driving through the shadow of death

Paperwork is more than a job when you are a long term caregiver. As paperwork is more than a job for the bureaucracy of facilities and organizations involved in long term care.

Someone got a creative and efficient idea in their head for these economic times and decided to try assigning long term care renewal paperwork to the more underpopulated and theroretically less overworked offices.  

I have no problem with creative efficiency in bureaucracy. Overworked is only a proven formula for mistakes.  

I embrace new ways with guarded optimism. There is a part of me that can never quite shake a conspiracy theory that jumping through all the hoops, dotting all the i’s and crossing all the t’s are some kind of litmus test rather than need.  

With all that being said and discovering the newly assigned office had neither email nor voice mail, I was not about to entrust the renewal paperwork to the mail.

And so I headed out on what became an over three hour round trip drive through mountains and up and down others.

Let me tell you - there is nothing quite like driving through the ‘shadow of death’ not once but twice…

Forget my original concern about email and voice mail,  I began to wonder if there were even cars …

Maybe I'm just a tourist at heart, but a tractor parked on top of a boulder in the middle of nowhere - now, that's a photo opportunity ... 

Yet most amazing of all when I delivered the paperwork - the clerk said “thank you”. I am still trying to remember when, if ever, anyone has ever said ‘thank you’ when I handed them a batch of paperwork.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

The Murder of Mental Health Caring

… "There is something very wrong with a country that has no qualms about spending tens of millions and more for Libya and other wars, and that so nonchalantly defends austerity measures that cut vital services to its own weak and needy." ...

The Murder of Mental Health Caring 

by Carol Smaldino

…” My intent is not to scapegoat one state or one department despite my shared anger and grief” …

… "We are all responsible for caring, and for the lack of caring for some over others …”

…” So many of us have been watching our nation detach from the caring we speak about through anthems and promises and dreams. The American Dream was to include everyone …”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

caregiving IS an art

Caregiving is an art, and like all arts has its own laws.

Some may try to create rules, licensing or regulations.

Some may try to define it with labels and formulas.

Some may try to embrace while others may look but never see.

Each and every person giving, needing, or accepting care brings infinitely unique variables to each situation.

A parent caring for a child paints with more shades of dreams. An ‘adult child’ caring for a parent paints with more hues of memories. A long term spouse caregiver paints a canvas where the years spent caring dwarf the years spent sharing. 

Dark brushes haunt, reaching for color takes heart not hands.

Medicine is a science, caring is an art.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

Jubilee Day 2011 dancin’ in the rain

It was a perfect morning 66°F (18.9°C) for an outing to Jubilee Day with summer heat sensitive Multiple Sclerosis.

Then it got challenging - arriving where we’ve always parked at Simpson Library, I was surprised to find wheelchair van designated and handicapped spaces occupied or obstructed by both a Cumberland County Library System vehicle and a contractor, Weaver’s Glass. There was a wide open curb adjacent to the entrance which neither able bodied driver “chose” to use.

While Patti enjoyed a ciggie, I “shared” my feelings with drivers.  

Then, back to fun – rolling the streets an hour before Jubilee Day ‘officially’ opens makes a big difference when your view is from a wheelchair - a forest of buttocks is no one’s idea of fun. Everything is ‘actually’ open anyway.

Plus there are no lines at yummy treats like pumpkin funnel cake. Patti’s parents (in right of picture) even joined us this magnificent morning.

Then the best laid plans of mice and men went astray as .8 inch (2.03 cm) of rain steadily fell over the next hour. No rain was forecasted so I had removed our rain gear from Patti’s wheelchair backpack to make room for shopping. J

While Patti and her parents enjoyed the sounds of Jazz Me under a tent, I walked back to our van. Now I have never met a puddle I don’t like. Give me an umbrella and well soon those splashes take on rhythm – “doo-dloo-doo-doo-doo-doo... I'm singin' and dancin' in the rain!”

Sheathing my umbrella and quelling my dancing feet I rain-proofed Patti in poncho and Buggy Bag® lap blanket, donned my own poncho and my happy feat pushed our rain proof selves onward.

To cap off our annual Jubilee Day outing we discovered our wheelchair van is also a perfect all-weather picnic gazebo for two, enjoying a lunch of pulled pork sandwiches with a medley of tempura vegetables (onion rings, mushrooms, zucchini, and cauliflower with ranch and horseradish dip).

Veni, vedi, vici and a doo-dloo-doo-doo …

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

greeking Medicare Medicaid

Email from Medicare & Medicaid Services is usually rather bland and innocuous. So this morning’s adventure into greeking was certainly a different way to start the week.

Centers for Medicare & Medicaid Services

Headline 1

Lorem ipsum dolor sit amet, consectetuer adipiscing elit …

Headline 2

Lorem ipsum dolor sit amet, consectetuer adipiscing elit ...

Headline 3

Lorem ipsum dolor sit amet, consectetuer adipiscing elit ...

You are receiving this message because you subscribed to get email updates from the Centers for Medicare & Medicaid Services (CMS)

Placeholder text? Nonsense Latin? Or perhaps a homage to Cicero? … “Neque porro quisquam est qui dolorem ipsum quia dolor sit amet, consectetur, adipisci velit” . . . "There is no one who loves pain itself, who seeks after it and wants to have it, simply because it is pain” – Now there is a message to SHARE!

Or maybe, just maybe, one day someone may have to click on your computerized medical record or you may need to access some vital medical information and you may read "Lorem ipsum ..."  Beware of Greeks bearing gifts - especially if they are speaking Latin.J

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

media face of autism

Earlier this month I wrote an entry on the media face of Multiple Sclerosis and its impact on living with MS.

I found a similar concern written by Anne Dachel of Age of Autism, Autistic: Different vs. Disabled and Media Portrayal

... “I came across the story, "Being different: The marvels of the autistic world," … I thought immediately about the countless parents I know in the autism community.  Autism has destroyed their dreams, bankrupted their savings, and shattered their lives.  Who would dare to trivialize their suffering with a title like that? “ ...

  … There is a concerted effort by medical organizations and health officials to make all the sick kids the NEW NORMAL. … We're making autism into something acceptable, just a part of childhood ...

 ... What I see happening is one huge distortion of the term AUTISM.  Clearly, if we label enough people AUTISTIC, the word will lose all meaning ...

 ... The public is being led to believe that autism is something much different from what it really is.  Hidden from sight are the hundreds of thousands kids out there who are struggling with severe autism.  These are the children we never see in the news reports on autism awareness ...

 ... I've noticed over the years that the TV networks along with their big affiliates and major papers don't like to talk about approaching tidal wave of adult autism ...

   

Both Multiple Sclerosis and Autism have recently completed awareness campaigns, yet I would bet money that most Americans could tell you more about a US Congressman tweeting pictures of his body parts than what it is like to live with either diagnosis. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

once we were yuppies

Sometimes voices from the blogosphere get stuck in my head or maybe they’re hallucinations from mowing the lawn at 100°F (37.8°C).

As a caregiver, I live in the world altered by Multiple Sclerosis but I must also live and work in the upwardly mobile world.

I stand with a foot on each side of a widening chasm, one moment I may be trying to share the excitement of someone’s upcoming able-bodied vacation plans, then only hours later trying to find anyone to share or even grasp my excitement over a successful one person transfer of Patti from wheelchair to bed.

Once we had two incomes and yes with two cats in the yard our house was a “very, very, very fine house”.

This entry from a blogger with MS has stuck in my mind for almost a month. I suspect it captures a universal truth.

Kaleidoscope Muff: I Live In A Broken Home  

“What I mean is that everything around here is breaking! …… plans were heaped on the trash pile once I stopped working, along with so many other things. … … that has to go on the ‘must do’ list. Each time something goes on that list, something from the ‘want to’ list suffers … …  I so wanted to start on the ‘want to’ list, but that keeps fading more and more into the background. I think with MS and disability, that must happen a lot.”

"Disability is part of the human condition," says Margaret Chan, director-general of the World Health Organization. "Almost every one of us will be permanently or temporarily disabled at some point in life. We must do more to break the barriers which segregate people with disabilities, in many cases forcing them to the margins of society."

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

RX laughter / MSFocus magazine

No doubt that laughter is medicine and Multiple Sclerosis Foundation’s MSFocus Magazine, Spring 2011 is all about laughter and living with MS.

It’s also kind of cool to find Patti and myself on pages 50-51, “Mooned By Snails”.

“…If you ask us whether it was easier to laugh together before MS, we both will smile and evoke the memory loss defense. MS brought new dimensions; our sense of humor evolved. As a caregiver, I discovered the reward of a slapstick laugh the first time I ran over my own foot with a wheelchair. Patti’s MS-induced pseudobulbar affect flips emotional tables – she laughs at funerals. …

… Oh, we are never boring to be around. Humor as intervention can disarm anxious strangers, friends, and family.

‘Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing.’ ...

A giggle can change a mood; a guffaw is as good as any medicine. You cannot do much about multiple sclerosis, but you can do a lot about living with multiple sclerosis. Some situations are just funny, and sometimes as a caregiver it takes a little clowning around to get the laughter going …

… EDSS>8 and ADL<1 may be quantitative measurements of Patti’s MS, but I would like to think that laughter is a better measurement of quality of life. And, well, sometimes it takes a little help from those darn snails.”

To view on line edition click MSFocus Spring 2011 also available in pdf format 

While the blogosphere has always been home for Caregivingly Yours, it was both challenging and fun to rewrite an entry as a magazine article. Special thanks to Multiple Sclerosis Foundation (MSF) for believing our story of living with MS was worth including. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

Kevorkian and Multiple Sclerosis

Reading of the death of Jack Kevorkian, I could not help but pause and reflect.

Years ago I read an article in the Detroit Free Press chronicling those who had sought out his assistance.  Most did not have a terminal illness, in fact progressive Multiple Sclerosis often was the diagnosis.

At the time, we were stumbling around through not only just such a diagnosis but the daily realities. Patti was rapidly loosing her physical and cognitive abilities and facing a future of life long dependence on others.

“Right to die”, “assisted suicide”, “murder”, “right and wrong" and "quality of life” were words soon argued by lawyers, courts, advocates and media.

Lost in it all, was always the unimaginable choices made by those ‘real people’ facing a futureless future.

It’s a good day to ask ourselves individually and as a society, what have we done to make a dependent future any more civilized? Dignified? Caring?  

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

the media face of Multiple Sclerosis

World MS Day was just a week ago. Googling through Multiple Sclerosis news for the past week I was somewhat surprised to see the media face of MS.

Believe stress makes MS worse? Is Multiple Sclerosis And Stress Related? New Study Says No

Don’t forget to take your Vitamin D! “Multiple sclerosis springs from environment, metabolism and genes interacting with Vitamin D” Multiple sclerosis mechanism uncovered

It’s tick season so this one not only makes sense but also touches on the complications in diagnosing MS and/or a misdiagnoses of MS. “Notorious in medical circles as a great imitator, Lyme disease …mirror other conditions like multiple sclerosis and fibromyalgia.” Pennsylvania leads country in Lyme disease cases

MS awareness is obviously low in the criminal community. man with multiple sclerosis has wheelchair stolen

In the UK, one hand prescribes Sativex while the other refuses to pay for it. MS patients denied licensed cannabis drug by NHS 

Yet through it all, the ‘business’ of Multiple Sclerosis has been a steady source of news. “The MS market is a lucrative and high-margin one, with many treatments costing about $40,000 a year. The current top selling drugs … generate combined annual sales of about $11 billion.” Stocks to watch in the MS drug market 

$11 billion is apparently just not enough as Bayer (maker of Betaseron) is reportedly cutting 540 jobs out of California economy and outsourcing their plant to Germany. Is ‘outsourcing’ to Germany correct media usage, when Bayer is a German company?

Could any week be complete without pop culture … Meredith Viera doesn't want to be known as the woman who quit her high-paying job to take care of her ailing husband with Multiple Sclerosis.

Living with MS one does not really need a weatherman to tell you which way the wind is blowing. Yet for the public, those newly diagnosed with MS, or family and friends of someone with MS the media face of Multiple Sclerosis does make a difference. Information and awareness is NOT the same thing. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer