

   Bottom line, it’s fun to have fun even if there are no perks for caregivers during National Caregiver Month.

   Wait just a minute, it was a wheelchair accessible coffeehouse and for National Caregivers’ “backs” Month - now that is a perk and a half!

Caregivingly Yours, Patrick Leer 

Wednesday, November 10, 2010

caregivers of veterans

Caregivingly Yours salutes ‘caregivers of veterans’.

I thought I had seen everything until I read a report released today from the National Caregiver Alliance that caregiving grows more complicated and demanding when the people cared for are combat-era veterans with service-connected disabilities and illnesses. 

Everything about this is wrong. The report should have a ‘shock and shame’ affect on we the people. Politicians get too much mileage out of legislation that is swallowed by bureaucracy.  We NEED to make this right!

“They lost legs and I walk.
They lost minds and I think.
Sometimes, they lost lives and I live.
I am grateful to them. Grateful!”
Maya Angelou

How paradoxical that on this same day, ground was broken in Washington DC for a disabled veterans memorial?  The American Veterans Disabled for Life Memorial 

Caregivingly Yours, Patrick Leer 

Tuesday, November 09, 2010

new healthcare: don’t ask don’t tell

   With my first annual check up since healthcare reform approaching, I received a letter from my doctor’s office.

   Reaching for my letter opener I mused, “Ooooh! Let’s see what healthcare reform has brought?”

“If we choose to address any health problem or concern at the time of the preventive physical, we will bill you an additional visit … and some insurance companies add a second co-payment … “ 
“…many patients feel this is a time to also ask us to evaluate problems or concerns … these issues take away from the time we have scheduled to spend with you …”

WTF! What happened to the much ballyhooed preventive services?  Health questions or concerns take away from ‘our’ time spent together? Who wrote this? … Is arguing with a piece of paper considered a health concern? OMG, I just cost myself four co-pays.  

Jumping on line to healthcare.gov I learned the error of my thinking. It seems the trumpeted preventative services (at no additional cost) of the Affordable Care Act apply to people enrolled in health insurance policies "created after" March 23, 2010.

So since I had existing health insurance, let me get this straight. If I do not ASK about any health problems or concerns, and my physician chooses not to TELL me about any health problems or concerns then … well, ‘yes we can’ be healthy. You just gotta love Obamacare.

Caregivingly Yours, Patrick Leer 

Friday, November 05, 2010

who says you can't change time

   “Benjamin Franklin conceived of it. Sir Arthur Conan Doyle endorsed it. Winston Churchill campaigned for it. Kaiser Wilhelm first employed it. Woodrow Wilson and Franklin Roosevelt went to war with it, and the United States fought an energy crisis with it.” SEIZE THE DAYLIGHT: The Curious and Contentious Story of Daylight Saving Time

   While there are unquestionably well intended reasons, changing time just somehow captures the essence of government meddling in daily living.

   In 1918, Congress placed the country on Daylight Saving Time (DST) for the remainder of WW I

   In 1942 Congress reinstated DST for duration of WWII.

   From 1945 to 1966, we were a free time nation.

   In 1966, The Uniform Time Act created DST to begin on the last Sunday of April and to end on the last Sunday of October.

   In 1973, following the Arab Oil Embargo, Congress put most of the nation on extended DST for two years.

   In 1986 President Regan modified DST from the last Sunday in April to the first Sunday in April.

   In 2005 Congress passed The Energy Policy Act and Daylight Saving Time begins three weeks earlier than previously and is extended by one week. Begins 2 a.m. on the Second Sunday in March and lasts until 2 a.m. on the First Sunday of November

   Any area that wanted to be exempt from DST could do so by passing a local ordinance. As many know there are such places and it can be maddening driving between past and future while running errands and such.

   Perhaps it’s best just to enjoy it
"An extra yawn one morning in the springtime, an extra snooze one night in the autumn is all that we ask in return for dazzling gifts. We borrow an hour one night in April; we pay it back with golden interest five months later." -Winston Churchill

    … and don’t forget to feel the power of changing time this Sunday, November 7th

Caregivingly Yours, Patrick Leer 

Wednesday, November 03, 2010

accessible voting - it's not for everyone!

   “Suppose I think they are all a#*holes?” Patti quipped.

   Nearby voters chuckled, but our young poll worker who had just finished advising a 'disabled voter' on voting and had asked Patti if she had any questions about the ballot, was speechless.

   Was this about MS speech challenges? Perhaps a reaction to the ever so subtle changes in the way some people unintentionally ‘talk down’ to a person in a wheelchair? … Whatever voting with us is never boring.

   Voting is also cyclical and elections become a timeline of both progression of Patti’s MS symptoms and accessibility of voting.

   Today’s touch screens on stands are so much more accessible for a far more progressed Patti than a memorable Election Day, 14 years ago in Maryland.

   There because Patti was visually disabled she had to be accompanied into a voting booth by three poll workers representing Democrats, Republicans, and Independents.  After each read a prewritten statement for each lever, three little old ladies would insist Patti pull the lever herself supporting her each time to a standing position. (Possibly an early test for gitmo detainees in lessons of democracy?)

   Anyway that is how it was ‘supposed’ to happen. If a TV football commentator been there to draw ‘the play’; well it actually went something like this.
    Patti looses balance while being supported by three little old ladies and grabs the voting machine for support. Voting machine begins to tip over.

   The little old ladies, about to be crushed, push the falling voting machine in the opposite direction. Patti looses her grip and falls into her wheel chair. Without Patti’s resistance the voting machine now begins to tip over in the other direction. The little old ladies race to the back of the machine to keep it from falling, bumping into and startling the voter behind the curtain in the machine to the right who shrieks.

   Meanwhile, back in Patti’s wheelchair she had not set her brakes. When Patti falls into her chair she shoots out in the opposite direction slamming into yet another voting machine on the left. The impact bumps the machine a couple feet knocking down its now yelling occupant.

   I can see Patti is absolutely unharmed but I cannot tell if I am watching a Three Stooges movie or if this is really happening. Myself and others waiting to vote are laughing so hard eyes are watering.

   With chaos reigning, one voter still on the floor, another in-hiding behind their curtain, poll workers assembling in a  chorus of anxious shrieking and all of which is being drowned out by laughter from the audience of waiting voters … Patti calmly rolls up to huddled poll workers and exclaims, "Excuse me, I don't believe I finished voting."  

   Accessible voting - it’s not for everyone! J

Caregivingly Yours, Patrick Leer 

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