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>

       

Caregiving Metaphysics Parenting

Parenting ‘competed’ with caregiving for my attention that morning of Patti’s first MS exacerbation and every morning in the years to come.

Patti could never again safely hold or carry our daughter, never changed another diaper, and couldn’t read to her … you get the picture.

On the other hand, I was blessed with an opportunity denied to most males. Raising a daughter as the nurturing parent and sharing the wide eyed wonder of childhood was beyond priceless.

At first I was overwhelmed. With confidence came the relaxation to enjoy childhood. I may have learned as much from playing with Barbie’s as from the world’s great philosophers.

There has been some debate over which of us would grow up first Megan or me. The first time you grow up everyone is in such a rush.

There were some things I never saw coming such as the first menstrual bleeding. Hey! I’m a guy raising a daughter, when did she get to be a young woman?

I would do the single digit years again any time any place. The teen years, once is enough.

Parenting & Caregiving also had a dark side and eventually I could no longer work full time. With Patti’s progression, bladder and bowel incontinence plus outbursts of emotional lability were potential nightmares with Megan and her friends playing at the house after school. There is only so much a young child can do for a parent. I had to be there. Again, it’s about choice. I chose family.

We worked to keep the family together. We began to divide time up between ‘family activities’ and ‘able bodied activities’. After all Megan would have to live in an able bodied world. So many things can only be learned by doing them.

Megan, at age 16, and we as a family faced her Mother’s admittance to a 24/7 care facility. That’s more than unusual at an age when most kids are trying to fly under the radar.

Home caregiving rarely stands alone. In ‘our story’ parenting was an equal partner from 18 months to 18 years.

CaregivinglyYours.com

Tags: caregiving

Caregiving Metaphysics Gender

Over the decades I’ve learned the hard way that being a guy works against you but can be overcome.

Besides the oodles of email, I’ve also coached or counseled new caregivers through our local NMSS chapters.

Overwhelmingly it is the male caregivers who get injured physically and or emotionally and begin to doubt themselves or raise concerns in the person who needs them.

Our American male culture is based on the cowboy mythology.If there is a person in need the hero rides in guns blazing with absolutely no thought of themselves or collateral damage.

I’ve been lucky so far with only one hernia surgery. In the early years for a family outing I would assist Patti into the car, put our daughter into her car seat, then dead lift the scooter into the back. Being a ‘manly-man’ I was not about to disassemble or use a lift to get Patti’s scooter in and out of our vehicle. … Enlightenment followed surgery.

YOU MUST TAKE CARE OF YOURSELF FIRST OR YOU ARE OF NO USE TO ANYONE ELSE. Instead of counting to 10 I repeat that to myself constantly before beginning a caregiver action.

Over the years and Patti’s continuing progression I’ve learned to check the cowboy in me and learned for example to “safely break falls” rather than try to overpower and stop a fall. After all, able bodied couples don’t think twice about tumbling to the ground for fun.

Resist the male urge to overpower problems. Look to creativity and a wider perspective.

Learn to develop and trust intuition. That’s tough for guys but critical for longevity in caregiving.

Homemaking skills can be weak to non-existent in many males. You will loose traditional male bonding time when you begin to discuss laundry detergent instead of sports. Don’t worry you’ll find a way to have Tide and Cheer compete. … A vacuum cleaner IS a power tool! … In the kitchen, remember the world’s great “chefs” are men.

Above all caregiver cowboys do not charge in with those proverbial guns blazing, you’ll unnerve the person you are caring for and most likely hit yourself with a ricochet. Then who is left caring for whom?

… Or don’t ask for directions, believe me I understand. You too can learn the hard way – enlightenment follows surgery.

CaregivinglyYours.com

Tags: caregiving

Caregiving: birthday

Patti’s birthday was Monday and she got it into her head that she wanted to go to a casino. That “mountain momma” West Virginia was the nearest, just 80 minutes to Charles Town.

 

She had a grand time. Obviously attended assistance is required but that didn’t stop her enjoyment of slot machines of spinning fruit, talking leprechauns, sliding seals, and enchanted forests.

 

Dinner was excellent and after 4 hrs Patti was “ready to go to bed” <grin>. Surprisingly we had lost only $22, it costs more than that for a movie and concessions.

Caregiving: scootering in fog

No ‘gypsy’ closet today, I reconfigured the van with Patti seated in her wheelchair and loaded in her scooter.

 

We were doing some all terrain scootering in a local park. Just before twilight a bank of ground fog began to form over a meadow.

          

The MS daredevil gave it a look …

         

And charged right in riding around in the fog …

         

When the fog cleared Patti was still there though headed in the opposite direction. <grin>

         

While her scooter has a beep beep sounding horn, I guess a proper fog horn could be in order!

Caregiving: gypsy closet

Sometimes “living with MS” can yield an actual advantage. Our wheelchair accessible van has a lowered floor and no middle seating section. So with a little creative rigging I discovered I could create an actual walk in closet on wheels.

 

With Fall sneaking up, our daughter needed some clothes from home. Rather than try to figure out what she wanted I just loaded all the clothing from her closet and dresser into the van and brought her room to her. She could just step into the gypsy walk-in closet, take what she wanted, and the rest went back home.

 

She was only expecting some requested items, but after the surprise ended up making a couple trips up to her dorm room. <grin>

 

… and it was great to visit over a dinner of Shepherd’s Pie at a local Irish Pub.

9/11 Anniversary

10 weeks after the 9/11 terrorist attack on New York City our daughter performed in the Macy’s Thanksgiving Day Parade. As the first major NYC public event in the post 9/11 world, that Macy’s Parade was overwhelming with anxiety over alertness yet at the same time overpowering with the spirit of togetherness, pride, and resolve that swept this country. Pictured is a NYFD firehouse off Times Square that lost 15 firefighters responding to the attack.

 

In Spring of 2002 we paid our respects in person to the hallowed ground that once was the World Trade Center. Letters, cards, and children’s drawings encased in plastic from families to loved ones lost in the Towers wallpapered the church fence across the street. You just read and read and read. You either cried or fought back tears. Total strangers hugged and supported each other. I’ve never experienced anything like it. … Standing sentinel over the crater and grave for thousands stood a cross of steel created by the collapse.

      

On the 1st Anniversary of 9/11, Megan and I boarded and safely traveled on an airplane. Waiting in the airport for takeoff, TV’s droned on with non-stop news coverage replaying the events of the previous year and ‘talking heads’ unending babble about how terrorists might mark this 1st anniversary. I feel for the thousands traveling by air today and the annoying speculation of the ‘talking heads’.

 

My heart goes out to those families that left those notes and children’s drawings to loved ones lost. Their love and pain will never be forgotten.

…………………

How we as one family lived 9/11/01 was shared a couple years ago in 9/11.

 

… and sometimes it pays to hang on to pictures like this one from January of 1998 taken at sunset from the observation deck of the Empire State Building. Our daughter will never be age 9 again and neither will the lower Manhattan sky line ever look as pictured.

                

Caregiving: processing change

     Patti was going through a rather lethargic week, often wanting to stay in bed through breakfast and lunch. Isolated incidents are typical of MS fatigue but when clustered together like this you have to look for something more.

     This is also an excellent example where family MUST stay involved as medical advocate even after admittance to a care facility. Professionals would soon begin to tinker with either her anti depressant or her synthetic thyroid medications. It would, after all, be a logical and ‘easy’ attempt to find a solution.

     MS cognitive dysfunction impairs her ability to express feelings and emotions.  Talking with the nursing staff I kicked around the idea she may be trying to process our daughter going to college. Parents with able bodies and minds experience anxiety and loss as they adjust to this passage. The same process is there for Patti except cognitive dysfunction can leave so many loose ends disconnected and confused.  

    I focused a series of outings to replicate activities we often did that would include Megan. For example, with the remnants of “Ernesto” falling we headed to ‘our’ ice cream parlor to pick up a hand packed pint of ‘Deer Tracks’, the favorite flavor of Patti’s and Megan’s.

    Memory loss and confusion symptoms work against lengthy or deep chats so I’d take the opportunity to chat in brief conversations about Megan attending college. … During one such outing, our daughter called on the cell phone on my belt. (Sometimes you just get lucky!) … The call really lit Patti up. … Handling any telephone is physically difficult for Patti, and it takes an “attended” call to be successful. Cognitively no phone call will last long; the process just confuses her too much. Of course, the fact that my cell phone "meows" instead of rings amuses and confuses not only Patti but most people. <grin>

     Bottom line is that the cluster of lethargic days faded away. … The last two mornings changing temps have created thick ground fog which clears as the sun burns through. Fog always helps me to grasp cognitive dysfunction except with this symptom the fog doesn’t burn away. You wander in and try to help. 

Caregiving metaphysics vs philosophy

My “re-education” ironically began turning to philosophy even though I stubbornly refuse to label my new thinking a ‘philosophy of caregiving’.

Hey, I was a 30 something American male! In the “new age” USA of the late 80’s and 90’s, “what about me?” thinking seemed to surround me. The increasing isolation of caregiving was confusing.

I knew I had to push thinking about “me” into the background. I became intrigued with the Roman Stoics trying to pursue a path toward a Stoic indifference to my own existence. “Trying” is the operative word.

If harmony could be achieved by balancing a conscious “indifference to my own existence” with the demands of caregiving and parenting that certainly seemed a path worth exploring.

It sure beat the despair and loneliness that swallowed me each night when the day’s tasks were done.

Always hearing words like handicapped or disabled started to rub me the wrong way. What Patti was going through and we were going through as a family was not “dis” anything. In Friedrich Nietzsche, I found encouragement reading that tragedy gives us nobility, power, and heroism.

“Life is a fight with fate as well as passions,”

practically became a mantra as the years rolled by.

It was refreshing to hear that the “struggle” itself was noble rather than the stereotypical American view that it’s all about achieving success.

I dusted off a life long fascination with Henry David Thoreau. Half a dozen times in my life, I’ve made “pilgrimages” to Walden Pond. Pictured I’m hanging out with a statue of ol’ Henry when I took Megan for my most recent pilgrimage.

On my first visit as a parent and caregiver, we skipped stones across the surface of that transcendental eye of the universe, Walden Pond, and found fresh meaning in the often quoted line from the conclusion of "Walden".

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away."

Caregiving is unquestionably the beat of different drummer.

Choice unendingly stalks the caregiver. Feeding my mind helped, and seasoned the recipe for my gumbo metaphysics of caregiving.

CaregivinglyYours.com

Tags: caregiving, Thoreau, Nietzsche

Caregiving metaphysics outline

How many people go to bed expecting to awake to a different world in the morning? … Now, just hold on to that thought for a couple paragraphs.

Back in the Spring, I started talking about my recipe for “gumbo metaphysics” that I’ve learned through 20 years of “living with MS in our family” as the spouse caregiver in Gumbo Metaphysics Part 1.

That first stage of “accepting” caregiver status mainly was about “defending” my family. I thought like a defender.

That mindset was not going to work for the second and far longer stage of caregiving.

Plus the onset of Patti’s disabling MS symptoms were so dramatic and severe that all traditional family “roles” where immediately swept into a maelstrom.

How dramatic? - Overnight! … and that brings us back to my opening question.

With a flair for the macabre, MS chose Thanksgiving morning 1989 for this transformation of our family.

I know this may sound like a plot you’ve heard before, especially if you’ve read Kafka’s “Metamorphosis”. Except that works of fiction can be put down and read at your convenience.

Unlike fiction, I could not simply “put down” the reality of our then 18 month old daughter and Patti who had awoke unable to walk, see, or even talk. … We went to bed an able bodied family.

Yes, we too had heard that MS is ‘not supposed’ to be like this. … Rule #1 - Multiple Sclerosis is the proverbial 800 lb gorilla and does whatever it wants.

Whatever I thought life was about needed to evolve immediately. In our story parenting ‘competed’ with caregiving for my attention that morning and every morning in the years to come.

I needed to ‘think’ differently and fast. The other option was to run, and that certainly crossed my mind.

The US Surgeon General’s Office tells us that the average length of time spent on home caregiving is 8 years. This dual stage of single parenting and home caregiving lasted almost 15 years before the 24/7 care facility era began.

In a series of entries to follow I plan to try and share my “re-education”, through such topic thumbnails as parenting, faith, homecare, economics and our eventual need for a 24/7 care facility.

Ours is a story about life, not death. Caregiving for a progressive chronic illness such as MS is not the same as the palliative care of a terminal illness. Our story is about one family trying to “live with” MS.

(to be continued)

"To cure sometimes, but to comfort always"

Dame Cicely Saunders

CaregivinglyYours.com

Tags: caregiving

Caregiving: bureaucracy & free thinkers

     Yesterday we renewed Patti’s Pennsylvania Photo ID. In post 9/11 America whether you drive or not you NEED an official photo ID. 

    Any such collision with the bureaucracy of the able bodied is always interesting. For example, Patti cannot see far enough to “please look at the red mark on the camera and smile if you like”. My favorite was “Please sign your name WITHIN this box on this card” to which Patti responded “What card?” <grin> Everyone must maintain patience and a sense of humor.

     … and as noted in another caregiver journal, surprisingly this motor vehicle satellite center also had NO designated accessible parking. We used a grocery store’s accessible parking about a block away.

     In Pennsylvania you also have the option to take care of voter registration at the same time. Confirming her voter registration I had to smile, our family of three includes one Democrat, one Independent, and one Republican. “Living with MS” has obviously created an environment of free thinkers <grin>.

Caregiving: Writes of Passage

           Writes of Passage 

Our daughter launches her life,

Moving proudly into the Universität.

Walking parents as ‘couples’ surround me.

Thousands and I can’t see a wheelchair.

Mom’s not here, safe, maybe aware.

When did reality become the frontier?

Daddy travels West, yep, there’s a sunset.

Empty home? Not if you ask the cat.

Caregiving: scootering

     Caring is more often than not intuitive. Physical and cognitive symptoms can easily intimidate you if you only look at cause and effect. 

     Medical professionals sometimes seem to hang an albatross around their own necks with their dependency on empirical evidence.  Quality of life is an entirely different fight than medical treatment.    

    For example, “scootering” or going for rides on her electric scooter for whatever reasons empowers Patti and makes her FEEL better. 

     Patti is legally blind, easily confused, and quickly forgets what she is doing. These are not logical credentials for operating an electric scooter.

     It falls on me as caregiver to find a way to make it possible.  

  

     City Island is a mile long island in the middle of the Susquehanna River. It is many things to able bodied people, however above all it has a road (closed to the public) that encircles the island. Here on non-peak times Patti can roar away without risk of running into crowds of pedestrians or off a narrow sidewalk.

 

     On narrower sidewalks or paths I have to walk along side her and operate her scooter controls. This not only takes away the empowerment of scootering but invites outbursts of frustrated emotional lability.

 

     Some parks can be OK but even grassy fields have the potential of holes, rocks, etc that she is unable to see and can abruptly halt the scooter, risking catapulting her out.

 

     Progression of cognitive symptoms has lessened her ability to respond correctly to verbal cues, such as “veer right”, etc. Now I often use a more mechanical variation of “running with the bulls” for directional help, “Patti, just drive toward my voice”. … and prepare to dodge the oncoming whir. Charging at me for a target seems to add to Patti enjoyment <grin> and keeps me limber.

 

     It's doubtful a medical professional would endorse such behavior but the bottom line is it empowers Patti and improves the quality of her life. Feeling good, I believe, is good medicine. (Unless of course, I dodge the wrong way <grin>)

Caregiving: financial competency test

     Dementia and Alzheimer’s Disease are scary words to the public and when read in a headline too often people skip such articles and miss the phrase “Related Disorders”. MS cognitive dysfunction symptoms are part of that catch all phrase “Related Disorders” as are many illnesses.

 

Financial Competency Test for Dementia Patients Unveiled

     BIRMINGHAM, Ala. A team of UAB doctors has developed a 25-minute test that physicians can use to determine the competence of patients to handle financial affairs….

     … patients lose arithmetic and other basic money management skills, and the ability to make both complex and simple financial decisions.

     "They also become highly vulnerable to financial exploitation by others."

     "The findings suggest that financial capacity first becomes impaired in the MCI (Mildly Cognitively Impaired) period, ...”

 

       We learned this lesson the hard way over 10 years ago when Patti quickly ran up a couple thousand dollars of QVC charges on our VISA and couldn’t even really remember what she had ordered, and did she even get delivery. 

     It was a shock and a wake up call about cognitive impairment. And believe me few things are harder than when you MUST begin to legally define someone’s competency. Since my earliest age I was raised that ours is a nation of individual liberties and freedom. The morality and responsibility of competency gnaws at your soul. 

      Yet on the other hand financial exploitation of the cognitively impaired IS real. QVC is not alone among the predators.

     A financial competency test could be so beneficial to families. An early warning is much safer for all than an expensive wake up call.

Caregiving: throwing stones

     A choking person alarms people. That may be understating the reaction, people tend to freak out. However it is just another day in our story of “living with MS”.

     Patti’s symptoms of Dysphagia can confuse all swallowing related functions as Myelin deterioration short circuits communication between brain and appropriate muscles.  Patti can really choke if not monitored and assisted with eating, but also her brain can go into ‘choking mode’ without any actual threat to her safety.

     Sadly this malfunction seems to be increasingly impairing one of her favorite outings, movies. Concessions have nothing to do with these episodes. Rather they seem to be triggered if a scene is too startling, or too funny, or too thrilling. What begins as a cough or a clearing of the throat accelerates to choking.

     The first rule of first aid for choking is “If the victim can speak, cough, or breathe, DO NOT INTERFERE.” Accompanied by bursts of cursing <grin>, flailing about of arms, and “pauses” so she can catch her breath before continuing, these episodes are not “at risk”.

     Regrettably if not interrupted they can trigger the involuntary muscle responses involved in gagging and vomiting.

     Usually I try to distract her and simply tell her she is not choking, just breathe normally. Sometimes her brain listens and sometimes it does not.      

     After an attempt or two, well intended fellow movie patrons often begin to offer suggestions. “Shouldn’t you hit her on the back?” “Do you want me to go get help?” or less well intended have begun to complain … “Hey! We’re trying to watch a movie!”

     Once out of the theatre and in the hall her bout of choking ends. My theory is that the sudden change in environmental stimuli with bright lights, NO movie screen, etc ‘restarts’ her brain much like rebooting your computer when it locks up.

     Such episodes were once rare but now probably affect 1 out of 3 movies anymore.

     I’ve never found any formulas for success to insure Patti’s involvement in family type activities. Progression of MS symptoms can be as formidable as Goliath. As a caregiver you just have to keep throwing stones.

Caregiving: ... family first

     Most people are only familiar with illness or incapacity in an acute situation. If you get sick then you get better. If you sprain an ankle, you may hobble on a crutch for a brief period, then you walk freely again.

     Another common bond most share is that a catastrophic medical condition ends in death.

     “Living” with a chronic illness is an entirely different universe. There is NO Hallmark “Get Well Soon” phase and there is no end in sight. Yet as long as there is life there is hope and you learn to “live”!

     I never gave all this much public thought in the beginning. Then this journal soon began to take on a life of its own. Within a year it was highlighted in Australian carer publications, Eldercare.com, and even Forbes.com referenced it in an article on Medicaid planning. Questions in emails began to light up my mail box from readers of those articles.

      I share OUR story, which is all I really can share. I also share our lives because families facing the challenge of one member living with a chronic illness or disability are still families first.

     Children are raised, bills are paid, groceries bought, meals cooked and lawns are mowed. People still worry, laugh and cry. It isn’t that we do less; probably we do more than able bodied families because we have to.

     Family activities are as much a part of caring as the nuts and bolts of a wheelchair. You MUST create the time and the means for them.