caregiving theatre 1000

When government officials use “we” and “caregiving” it always leaves me feeling a bit like I am watching caregiving theatre. I want to believe but experience can be skeptical as I read HHS Secretary Kathleen Sebelius claim “These new grants ($60 million), authorized under the new law (Affordable Care Act), will help seniors, individuals with disabilities and their families get better quality care and more control.”

Sounds great! … but in the REAL world outside Washington DC, a $6 million cut for the Mental Retardation Waiver program to help balance the Pennsylvania state budget ripples into a $19 million dollar cut to overall programs for people with intellectual disabilities because a State cut equals loss of matching Federal funds. Families battle autism, government funding 

Robbing Peter to pay Paul? Befuddlement spell? Something sure does not make sense and ironically that may be the only thought that does make sense. It is possible that government may never actually grasp caregiving.

Blogger Dashboard informs me this is a loquacious milestone, my 1,000^th post since Caregivingly Yours’  first entry on transition from home care to care facility,“End of an Era” on April 27^th, 2004, originally on AOL Journals.

It is overwhelming to me that between Caregivingly Yours blog, videos, and website that our story has been visited over a quarter million times …

... from 80 countries in 40 languages.

Pondering all this I honestly wish our story was no one’s story. I wish there was no Multiple Sclerosis, Autism, chronic illness, or disability to write about.

I wish I could write fairy tales. Instead I share a story of living among real people challenged to live heroic lives.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

Accessible adaptive vehicles Pennsylvania

We struggled for longer than we should with Patti’s failing ability to transfer from wheelchair to our car. In part this was ignorance of options. Caregiving does not always leave a lot of time for searching especially when you are not exactly sure what you are searching for.

These days while out and about using our wheelchair accessible van we often attract inquiring minds and answer questions as best we can.

It occurred to me that since the journey from need to finding an adaptive vehicle is still pretty much a needle in a haystack compared to conventional auto shopping that I should compile a list of Pennsylvania adaptive vehicle facilities offering modifications and service. Most additionally sell wheelchair accessible vehicles both new and previously owned.

So, if you want to ask some questions AND kick some tires …

VCI Mobility

www.vcimobility.com

Norristown, PA

800-784-8267

Galbreath Mobility

www.galbreathmotorco.com

New Castle, PA

724-656-1075 / 724-656-0866

Haveco

Harrisburg, PA

717-558-4301 

Keystone Coach Works

www.keystonecoachworks.com

Bethel Park, PA

412-833-1900

MITS Corporation

www.mitscorp.com

Glen Rock, PA

800-243-6487

MobilityWorks

www.mobilityworks.com

Wall, PA

877-275-4907 / 412-824-8091

Ride-Away handicap equipment corp

www.ride-away.com

Norristown, PA

888-743-3292

Spliter, Inc

www.spitlerinc.com

Montoursville, PA

570-368-1771

Total Mobility Services

www.tmservices.com

Boswell, PA

814-629-9935

WEBB Medical Systems

www.webbmedicalsystems.com/adaptive-driving-systems.asp

Shillington, PA

800-266-6633

While more random, it is not impossible to find an adaptive vehicle on a local car lot, and you can find adaptive vehicles through classified advertising both local and interstate such as Disability Dealer Magazine.

Money is ALWAYS a factor and “The Pennsylvania Assistive Technology Foundation (PATF) is a non-profit organization that provides low-interest loans for people with disabilities so that they can buy the assistive technology devices and services they need”.

Pennsylvania Assistive Technology Foundation  www.patf.us/

King of Prussia, PA

888-744-1938

Realizing this blog is also read outside of Pennsylvania, click on Alternative Financing Technical Assistance Project for assistive technology loan programs in other states.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

storm caregiving

Severe thunderstorms swaggered through with 60 to 70 mph (97 to 113 kph) winds and the deluge of kong. While down came the heat and humidity so too did trees, branches, and power lines.

Physical and/or cognitive symptoms of any chronic illness or disability change any equation. Living with caregiving and Multiple Sclerosis for 20+ years severe weather is never quite just a news story.

                                                                 

Later picking up Patti for an outing she shares with me only that the storm was “very annoying and loud” as she finished her dinner sitting in front of her room air conditioner in a personal oasis.

Oh yes, though while lost in her memory, there was a power outage. Emergency lanterns were still visible though no longer in use. Portable fans were in abundance in halls and common areas to assist central air conditioning working overtime to recapture down time. Phone system was still not totally up and running. Cable TV was still out.

Neighboring buildings residential and commercial were still without power. Driving was interesting to say the least with many signal lights not working and downed tree branches rerouting traffic.

Facility emergency generators unquestionably help and power companies do somehow prioritize medical necessity.

Power outage began during a shift change so actually twice the staff was around to respond and assist residents. Some times you just get lucky.  

When nature decides to shock and awe, attended care is a godsend.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

caregiving as an existential quality

Emails from people I do not know is all part of blogging about caregiving. A recent email from Harvard Magazine caught my attention. Caregivingly Yours is honored to share their requested link to this month’s magazine.  After all there is NO admission criteria to caregiving.  

“... I am not a naive moralist. I’ve had far too much experience of the demands, tensions, and downright failures of caregiving to fall into sentimentality and utopianism. Caregiving is not easy. It consumes time, energy, and financial resources. It sucks out strength and determination. It turns simple ideas of efficacy and hope into big question marks…”

“On Caregiving” in current Harvard Magazine, opens a poignant and unique window shared through the eyes of Arthur Klienman, caregiver for his wife Joan and professor of medical anthropology and psychiatry at Harvard Medical School.

“… It can amplify anguish and desperation. It can divide the self. It can bring out family conflicts. It can separate those who care from those who can’t or won’t handle it. It is very difficult. It is also far more complex, uncertain, and unbounded than professional medical and nursing models suggest…”

“… economists configure caregiving as “burden.” Psychologists talk about “coping,” health-services researchers describe social resources and healthcare costs, and physicians conceive it as a clinical skill. Each of these perspectives represents part of the picture. For the medical humanities and interpretive social sciences, caregiving is a foundational component of moral experience…”

“… As a scholar, I engage with other medical humanists to understand the dimensions of this moral activity—how it is experienced and organized. In part, I hope it can be better taught…”

“… I learned to be a caregiver by doing it, because I had to do it; it was there to do. I think this is how most people learn to be caregivers, for people who are elderly, disabled, or chronically or terminally ill …”

“… out of the billions of ordinary acts of caregiving perhaps also comes much of that which, imperceptibly and relentlessly, sustains the world.…”

To read the full article click:

http://harvardmagazine.com/2010/07/on-caregiving

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

U.S. scores! ... dead last in healthcare

"... when a country fails to meet the needs of the most vulnerable, it also fails to meet the needs of the average citizen ..."


Mirror, Mirror on the Wall: How the Performance of the U.S. Health Care System Compares Internationally, 2010 Update


Overall rankings:

1. Netherlands
2. United Kingdom
3. Australia
4. Germany
5. New Zealand
6. Canada
7. United States

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Father's Day: to memories and beyond

Ah yes, Father’s Day. Hard to forget Father’s Day weekend 13 years ago. Watching, holding, sharing my own father’s dying hours of pancreatic cancer through the longest night. The time of angels jumbled with a lifetime of memories.  

Multiple Sclerosis turned our family dynamics and roles topsy turvey. Never have found the proper father label. Caregiving and parenting had to coexist. Certainly won’t figure it out today.

An 11^th hour change in our daughter’s work schedule changes family plans. How many times has that happened in my own life? Odd to be the receiver instead of the changer.

Though dependent Patti is still a daughter and needs to share her own Dad’s Father’s Day celebration. Securing her into our wheelchair accessible van, she remarks “Why are the birds making so much f#cking noise?” Several MS symptoms involved here but I admit I enjoy a laugh at her perspective on the day.

By default we end up splitting the day between MS time and well family time as we have sooo many times before. Patti returns to a desired and deserved nap.

Later our daughter offers to take and treat me to Toy Story 3 since when she was a kid I took her to the first Toy Story.

Reminiscing, MS took Patti out of the physical side of parenting that was cruel. Yet the world I stepped into was beyond cool.

Learning to play with Barbies. Learning to ice skate in my 40’s to keep up with our daughter. Being the only Dad in ‘Mom and Me’ classes for gym, swimming, and dance. Playing board games like “Pretty Pretty Princess”. ‘N Sync, Spice Girls, Pokemon …

Then it is circle of life time. When I took Megan to see the original Toy Story I paid adult and she was a discounted child ticket. As our daughter pays for Toy Story 3 tickets she pays adult and I am the discounted senior citizen ticket. … I will NOT go quietly!

Challenging and barely defeating Megan in an air hockey game in the arcade I order a large Buzz Blast drink from the concession stand. To infinity, and beyond!

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Jubilee Day 2010 Venimus, Vidimus, Vicimus

Footfalls echo in the memory, 

Down the passage which we did not take,

Towards the door we never opened

Into the rose-garden.

T. S. Eliot

Sharing a pumpkin funnel cake topped with cinnamon and sugar was the first stop of our visit to the 82^nd Annual Jubilee Day.

Continuing our formula for successful wheelchair outings of “arrive early and depart early” I was surprised at how busy the street was even before official beginning time. Dominated by strollers and wheelchairs, it was like some modern variation of the Riddle of the Sphinx. Hey, assistive technology traffic beats a forest of buttocks any day!

Cruising by a zillion vendors of things of interest and no interest a caricature booth caught our attention. Concluding this was something we had never done, we sat down with Neil McMillin freelance illustrator and graphic designer out of Lebanon, PA. 

Visiting the Keystone Smokehouse & BBQ truck was one of those Multiple Sclerosis or Patti or both moments. Preparing Patti’s pulled pork bbq sandwich the clerk simply asked if Patti would like a little coleslaw, unaware that Patti can get down right evangelistic in her contempt for coleslaw. Few people have such passion about coleslaw or share with such a profanity laced epiphany.  

What is Jubilee Day for Patti without ‘bling’ shopping? Besides the ideal wheelchair height of street vendor displays, vendors are often shop owners or artists themselves. Interaction in shopping is a treat and a half.

Here Patti strikes poses as she models her Jubilee Day ‘bling’, a necklace and earring set from Head to Toe Boutique of Annville, PA

Finally, sipping down frozen lemonades we happily rolled on out as the crowds began to build and temperatures began to climb. 

Easy? No! Outings never are. Yet in the end, Venimus, Vidimus, Vicimus!

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Jubilee Day is accessible, butt ...

Best thing about a street fair is a street. Streets are made for rollin’. Worst thing about a street fair is crowds. Who wants to spend a wheelchair outing rolling through a forest of buttocks?

We always look forward to Jubilee Day in Mechanicsburg, PA annually the third Thursday in June. With a little pragmatic adaptation we also always enjoy ourselves.

Billed as the largest one day street fair in the Eastern United States, somehow 60,000 visitors fit into the .6 mile of Main Street Mechanicsburg.  

We adapt to both crowds and heat (Patti is also challenged by Multiple Sclerosis intolerance of heat) by simply arriving early and departing early, works for us year after year.

Jubilee Day officially begins at 10 AM. Arriving even earlier we have always found everything open. In the cooler crowd-free summer morning it really is a treat to roll down Main Street.  Lemonade under a shade tree and you can almost feel the past in those lazy, hazy, crazy days of summer.

Unique to street fairs is vendor shopping. Unlike department stores or mall stores where counters are designed for standing people, street fair vendors sell from folding tables. For Patti shopping in a wheelchair this could not be more interactive and ideal.

Then there is the food, blocks of food. We do have to factor in Patti’s challenges to hold and eat food along with risk of MS related dysphagia from distractions with all the hoopla. Again here we adapt by simply bringing along utensils and a plate in her wheelchair backpack, creating options. 

Two stages of entertainment open at 10 AM.

Accessible parking is available in the municipal parking lot on West Strawberry Alley and accessible public portable restrooms are available every couple blocks.

By lunchtime the crowds are seriously starting to build and the cooler morning is replaced by summer heat and humidity … that is our cue to say good-bye.

Knowing not only challenges but limitations is a key to a successful and enjoyable outing.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Another teardrop on the face of MS

Reporters report stories. A new morning brings a new newspaper. We all hear or see, but some of us pause when a new teardrop falls on the face of MS.

Susan Drummer, 44, lived with Multiple Sclerosis. Her parents, Kenneth and Arlene Umbenhaur, remodeled to accommodate her wheelchair when she moved back home into the house she grew up in.

Until a house fire trapped her home alone this weekend and neither neighbors nor responding firefighters could save Susan.

Woman killed in Deer Lake fire

Who, what, when, where, why, how? Does it really matter?  Perhaps Leslie Richardson of the Republican-Herald captures it best, “Umbenhaur sat on a picnic table in a neighbor's yard as family and friends comforted him and his wife, Arlene.”

Living 70 miles to the Southwest of this tragic accident, we do not personally know this family, then again anyone and everyone living with Multiple Sclerosis shares in some way the challenges, fears, hopes, and loss.

Remember life ... life gives us memories too beautiful to forget.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders