Sunday, December 28, 2008

caregiving: incontinence trumps

Incontinence may be intellectualized by doctors but from a caregiver’s perspective incontinence trumps.

With progression of Patti’s Multiple Sclerosis she is totally incontinent both for bladder and bowels. Add into the mix a wheel chair, a non-ambulatory patient with cognitive impairment and you have more than a challenge.

I think it is safe to assume that most people have changed a diaper on an infant. An adult’s diaper is the same concept just on a grander scale.

Incontinence also means whenever. Anything and everything else planned has to accommodate the need to change Depends and usually clothing.

Yes, all manufacturers promote their product does not leak. If your faith is based in US advertising, then bless you. However, I will say after a decade of caregiving for incontinence that Kimberly Clark DEPEND® brand leaks less.

Picking Patti up on Saturday for her parent’s holiday party my nose told me something was not right. Patti claimed that she had just been changed and just wanted a cigarette. I wasn’t buying.

Preparing to change her myself I found myself shortly assisted by 5 aides and a lift. I think operating rooms have less people.

Later driving back she experienced more bowel incontinence. Changing alone was not going to be adequate, a shower was needed.

Timing was bad as aides were all busy getting other residents to bed so I charged forward.

First, dead lifting Patti from wheelchair into bed so I could get her clothing and Depend off, then dead lifting her into a shower chair to roll into the shower.

Soiled clothing and bed linen I quickly tossed in hamper Depends and wipes in trash.

Observing me, the LPN put meds on hold and pitched in finding me extra wash cloths and towels, rounding up fresh linens, and making the bed.

After shower I dead lifted Patti back into bed, whipped on new Depend, nightgown, and rolled her regular wheelchair into the shower as it too needed a cleaning.

All's well that ends well, as Patti was falling into sleep as I turned out the light and sloshed out in soaking wet shoes.

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

Thursday, December 25, 2008

A Christmas letter of One Solitary Life

Christmas can be particularly poignant for caregivers and those they care for. Holidays are benchmarks of the past, present, and future.

Reflecting how life does not always fit into a bombastic Christmas Letter, I remembered sitting in Radio City Music Hall with our daughter a few years ago.

Mesmerized with their Christmas Spectacular I felt like a kid.

Yet the scene I remember the most was their living nativity and experiencing for the first time “One Solitary Life”, a 1926 sermon by Rev. James Allan Francis.

In a sense the first modern Christmas Letter …

"He was born in an obscure village,

A child of a peasant woman.

He grew up in another obscure village
Where he worked

In a carpenter shop until he was thirty.

Then for three years
He was an itinerant preacher.

He never had a family.
Or owned a home.

He never set foot inside a big city.
He never traveled two hundred miles
From the place where he was born.

He never wrote a book or held an office
He did none of the things
That usually accompany greatness.

While he was still a young man, the tide
Of popular opinion turned against thim.

His friends deserted him.
He was turned over to his enemies.

He went through the mockery of a trial.
He was nailed to a cross
Between two thieves.

While he was dying
His executioners gambled for the only
Piece of property he had, his coat.

When he was dead, he was taken down
And laid in a borrowed grave.

Nineteen centuries have come and gone
And today he is still the central figure
For much of the human race.

All the armies that ever marched,
All the navies that ever sailed
And all the parliaments that ever sat
And all the kings that ever reigned
Put together have not affected

The life of man upon this earth

As powerfully as this
One Solitary Life."

While there certainly is nothing wrong with pride in winning a soccer tournament, getting all A's, or even just being able to get out of bed in the morning; try to see the love and care at the core of Christmas.

Wishing you all a safe, family filled, and Merry Christmas!

Caregivingly Yours, Patrick Leer
web site:
Patrick Ponders ...

Tuesday, December 23, 2008

caregiving: "Hello! You little brat!"

In a recent study of MS patients, … 62% reported speech and voice impairments. Cognitive problems can be a barrier to communication. … 48% displayed cognitive dysfunction

While pushing Patti through the aisles Christmas shopping, a young girl wearing reindeer antlers and jingle bells was leaping about wishing Hello and Merry Christmas to all ...

… until she was stopped in her tracks by Patti’s, “Hello! You little brat.” Patti was NOT in a bad mood, her MS was preventing her from communicating appropriately.

These are the caregiver moments when I wish I had a big sign “MS Zone” or something. Then again what would that even mean to most people.

Dysarthia, in which the capability to understand, remember words and construct sentences is not lost but the ability to speak clearly becomes affected. Slurred speech, together with impaired mobility, can sometimes lead to accusations of drunkenness or decreased intelligence.

Dysphasia, in which there is a lack of understanding of what is being said and an inability to recall the vocabulary and grammar necessary to build a sentence, hesitant disjointed speech affects confidence and demands patience on the other end.

Disinhibition is one of the rarest behavioural symptoms of MS and linked to MS-related damage in the brain. People experiencing disinhibition may have little or no awareness of others' feelings regarding their actions. Making a hurtful or inappropriate comment is frankly the milder end of a loss of their sense of social rules.

Attempting to defuse the moment by introducing ourselves to the formerly happy child , I hoped that putting names to faces might help Patti.

“Patti, say hi to Laura”

“Hi Laura! You little brat!”

Realizing this was going nowhere, it was easier to offer the child a conspiratorial wink and a whispered aside, “Don’t let her bother you, she’s really the Grinch in disguise.” … Recovering with a giggle she bounced off happily.

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

Sunday, December 21, 2008

Saturday, December 20, 2008

caregiving: multiple sclerosis and cognition

Special thanks to the Multiple Sclerosis Foundation for enabling our story to bridge from the blogosphere to print media.

"A Caregiver’s Perspective: MS and Cognition" will appear in their Winter 2009 edition of MSFocus Magazine. Below is an excerpt:

"Our then elementary-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network. Homecare agencies cancelled our aides due
to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.

Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid- 90s, cognitive problems associated with MS were simply not mentioned very often..."

After years of journaling it was fascinating to work with a different medium including submitting copy, editors, revision, and such.

This journal / blog began, in part, four years ago because the challenges of people with progressive and severe MS, their caregivers, and families were invisible to mainstream MS publications.

Thank you, Multiple Sclerosis Foundation for this opportunity.

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

Thursday, December 18, 2008

caregiving: nursing home compare

Today the Centers for Medicare and Medicaid Services (CMS) unveiled their new 5-star rating system for nursing homes and care facilities.


Exhaustive information has always been available through CMS however, this works much like the more consumer familiar restaurant or lodging 5-star systems.

After checking it out this morning, I must offer applause for user friendliness and simplicity.

However, I also must also caution that searching and deciding on 24/7 care is NEVER simple. Certainly use this new tool as a start.

Then visit, visit, and visit again. Your impressions and what you actually see and feel is far more important than data. Care is always about people.

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

Wednesday, December 17, 2008

caregiving: one third of my life ...

One-third of my life has been spent as a spouse caregiver. I discovered this trivia while playing with a calculator on this last day of my 57th year.

Do I have any pearls of wisdom to offer? Yes, never stop building snowmen!

With 3 inches of snow for an early birthday present it was time to realign the feng shui of kitsch.

Caregivingly Yours, Patrick Leer
Patrick Ponders ...

Tuesday, December 09, 2008

caring bells jingle (or maybe, toll)

While we put lights on our tree last night, Jingle All the Way played on ABC’s 25 Days of Christmas.

As any caregiver knows, “we” means I climbed up and down and all around illuminating our 9’ Frazier Fur. The rest of the cast of ‘helpers’ chomped cookies offering encouragement and compliments.

It was impossible not to reflect on a comedic scene from the movie released Thanksgiving weekend 1996 involving Arnold Schwarzenegger and Sinbad battling their way through a Christmas shopping stampede. Filmed with Hollywood craftsmanship, special effects, and stunt people you get comedy.

Twelve Thanksgiving weekends later, in reality, you get tragedy. I read that a cell phone video posted on You Tube shows a police officer crouching by a man lying at the entrance of the Valley Stream, NY Wal-Mart. Shoppers peer from behind glass doors or stand a few feet away, audio-enhanced chatter captures "They need to shock him," a voice says … another cracks a joke … women laugh.

The coroner ruled Jdimytai Damour, 34 died of suffocation. He could not breathe trampled under the stampede of Christmas bargin shoppers on frugal Friday, black Friday, or whatever.

Valley Stream, NY may not be all that unfamiliar. Snapple Beverage Co., and the drink itself, started there.

Portions of the film “Goodfellas” were filmed in Valley Stream.

Reggae singer, Shaggy, lived and recorded there.

Steve Buscemi - Actor/Director, grew up in Valley Stream

Estimated median house or condo value in 2007: $428,480

Estimated median household income in 2007: $78,829

Sounds more like the fictional Bedford Falls than the kind of town where a life is less valuable than saving a few bucks.

Or is it that we, regardless of where we live have forgotten to care or even what we care about?

What does this entry have to do with caregiving? Everything! One day, EVERYONE will know or love someone who cannot care for themselves. God help us!

Caregivingly Yours, Patrick Leer

Wednesday, December 03, 2008

opening December email ...

Opening December email has been like opening an Advent calendar ...

and finding a wonderful award behind each day.

THANK YOU Julie of Julia's New Journal and Amanda of This is me Hugs for your kind remarks and awards.

OUR story as told in Caregivingly Yours is really a story that writes itself. If I could pass along awards it would be to everyone who takes the time to visit here and share our story. Thank You!

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

Monday, December 01, 2008

health care: ignorance and fear are deadly

The American College of Physicians, is urging its members to offer testing to all patients older than age 13 for HIV, the virus that causes AIDS, as a way to identify people who unknowingly carry the disease and might pass it to others.

“ACP recommends that physicians adopt a routine screening policy for HIV and encourage their patients to get tested, regardless of their risk factors ...”

The college joined at least three other doctors’ groups -- the American Academy of Family Physicians, the American College of Emergency Physicians and the American College of Obstetricians and Gynecologists -- that have endorsed wider testing.

Ignorance and fear are deadly ALL the time, not just on December 1st, World AIDS Day.

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

Tuesday, November 25, 2008

caregiving: Thanksgiving is not a Norman Rockwell painting

In 1621 the Wampanoag signed an alliance which gave the English permission to use about 12,000 acres of land for Plymouth Plantation.

54 years later the Wampanoags were nearly exterminated in war with the colonists. Surviving male captives were sold to slave traders. Their families, women and children, were used as slaves in the New England colonies.

Thanksgiving eve 1989 Patti (totally able bodied) and I spent the night playing with our then 18 month daughter, taking turns with the butterball turkey on the tot slide.

In the morning Patti awoke unable to walk, see, and barely able to talk from Multiple Sclerosis, spending the remainder of the holiday weekend hospitalized.

On Thanksgiving 2001, I stood on the streets of a resurgent New York City.

Too full of parental pride as my daughter marched by in the Macy's Parade to even notice how cold it was.

On Thanksgiving 2007, I looked across the table into the smiling eyes of my youngest cousin. Premature birth, infantile myotonic muscular dystrophy, liver cancer, and months of chemotherapy and successful surgery had challenged his less than two years of life to sit at that table.

Thanksgiving memories are not Norman Rockwell paintings but rather benchmarks of the life we are given and what we choose to make of it.

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

Friday, November 21, 2008

National Family Caregiver's Month ... sleepless in Alaska

Caregivers do not come packaged on shelves, nor are care environments cookie cutter patterns.

While I am thrilled this morning with the first snow here in Pennsylvania, another caregiver up in Alaska wakes to a different view.

from Sandra of
Family C.A.R.E.

"I am so tired and overstressed right now I can barely even express it. I'm tired, but I can't keep the house warm for my dad and sleep at the same time because right now our primary heat source is a fireplace. I can't go to sleep and leave an open flame going in the fireplace, and if I let the fire burn out then the house will get down to near freezing levels by morning. This all causes a significant lack of sleep, and that lack of sleep is producing stress and disorientation like you would not believe."

Caregivingly Yours, Patrick Leer
Patrick Ponders ...

let it snow ...

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

Monday, November 17, 2008

careGIVING: The Smell of Christmas

'Tis the season when the 'giving' part of caregiving begins to occupy the thoughts of family and friends.

Endoresement by demand prompts this entry. Recently the staff at Patti’s care facility has been bugging me to find some of “that potpourri” that we use in Patti’s room.

Previously in an entry entitled “gift shop suggestions” I mentioned that we stockpile a Christmas potpourri to use throughout the year. Let’s face it; a care facility has unique challenges. If Patti’s room is a year round oasis for all then this potpourri is a winning product.

Each year when we go to buy our Christmas tree at a local nursery we find it in their Christmas shop.

So after some recent Internet research …. Eureka!
You can order
Aromatique “The Smell Of Christmas” on line or click on their retail locator to find a shop near you.

I even learned that you can buy refresher oil to keep “The Smell of Christmas” potpourri maximized year round. Unaware we have just been replacing, this will save some money … thanks!

Besides the fact that the product absolutely transforms even the most challenged environment I was impressed to learn that Aromatique, Inc is a home grown American success story. Patti Upton created “The Smell of Christmas” at home mixing together some local botanicals and fragranced them with oils and spices. Her larger than life story began with placing some in a friend’s gift shop in Arkansas in 1982 and today leads the decorative fragrance industry.

MORE impressive to me is the “smell of success”. Patti Upton’s commitment to sharing her success has contributed millions to the University of Arkansas for Medical Science and the Nature Conservancy among others.

This is Patrick Leer and I endorse this entry.

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

Sunday, November 16, 2008

juggling through time

Juggling spouse caregiving and parenting was about making sure I made the time.

Recently reading an article about children’s television, a new report singled out only eight programs that have "exemplary" educational content.

Memory smiled as I found ‘Beakman’s World’ still listed and this picture from 12 years ago …

Do not get me wrong, I can also still name the colors of the Power Rangers, rattle off a couple dozen Pokeman, and know who Littlefoot, Cera, and Duckie are. NONE of which are on the list of ‘exemplary’ educational content …

... yet often shared time together trumps on the parallel tracks of parenting and spouse caregiving.

Caregivingly Yours, Patrick Leer

caregiving: a good time to talk about back ups

For our games and amusements we count on the 'back up'. In sports, a back up player can make or break a season. In theatre, an understudy may save a performance. … Yet who backs up a family caregiver?

Family Caregiver Month is a good time to talk about back ups, whether for the short term or the long term.

It does not have to be a catastrophic injury to take out a family caregiver. The flu, wrenched back, or dental surgery can negate their effectiveness. Who steps up?

Do excuses greet requests for help? “Oh! I wish you had given me some notice! I already have made plans.” … (How insensitive of me not to schedule my injuries.)

On the other side of the coin, family caregivers tend to store everything in their head? People cannot step in when they are unsure. A brief concise notebook of medications, medical information, names and phone numbers should be easy to find.

When family caregiving includes in its foundation the twin delusions of invincible and immortal more than one person will always be at risk.

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

Thursday, November 13, 2008

National Family Caregiver's Month ... a roar of frustration

An essential truth of National Family Caregiver’s Month is that a twist of fate is all that separates a non-caregiver from a caregiver.

Sometimes a comment to Caregivingly Yours roars with such frustration and passion that it demands its own entry.

fantaz009 has left a new comment on your post "caregiving: wwwmedicaregov/caregivers/"

excerpts …

“… a few years ago my wife (45) suffered a car accident … Surgery was necessary… and then another surgery … which left her totally disabled … extensive physical
therapy and years of retraining to walk and recovery are in store …”

…my wife a Dental Assistant for 12 years has been handed down without retirement and I owning my own business at the time … was forced to sell and take plenty less than it's net worth, to not only provide for
raising my two teen aged daughters yet total around the clock attention to my wife.

… Each of us have made major sacrifices in our lives … fnding ourselves and our daughters at one time totally broke and homeless, losing our house for lack of payment, kicked to the streets like dogs …

… The disability check my wife now receives, is less than $700 a month. We have verily lived on only that now for 5 years.

… any compensation, for my time in caregiving for my wife? … never offered anymore than food assistance.

We can't even afford a car. So are dependent on our daughter for transportation …

… in my trade. I've tried to re- enter but at my age, I'm stopped at the door with looks …

I provide all the care but we get no giving. I feel that even now I'm wasting my time writing this, because I have very little faith in a bureaucracy that never gives answers, only questions my validity while suppressing the problem..."

All reposting to my comment, can be sent to my email address thank you for your time, comments, and concerns. Stacy Bowen

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

Sunday, November 09, 2008

Riding the StairLIFT Inclinator / Multiple Sclerosis

‘Wall walking’ was certainly a phase in Patti’s Multiple Sclerosis but ‘wall climbing’ was a new one for us, as Patti glided up and down the wall on a StairLIFT SC Inclinator. (30 second video)

In order to attend a wedding reception at the Civic Club of Harrisburg, Patti had to debut on this unusual, to us, accessible technology.

While Stair Lifts may be functional they are not designed for non-ambulatory persons …

  • Four (4) dead lift transfers were involved on my part as spouse caregiver to and from Inclinator to her wheelchair, complicated by StairLIFT and wheelchair of different heights. (Typing this entry my back is reminding me of the adventure.)

  • A team of three to four people were needed for successful use. Transferring, operating key controls at top of stairs, physically carrying wheelchair up another set of stairs, and someone to walk along with her to minimize any cognitive complications while in motion.

However, catering staff could not have been more helpful and sensitive … and the bottom line is that it worked.

Attending Patti’s closest friend’s daughter’s reception was what the evening was about …

… and coincidently it was also Patti’s parents’ 56th wedding anniversary.

Interestingly, the Inclinator Co. of America, manufacturers of the StairLIFT has been based in Harrisburg, PA since 1923 when C.C. Crispen, after visiting a sick friend confined to the second floor during recuperation, created a seat that could climb stairs.

While Patti might ride the StairLIFT Inclinator on You Tube, according to the Inclinator Company of America Charles Laughton beat her to the big screen riding a StairLIFT Inclinator in “Witness For The Prosecution” (1957).

Courtesy of the library of the Disability History Museum click on this thumbnail to view a 1933 advertisement for this Pennsylvania invention and accessibility challenges 75 years ago.

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

Wednesday, November 05, 2008

living with Multiple Sclerosis to the White House

Living with Multiple Sclerosis as a family Frasier Robinson’s children never knew him without his disabilities from Multiple Sclerosis or his ‘struggles’ with progression even to get to work much less work everyday and hold a family together. Frasier Robinson died in 1990.

“I am constantly trying to make sure that I am making him proud -- what would my father think of the choices that I've made, how I've lived my life, what careers I chose, what man I married." Michelle (Robinson) Obama

Caregivingly Yours, Patrick Leer
Patrick Ponders ...

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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