Wednesday, October 29, 2008

Multiple Sclerosis: Once upon a time in a voting booth ...

Patti’s Multiple Sclerosis symptoms require assistance for voting. In Maryland poll workers required her to be accompanied into a voting booth by three poll workers representing Democrats, Republicans, and Independents.

Even as spouse caregiver, I could not assist her because allegedly I might try to influence her vote. “You should have gotten her a mail in ballot.” … Since I would have to read it to her and fill it out for her, how exactly does that prevent me from influencing her vote?? Whatever!

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, Dole vs Clinton … well, it all came apart.

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 (vote count tumblers in those machines were probably still spinning) and loudly exclaims, "Excuse me; I don't believe I finished voting."

Here in Pennsylvania, Election Day policy is founded in sanity. Patti can choose anyone she wants to assist her with the touch screen ballot.

Just because it is sane, does not mean it is not entertaining. Try helping someone with short term memory loss vote on long tedious referendum issues, or vote for 6 judges out of a field of 12. Hearing our laughter, voters at other screens must wonder if they have the same ballot.

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

Caregivingly Yours, Patrick Leer
musings: Patrick Ponders ...

Thursday, October 23, 2008

safe medication use

Politicians endlessly prowl across Pennsylvania once described by James Carville as "Philadelphia at one end of the state, Pittsburgh at the other end, and Alabama in the middle.”

Penn State football and Phillies baseball play on the national stage.

Fortunately for ALL of us caregivers or consumers ... in Horsham, PA
the Institute for Safe Medication Practices, the nation’s only nonprofit organization devoted entirely to medication error prevention and safe medication use, is hard at work. While not exactly grabbing the headlines they should be paid attention.

"A record number of deaths and serious injuries associated with drug therapy were reported to the U.S. Food and Drug Administration (FDA) in the first quarter of 2008."

"The total was 38% higher than the average for the previous four quarters, and the highest for any quarter."

"While prescription drugs bring great benefits to millions of patients and most are used safely, these data show the need for additional progress to better manage the risks to patients."

You can read their complete study at
Quarter Watch: 2008 Quarter 1, October 23, 2008

Caregivingly Yours, Patrick Leer




Tuesday, October 21, 2008

Multiple Sclerosis knee contractures

Patti’s MS related knee contractures have been high on my caregiving list recently. Multiple Sclerosis causes loss of movement in the legs triggering changes in the muscle, tendons and ligaments which in turn complicates bending or straightening.

After improvement following use of SoftPro Static Gel Knee Orthosis detailed in my August 11th entry, caregiving: memory loss and knee contracture ,
I’ve noticed a decline in her ability to extend her legs.

Recently chasing answers between shifts and staff, I learned the bottom line is that a certain patient has been most uncooperative. In a care facility staff cannot ‘force a patient against their will’, yada yada. So the knee orthosis have just been hanging out with the stuffed animals in Patti’s room.

Then I read a journal entry from another MS caregiver:

“I was turning Jeanne in bed, as I do every few hours throughout the day. … then I heard an unmistakable "crack." And although I had never heard this particular sound before, I instantly knew that her left leg had just been broken.”
MS Caregivers It Started With A Sickening Sound

Wow! Did this entry hammer home the risks?

Patti hates physical therapy. Trying to reason with her hits the brick wall of cognitive impairment. How to address the fight to keep Patti’s leg muscles, nerves, and joints functioning even though she is non-ambulatory?

Solution … Family and friends are not subject to institutional guidelines. We CAN argue with her to wear them and if need be amuse and distract her.

Patti’s parents visit a couple times a week and can get Patti to wear them when visiting. Jennifer had another excellent suggestion, why don’t I bring them home when Patti is visiting. While sitting around with her popcorn and ciggies would be an ideal time to wear them.

Let’s face it; wouldn’t some temporary squawking and cursing be better than the sickening sound of a crack?

Caregivingly Yours, Patrick Leer

Monday, October 20, 2008

caregiving dance on frozen grass

Top o’ the mornin’ to you, Jack Frost!

Woke up, fell out of bed,
Slapped a cap on top my head
Found my coffee maker, and drank a cup,
Looking out I noticed there was frost
Found my coat, grabbed my camera …
Ahhh! Foot steps of a morning dance on frozen grass.

Overnight temps of 28 degrees (F) unquestionably revived the spirit of this caregiver.
Caregivingly Yours, Patrick Leer

Sunday, October 19, 2008

Obsessed with caregiving?

from Mothering Mother and More ...

"How do you know if you’re obsessed with caregiving?

  • Your caregiving duties continue to increase–more baths, more attention to detail.
  • You tell yourself it’s necessary, but others seem to question you.
  • You are an expert in your loved one’s illness but are ignoring your own body’s warning signs.
  • You haven’t taken a day off in months.
  • Your other relationships are dwindling.
  • You feel as if you have nothing in common with the outside world.
  • You constantly think, “they don’t understand.”
  • You take a deep sense of pride when someone says you’re a great daughter/son/caregiver–and you actually try to create situations (subconsciously) where someone would be prompted to say this.
  • You never sit down because there’s always something to do.
  • You’re getting less than 5-6 hours sleep a night on a regular basis.
  • You fear when your loved one dies and almost feel frantic at the thought of wide open days with no one to pick up after, watch, feed, or medicate.

I know, this just sounds like normal caregiving!" Carol O'Dell

While I get the author's point, I would contend that 'obsession' is not even an option in many caregiving situations.

Dependency increases with progression for people in need of care. When it comes to caring for someone besides yourself maybe the world needs a little more 'obsession'?

Caregivingly Yours, Patrick Leer

Saturday, October 18, 2008

caregiving: my heart and prayers go out ...

EVERY caregiver knows this day will come. My heart and prayers go out to my fellow caregiver blogger and friend, Sue of A Day In My Life ...

Like a butterfly the spirit floated away on the breeze ...

Caregivingly Yours, Patrick

Multiple Sclerosis time bouncing

With Multiple Sclerosis progression follows the short circuiting of cognitive and memory related functions. As a spouse caregiver, I label it time bouncing.

Driving and chatting with Patti Friday evening she could recall nothing of her day or even her dinner only minutes before.

At my suggestion of popcorn, pumpkin ice cream, TV and of course ‘ciggies’ she added how much she was looking forward to watching “Dark Shadows”.

When her memory starts to time bounce like this I often become the mentally confused end of the conversation. She continued on about the vampire Barnabas Collins being her favorite character and some snippets of stories.

Dark Shadows was a gothic soap opera broadcast on late afternoon TV from 1966 to 1971. … Was Patti supplementing the absence of now with a memory from her 11th to 16th years of age?

Reruns may have been available in some areas in syndication on and off until 1990. I certainly have never seen her watch it. Then again I have only been part of the picture since early 80’s.

Whatever! She may as well have been in the time-travel stairwell of the show’s Collinwood Mansion.

I personally never watched, read, or was in the same room with a vampire, fictional or undead since being freaked out as a kid after watching Dracula starring Bela Lugosi. … After years of teasing by our daughter I finally addressed my phobia just a couple years ago by making myself read the original novel Dracula by Bram Stoker (yes, with a crucifix within reach, just in case).

On thing for sure when time bouncing with Patti, long term memory can walk in the NOW not unlike the undead.

Caregivingly Yours, Patrick Leer

Wednesday, October 15, 2008

Halloween Parade Mechanicsburg, PA

William Shakespeare, forgive me …

WITCH 1. Thrice the brindled cat hath mew'd.(Our cat, Stardust, is a tortoiseshell cat or ‘brindled’ cat, and most talkative.)

WITCH 2. Thrice and once, the hedge-pig whin'd.(NO hedgepigs in the New World, but Pennsylvania has plenty of groundhogs. If, as Mr. Obama claims, we are bitter why shouldn’t our groundhogs whine.)

WITCH 3. Harpier cries:—'tis time! 'tis time!(On average 20,000 raptors migrate down the Cumberland Valley each Fall. This works for me.)

In the caldron boil and bake;
Eye of CAREGIVER, and toe of frog,
Wool of bat, and tongue of AUTISM,
MULTIPLE SCLEROSIS leg, and owlet's wing,—
For a charm of powerful care,

Cognition and abilities
Sliver'd in the moon's eclipse
Scale of dragon; dark small town street;
Cloud fingers strangle the moon
Boil to 74 degrees on an October eve
(click to join US for 1 min 30 sec)
Double, double toil and trouble;
Fire burn, and caldron bubble.

In throw — laughter, family and friends,
Then the charm is firm and good.
Mechanicsburg’s Halloween Parade.
Caregivingly Yours, Patrick Leer

Monday, October 13, 2008


At $2.69 a gallon here in South Central Pennsylvania it is gas pump limbo party time!

Jack be limbo, Jack be quick
Jack go unda gas price stick

Limbo lower now
How low can you go

What do gas prices have to do with caregiving you may ask? … Everything!

Caregivingly Yours, Patrick Leer

Thursday, October 09, 2008

What the @#%& is a fluffernutter?

Picking Patti up Wednesday for an outing I asked as always what she did today? As usual MS memory loss produces some variation of I do not remember.

I noticed on the activity board that it was National Fluffernutter Day and making fluffernutters had been the afternoon activity. Asking Patti specifically about this she replied, “What the @#%& is a fluffernutter?”

Normally I would haven been equally perplexed though probably used a different choice of words. Patti’s MS cognitive progression can spawn some colorful language.

Coincidentally, Tuesday night Jennifer was not only explaining fluffernutters to Megan and I at dinner but sang the fluffernutter jingle, claiming that probably less than 100 people on earth could do it.

"Oh you need fluff, fluff, fluff to make a fluffer nutter,
Marshmallow fluff and lots of peanut butter.
First you spread, spread, spread your
bread with peanut butter,
Add marshmallow fluff and have a fluffernutter.
When you enjoy, joy, joy your fluff and peanut butter,
You're glad you have enough for another
fluffernutter. "

And we wonder why the People’s Republic of Massachusetts is a bit odd?

Patti guessed she was trying to nap and if someone had woke her up to come make peanut butter and marshmallow crème sandwiches she probably told them what they could do with their fluffernutter. You can imagine your own expletives!

Fortunately I was whisking her off to Brusters for a Hershey’s Dark Chocolate milk shake and ‘ciggies’. Now that is her kind of activity!

Bless the activity staff and volunteers at care facilities who try everything and anything to create time and interest. Sometimes the strangest things work, just like peanut butter and marshmallow creme.

Caregivingly Yours, Patrick Leer

Tuesday, October 07, 2008

Multiple Sclerosis in the workplace

NBC’s mockumentary “The Office” entertains TV audiences with the everyday lives of office employees at a fictional paper company. Patti worked for over 10 years with Stanford Paper Company before Multiple Sclerosis progression detoured her onto long term disability never to return to the work force.

Oddly while I have tried a couple times to interest Patti in “The Office”, the program has never held her attention or caused her to laugh.

Multiple Sclerosis in the workplace first affected Patti with intermittent numbness in her fingers. After a barrage of neurological tests, “probable MS” became the diagnosis of last resort back in the mid 80’s.

Patti worked as a buyer and her daily activities included constant phone calls and both typewriters and early PC’s in the dawn of the computerized business age.

I realize most ‘blog’ readers have no frame of reference for the word typewriter. Below is what one looked like.

Fingers were critical. Numb fingers not only increased mistakes and reduced productivity, but an extra or missing zero on an order was a ‘costly’ mistake.

As intermittent slurred speech entered the MS equation, co workers would assume Patti had been drinking. I remember how this innuendo hurt her more than alarm from these intermittent symptoms.

Numb fingers and slurred speech ARE intermittent symptoms of Multiple Sclerosis but not conventional “disabilities”. Even the most enlightened employers would be challenged to adapt.

Patti experienced her first hospitalized MS exacerbation on Thanksgiving Morning 1989. For another two years she would try to return to working between more hospitalized exacerbations.

For perspective the Americans with Disabilities Act was signed into law on July 26, 1990, by President George H. W. Bush remarking, “Let the shameful wall of exclusion finally come tumbling down."

A year later, Patti was “encouraged” to take a long term disability plan from Stanford Paper’s parent company Hammermill Paper, acquired by International Paper, the largest paper company in the world. In retrospect a fair offer as Patti still has health and prescription plan benefits.

Disability employment awareness is about infinitely more than a ramp. For centuries it was simply know as the Golden Rule, “do to others what you would have them do to you.”

Caregivingly Yours, J Patrick Leer

Monday, October 06, 2008

integrate people with disabilities more fully into every aspect of life

Economic disability is affecting everyone right now and for the foreseeable future. Millions of Americans with physical and mental disabilities are and will be impacted even more dramatically. Dependent or assisted can too easily become expendable.

Swamped in the high tide of press releases …

“… we reaffirm our commitment to ensuring that our Nation's promise extends to all our citizens …”

Office of the Press Secretary, October 1, 2008

National Disability Employment Awareness Month, 2008

A Proclamation by the President of the United States of America

“… Millions of Americans live with disabilities, and many other Americans will become disabled at some point in their lives. To integrate people with disabilities more fully into every aspect of life, our country is working to advance greater freedoms at work, in schools, and throughout communities. By expanding employment opportunities and fighting false perceptions that hinder people living with disabilities from joining the workforce, we can uphold America's moral values, strengthen our economy, and make America a more hopeful place. …”

Caregivingly Yours, Patrick Leer

Friday, October 03, 2008

nursing home care for individuals with Multiple Sclerosis

“Hi Patrick!
Our friend has MS and has been in a so-called care home for a year now,

  • they never get her out of bed
  • When admitted her wheelchair was taken for "health and safety" due to her cognitive deficit and fears that she would go out and get lost, or drive into things.
  • cognitive state is now unbelievable, mainly we think because she gets absolutely no stimulation
  • she effectively lies in solitary confinement all day
  • nothing to do and no-one to talk to without even the ability to read (sight loss and now complete loss of any manual dexterity).
We all live at a great distance, and can only visit once a week.
Physio has denied that the contractures are due to failure to mobilize her at all, and say it is because there are brain centers which normally prohibit contractures which get knocked out in MS (?!) Whose brain are we talking about here!”
My gut reaction is to kick down doors and bang heads. While I might feel better that would not help your friend in need.

Multiple Sclerosis care is more often than not an anomaly to most care or nursing facilities. Whether management or staff, few have any experience.

When family and friends cannot be an active part of the transition your wealth of personal background and experiences is lost to the staff.

MS cognitive impairments prevent a patient from providing dependable medical and care history. Too much becomes dependent on evaluations.

In the US, care facilities are required to offer regular patient Care Plan Reviews. In Patti’s facility this is scheduled every two months. Department heads of nursing, nutrition, physical therapy, social services, and activities sit down with patient, family and or designated medical advocate.

The best resource I have found is the Nursing Home Care of Individuals with Multiple Sclerosis: Guidelines & Recommendations for Quality Care

“... was developed by the National Multiple Sclerosis Society (NMSS) to provide guidance to clinicians and administrators of long term care facilities that are seeking to develop more effective care plans to 1) manage the unique set of clinical conditions of their residents with MS, and 2) maximize the quality of life for these residents. …”
I introduced it “for the record” at a Care Plan Review.

MS education and re-education is necessary and not just for John Q Public, even medical professionals have little experience.

Contractures and physical therapy is a horse of a different color. Frankly I was surprised when Patti’s facility began using a SoftPro Static Gel Knee Orthosis to try stretching her legs since such treatment is still being pioneered in Scottish MS studies. Someone was on the ball. For all I know the booklet caused them to actually look for MS research with physical therapy rather than try more traditional exercises in futility.

With MS progression we become the voice of the person trapped inside. If the facility cannot or will not consider the MS Professional Resource Center Guidelines you or family may have to file complaint to regulatory agency or legal action.

Caregivingly Yours, J Patrick Leer

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