Tuesday, October 31, 2006

Caregiving: shoes and ships and sealing wax

"The time has come," the Walrus said, "to talk of many things: Of shoes and ships and sealing wax - - of cabbages and kings." from “Through The Looking Glass” by Lewis Carroll


Juggling spousal caregiving and basically single parenting there are days when Lewis Carroll’s walrus could easily become my imaginary friend. <grin>


Freshmen college students pack in August for the school year ahead, a winter coat is the last thing on their mind. Yesterday began by escorting our daughter’s full length winter coat (fresh from the dry cleaners) into a UPS Store. Within minutes it was fitted with the proper box, carefully packed, sealed and ready to ride a brown truck to a Halloween delivery. … Temperatures, today, have warmed almost 30 degrees; you may want to try this. <grin>


By evening I was transforming Patti’s room at her care facility with disco lighting and helping her with their Trick or Treat program for children of staff and families of residents. Progression of cognitive dysfunction symptoms impairs her ability to consistently process the reasoning involved. Unassisted, Patti could just as easily take an offered treat bag “mis-thinking” it was being offered to her. <grin> You can imagine the shock to a young goblin if “the lady” took their Trick or Treat bag.


The night ended with a chat with the director of nursing about the impact of progression of cognitive dysfunction on Patti’s personal care pain management plan. What was Patti capable of recognizing?


Somewhat like the proverbial question, if a tree falls in a forest and nobody’s around, does it make a sound? … If Patti hurts but the brain does not recognize it, what happens to the pain?


MS is about the brain short circuiting communication with the rest of the body. Can anyone depend on Patti to successfully recognize and communicate her own discomfort or pain? Increasing cognitive dysfunction magnifies this care dilemma.


I was impressed and comfortable with their structured combination of both a verbal numerical and a pain assessment scale. Or in English, a combination of simply asking Patti, with assessment of observations such as negative vocalizations, facial expressions, body language, or consolability.


Minus the fancy medical terminology frankly I do the same thing, I “interpret” Patti. After all, I have 20+ years of knowledge as her caregiver spouse to draw on.  


All in all, another of those ‘shoes and ships and sealing wax’ kind of days of trying to live with MS as a family.

Sunday, October 29, 2006

Caregiving: Trick or Treat - our history

 “Trick or Treat” has been one of the more visible juggling acts through the years between caregiving and parenting. Beginning with a toddler barely able to walk we progressed with a parent unable to walk.


I adapted “us” by choosing to go over the top. With yard decorations second to none, music and PA, and theatrical fog and lights our house became a MUST stop on the neighborhood tour of treat seeking ghosts and goblins. As a further lure we rarely gave out candy. Patti sat in her wheelchair and dispensed fun treats such as glow in the dark necklaces, or rubber snakes. Kids came from everywhere.


Our peak year we distributed 242 glow in the dark necklaces. The fact that Patti was in a wheel chair probably wasn’t even noticed. She was more involved in Trick or Treat and had more fun than most able bodied parents wandering around with their kids.


One year we even tried a trip to wheelchair friendly Universal Studios in Florida for Halloween Horror Night. I was pleasantly startled when an actor costumed as a zombie stepped up next to me and mimed that he wanted to push Patti’s wheelchair. We all had a great laugh when Patti “finally” turned to see why her conversation was being greeted by grunts and groans.


Even with the 24/7 care facility era Patti’s room has raised the bar for Trick or Treat.


The memories would take too many words so here's two minutes of Trick or Treat photos through the years beginning with a rare picture of pre MS Patti standing and without visual impairment having fun at a wack-a-mole game. … While digging up photos I couldn’t resist closing with a few pre-historic Trick or Treat shots of yours truly.


Wednesday, October 25, 2006

Caregiving: unforeseen events only happen to ...

OK, I confess to delusions of invincibility, they kind of go hand in hand with caregiving and ‘single parenting’. That unforeseen events only happen to other people, is another popular self-deception. 


Simply driving home by myself one evening a year ago my eyes were rudely opened when a kamikaze bambi leapt onto the front of my Ford Aerostar van. 


Driving with cruise control set at 60 MPH my van never slowed or swerved even though the collision with a 200 lb buck left the front of the vehicle in tatters. As one tractor trailer was passing me on the left and another on my rear bumper, swerving or braking would have been catastrophic. Sitting high inside the van I was protected without a scratch or bump.


My traditional vigilance for wildlife when driving was toward the fields and farms on the side of the road to my right. This suicidal bambi bounded from the median strip or ol’ Scotty is losing his touch with the Star Trek transporter. Bambi just suddenly materialized in mid leap in front of my van.


Arriving home and parking the van side by side with our Taurus station wagon I couldn’t help but notice that the point of impact would have been right through the driver’s side windshield had I been driving the Taurus.


Auto insurance statistics claim that between October and December, 1.5 million vehicles collide with deer every year, resulting in 150 motorists’ deaths, more than 10,000 injuries, and $1.1 billion in vehicle damages.

Those numbers above do not include deaths, injuries, and costs when drivers swerve or slam on brakes to 'avoid' a deer and cause multiple vehicle accidents or run off the road or into a tree.  


BE CAREFUL out there this time of year. kamikaze bambi attacks do not just happen to “other” people.


It’s more than Halloween scary to ponder the “what if’s”. Yet, in reality, this was a blessing (for us, not bambi). Our auto insurance carrier “totaled” the Aerostar rather than repair, which in turn precipitated the purchase of our wheelchair accessible van. -------  No matter how much or how well we try to control life, it’s awe-inspiring how random unforeseen events introduce rippling change.

Wednesday, October 18, 2006

Caregiving: "Caregivng In America"

“… deemed disposable and without value …”  How often does such a feeling lurk just under the surface unexpressed for too many people? Released a couple weeks ago, "Caregiving in America" does not dance around. 


New Report on Caregiving Warns

of “Looming Crisis” for Baby Boomers

     … Caregiving in America contrasts the U.S. with nations such as Japan, Germany and Austria who have handled the caregiving challenges of a rapidly aging population by adopting universal systems of long-term care. The United States arguably has no caregiving system at all.

     “Underlying ageism can explain, in part, why this crisis receives less attention then it warrants,” says Dr. Robert Butler, Co-Director of The Caregiving Project for Older Americans and President and CEO of the ILC-USA. “Older people receiving care are deemed disposable and without value.” …


"Caregiving In America", the full report is available at:


Saturday, October 14, 2006

Caregiving: wrong way on a one way street

Sometimes you win and sometimes you loose as a caregiver. Multiple Sclerosis flare ups both of physical and cognitive dysfunction symptoms certainly seem to stack the deck against you.


Last Saturday an outing to visit our daughter at her college campus almost never got started. If a MS related symptom could go wrong, it did go wrong. I felt like a hamster in a wheel. On that day perseverance was rewarded. Symptoms stabilized and we eventually had a pleasant ‘late afternoon’ visit with our daughter.


Later in the week we attempted a movie outing to see “Open Season”. 90% through the evening, I was just about to pat myself on the back for successful planning when dysphagia bushwhacked the outing.


While laughing, MS short circuited the communication between brain and muscles and Patti’s brain began to transmit ‘choking’. When dysphagia flares Patti is not really choking, in fact she pauses to breathe. However, she demonstrates all the sound effects and visual appearance of choking, and of course, other theatre patrons may become concerned or even annoyed. Leaving the theatre is the most effective way to distract her and ‘reboot’ her brain. Then all if fine.


Another outing involved our local small town Halloween Parade. Here I was blindsided by a progressing problem.


While visual impairment worsens, Patti’s sense of hearing has increased. I should have seen the clues as over the summer she would frequently complain about the sound of crickets or chirping of birds irritating her. Whenever I asked the critters to stop they refused. <grin> "Well, that's rude of them!" Patti would remark and we'd both laugh it off.


At the parade, high school marching bands, fire trucks, funny cars, and floats created a wall of sound cheered by the crowd and squealing kids. Patti went from bouts of whining to agitated to settling down but in a more disconnected and confused state of mind. … I guess I’m going to have to look into ear plugs or some kind of headphones like workers wear at airports.


As pictured, going the wrong way on a one way street too often captures the challenges.

2006 Halloween Parade, Mechanicsburg, PA


On a 70 degree Indian Summer night in October, it doesn't get much better than this.


If you’ve never been to a small town America parade, here’s a peak. Use the slideshow viewing feature of AOL Pictures for best display.

Tuesday, October 10, 2006

Sleepy Hollow revisited

Each Thanksgiving break while America shops I’ve tried to turn that time into an ‘able bodied’ father / daughter experience, exploring or learning something new. Two of our mini trips had to do with the legends and lore of the Halloween season, Sleepy Hollow and Salem.


While "The Legend of Sleepy Hollow” is fiction, Washington Irving was “inspired” by locations in North Tarrytown, NY.  With modern transportation it's just a hop, skip, and a jump North of NYC. North Tarrytown officially changed its name to Sleepy Hollow in 1996. Can you hear those tourism dollars and real estate values jumping? <grin>


As fans of the “legend” it was a bit disappointing to find a modern suburban town. You have to do some leg work and a whole lot of "imagining". 


In the “legend” Ichabod first encounters the Headless Horseman near a brook in Wiley’s Swamp. With progress the town eventually drained the swamp and it became Patriot’s Park.


The “legend” tells us that two hundred yards away …

“ … .In the dark shadow of the grove, on the margin of the brook, [Ichabod] beheld something huge, misshapen and towering. It stirred not, but seemed gathered up in the gloom, like some gigantic monster ready to spring upon the traveler….”


In reality, just about two hundred yards away stands an ancient “misshapen and towering” tree. This tree also allegedly inspired the scenes in the film adaptation of the headless horsemen charging forth from an enchanted tree.


Pictured is the modern bridge in Patriot’s Park over "the brook" and the tree that inspired an author and film maker.


As a bonus we found Washington Irving’s own grave in Sleepy Hollow Cemetery surrounding the Old Dutch Burying Ground, which generations know as the legendary resting place of the Headless Horseman.


Some may notice our picture was taken at night. Well, the horseman ONLY rides at night and who visits a legendary graveyard by day light. What fun would that be?  


Closing my eyes and letting the sights and sounds of the modern world fade away, the hairs on my neck jumped at the chilling sounds of the approaching clip clop of hooves. Which way do you run when your eyes are closed?  <grin>


One of the greatest and simplest tools for learning more and growing is doing more.”   Washington Irving

Friday, October 06, 2006

Caregiving: "Rolling' "

      Reading other journals I feel like I’ve been writing on stone tablets without any video entries. <grin>   


     Since I’ve been reviewing caregiving with words, I decided to try and capture part of the other half of our story with a video slide show to music, “Rollin’ ” Go ahead crank it up, as Tina says "Listen to the story, now ..."

Wednesday, October 04, 2006

Caregiving Metaphysics "Previously Yours,"

Dreams left on a shelf don’t get any easier to dust off as life goes on. The job of caregiver comes with no warning. If you “feel” you have unfinished business or emptiness it is more difficult to embrace.

A caregiver’s past experiences, I believe, can help their success. I know in “our story” that has been true. This requires me to briefly pull back a curtain. Memories can be distracting. Yet at the same time I am the sum of all my experiences.

Yes, that is a younger Bob Dylan and a younger me on the right end in this 1975 backstage tour photo.

Beginning in the 70’s, I was blessed with 10+ years of rock n’ roll adventure. Seizing an opportunity as an ‘advance man’ for Dylan’s Rolling Thunder Revue tour I would eventually have the pleasure of working in road and tour management with Geoff Muldaur, Sclarlett Rivera, Blondie, Hall & Oates, the Isley Brothers, Kool & the Gang, Tim Curry, and Diana Ross. For over a decade ‘the road’ including all 50 States, Europe, Japan, and Australia would be home for both work and play.

I learned extraordinarily unusual skills and experiences about managing the unmanageable. The daily challenges of moving people and things through time and space that do not want to move and do not fit – in retrospect prepared me.

While never a “butcher, or baker, or candlestick maker”, I have also been a college administrator, managed a country western saloon and a movie cineplex, and mobile deejay entertainer.

Over the decades I am always impressed with the diversity of caregiver backgrounds. That makes sense because every caregiving situation is unique and “to care” demands a more holistic approach than to treat.

In ‘our story’ my past also helped to all but eliminate “What about me?” from the daily choice of to be or not to be a caregiver.

Unless you are psychic you can’t really prepare your life experiences to be a home caregiver. … You can control ‘unfinished business’ whether caregiving is in your future or not. Get dreams off the shelf. Tomorrow is never guaranteed for anyone.

P.S. I have to smile looking back at the 80's "hair" in this passport visa.


Tuesday, October 03, 2006

Caregiving: baby booming-caregivers

Not a Pretty Picture: Elder-Caregiving in America

     Depression, stress and rapidly declining health paint the portrait of today's elder-caregiver in a new survey. With so many caregivers in crisis - or near crisis - what will become of the baby booming-caregivers tomorrow? Read the details of this indictment of the lack of attention paid to caregiver support systems.


… from The Caregiver's Home Companion

Monday, October 02, 2006

Caregiving: catharsis & coffeehouses

     When those ancient Greeks were pioneering professional performing arts they believed in the concept of catharsis. Changes in emotion while the audience viewed a performance would result in renewal and revitalization for living.

     When I involve Patti in the right entertainment situation, that original purpose of catharsis is so dramatically evident. She demonstrates improved ability and unquestionable revitalization. It’s eerie.

     Coffeehouse entertainment is one of those environments. In such an intimate venue, visual impairment isn’t as much a factor. An almost nostalgic ‘beat generation’ atmosphere settles in, and you don’t need designated disability seating and such. Because of proximity, everyone actually has to care about each other and it works out.


     A solo performer, like our friend Brian Lockman, of ballads and folk songs, many funny and witty, is easy to follow and fun. Patti’s MS mental confusion is minimized.


     It is all the more outstanding because the traditional later hours of live entertainment already have the stacked deck of MS fatigue working against them. Yet Patti enjoys and is revitalized for longer than I would guess.


     Plus I’m sure the other half of coffeehouse entertainment, coffee and desserts don’t hurt the process. <grin> Though here is another area where I don’t know how to explain it outside of catharsis. MS related dysphagia 

is NEVER a factor with coffeehouse entertainment, yet a coffeehouse visit without entertainment and Patti still will have intermittent problems with dysphagia. Go figure!


     WARNING: This treatment is not endorsed by either the FDA or AMA. No drug manufacturer or medical professional was able to make any money off the evening's fun. <grin>


     So with temps dropping to the low 40’s this past Friday evening, we welcomed the Pumpkin King by feasting on pumpkin pie washed down with pumpkin caramel lattes, and enjoying the music and banter of Brian Lockman, that “singer of old songs.”

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