a caregiving coin has two sides hope and denial

Hope and denial are two sides of the same coin and always have been. Much of what we lived through this past quarter century is likely true for others facing long term progressive chronic disease such as Multiple Sclerosis, or a shorter term diagnoses such as Alzheimer’s.

Transition to the care facility era is less about a continuum of care and more about an inevitable cataclysmic change that precipitates transition.

Denial is seductive. Homecare or bust was essentially a knee jerk ‘macho’ response on my part.

Long term caregiving is hazardous to your health. Now facing my own diagnosis of lung cancer, thoughts of never knowing how Patti’s story ends chase concerns for my own homecare through dark dreams.

Today is the sixth annual World Autism Awareness Day and as a family home caregiver of a quarter century I find my thoughts pausing on the parents and family of all special needs children.

More than me or other spouse caregivers or family members caring for aging parents; these loving parents of special needs children face the daily mathematics of not only their own 'what if', but inevitable 'when' balanced with a smile of encouragement and love for their child to brighten any day and any tomorrow.

Please make a moment today to pause and think of these parent caregivers - they represent the best of us. 

--
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

Valentine’s Day Memories: good, bad, and ugly

As a caregiver spouse Valentine’s Day is at best a one sided exercise. Yet marketing drives society and well look around the annual emotional ‘carpet bombing’ has begun.

Progression of Multiple Sclerosis symptoms both physical and cognitive long ago eliminated ever receiving any Valentine’s Day gift, gesture or even remembrance.  It’s such a ‘healthy couple only’ media blitz it only leaves me feeling more isolated and alone than usual. The caregiver perspective is expressed well in “Valentine's Day - Fleeting Fluff” by Terri Corcoran.

Maybe it always was illusion? As a college student I double dated with a friend on Valentine’s Day. Splurging on the memorable kind of restaurant it seemed a night and place framed for romantic love. Until my buddy decided to seize the moment to announce he was breaking up with his girlfriend.  

Also long ago in my years on the road I knew someone who falling head over heels in love with a woman drove hours with that seething passion and imagination of romantics to surprise her and ask her to “be mine” forever on Valentine’s Day. She instead surprised him, having settled down with her ‘true love’ and asked him to leave her alone before he ever opened his mouth.

Maybe romantic love isn’t an illusion but a delusion?

Valentine’s Day also is not really even a holiday. Companies, schools, and governments go about business as usual. My Mom’s body was cremated on Feb 14^th. There’s a figurative coffin nail in Valentine’s Day memories.

In all fairness there are some good memories. My Aunt and Uncle were married on Valentine’s Day. They celebrated over 60 wedding anniversaries on Valentine’s Day before death interupted the romance.

For almost two decades I’ve been involved with a Special Olympics Valentine’s dance for high school age special needs students unlikely to experience traditional school dances. no diagnosis on the dance floor

And for whatever reason snow storms and blizzards enjoy visiting around Valentine’s Day and I could not be happier. Snow is nature’s “hug me”!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

greying of caregiving

Age masquerades behind gaily decorated masks of seasons, sunsets, and sunrises relentlessly stealing abilities. More than any members of the family of caregivers / carers those who care for children, of any age, with special needs or disabilities know, feel, and battle the relentless challenges of time. - The heart of caring beats on regardless of differences in age but the body may be another story. 

When a lunch outing between an 80 year old caregiver parent who picked up her 37 year old daughter from an Association for Retarded Citizens group home turned into a 500 mile, 57 hour ‘missing endangered’ odyssey this tells a story of both the challenges of age and the heart of a caregiver - fortunately a story with a happy ending.

“They apparently went to lunch and filled up the gas tank of the mother’s car, but got turned around …”

“Police label them as "missing endangered" because of the mother's age and the daughter's diminished mental capacity.”

"They were disheveled. They did appear to be in good condition," said Trooper Tom Pinkerton. "People go lost or missing every day and there's not always a happy outcome …” Police give details on finding of missing woman, daughter 

Miller says she stopped several times to ask for directions. "I am so grateful to be home, I can do nothing but thank the Lord for that …” said Miller. Elderly Mother Talks About Being Lost For Days  

Pundits babble on about the ‘greying of America’ from retirement living to its affect on the restaurant business. Seemingly lost among talking points of problems elderly people face is the reality that caregivers / carers are also greying, maybe even faster.

“Whistle through your teeth and spit

Cause it's all right.

Oh well a Touch Of Grey

Kind of suits you anyway.”

Grateful Dead 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

thunder gods

With NASCAR paused in the North between Pocono and Watkins Glen, three of its top drivers Tony Stewart, Kyle Busch, and Kasey Kahne took a break from the tracks of thunder to race sprint cars on a legendary local dirt track to raise money for a good cause.

"Any time Kasey has an event that we can make, we obviously want to make it," Stewart said. "When our schedule opened up, it was a no-brainer to come here."

The Kasey Kahne Foundation raises money to give back to chronically ill children and their families.  All of the proceeds from Thursday's “Battle at the Grove” went to the charity.

An outing to Williams Grove Speedway is something Patti has absolutely no interest in, especially since we can hear it on our patio 5 miles away. For whatever reasons as her visual impairment has worsened with Multiple Sclerosis her hearing has improved. A couple hours of trackside mega-decibels has absolutely no appeal.

Now I have attended a couple times and while loud is an understatement and the proximity to drivers, cars, track and racing is captivating it’s the dust that fascinates me. Walking through the parking lot after dirt track racing is like walking through a mutant winter wonderland. Car windshields need to be cleaned of dirt. Even your hair and clothing is coated with a layer of dirt.

Is noise and dirt an acquired taste or just clutching onto eternal childhood? After all wasn’t the dirtier you were an indication of how good a time you had.

Though if talking about feeling good … how great does Aaron Ott, who graduated high school only two months ago, feel after getting down in the dirt with three thunder gods and winning the “Battle of the Grove”?

Charitable fundraising not only demands creativity but becomes all the more important in rougher economic times. Kudos to NASCAR driver Kasey Kahne, Ollie's Bargain Outlet, and Williams Grove Speedway.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

teen autism: soon it will be again

Sharing a home with teen autism and repeatedly hearing phrases such as “soon it will be again” never ceased to intrigue me. Communication challenged or insight?

Early in July, J & T returned to Massachusetts after almost two years here in Pennsylvania. … Soon it will be again?

Immediate needs of individual caregiving swallowed the idealism of two long term caregivers as mainstays for each other.

Living with teen autism is above all about autism, 24 hours a day, 7 days a week.

States herald programs and services. Reality is a picture painted by funding or lack thereof. Services and programs are as necessary as air to breathing.

One summer in Pennsylvania rippled for months through both their lives. With only half a day, three days a week of summer school special education contrasted with full day, 5 days a week in Massachusetts routine cracked. For Tyler that meant anxiety surged. For Jennifer as a single parent school hours are the ‘the work day’; a loss of the majority of income for even a couple months impacts everything.

More significant is what may or may not be available when Tyler turns 21, only 3 years away.

Less now is not likely to become more later. As a parent you do whatever it takes for your child.

Back when Tyler was diagnosed with autism the prevalence was 1 per 384 children. NIH recently used the prevalence of one in every 91 children.

We are only seeing the tip of the iceberg of autism thrusting up into adult age and the quest for adult services.

As dependent adults what will they do, where will they go?  Can you even imagine how poignant those questions are for a parent?

These are extraordinary parents who have nurtured their younger child time after time beyond what they were told their child would never do.

Parenting a teen as most know it is about nurturing independence. 

Parenting teen autism is about preparing to grow old with autism.

“Soon it will be again.” 

Caregivingly Yours, Patrick Leer 

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

no diagnosis on the dance floor

A teenager rolls across the dance floor. Red/orange neon lighting glowing from under her ‘pimped-out’ electric wheelchair, rapping along with the music:

“I'm so 3008
You so 2000 and late
I got that boom, boom, boom”

Her smile transcends the disco lighting and bass beat thumping. Her laugh illuminates the seen and unseen.

Somewhere in its origin this particular special needs Valentine’s lunch and dance party was about providing an option for students unlikely to be involved in traditional dances at high schools. Now with attendance grown to 600, this ‘Valentine’s Day’ lunch party is NO alternative. This is the real deal!

No painting exists without the strokes it took to create it. It takes an unwavering commitment of one Elks Lodge to annually host this lunch party including growing needs for space, preparing lunch and supplying refreshments. It takes the school system which finds a way to keep the transportation support in the budget. It takes a single grocery store manager who in turn twists arms to supply donations of ‘all beef’ hot dogs. It takes the support of the county Special Olympics. It takes the special education staff to accompany and assist many of the students. It takes a snack food vendor who donates bags of chips. It takes a ‘designer’ ice cream sales rep who donates individual serving size containers. It takes a private high school that buses over able-bodied volunteers to serve the food, clean up, and assist.

The DJ and dancers are one collective body now. Cue … play ... bodies move, arms wave … voices shout in celebration …

“Easy come, easy go, now we on top
(Top top top top top)
Feel the shot, body rock, rock it, don't stop"

One Elks Lodge has been doing this in one incarnation or another since 1963, long before anything was politically correct.

There’s no 'diagnosis' on the dance floor ... just the smiles of young people having fun.

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