Wednesday, September 27, 2006

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>

Sunday, September 24, 2006

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.

Tuesday, September 19, 2006

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.

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.

Friday, September 15, 2006

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!

Thursday, September 14, 2006

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.

Monday, September 11, 2006

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.


Sunday, September 10, 2006

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. 

Thursday, September 07, 2006

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.

Sunday, September 03, 2006

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

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