Caregiving: health care reform

New York Governor Eliot Spitzer (D) revealed his plans for a "patients first" reform of health care.

 

California Governor Arnold Schwarzenegger (R) unveiled his plan for universal health-care coverage.

 

Pennsylvania Governor Ed Rendell (D) is touting his ultimate goal of providing medical coverage for every resident while reducing health care costs statewide.

 

40% of the Electoral College votes necessary to elect a President are held by these three states. … Is it any wonder that Presidential candidates of both parties are banging the health care coverage drum across the USA?

 

It’s nothing new that health care gets dusted off every Presidential election and then forgotten. However I don’t believe I can remember Governors of 3 of the most populated States going to political war over health care coverage.

 

If you have coverage, at the moment, then this may all seem like such a non-issue wrapped in a possibly false sense of security.

 

If you don’t or if the ever increasing costs are shrinking your personal or family resources than you know how critical this issue is and will be for everyone.

 

It’s complicated, the deck is stacked, and genuine reform can seem overwhelming.  ... In 22 years of living with Multiple Sclerosis as a family we’ve known too many 'masks' and 'faces' of health care coverage and prescription plans.

 

Is this finally the time someone cuts the Gordian Knot entangling this mess? I'd like to hope so.

 

"The key thing is not to get caught up in ... how you get there," Gov. Schwarzenegger said. "The key thing is, we're going to get there."

Tags: caregiving, Multiple Sclerosis, health care reform

Caregiving: "MS may be 50% more common ..."

             Multiple Sclerosis Rates Up 50%

 

Multiple sclerosis (MS) may be 50% more common in the U.S. than previously thought, according to a new research review.

 

Almost one in 1,000 people in the U.S. have MS, according to the review.  …  findings appear in the Jan. 30 issue of Neurology.

 

    * Alzheimer's disease: 67 in 1,000 people 65 or older

    * Parkinson's disease: 9.5 in 1,000 people 65 or older

    * Autism spectrum disorders: 5.8 in 1,000 children

    * Cerebral palsy: 2.4 in 1,000 children

    * Stroke: 10 per 1,000 people

    * MS (Multiple Sclerosis): 0.9 in 1,000 people

    * ALS (Lou Gehrig's disease): 0.04 in 1,000 people

   

… they say their findings show "the burden of neurologic illness affects many millions of people in the United States."

 

(click on blue headline for full article from WebMD Medical News)

Tags:  caregiving, Multiple Sclerosis, neuroligic illness

Caregiving: "I was going to help, but ... "

People who basically do nothing neither for good nor bad have been irritating other people for centuries.

 

“I was going to help, but …”

“I almost helped, but …”

“I wish I could help, but …”

 

I was reading an entry in another journal Please don't take life for granted, and I was struck by Lisa’s comments on how these non-committed offers to help really can impact people who are dependent on others.

 

As a spouse caregiver, I too have heard it way too often and could fill pages with my theories about my fellow humans.

 

I could not get through the endless phone conversations with medical insurance bureaucrats without my voodoo doll (pictured above). … When I hear, “I really wish there was something I could do to help, but …” I stick a pin in some body part of the voodoo doll. It’s kind of weird how it rattles the person on the other end when I ask them how their arm or leg or head is feeling. <grin>  

 

This ‘sin’ of non-commitment isn’t new. Almost 700 years ago the Italian poet Dante Alighieri in his masterpiece “Commedia” damned the souls of people who do not take a stand in life to their own special place outside the gates of hell. In Dante’s Inferno they are forever pursued and stung by wasps while maggots drink their tears and blood. … The mafia may be more forgiving than the wrath of an Italian poet. <grin>

 

Considering all the above … anyone may want to think long and hard before ever beginning a sentence, “I was going to help, but …” 

Tags: Caregiving, multiple sclerosis

Caregiving: Pennsylvania Farm Show

Imagine for a moment that you can never leave the person you are with unattended for the duration of your outing. No popping into an opposite sex bathroom, no just running into a store to get something, no go getting the car to bring it around, no anything where you leave someone out of your sight for even the briefest moment. 

 

Any successful outing has to be “symptom” customized. In Patti’s case plans must incorporate visual impairment, non-ambulatory, incontinence, dysaphagia, and cerebral issues such as emotional lability, memory loss, and mental confusion. Physical symptoms are reasonably manageable, cerebral symptoms are wild cards.

 

Picking the right places, activities, and customizing reduces potential frustration level which in turn reduces the chances of emotional flare ups.

 

One of our favorite yearly outings is the Pennsylvania Farm Show. It’s perfect for the above formula especially with 25 “indoor” acres to wander around (the equivalent of 19 American Football fields). Everything is extremely “hands on” so proximity is optimum for visual impairment. You not only see farm livestock you can interact with the critters. The same with produce and agriculture except that Christmas trees and pumpkins aren’t as fun as cows or alpacas.

 

We are not farmers so there is always a sense of wonder in visiting their world. And for whatever reason farm animals find people in wheelchairs apparently equally interesting. Patti particularly enjoys visiting with the goats as they futilely try to eat her wheelchair each year.

 

Oh! About the “yuk” picture. Patti has a ‘cognitive issue’ of way too loudly and rudely “yukking” things she personally does not like. Recently it has been poinsettias. We found ourselves in an indoor “field” of poinsettias which were being insulted with a barrage of loud and louder “yuks”. As I was trying to shhh Patti, I noticed the sign behind her and couldn’t resist the picture. “Mr. Yuk” is a pesticide safety program of Penn State University.

         

This pictured sculpture of the Liberty Bell and Ben Franklin is made from 800 lbs of Land o’ Lakes butter. After the Farm Show the butter sculpture was converted to biodiesel by Fry-o-Diesel a Philadelphia company which has developed technology to convert waste greases from restaurants into high quality biodiesel.

 

Hey, the more alternative fuel sources the better! Why not add those good old greasy diner aromas to the fumes of rush hour? <grin>

Tags: Caregiving, Multiple Sclerosis, Pennsylvania Farm Show

Caregiving: Why do good?

I found this interesting food for thought …

 

Why Do Good? Brain Study Offers Clues

 

“People may not perform selfless acts just for an emotional reward, a new brain study suggests.

 

Instead, they may do good because they're acutely tuned into the needs and actions of others.

 

Scientists say a piece of the brain linked to perceiving others' intentions shows more activity in unselfish vs. selfish types.  …

 

"It's not exactly empathy," … but something more primitive.

 

… a whole other brain region, called the posterior superior temporal cortex (pSTC), kicked into high gear as altruism levels rose.

 

The pSTC is located near the back of the brain and is not focused on reward. Instead, it focuses on perceiving others' intentions and actions…

 

This type of perception would have allowed humans' more primitive ancestors to quickly pick out a potential threat -- a crouching lion, for example -- from amid a mass of less important stimuli.

 

The bottom line … is that altruism may rely on a basic understanding that others have motivations and actions that may be similar to our own.”

 

(click the blue headline for the full article)

Tags: caregiving

Caregiving: level of disability

Multiple Sclerosis complicates labeling because physical and cognitive symptoms progress differently in each person. Yet a numerical level of disability and ability is needed and used for communication within the medical profession. 

 

Numbers can be difficult to wrap your mind around. Pictured below are more visually oriented graphs of Patti's MS progression and resulting disappearing abilities. 

            

Neurologists use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s disability scores in the upper levels at 8.25.

 

Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are commonly evaluated on the Modified Barthel Index of ADL on a scale from 0 to 100, with 100 being “independent”. Patti’s 'abilities' score in the lowest percentiles at 10.

 

I believe it is advisable to periodically “quantify” Patti’s level of Multiple Sclerosis progression; and to ‘remind’ myself, family, friends, and readers of her dependence on others in measurable terms. 

 

Not everyone with MS may have this same level of disability. However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)

Tags: caregiving, Multiple Sclerosis

Caregiving Metaphysics PROGRESSION

Progression drives caregiving and that frustrates the hell out of me. Multiple Sclerosis’ unpredictability has thwarted most of my attempts to anticipate it. “Psychic caregiving” might work, but I’m not that gifted.

An enigma of caregiving is that I’m locked in a fight I know I cannot win, while progression constantly ups the ante.

“Keeping Patti at home” was such simple sloganeering in the early years. Remodeling regularly to adapt to physical progression, and just raising the bar on my limits of endurance stayed the course for the first 7 years.

Progression to the double whammy of bowel and bladder incontinence and “dementia like” symptoms was the turning point. Our daughter and her friends returning from elementary school each day were encountering too much for kids that age to have to cope with. Patti’s cognitive symptoms prevented her from directing her own care and basically made part time homecare helpers impossible to incorporate into daily living.

Somehow for another 8 years, basically on my own, I still managed Patti’s care and the environment to keep the house a home. Progression however kept increasing “at risk” situations for Patti. It was more than scary when Patti started a fire on the kitchen stove while unattended. Catheters were experimented with but Patti would get confused and pull them out. Our new “physically” accessible home boomeranged on us as cerebral symptoms rapidly progressed. Falls actually increased, and Patti was pulling things down on herself. She was getting outside confused and disoriented.

Time was my kryptonite and after 15 years of “keeping Patti at home” Patti and I jointly explored and decided on the transition to the 24/7 care facility era. Patti has never expressed a doubt about the decision.

Nor have the nearly 3 yrs of the 24/7 care facility era been an end. ‘Hands on’ caregiving continues to occupy at least 40 hrs a week. The majority of afternoons/evenings each week I bring Patti home or out before transferring and ‘tucking’ her in to bed by myself at her care facility. This phase has been about evolution to professional team care and most importantly safer care.

Progression is the only constant in caregiving. It relentlessly crushes home caregiver motivation, inspiration, or whatever. I can not ‘sugar coat’ that reality. … On the other hand, if you can appreciate the esoteric reward from finishing your morning coffee then running full speed into an ever higher brick wall day after day, year after year, you will do fine. It can be done.

('series' to be continued ...)

CaregivinglyYours.com

Tags: caregiving, Multiple Sclerosis

Caregiving: Spring Weekend in January

After 61 years the record for high temperature on January 6th around here was shattered on Saturday peaking at 69 degrees. 

 

(Global Warming? Well, for Al Gore abnormally warm winters in the East certainly are not good personal omens. The last time it was this warm in the beginning of January was the year George W Bush was born. <grin>)

 

We seized this extraordinary Spring Day in January to do some scootering around City Island in the Susquehanna River. Over the last year, I help Patti to navigate with her progressing visual impairment by “follow my voice”. Of course, I’ve developed a dodge step, like a matador, to our routine. … It was Megan’s first experience as Patti locked in on her voice for scooter navigation. I forgot to warn Megan. <grin>

         

Colorado’s snow was nothing but rain by the time it hit our Spring temperatures and drowned the rest of the weekend. We adapted by playing indoors and enjoyed a final weekend with our Christmas Tree, our daughter’s last full weekend home from college, and the Philadelphia Eagles on TV advancing in the NFL playoffs.

 

Watching a TV football game with Patti especially one that goes down to the final play of the game has a special dimension because her MS related short term memory loss and mental confusion can send her rooting for any team, even teams that are not playing. <grin>

 

Getting an 18 year to participate in family pictures is more challenging than grabbing our cat as her designated stand in. (Notice the proper method to hold a squirming unhappy cat with extended claws away from exposed flesh <grin>.)

         

 

One of the Philadelphia Eagles players in response to a reporter’s question about continuing to overcome their season of adversity gave a sound bite answer that struck me as being larger than the game or even good advice for daily living … “We cherish every moment we get to play.” 

 

Caregiving: choking / dysphagia

Holiday gatherings bring out the old pictures and tapes. This year a gem was rediscovered in a video tape of a 1999 news story featuring Patti and her parents.

 

Patti was choking to death … now in a little over 2 minutes the ‘magic’ of You Tube will retell the story and happy ending. Double click to play video.

Megan and I were home in Maryland when this occurred. 

 

On the MS progression timeline dysphagia was a remitting / reoccurring symptom in early 1999. Multiple Sclerosis can be dangerously deceptive. Accepting MS progression is challenging for family and friends as it is for the person with MS. “To care” demands vigilance.

 

Regardless of disease or health, emergencies will happen. Knowing how to ask for help and how to listen CAN save a life.

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!

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