What is your caregiving 'prime directive'?

Any Trekkies out there? Any ‘normals’ remember the Prime Directive, Starfleet’s General Order #1? (Trivia answer at the end)

The point here is that as spousal and/or family caregivers we each have our own Prime Directive ... and as National Caregivers Month 2012 comes to a close, why not share?

Mine has always been, is and I suspect always will be Patti’s ‘safety’.

Our story began so dramatically with Patti awakening on Thanksgiving morning 1989 suddenly unable to walk and barely about to see and talk with her first major Multiple Sclerosis exacerbation that I was baptized by fire into the world of caregiving and medical advocacy … while somehow juggling our 18 month old daughter in my arms.

Yes, Thanksgiving Day is a “tradition” for others but for me it’s become more like a minefield of challenges to my prime directive of Patti’s safety.

• ·      MS related dysphagia smothered in abundant food demands 200% of my attention, feeding Patti, monitoring, and verbal cueing to prevent choking while the discordant symphony of a large family dinner plays on.
• ·      Transferring and travel is always like spitting into the wind, do it on Thanksgiving Day and well you just up the ante. Should something go wrong able bodied people can just walk away, this is not an option for a non-ambulatory woman in a wheelchair inside a wheelchair accessible van requiring a ramp to exit and enter.
• ·      While guests use a restroom for us it’s more like a mutated Turkey Day “beat the clock” game. From the time I pick her up until we return it’s a gamble on incontinence. Patti’s only option would be me physically transferring her to and from a bed and changing her.

Bottom line – did Patti enjoy the time? ‘In the now’, yes!

Though MS related dementia erases each holiday moment as it happens, more like an etch-a-sketch Thanksgiving. Driving away when Patti cannot tell me what we just did, it does make me wonder about the equation of risk vs reward.

And for the first time in 23 years facing my own health issues, a lung cancer diagnosis, I realize I may not be able to be the linchpin in future caregiving equations and wondering what is more important traditions or prime directives?

Patrick Leer

BLOGS:

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

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

P.S. As promised for trivia buffs -  the Prime Directive dictates that there can be no interference with the internal development of alien civilizations. … Ooops, those original Pilgrims must have missed the memo from Starfleet. 

multiple sclerosis caregiving care giving

“Think you can make it, pilgrim?” / MS caregiver

When the 53 surviving Pilgrims celebrated their successful harvest in autumn of 1621, I suspect that even in their wildest imaginations none could ever have foreseen the future rite of passage for kids and parents known as the school Thanksgiving play.

Certainly Patti never imagined she would watch seated in an electric scooter as our daughter played a Pilgrim mother who gave birth onboard the Mayflower.

Here in the now, this will be the 22^nd year that Thanksgiving is infamously intertwined with the dawn of living with Multiple Sclerosis as a family.

My memories of morning cooking aromas, leaf piles, and the Macy’s Parade on the TV were shattered looking into the fear in Patti’s eyes as she awoke that morning in 1989 realizing she could not walk, and could barely see or talk.

Waking up Thanksgiving morning should not be a watershed moment in one’s life.

Four years earlier Patti had a brief period of numbness and tingling in some fingers. With symptoms ending sooner than tests, a diagnosis of “probable” Multiple Sclerosis while devastating in the moment seemed less probable as time passed.

Years passed, no symptoms returned. Life was good; homeowners, two jobs, two cars, ‘two cats in the yard’ and a healthy happy daughter. 

Absolutely underprepared for what was happening that morning, somehow I found Patti’s neurologist’s number and called. Duh! It was Thanksgiving morning of course he was unavailable. An associate returned my call, arranging hospital admission.

Simultaneously our 18 month old daughter was stirring and ready to get up. While I had been as involved, if not more than involved, for a guy in the late 1980’s I had not been the lead parent much less ever have juggled parenting and caregiving.

I never felt more alone and overwhelmed.

“Think you can make it, pilgrim?” John Wayne

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 

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 45^th 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 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

You might be a caregiver if …

You might be a caregiver if … menthol is your eau de cologne.

Thanksgiving morning began with rubbing Mineral Ice into my shoulder and upper arm muscles and applying a Ben Gay back patch to my lower back. So too would Thanksgiving end, and the next morning begin.

At Patti’s level of Multiple Sclerosis (EDSS 8+) caregiving is physical caregiving. Ironclad in menthol, perhaps even hallucinating on menthol, I was pumped up and ready for my 20th anniversary as a MS caregiver.

Besides the multiple transfers, clothing and Depend changes, and monitoring dysphagia related choking through dinner, Thanksgiving for Patti was a safe, happy, and family filled holiday.

Interestingly I discovered I could take a picture of those ol' family slides projected on a wall and with a little photo editing we have Patti and her brother both now and then.

'Black Friday' is always a travel day for me to and from New Jersey to visit maternal cousins. While I treasure them all, there is one who though so young has so much to teach about the will to live. Less than a handful of years old, he has survived premature birth, chemotherapy, and liver cancer surgery while living with Infantile Myotonic Muscular Dystrophy.

There may be no 'beaten path' for navigating the holidays, but if you look there is inspiration! ... and there is always eau de menthol.

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

20th anniversary MS caregiver / Thanksgiving

“It was twenty years ago today,
Sgt. Pepper taught the band to play
They've been going in and out of style
But they're guaranteed to raise a smile.
So may I introduce to you
The act you've known for all these years …”

25 YEARS AGO
Patti had the briefest episode of slurred speech and numbness in her fingers.

“Probable MS?” Patti felt fine, never reoccurred. Damn the torpedoes full speed ahead.

20 YEARS AGO
November 1989 … National Zoo, Washington DC.

Thanksgiving morning, 1989, Patti awoke in a different world unable to walk, barely able to see and talk. Thanksgiving Day would end with her hospitalized with first Multiple Sclerosis exacerbation.

THREE YEARS LATER, 1992,
We were living with Multiple Sclerosis AS A FAMILY. scooter sleigh ride (1:16)


TEN YEARS LATER, 1999

"If you find there the meaning of what happiness is … Then a new life will begin”

FIFTEEN YEARS LATER, 2004

The care facility era dawns

SEVENTEEN YEARS LATER, 2006,

“it poured sweet and clear It was a very good year”

And, as of last Thanksgiving  ... we’re still “guaranteed to raise a smile”

Oh yeah, along the spouse caregiver path there was one hernia surgery and my back is sore more than I admit. My first episode of Cluster Headaches occurred that original year, alas my Achilles Heel.

Yet considering that I did not even have a clue as to how I would get through that first overwhelming Thanksgiving, there really are infinite reasons to give thanks!

Thanksgiving wishes to us all, every one!

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

caregiving: Thanksgiving is not a Norman Rockwell painting

In 1621 the Wampanoag signed an alliance which gave the English permission to use about 12,000 acres of land for Plymouth Plantation.

54 years later the Wampanoags were nearly exterminated in war with the colonists. Surviving male captives were sold to slave traders. Their families, women and children, were used as slaves in the New England colonies.

Thanksgiving eve 1989 Patti (totally able bodied) and I spent the night playing with our then 18 month daughter, taking turns with the butterball turkey on the tot slide.

In the morning Patti awoke unable to walk, see, and barely able to talk from Multiple Sclerosis, spending the remainder of the holiday weekend hospitalized.

On Thanksgiving 2001, I stood on the streets of a resurgent New York City.

Too full of parental pride as my daughter marched by in the Macy's Parade to even notice how cold it was.

On Thanksgiving 2007, I looked across the table into the smiling eyes of my youngest cousin. Premature birth, infantile myotonic muscular dystrophy, liver cancer, and months of chemotherapy and successful surgery had challenged his less than two years of life to sit at that table.

Thanksgiving memories are not Norman Rockwell paintings but rather benchmarks of the life we are given and what we choose to make of it.

Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

midget albino cannibals vs pilgrims and indians

Spending Thanksgiving with the Pilgrims and Indians? Personally, I’m adventuring to Boonton, NJ, the home of “midget albino cannibals” as reported in "WEIRD NJ".          

While Patti and our daughter Megan, who will be acting as primary caregiver, will be safely spending Thanksgiving with Patti’s parents and family in Pennsylvania, I will be charging off to visit relatives on my annual quixotic drive through the fabled people and places of New Jersey. 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tell the world, organize, find and destroy beaming sources

“The words of the prophets are written on the subway walls” or at least that is what Simon & Garfunkle sang in 1965. In the new millennium they are at the Macy’s Parade. 

[the poster reads…] "Secret remote-site based long-range military intelligence weapon array is physically beaming mind control directly into people’s heads everywhere. We are under totalitarianism. Whole communities, towns, and even cities are taken over and secretly being run by computers and programs by this means, including the White House, Congress, and the Courts. Mass slavery exists right here. It also beams diseases into us, cancers, strokes … Tell the world, organize, find and destroy beaming sources."

Less than one block away in the Thanksgiving Day Parade, a “Sponge Bob” balloon , the size of building, just floated  past where this modern prophet warns us of ‘mind control beamed into people’s heads’. Only New York City can be simultaneously surreal and real. I LOVE New York!