Christmas 'road trip'

“Living with MS” as a family has always been challenging but the future of “family” is enigmatic with Patti’s increasing progression in 24/7 care and Megan now living away at college. In another year who knows? ... Why not try a FAMILY 'road trip'?

 

Why Philadelphia? ... One reason is that among all the many celebrations of Christmas is that “we the people” seem to forget that our freedom pivots on Christmas and the Delaware River. On Christmas Day 1776 American rebels crossed the Delaware River just north of Philadelphia in freezing snow blind weather and reversed the tide of our Revolutionary War.  …   How different was your Christmas Day in freedom 230 years later?

 

Traveling with Patti is about traveling with Multiple Sclerosis. More specifically MS with a level of disability creeping ever closer to 8.5 (MS is measured on a scale of 1 to 10).

 

At her care facility she is assisted in activities of daily living by two attendants and a variety of cool mechanical lifts. “On the road” it’s just me and ever changing unknown environments.

 

Frankly the most intimidating to travel are MS symptoms of total bowel and bladder incontinence Once a person crosses a certain threshold of cognitive challenges catheters are no longer an option. Patti once ripped out a Foley catheter with no memory of how or why. And while obviously a guardian angel kept her from rupturing herself, it did end the catheter era.

 

Incontinence caregiving demands physical strength and creativity. It also centers your day around both the periodic and spontaneous need to change Depends, change clothing, and often shower. You need to find a way and the time to do laundry on the road. Keeping in mind that Patti can never be left unattended, it may seem overwhelming.

 

If you want a family activity you accept family for all that it is. As a caregiver you do not simply “fit a square peg into a round hole”, or “think outside the box” … you have to constantly reinvent the damn box. <grin>

Christmas 'road trip' - Dec 22

Homer should be writing this entry as it seemed the gods were determined to actively disrupt our departure.

 

Our timetable first collapsed under the double whammy of hurting my back with the first solo Depend change at home while packing, then an almost simultaneous disabling Cluster Headache. 

 

Inches of rain continued to fall as I rolled Patti in an out of the van for last minute scatter brained errands.

   

Finally with the van fully loaded with suitcases, electric scooter, and Patti secured in her wheelchair I turned the ignition key only to discover clicking noises instead of the roar of the engine. … Hours ticked futilely by as I unloaded eveything and tried to arrange for service and towing on the Friday before Christmas weekend. Grrrrr!

 

Instead of Philadelphia, Patti and I spent Friday evening with a bag of Wendy’s food in the waiting room at National Tire and Battery. Patti kept the spirit alive pointing out that it was a treat to have Wendy's. She couldn't remember when she last had a Wendy's burger. Pausing to glance around she added, "but my memory is terrible, I don't even know where we are." <grin>

Christmas 'road trip' - Dec 23

Do you ever wonder if things happen for a reason? Instead of arriving on the rainy, miserable previous day; we arrived in Philadelphia to sunny skies and temps that peaked at 60 degrees! Yes, 60 degrees!

 

It was spectacular for scootering along the waterfront park from our hotel, Hyatt Regency Penn's Landing (pictured looming over the harbor), to South Street, Philadelphia’s version of Greenwich Village. Where we met our daughter to drop off her hotel key as she had been waiting in line since before noon for an evening CKY concert.

 

US HISTORY embraces you in Philadelphia. We all had to memorize it in school but walking or rolling across the ground can give me chills.  … Or maybe it was just the bone jarring cobblestones. (How about just a few symbolic cobblestones? I get the point, but this is the 21st Century.) I have no doubt the Founding Fathers would gladly embrace concrete or asphalt if available to them. <grin>

 

We continued scootering along the water front parks basking in the spectacular weather. Tall ships, gunboats, and monuments are perfect for Patti’s visual impairments and the wider, less congested, park style paths were ideal for scootering.

 

We docked with our van at twilight to head into the center of town for Christmas decoration viewing. Rittenhouse Square had been recommended but didn’t impress Patti. We rolled from Rittenhouse Square to the City Hall Christmas Tree. A surprising treat were all the corporate lobbies/atriums along Market Street leading to City Hall. Banks and Corporations seemed almost to be ‘competing’ for best lobby.

 

Philadelphia City Hall is a spectacular back drop to the city Christmas Tree and most important to us even the ornaments were large enough for Patti to see and sit and enjoy on a balmy night.

                   

Christmas 'road trip' - Dec 24

Simply getting Patti up, showered, dressed  and checked out is a bit like trying to work on fly paper, but as long as I allow at least double the time it can be done.

 

There were only two quests for this morning before leaving town. A pilgrimage to the Rocky statue and a Philly Cheese Steak Sub for lunch.

 

For Christmas Eve morning it was another beautiful Spring day, and traffic and crowds were light. For a lot of reasons the statue was at the base of the steps of the Museum of Art which was “ideal” for scooter access. After these three days I FELT like a triumphant Rocky and couldn’t resist flaunting the pose in the picture.

 

Again the gods tried to interfer on the very last extension of our wheelchair ramp on this trip as we prepared to leave the Museum of Art. Megan and I manipulated the ramp closed manually. (When I purchased the van I had opted for this specific model ramp because it could be easily manipulated manually just in case the gods interfered.)

 

We found a deli two blocks away and savored our Philly Cheese Steaks Subs right in the van. Patti surprised me handling the sub with no problem with either her hand spasticity or dysphagia. (maybe I should feed her in the van more often? <grin>)

 

“… if I can go that distance, you see, and that bell rings and I'm still standin', I'm gonna know for the first time in my life, see, that I weren't just another bum from the neighborhood.”            Rocky Balboa

Caregiving: holiday cards

You just have to love this 21st Century where not only do you send out traditional touch and feel holiday cards, but you get to scan an Internet version for your “extended family and friends” …

         

         

         

Caregiving: PATF Press Conference

This is a back to the basics entry about technology for the disabled. The embedded link is to 4 minutes and 23 seconds of our remarks at the Pennsylvania Assistive Technology Foundation Press Conference from the State Capitol Rotunda in Harrisburg back in late September. (“Our” is a misstatement, as soon as the flashbulbs started popping and camera lights powered on Patti decided to clam up. <grin>)

For more information about Pennsylvania Assistive Technology Foundation please visit their web site at:

http://www.patf.us/

 

For readers in other States or in other Countries, who knows they may be able to point you to help in your home area.

Caregiving: a one SCOOTER open sleigh ride

“… Dashing through the snow, in a one (SCOOTER) open sleigh.”  ??? ... You're invited! Step back in time through the magic of You Tube. Double click the video and join us for a minute ride.

 

Early in a snowfall before it got too deep or the plows or salt trucks got out, Patti’s “one-scooter open sleigh rides” were a winter tradition.

While converting our old VHS tapes to DVD I often find views like this of what it was like adapting to living with MS as a family. … And proof that kids will grab snow from anywhere and eat it! <grin> … (Just don’t eat the yellow snow!)

Caregiving: Cluster Headaches continued

Multiple Sclerosis casts a long shadow. In our story my health as a caregiver always exists in shadow. I suspect that’s true for most caregiving relationships. 

 

If any day of anyone’s life were shown as a painting it would of course be shown from the artist’s perspective. However, for a caregiver any injury, illness, or condition that itself might be labeled disabling is trumped to the background and that’s that.

 

Back on Nov 10th … I shared Caregiving: Cluster Headaches - my Achilles Heel. The beast continues to rip and shred my sanity from my head. I grovel to find and reassemble the pieces, only to repeat this dance of madness hours later.

 

It is always weird while doing research to read of the spouse caregivers and family support of Cluster Headache sufferers. MS prevented Patti from helping, rather she needed my help. Megan was a child and didn’t need another parent who couldn’t help her.

 

It always seems to go back to perspective. … As long as I’ve been a caregiver, I don’t believe I ever given much thought to what it is like to receive care.

 

Anyway … this journal may continue to collect some dust over the weeks ahead. That’s NOT perspective, just some days those last pieces of the sanity puzzle are tough to fit together.

 

This entry’s artwork is borrowed from Cluster Headache sufferer David Jackson. 

Caregiving: "compassionate citizens"

National Family Caregivers Month, 2006

A Proclamation by the President of the United States of America

 

"Our country is blessed to have millions of compassionate citizens who bring love and support to family members and friends who are chronically ill, elderly, or disabled. During National Family Caregivers Month, we recognize these kind individuals who give of their hearts, resources, and energy to assist loved ones in need.

 

Family caregivers exemplify the true spirit of compassion by providing support to their loved ones and assisting with their everyday activities and special needs. These selfless people must often make great personal sacrifices to maintain the care and support their family and friends require. ... 

 

As we observe National Family Caregivers Month, we honor family caregivers who take time out of their lives to improve the lives of family and friends. Their efforts demonstrate the best of the American spirit.

 

NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim November 2006 as National Family Caregivers Month. I encourage all Americans to honor the selfless service of caregivers who support their loved ones in need. ... "

 

GEORGE W. BUSH      

http://www.whitehouse.gov/news/releases/2006/10/20061030-14.html

Caregiving: the flavor of "Thanks"giving

Thanksgiving is the genesis of our family’s story of living with Multiple Sclerosis. Flavor it indelibly “bittersweet”.

 

Pictured is Thanksgiving Eve 1989. Like any typical family our Butterball turkey and 18 month old daughter took turns sliding down the tot slide in our living room. We were typical, weren’t we?

 

It was to be a perfect Thanksgiving. We were both working, our daughter was healthy, and we owned a vintage 1904 home, two cars, and two cats. We had so much to be thankful and grateful for.

 

Patti was HEALTHY. … Yes, 4 years earlier Patti had a week or two of temporary and unexplained numbness in some fingers and slurred speech. Only one doctor had suggested “probable Multiple Sclerosis” but testing quickly exceeded symptoms and no culprit was ever ‘smoked out’.

 

We went to bed planning to wake up and start the day watching the Macy’s Parade on TV.

 

With the blink of awakening eyes life changed as shock embraced us Thanksgiving morning. Patti awoke unable to see, unable to walk, and barely talk. 

 

For our Thanksgiving 1989, Patti was hospitalized reeling with her first major MS exacerbation. Holding our 18 month old daughter, I was overwhelmed, unprepared, and facing the most desperate moments I’ve ever known.

 

... Fast forward 11 years ...

 

Thanksgiving morning 2000 I awoke in New York City. Megan was about to perform in the Macy’s Thanksgiving Day Parade as part of the group America Sings. For a whirlwind two days we had been part of all the behind the scenes magic that brings the parade to life. Juggling caregiving and parenting would have been impossible; Patti’s parents were her caregivers for the holiday.

 

With millions along the parade route, I cheered and yelled and clapped half for survival from the cold <grin> and half for sheer glee. When Megan suddenly appeared directly in front of me and from parade formation shouted a loud “Hi DAD!” it was one of those manly-man moments when I had to choke back tears. <grin>

                   

Finding the “thanks” in Thanksgiving is not always obvious, but it’s there. As a caregiver spouse and parent, Thanksgiving and living with Multiple Sclerosis as a family are forever intertwined as bittersweet and complicated memories.     

Caregiving: it's always NOW

It’s always NOW! That’s probably a fair way to capture Patti’s perspective. Multiple Sclerosis related cognitive dysfunction and deterioration of memory and short term memory basically bounds her time in “NOW”

 

It’s not earlier, it’s not even a couple minutes ago, … it is always NOW. Long term memory so far is fine, the in between is a mess of short circuits.

 

For the able minded interaction can be perplexing. We have the choice to make this emotional, or sad, or poignant. We also have the choice to roll with it and enjoy the "NOW" time.

 

Patti essentially forgets what she forgot. It is a hang up of the able minded to turn that into an abstract thought. <grin> Instead savor a great laugh a second time, an encore for the able minded, new to Patti.

 

Enjoying some ice cream over the weekend, Patti inhaled her bowl as she does with all frozen treats. Like most ‘normal’ people, I live in fear of brain freeze, something she is somehow immune to. I noticed her head ticking back and forth like the pendulum on a clock between my bowl of ice cream and her empty bowl trying to work out the difference.

 

“How Wude!” she exclaimed with a smile as she believed she had figured it out. (And in a fair Jar Jar Binks impression, I might add.) “You’re eating a bowl of ice cream and didn’t give me any.” ... In "NOW", I was guilty as charged. I could only chuckle and dish out half my ice cream into her bowl.

… Hey! This could be a new diet fad. <grin> 

Veterans Day

I wonder how many World War II era photographs are fading away stashed in homes? For Veterans Day I scanned several WWII photos I found of our family, daily life in the War in the Pacific, and even a 1944 "Liberty Pass" for Hilo, Hawaii. Then through You Tube I added the haunting bugle call “Taps” and stepped briefly back in time to this most extraordinary generation.   

Caregiving: Cluster Headaches - my Achilles Heel

        

My pain feels like a hot corkscrew suddenly jabbed into my right eye slowly twisting deeper into my brain and then back out over 20 minutes to an hour. Sleeping, working, or driving it doesn’t matter; the attack is always without warning and debilitating. 

 

Pain levels build to where if there is a merciful god I loose consciousness, mostly there is no god just writhing pain.

 

In the calm that follows I try to recapture the pieces of my sanity.

 

Such is a day in my life with Cluster Headaches. During the worst of episodes I may experience 2-3 attacks in a day. Until this week I lived 14 months of freedom from Cluster Headaches.

 

My Cluster Headaches and Patti’s Multiple Sclerosis have a shared historical timetable. They have been my Achilles Heel as a caregiver. Dr. C Everett Koop, former US Surgeon General claimed “cluster headache patients tended to have more stressful jobs and be self-employed.”

 

National Hospital for Neurology and Neurosurgery in London describes cluster headaches “as one of the most severe pain syndromes suffered by human beings.” “Far worse” than childbirth or migraines in studies of persons who have experienced all.

 

Some medications and some treatments help some sufferers take the edge off the pain of some attacks. Somehow you endure. 

 

“People try to remain awake for as long as possible to forestall the onset of a headache they know is coming.” the Mayo Clinic reports, “In the worst cases, a vicious cycle of head pain and sleep deprivation develops." ... My cycles last several weeks to a couple months, and the most frequent time for attacks is shortly after I surrender to sleep.

   

With an almost conspiratorial dark sense of humor medical studies report a consistent conclusion – “Cluster headaches are, fortunately, rare, affecting less than 1% of the population.”

… It’s sooo reassuring to know you’re special. <grin>

 

Cluster headache inspired artwork is by Bob Pahlow and JD Fletcher.

Caregiving: Medicare Part D

For 11 months now I have spent on average at least a  ‘working day’ a week battling to keep Patti’s private prescription insurance vs Medicare Part D. 

 

There is no more formidable foe than massive confused government bureaucracy. Your opponent is well staffed, well rested (they work “business hours” and field exactly one call or problem at a time) and knows only that the more paperwork pushed the better a job performance will be rated. “Care” is nowhere in their process.

 

Implementation of Medicare Part D is also impaired because it is the much ballyhooed social agenda of the Bush administration. Too many spin doctors and too few competent administrators are left in charge.

 

In a recent study Families USA forecasted problems will only increase next year.

Coverage through the "Doughnut Hole"

Grows Scarcer in 2007

    “… Unlike most forms of insurance, the Medicare Part D prescription drug program has a hole in its middle. This coverage gap, colloquially known as the “doughnut hole,” is perhaps the most bizarre and troublesome aspect of the Part D drug program.

     After beneficiaries reach their initial limit of total drug expenses ($2,250 in 2006), they have no prescription drug coverage until their total drug expenses reach a catastrophic threshold for the year ($5,100 in 2006). While beneficiaries are in the doughnut hole, they must continue to pay their monthly premiums, although they do not receive any drug benefits. Only after they have spent thousands of dollars of their own money to get out of the hole ($2,850 in 2006), in addition to their monthly premiums, does their coverage resume.

     The doughnut hole makes little sense from a medical perspective, as it financially penalizes sicker individuals who have more substantial drug needs. It has also generated considerable anxiety among seniors and people with disabilities in Medicare, who fear falling into the doughnut hole and being unable to afford their prescriptions. …”

 

For Patti, ONLY with her private prescription plan does she retain a hope of a return to homecare and most importantly affordable access to Multiple Sclerosis specific medications.

Caregiving: an adventure in voting

Living with MS as a family we’ve never missed an Election Day. I could ramble on about accessibility and voting rights but the bottom line is that Patti’s choice to want to vote in person makes every Election Day an adventure. <grin> 

 

When we lived in Maryland because Patti’s MS visual and physical symptoms required assistance she had to be accompanied into a voting booth by three poll workers representing the Democratic Party, Republican Party, and an Independent

 

Three little old ladies (3LOL) each had to read a statement for each lever, and then help support Patti to a standing position so she could pull levers herself. It was accessible voting hell!

 

One memorable year … well, it all came apart. <grin>

 

While Patti was behind the curtain being tortured by the 3LOL she began to fall grabbing the voting machine for support and tipping it over.

 

To avoid being crushed, the 3LOL push up against the falling voting machine. Patti looses her grip and drops into her wheel chair. The voting machine, now, begins to tip in the opposite direction

 

Rushing to save the teetering machine, the 3LOL stampede into a voter behind the curtain of the next machine. With startled shrieks now four bodies, in too little space, are bumping into and jostling two voting machines much like pin balls.

 

While back on the other side ... (since Patti never remembers to set the brakes on her wheelchair) … when she flops into her chair she rockets out in reverse.  Her wheelchair slams into yet another voting machine, rocking it and adding its shocked and squawking occupant to the chorus.

 

Am I’m watching a Three Stooges movie? Machines are helter skelter, a voter or two are still on the floor, the dozens and dozens of people waiting to vote are laughing so hard that strangers are leaning on each other for support, and poll workers are nearing the stroke threshold.

 

Unfazed by the chaos, Patti rolls up to the frantically huddled poll workers and loudly exclaims, "Excuse me; I don't believe I finished voting."

 

Ahhh! There is nothing quite as inspiring as democracy in action!

----------

 

P.S. Election Day 2006 is a family benchmark, our daughter votes in her first election.

 

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.

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.

 

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.

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:

http://www.ilcusa.org/prj/caregiving.htm

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.

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

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 ..."

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.

CaregivinglyYours.com

Tags: Rolling Thunder Revue, Bob Dylan, Hall & Oates, Isley Brothers, Diana Ross, Tim Curry, rock and roll tours, Patrick Leer

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

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.”

Caregiving: PATF press conference

"We the People ... "

We were invited to speak Tuesday at the Rotunda of the Pennsylvania State Capitol at a press conference for the release of the 2006 Pennsylvania Assistive Technology Foundation (PATF) Report.

They are the wonderful people who helped us to help ourselves in the purchase of our wheelchair accessible van. 

Caregiving families tend to have lower income than non-caregiving families. According to the US Surgeon General’s Office, “out of pocket” medical expenses for caregiving families average 11% of income vs 4% for able bodied families. Unlike able bodied families we cannot assume or depend on upward economic mobility. The majority of Americans who need assistive technology cannot afford it.

Wheelchair accessible vehicles cost the same as luxury vehicles. It’s tough to get an auto loan for that kind of money when a bank or lender looks at such factors.

"The Pennsylvania Assistive Technology Foundation is a non-profit organization whose mission is to provide financing opportunities to individuals with disabilities and their families that enables them to acquire the assistive technology devices and services they need to improve the quality of their lives. PATF services are available all across Pennsylvania regardless of the the borrower's age, income, or type of disability. ... PATF buys down the interest rate on all loans, provides extended repayment periods, and guarantees loans for borrowers who do not have a traditional credit history...."

With their help Pennsylvanians have benefited from adapted vehicles, home modifications, hearing aids, computers, low vision aids, wheelchairs/scooters, and more.

Beginning with simply believing in us through successful loan negotiations with Sovereign Bank they were a Godsend. … And I’d be remiss not to thank Sovereign Bank for believing caregiving families are worth the risk.  

We were glad to step and roll in front of the microphone and cameras and share. After all, if it were not for the accessible van we couldn’t even have gotten there. <grin>