Wednesday, April 30, 2008

Caregiving: a tale of two Americas?

With local neighborhoods wrapping up their Walk MS (formerly known as MS Walk) it is time for Hollywood. 


In case your postal worker kept your invitation …



“We Heart to Erase MS”

FRIDAY, MAY 2, 2008



"… Tickets start at $1,000. To purchase tickets for the event, please call (310) 440-4842.


Co-Chairs Nancy Davis and Tommy Hilfiger welcome celebrity friends including Forest and Keisha Whitaker, Natalie Cole, Sharon Osbourne, Ray Romano, Teri Garr, Rachel Hunter, Harry Hamlin, Daisy Fuentes and many more …"


Auction items include a shopping trip with Paris Hilton. ... I wonder if you can bid with an economic stimulus check. <grin>


Multiple Sclerosis knows no socio economic lines. Co-chairs, Nancy Davis has MS and Tommy Hilfiger’s sister has MS.  


Last year's event raised 2.5 million dollars. 


NOW ... outside the lights of Hollywood


"Paying for healthcare is reflected not only in family budgets but in life decisions," said Drew E. Altman, president of the Kaiser Family Foundation. Economic Problems Facing Families, April 2008


… some families have to choose between paying medical bills and buying items such as food.


37% indicated they had suffered financial troubles over the past five years due to medical bills.


17% used all of most of their savings to foot the bill for medical costs.


12% were unable to pay for basic necessities such as food, heat, or housing as a result of medical bills.


7% said they or someone in their household married so they could have access to a spouse's health care plan.


Are these two Americas or are we looking at apples and oranges?


$2.5 million in a night even from the gilded is no easy feat and generous by any standards. Choosing to split a pill in half to eat is determined resilience. Both are examples of the best of what makes this country what it is.


What we NEED are political leaders that have a clue.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Monday, April 28, 2008

Caregiving: "aggressive" episodes

Frustration through cerebral deterioration can trigger violent or, the politically correct, “aggressive” episodes.


As caregivers, we tend to ‘scrub’ incidents whether sharing with others or even remembering ourselves.


In earlier years, in episodes of Multiple Sclerosis emotional lability Patti slapped at and scratched at me. Experience taught me her range. <grin>


Patti’s cousin shared an anecdote from his employment at a care facility. Trying to comfort a tiny, elderly, and frail resident in a wheelchair he leaned close. She hit him so hard he could barely keep his feet with stars spinning around in his head.  


An autistic teenager has a sudden ‘aggressive episode’ and attacks their parent on a public sidewalk. Four strangers, unaware of dynamics of autism, become involved to restrain the youth before police and emergency personnel can arrive.


Violence is a spectrum from mild to at risk. It does and should change the caregiving equation.


Caregivers by nature are control freaks and control of the environment and stimuli makes it all work. Yet the power to control unravels as you expand your environment and the people involved in caring.


Violence toward a ‘contracted’ home care worker will pretty much end the home care era. Ironically, frustration is more apt to be higher with the variables of contracted workers. While hitting family is not right it has little legal consequence.


Violence contracts your world. Public episodes are out of a caregivers’ control. Strangers are random variables and exponentially increase the chance of someone getting hurt.


Frustration PLUS dependency on others is complicated, as is the caregiving involved.


Viewed through the introspection of “what could I as a caregiver have done different” to prevent the episode, right and wrong loose boundaries even definitions.


Knee jerk psychiatrists might raise battered something syndrome. Nor does codependency exactly fit as a label.


Caregiving, especially in this shadowy corner, is driven as always by the heart not definitions  … and a wise appreciation for range of reach.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Sunday, April 20, 2008

Caregiving: ghost writers on the storm

Critical topics can sometimes be drowned out in the noise. Maybe it is just bad timing, maybe the issue is difficult to personally relate to, or maybe even want to believe.


“Merck … wanted to make piles of money, and like a sly schoolchild it found some friends to write its term papers and bend the system. Unfortunately there were not mere grades involved as a consequence but lives.” (Journal Times, WI)


“… the symbiotic relationships that have developed between doctors and drugmakers present conflicts that can no longer be ignored.” Medical ghosts (Baltimore Sun, MD)


"We've got to stop this," said Dr. Catherine D. DeAngelis, editor of the Journal of the American Medical Association. "People are being hurt. We've given away our profession."


DeAngelis, a pediatrician who was vice dean for academic affairs at Johns Hopkins School of Medicine, said she was often approached while on the faculty to put her name on research that she hadn't conducted.


Bottom line is with the money in ghostwriting and medical research is the dog waging the tail, or the tail wagging the dog?


Are they clueless? The Food and Drug Administration, OUR tax dollars at work, incredulously appears to be opening the door for more potential abuse.


“Food and Drug Administration has been considering a proposal to let drug makers use reprints of journal articles in promoting drugs for so-called off-label uses the F.D.A. itself has not approved.

     Opposition to the F.D.A. proposal has come from a diverse group that includes Public Citizen, New York State’s health commissioner and the Blue Cross Blue Shield Association, a trade association of 39 major health insurance plans.

     The pharmaceutical industry is supporting the F.D.A. proposal.”  

F.D.A. Plan on Medical Articles Takes More Heat (New York Times, NY


DUH! “The pharmaceutical industry is supporting the FDA proposal”. Why is that not surprising?


On the other side of the coin, for some medical conditions, disorders, or diseases especially something like Multiple Sclerosis, what were once “off label uses” have become protocol.


While medical ghost writers may make scientific data appealing, there must always be a difference between promoting hope and preying on hope.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Saturday, April 19, 2008

Caregiving: home care, care facility, house call?

“The current flu season has been more severe than the last three, with more doctor visits and more deaths from flu and pneumonia, federal health officials are reporting.” 


When you are a caregiver then the above is so much more than a news sound bite.


Patti’s Multiple Sclerosis is all about a compromised immune system. A doctors visit is an odyssey with a non-ambulatory, wheelchair confined person. Cognitive problems and memory loss impairs Patti from successfully communicating and participating in her own medical care.


Even though Patti was vaccinated, the CDC reports flu vaccine failing in US.


(Excuse me for a moment; this all drove me to my Echinacea bottle for a fix.)


Wednesday, while out of town, I received a call on my cell phone from Patti’s care facility.


Her doctor while making rounds had not liked the sound of Patti’s chest and her level of upper respiratory congestion. Doctor ordered an X-ray and upper respiratory protocol which involved immediately beginning prescription nasal decongestant and cough medicine.


In the home care days this scenario as a caregiver would have been quite different. Hours if not the better part of day would have been involved, making an appointment and transporting Patti to doctor’s office, then X-ray lab, and of course stopping at a pharmacy for prescriptions. Plus periodic return trips home to change Depends and clothing for bowel and bladder incontinence.


At her care facility medical care comes to her, the doctor, the x-ray machine, and prescriptions are delivered and administered.


When you are dealing with a weakened immune system do not kid yourself and believe time is not of the essence.


Later in the day, a follow up call on my cell phone advised Patti’s chest X-ray was negative.


Over the last couple evenings I’ve been able to focus on the TLC functions like Kleenex supply, Coldeze lozenges, and of course Dairy Queen sundaes before bed.


Interestingly, Massachusetts which currently is our national experiment in healthcare reform actually has a option falling somewhere in the middle of homecare and assisted care … the ‘house call’.



(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")


Caregivingly Yours, J Patrick Leer 




Wednesday, April 16, 2008

caregiving: today's forecast - politicians

Here in Pennsylvania we no longer have weather we have politicians. Tuesday was 60 degrees, sunny and Chelsea Clinton along with actor Sean Astin (“Rudy”, “Lord of the Rings”) was forecasted for a Mechanicsburg playground about 2 miles from here. 

Seemed like an ideal, ‘different’ and free idea for an outing with Patti.

Democratic Party organizers apparently use the Alfred E Newman Event Planning Guide.

Rule # 1 - Arrive an hour late
With Patti’s Multiple Sclerosis memory loss and cognitive challenges it is always ‘now’ so the wait was not a problem for her. However, temperatures fall rapidly this time of year and “duh, like it gets dark.”

Rule # 2 – “What me worry?”
With only a battery powered megaphone with a hand-grip talk switch for a public address system at least all were equally hearing challenged. Even Ms. Clinton commented that, believe it or not, she had never used a bull horn before. … I for one believe her. :)

Anyway while the message may have been lost in the medium, Patti found a way to have a grand old time. … “free speech”

In order to wiggle closer to get a picture I had to temporarily park Patti on the fringe of the crowd.  Some Clinton supporters and protestors quickly accelerated from ‘shut up’ to expletives. Why did it surprise me when I heard Patti shouting her two bits of expletives and dissolving into her self amused laugh?

Quickly returning I had no idea which side she had chosen to take nor did she, but NOW she was enjoying herself. :)

With the challenges of cognitive impairment outings can become quite different than intended, yet "all's well that ends well."

Caregivingly Yours,  Patrick Leer 

Caregiving: YOUR opinion on MS materials?

Please let me know if you could help us out by posting this link on your online journal. Thanks so much for your insight and help.

“Give your opinion on MS materials and designs.  Your opinion counts and this should take no longer than 5 minutes or less!  We’re creating materials about an upcoming multiple sclerosis clinical trial, and we welcome your input.  We’d like to know how you rate the design and look of the materials.  We don’t ask for any information about you. This survey is anonymous.  No identifying information is collected.  Please copy and paste the following link into your browser and you will be connected to the survey:

We really appreciate your feedback!”

Kathryn M. Martin

Public Affairs/Patient Advocacy Manager


King of Prussia, PA


(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Sunday, April 13, 2008

Caregiving: Walk MS 2008, Camp Hill, Pennsylvania

Click below and join us for a 2 minute, 35 second visit from today's Walk MS 2008, Camp Hill, Pennsylvania.

"Walk MS is the signature fundraising event of the National Multiple Sclerosis Society. By participating in the Walk you will be making a difference in the lives of over 5,400 people living with MS within Central Pennsylvania, as well as their family, friends and caretakers. ..."

National Multiple Sclerosis Society Central Pennsylvania Chapter

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Caregivingly Yours, J Patrick Leer 




Wednesday, April 09, 2008

Caregiving: what if ...? and caregiver ID jewelry?

What if … ? 


I know … I know … The answer is “nothing can happen” because we caregivers are both invincible and immortal.


I must admit I am intrigued by this offer of ‘caregiver identification jewelry’ from National Family Caregiver’s Association and American ID Bracelet …        


What if … an accident or medical emergency left you unconscious, disabled, or simply without your super powers? What would happen to the person dependent on you? God forbid what if your accident was fatal?


Police and emergency services may follow a logical but futile chain of communication.


I am reminded of when Megan and I were involved in a Jet Ski accident in Ocean City, MD while Patti was at home 150 miles away.


Rammed from behind by another jet ski, I was initially knocked unconscious and removed from the water strapped to a rescue board.


Megan, in 5th grade at the time, was always a mini-adult  being raised simultaneously with caregiving for Patti. Emergency personnel complimented her mature calm and cool facilitating rescue yet enough of a kid to commandeer the shotgun seat of the ambulance to insure maximum sirens and lights. <grin>


In the chaos the Maryland State Police decided Megan’s other parent and my spouse needed to be notified. Unaccustomed to advice from precocious 5th Graders, Megan ‘advised’ them it would be useless, since Patti’s Multiple Sclerosis cognition would disconnect.


Back at home, two officers knocked on the door explaining that I had been in an accident and was in the hospital awaiting examination. Megan was ‘’unattended’.  Patti told them she was tired, going back to sleep, and hoped we were having fun. <grin>


Anyway, I was fine though sore beyond imagination. Pride in my daughter’s flair for crises management was great medicine.


In retrospect, a simple bracelet may not have been a bad “Plan B” ?  … Even if we immortals refuse to buy one, they could make a stylish gift. <grin>


(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")


Caregivingly Yours, J Patrick Leer 




Tuesday, April 08, 2008

Caregiving: easier to forget or easier to remember?

Is it easier to forget or easier to remember?


What about family, a friend, or an acquaintance? Do we remember something else and forget to make time? Or forget the something else and remember to make time.


Care or not to care. Does choice define the quality of our natures?


One thing for sure … caregiving is EASIER said then done.


With Patti’s Multiple Sclerosis progression she actually has memory loss so I said to myself, “Self, why not pose this quandary to Patti?”


Patrick: “Patti, is it easier to forget or easier to remember?”


Patti: “Who the hell cares? I just want a cigarette!”


The give and take of caregiving can have a way of simplifying the philosophical. <grin>


Caregivingly Yours, J Patrick Leer 





(Blogger edition also available, Caregiver Blog: "Caregivingly Yours")

Sunday, April 06, 2008

Caregiving: language translation now available

Take 23 seconds to smile … latest video from my nephew Danny and his Marine platoon in Iraq: 

Iraqi Kid Dance: Fighting Terrorism One Video At A Time 




Now both “Caregivingly Yours” & “Musings” are available in 9 languages.  After all doesn’t “www” = World Wide Web? Currently, automatic translation is available only in the Blogger Editions below:


Caregiver Blog "Caregivingly Yours,"


musings from the lair of Cachalot


All one has to do is click the flag of choice and presto chango the blog translates itself into that language.

 (Clicking this picture will do nothing in AOL. You have to use the Blogger editions  linked above.)

Maybe I am just easily amused but it seems amazing to me!


Caregivingly Yours You Tube videos have been embedded in blogs / journals in languages around the world. Thanks to ‘Google Translate’ now Blogger text itself is available to share through the World Wide Web.


Caregiving is not unique to people writing and reading in English.


Caregivingly Yours, J Patrick Leer 




Friday, April 04, 2008

Caregiving: ripples of caring

See me. Hear me. Know me and know yourself. Caring blogs / journals connect you not only with others like you but with yourself. 


It’s humbling to me that this token of admiration has rippled through the blogosphere to include “Caregivingly Yours”


from: Mandy of MS Maze who received if from

Lisa of Brass and Ivory, who received it from…

Jim of Jim’s DEEP Thoughts who received it from…

Angela of Memoirs of a Chaotic Mommy who received it from…

Jen of Find Out What Jen Finds who received it from…

Maddy of Whitterer on Autism who received it from the originator…

Kelley at Magneto Bold Too who thankfully explains it’s meaning!!!

“When the girls and I want to express our mutual admiration in public we say ‘Less than Three’. If you look at it sideways: <3 looks like a heart.”


Above are lives and stories, some living with autism and parenting, and others living with Multiple Sclerosis.  


Without hesitation, I connect this ‘less than three’ string out to the Oklahoma prairie to Sue with “A Day In My Life …”.


Caregiving for both her husband disabled with Parkinson’s and her aging Mom, Sue may as well rewrite the boundaries of caregiver and living.  “A Day In My Life …” is a must read.


I would also like to thank author Carol Bradley Bursack, “Minding Our Elders” for highlighting one of my recent entries.


“Caregivingly Yours is a wonderful blog in general. "Caregiving: Co-dependency vs. Caregiving" is one that gives us excellent food for thought. Be sure to read both sides by clicking the headline links. Enjoy!”


Caregivingly Yours, J Patrick Leer 




Wednesday, April 02, 2008

Caregiving: Is MS fatal?

IS Multiple Sclerosis FATAL? Out of the emotional bombardment that surrounds any diagnosis, “is it fatal?” explodes with a mushroom cloud. 

20+ years ago, Patti’s neurologist answered, “Is MS fatal – NO, is MS life-threatening – YES”.

Multiple Sclerosis is rare as a cause of death on a death certificate. Falls and choking, in his opinion, were the most ‘at risk’ threats to living with MS. When accidents from falls produce fatal head or neck injuries or choking is the cause of death, then death statistics are skewed.

There can also be complications associated with severe progressed MS, including organ failure, infections, and depression.

A couple years later I was reading a story from the Detroit Free Press early in Dr. Kevorkian’s physician-assisted suicides. I was stunned to read that the majority of those turning to Dr. Kevorkian were diagnosed with Multiple Sclerosis.

That slapped me up side the head with reality. Fear of dependency and fear of a compromised future could be more powerful than I could imagine from the outside looking in.

In the two decades since diagnosis, choking has been the closest to fatal. Miraculously Patti has survived a host of MS related, life threatening incidents including, loss of consciousness during a choking episode, falling down stairs, pulling down a 36” television on her self, near accidentally overdosed on her medications, UTI’s, scooter crashes, and set our kitchen stove on fire.

I suspect all caregivers sleep with one eye opened.

In retrospect Patti’s neurologist visit was eerie. To his credit he also preached the significance of the caregiver spouse, who is often the line between fatal and life threatening.

Caregiving is about helping a person in need. Yet on the inside looking out perspective may be trapped in collapsing independence.

Medical FAQ’s can sometimes miss the point. Learning and listening retunes the noise to ‘living with’ and quality of life.

Caregivingly Yours, J Patrick Leer 

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