car talk for caregivers

Is it possible to wear caregiving on your sleeve? I am beginning to wonder if it is not some kind of aura.

Our old faithful 2000 Ford Taurus SE Wagon was declared ‘totaled’ on Christmas Eve following a snowy accident the week before. (stranded in the snow)

Ever since living with Multiple Sclerosis entered our lives vehicle needs are different than most people.

Pulling out my measuring tape tends to derail sales pitches. There must be room for a wheelchair or scooter. While yes we have our Dodge Grand Caravan IMS RampVan (wheelchair van), our second car must be able to serve as a back up.

Patti needs the option to pull herself up on the vehicle’s door frame out of her wheelchair, the strength of door and height of vehicle matter. You may be surprised how many vehicles only have a door bottom with the upper part window glass only.

Dealers often were in the ‘inquiring minds’ mode. Some either had a relative or friend caring for an aging parent or special needs child.

They more than knew the ‘statistics’ of US auto accidents after all it is part of why people need to buy cars. 

The ripple effect of those dependent on that ‘statistic’ is a sobering perspective. Every 12 minutes someone dies, every 14 seconds someone is injured in an auto accident – what happens to those at home dependent on that person?

The majority of car accidents occur less than 5 miles from your home. How many home caregivers roll the dice every day, just quickly running out for something?

To me a 20 yr caregiving veteran, that’s life. I was surprised to see non-caregivers give it thought and concern. Of course, they are sales people and who knows how genuine.

Whatever … after days on the internet and days visiting dealers it was time to park a 2008 Kia Rondo V6 LX in the driveway, kind of a station wagon on steroids.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

care facility calendar

Visits and outings are functions of time to those on the outside of a care facility. They may be perceived quite differently to those who reside in a care facility where time often moves at a different pace.

With New Year’s comes an annual focus on calendars. We use oversized wall calendars, 30” high X 20” wide (76cm high X 51cm wide) both in Patti’s room at her care facility and at home in our kitchen.

The calendar in Patti’s room serves double duty allowing visitors to sign in and staff shifts to get a better picture of Patti’s world. Additionally the wall calendar helps to supplement Patti’s Multiple Sclerosis related memory loss.

More importantly to me is that the wall calendar at home dramatically tracks 'care time'. It is too easy to allow day to day life to swallow up your time. When it is in your face every time you enter the kitchen you are less apt to forget to make time for an outing or a visit.

December was a good example. In spite of three snowstorms, holiday shopping, busier work schedule, stranded away from home for two nights following a car accident, and oodles of time associated with that I was still able to average 4 nights per week of outings with Patti and getting her ready for and into bed at her care facility myself. My usual average is 4.5 nights per week.

Believe me that kitchen wall calendar in my face makes the difference time after time. There are so many days when considering my ‘to do’ schedule that I glance at it and realize I must revise my schedule because I MUST work an outing into ‘this day’ to keep my weekly goal.

In the care facility era it is simply too easy to get distracted, you MUST keep ‘care time’ in your face not just your heart and thoughts.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

stranded in the snow

Driving home from Washington DC Friday evening (Dec 18) with only the earliest traces of snow beginning to fall, another driver lost control of his car spinning across 4 lanes of traffic ricocheting off a Jersey barricade and ending up crashing onto the front of my car.

Fortunately no one was injured, unfortunately my vehicle was disabled. Towed to the closest hotel I was swallowed by the ‘Blizzard of 2009’ as snow continued to fall for over 24 hrs totaling 22 inches (56 cm).

With daylight I went hiking in zero visibility snowfall in only walking shoes to forage for toiletries, food, and a change of socks and underwear. I discovered a Burger King basically catering to snow plow operators. When is a whopper “haute cuisine”? When it is the only hot meal in 36 hrs.

Stranded you meet people you never would have ever met or shared a warm cup of coffee with. After two nights at a Red Roof Inn I was finally ‘extracted’ Sunday afternoon by Jennifer and Tyler!

Procrastinated shopping and holiday activities are now replaced by insurance related activities and ‘waiting’.

It is oh so easy to be blinded by frustration when there really is so much to be grateful for. Even the driver who crashed into my car called me to apologize and thank me. He had been praying and thanking God for sending me to that moment in time when his car was spinning out of control; so many catastrophic outcomes could have happened.

So far, GEICO representing him could not be trying any harder to make things right. While tempted to declare their gecko as my new BFF, let's see how this plays out, first.

When I finally could spring Patti for an outing from her care facility she was in good spirits and ‘yes, no, maybe’ kind of aware of my odyssey. Multiple Sclerosis memory loss and mental confusion creates its own timeline. Though she was certainly ready to roll decked out in her wheelchair gloves and holiday painted nails.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

The Care Jacket

The weather outside is frightful but this offer is so delightful.

Join one of the latest pop-culture phenomena!

The Care Jacket™ keeps you totally warm and gives you the freedom to use your hands!

Perfect for:

• Pushing wheelchairs
• Transferring
• Promoting your favorite care products
• And much, much more

Buy one NOW and get this eclectic caregiver collectable, “The Transfer”, Free!

Watch out Snuggie! WE are 44 million strong in the US and growing.

P.S. All pictured products are figments of this author’s imagination, but “one never knows, do one”?

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

wheelchair dance

While visions of sugar-plums dance in everyone’s head this time of year, some special ones work to bring dance, dreams and caring to life.

"One dances in the wheelchair and the other dances near the wheelchair, and spectators marvel at their friendship as well as their moves...."

12 Days of Caring: Girls find the right way to move in wheelchair dance class

"... Katrina Thomas and Kirsten Stewart are 12-year-old best friends from York County who are starting a new dance season in a wheelchair dance class run by Nancy Ehrlich. The class is part of the non-profit PECAN, or Progressive Education of Children in the Arts Network...."

" ... Ehrlich is a lifelong dancer who suffered a spinal injury in 2002. Using her own wheelchair, she started the dance program that is entering its sixth season. ..."

Do not go where the path may lead, go instead where there is no path and leave a trail. -- Ralph Waldo Emerson

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

too busy caregiving for affair with Tiger Woods

Alas, I confess I have never had an affair with Tiger Woods. Though I suspect this entry may get more hits than those simply entitled caregiving, Multiple Sclerosis, or teen Autism.

Thanks to the National Alliance for Caregiving, AARP and MetLife Foundation:

CAREGIVING IN THE USA, 2009 

If the 74 pages do not interest your curiosity they SHOULD and if not now, they WILL.

“More than 3 in 10 US households report that at least one person has served as an unpaid caregiver in the last 12 months, leading to an estimate of 36.5 million households with a caregiver present.”

Even if already a caregiver it gives you an idea how you may be perceived or misperceived.

According to “Caregiving in the USA, 2009”, caregiving lasted on average 4.6 years. Just past my 20th anniversary as a caregiver, obviously I am a horse of a different color. Life long caregiver parents of special needs children who grow up to become special needs adults obviously warrant elite status.

Regardless of distinctions it IS a detailed look into what SHOULD be capturing our attention.

"...the moral test of government is how that government treats those who … are in the shadows of life; the sick, the needy and the handicapped." Hubert H. Humphrey

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

You might be a caregiver if …

You might be a caregiver if … menthol is your eau de cologne.

Thanksgiving morning began with rubbing Mineral Ice into my shoulder and upper arm muscles and applying a Ben Gay back patch to my lower back. So too would Thanksgiving end, and the next morning begin.

At Patti’s level of Multiple Sclerosis (EDSS 8+) caregiving is physical caregiving. Ironclad in menthol, perhaps even hallucinating on menthol, I was pumped up and ready for my 20th anniversary as a MS caregiver.

Besides the multiple transfers, clothing and Depend changes, and monitoring dysphagia related choking through dinner, Thanksgiving for Patti was a safe, happy, and family filled holiday.

Interestingly I discovered I could take a picture of those ol' family slides projected on a wall and with a little photo editing we have Patti and her brother both now and then.

'Black Friday' is always a travel day for me to and from New Jersey to visit maternal cousins. While I treasure them all, there is one who though so young has so much to teach about the will to live. Less than a handful of years old, he has survived premature birth, chemotherapy, and liver cancer surgery while living with Infantile Myotonic Muscular Dystrophy.

There may be no 'beaten path' for navigating the holidays, but if you look there is inspiration! ... and there is always eau de menthol.

Caregivingly Yours, Patrick Leer
videos: http://www.youtube.com/daddyleer

flu vaccines Multiple Sclerosis

"The reason why the flu is more difficult and potentially damaging to individuals with MS is three-fold.

First, if individuals with MS get the flu, they must endure the associated aches and pains in addition to their normal MS symptoms.

Second, high fever accompanies the flu, and an elevated temperature may increase MS symptoms, affecting one's overall wellbeing.

And third, the body responds to the flu with an outpouring of gamma interferon, a chemical that increases the risk of an MS exacerbation. For this reason, individuals with MS who catch the flu have a greater chance of experiencing an MS attack within several weeks following their influenza (flu) illness."
Flu Vaccines MSAA The Motivator Fall 2009 

NMSS Flu Vaccines—2009-2010 (11/19/2009) 

While Patti has already been vaccinated for both seasonal flu and H1N1, living with Multiple Sclerosis demands that family and caregivers keep in mind how damaging the flu can be. Double down your bet and get yourselves vaccinated, our daughter and I have done so.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

20th anniversary MS caregiver / Thanksgiving

“It was twenty years ago today,
Sgt. Pepper taught the band to play
They've been going in and out of style
But they're guaranteed to raise a smile.
So may I introduce to you
The act you've known for all these years …”

25 YEARS AGO
Patti had the briefest episode of slurred speech and numbness in her fingers.

“Probable MS?” Patti felt fine, never reoccurred. Damn the torpedoes full speed ahead.

20 YEARS AGO
November 1989 … National Zoo, Washington DC.

Thanksgiving morning, 1989, Patti awoke in a different world unable to walk, barely able to see and talk. Thanksgiving Day would end with her hospitalized with first Multiple Sclerosis exacerbation.

THREE YEARS LATER, 1992,
We were living with Multiple Sclerosis AS A FAMILY. scooter sleigh ride (1:16)


TEN YEARS LATER, 1999

"If you find there the meaning of what happiness is … Then a new life will begin”

FIFTEEN YEARS LATER, 2004

The care facility era dawns

SEVENTEEN YEARS LATER, 2006,

“it poured sweet and clear It was a very good year”

And, as of last Thanksgiving  ... we’re still “guaranteed to raise a smile”

Oh yeah, along the spouse caregiver path there was one hernia surgery and my back is sore more than I admit. My first episode of Cluster Headaches occurred that original year, alas my Achilles Heel.

Yet considering that I did not even have a clue as to how I would get through that first overwhelming Thanksgiving, there really are infinite reasons to give thanks!

Thanksgiving wishes to us all, every one!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

cognitive function multiple sclerosis

“It’s one of the most sensitive topics among people with MS—we’re talking about how MS affects your mind, about cognitive function …”

“Cognitive changes are thought to affect about half of those who have MS ….”

MS and the mind: The latest research on cognitive function 

Reading through the above article in National Multiple Sclerosis Society MOMENTUM magazine, winter ’09-’10, I had mixed feelings. Certainly I was glad to read of 4 pages of current and pending research yet I was baffled as to why the ‘major players’ have been so slow in coming around.

Last winter the Multiple Sclerosis Foundation invited me to write an entry for their MS FOCUS magazine entitled A CAREGIVER’S PERSPECTIVE, MS AND COGNITION
   “…We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often…”

In the NMSS Momentum article under “treating cognitive change” they mention looking at drugs used to treat Alzheimer’s disease. A study of donepezil (Aricept) is recruiting people with all types of MS.

Six years ago Patti’s nurse practitioner suggested trying Aricept. Her neurologist hemmed and hawed about lack of research but acquiesced. Not only has Aricept slowed cognitive progression to the eye of the observer but it has demonstrated through MRIs a slowing of rate of cerebral atrophy.

The frustration with cognitive function is that the person affected is the last to be aware. Family, friends, and medical contacts have to find a way to cross this line. I am not sure that patience is a virtue in fighting this symptom of Multiple Sclerosis.

“Of all the things I've lost, I miss my mind the most” Mark Twain

video: Multiple Sclerosis cognitive challenges (3:23)

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

holiday kitsch

Living with Multiple Sclerosis and spouse caregiving is not always serious. There are smiles and there is laughter.

Martha Stewart, eat your heart out! Give me kitsch and tacky any day!!!

"It's beginning to look a lot like Christmas
Ev'rywhere you go ..."

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

d-i-v-o-r-c-e multiple sclerosis

Men as spouse caregivers seem to be the media piñata of the week, specifically for spouses diagnosed with Multiple Sclerosis or Cancer.

Feelin' Sick, Ladies? Better Hog-Tie Your Man 
“I've read a lot of depressing news about the state of marriage recently, but none more dismal than a new study …”

'In sickness and in health' has different odds for women than for men 
“Many people have assumed that men are less likely than women to stick by a seriously ill spouse. That assumption might not say much for men. Yet it appears to be true. …”

Men leave: Separation and divorce far more common when the wife is the patient 
“A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient …”

Thanksgiving morning will mark my 20th Anniversary as a Multiple Sclerosis spouse caregiver. This past July was our 24th wedding anniversary. In December will begin my 59th year as a male.

I am quite sure I am not the only one.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

caregiver mortality: what if?

Statistics clutter the internet. 30% of caregivers die before those they are caring for. Spouse Caregivers are at 63% greater risk of death than non-caregivers. Family caregivers have been shown to age prematurely, as much as 10 years off a life.

More important … what about the surviving person of need?

Successful caregiving situations are as unique as the people involved. Loss of a caregiver is no statistic it is the unraveling of the fabric of living and caring. 

In our story, we learned you have to plan for the worst. Of course hope, but plan while you can. Talk about when, how, what, why and who will step in.

We began to talk about and develop a ‘best of possible’ plan for Patti. 

Homecare was never an Alamo for Patti. Patti did not want our daughter to have to sacrifice her life as her home caregiver. Past experiments with home care helpers had always ended poorly. Other family or friend options were not 24/7 dependable. 

We began to look at care facility options from independent living communities through nursing homes. 

Assisted living seemed ideal but after visiting we learned it was not an option for Patti’s level of Multiple Sclerosis progression. 

To replace my level of home caregiving necessitated a 24/7 nursing home level facility. 

We kept discovering there was so much to compare and consider. God help families that have to do this under immediate need conditions.

A family caregiver is an economic godsend. Paying to replace their services is astronomical.

Financial and Estate Planning became a MUST. 

Before cognition became an issue of competency we met with a lawyer and Patti assigned me durable general power of attorney. We additionally established secondary people so transition would be seamless should something suddenly happen to me.

Financial planning, special needs trusts, etc are not only critical but can ONLY be done in advance.

No one can predict, but anyone can plan. 

Do you know how your story would unfold, if … ?

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

cluster headaches: physicians change headaches immortal

Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of Cluster Headaches.

During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.

The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.

My first question was “What do you know about cluster headaches?” The answer was so scarily uniformed, the rest of the physical blurred.

To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.

Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.

 

I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!

Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.

Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.

In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.

Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”

Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …

Time to search for another medical guru!

Related entries:

brain writhing on a corkscrew

aka suicide headaches  

cluster headaches - my Achilles Heel 

cluster headaches continued 

cluster headaches June 2005 

cluster headaches December 2004

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

Voting, cognition, and Multiple Sclerosis

Oh, it is never boring voting with Patti. Her Multiple Sclerosis symptoms: legally blind, short term memory loss, cognitive impairment, and inability to modulate her voice volume can turn whispered assistance into … what I call ballot envy. Certainly “What the f#ck is a  prothonotary?” brought chuckles from way too many other voters.

coroner (vote for one)
Patti: “It’s a stupid idea.”
Patrick: “Stupid idea is not a choice, Democrat or Republican”
Patti: “Republican”
Patrick: “Why?”
Patti: (laughing) “They are probably better with dead people.”

Now way too many other voters are enjoying lingering and I am feeling like the straight man in a comedy routine.

Pennsylvania has no State Constitutional disqualification provision for citizens with cognitive or mental disabilities with or without assistance.

Sadly this is not true for citizens in half the United States. You can view your own State Laws Affecting the Voting Rights of People with Mental Disabilities

The National Network for Election Reform reports that beyond legal obstacles too often disabled voters encounter voting challenges, voting tests, and denial of effective assistance.

“Friends and fellow citizens: I stand before you tonight under indictment for the alleged crime of having voted.” Susan B Anthony

Poll workers often deny individuals the right to get assistance from a person of their choice and insist that an election worker(s) must assist the voter - so TRUE and our most uproarious and entertaining election memory. Voting & MS

Patti wants to vote at a polling station like everyone else, no absentee ballot alternative for her.

Pushing Patti toward the door we were surrounded by a dozen last minute campaign pitches and offered handshakes. One candidate simply opened the door for us, remarking “I thought you two might appreciate a hand.” … we thanked him with our two votes for school board.

Whether voting is a right, privilege, or responsibility or whether federal, state, or local it is what we do in spite of obstacles and enjoy!

By the way, Republican won Coroner, and door opener won School Board, so much for political science.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

disability history

History enriches people and nations. Disability also has history! Considering the obstacles, it is an extraordinary history!

It is no metaphor to say that today we are standing on the shoulders of giants.

181 years ago Rev. Gallaudet demonstrated education for all when the US House of Representatives adjourned for an “exhibition of deaf and dumb teachers and pupils”. Reading President John Quincy Adams' memoirs of that day, including questioning of students by Vice President John C. Calhoun on the “differences between power and right” is frankly captivating.

119 years ago consider assistive technology:

101 years ago the sound of a different drummer:

Disability history is told through personal letters, and articles as well as visual history such as photographs and lithographs. Two on-line friendly resources I have found are:

Disability History Museum Library

Museum of disABILITY History

70 years ago was the darkest chapter of disability history. NEVER FORGET Aktion T4: the Nazi extermination of 275,000 disabled adults and children deemed “unfit to live”. Additionally the “Law for the Prevention of Hereditarily Diseased Offspring” forced the sterilization of 360,000 people.

12 years ago the President Franklin Roosevelt Memorial was dedicated in Washington DC amid disability controversy. FDR’s reliance on a wheelchair was not publicized during his life, as there was a stigma of weakness and instability associated with any disability.

8 years ago, an additional statue funded by the National Organization on Disability was placed near the memorial entrance showing FDR seated in a wheelchair much like the one he actually used. … “It has awakened visitor's curiosity to learn more about President Franklin Roosevelt's disability and his great contributions to the country. A great majority of the visitors that come to the Memorial spend considerable time where the statue resides,” writes National Park Service Superintendent Arnold Goldstein.

"If you would understand anything, observe its beginning and its development." Aristotle

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

Safety nets, heroes, and heart

Safety nets are unraveling.

GOVERNMENT

 “the consequences are severe in many cases — for residents as well as the economy. … budget difficulties have led at least 41 states to reduce services to their residents, including their most vulnerable families and individuals. An Update on State Budget Cuts 

PRIVATE

72% of Americans say they cut back on time spent volunteering, participating in groups, and doing other civic activities in the past year while the economy was free-falling. America’s Civic Health Index 

We NEED Heroes … 

Biking 150 miles for a cause -- in a dress and heels 

We need HEART … 

“there is a silver lining, a ray of hope, a demonstration of America’s good heart … more personal forms of participation that often go unnoticed. … every bit as critical as activities such as charity walks and volunteering. 

Interestingly, people with the least means are giving the most. In the past year:

• 50% gave food or money to someone in need who is not a relative
  
• 43% gave food or money to someone in need who is a relative
  
• 17% allowed a relative to live in their home or on their property
  
• 11% allowed a non-relative to live in their home or on their property

Yes, the recession affects everyone. However those most vulnerable are affected exponentially.

What’s in your heart? 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

Speech & Voice Multiple Sclerosis

Multiple Sclerosis speech problems impact social functioning, no ifs ands or buts.

While pushing a laughing Patti in her wheelchair through our grocery store, her Multiple Sclerosis related Speech became stuck like a stylus on an old vinyl record “You’re a …” “You’re a …” “You’re a …”

Then in a volcanic explosion of decibels she shouts, “You’re a goober!” before dissolving into laughter.

Now a neurologist would charge you big bucks to tell you which Greek words apply above, dysarthrias, dysphasia, aphasia, dysphonia, or dysphagia.

I simply thanked Patti on the part of myself and everyone within hearing range.

What exactly is a goober? “How the f@ck should I know?” Patti offered.

MS Speech problems swing both ways, frustrating for the speaker, confusing for the listener.

MS Speech problems are all about short circuiting from myelin damage. Fatigue can affect and intermittent nature can make everyone nuts

People diagnosed with MS do not wear signs so ‘inquiring minds’ react from speculation to assumption as to why speech is challenged.

Listener assumptions can be as much of the problem as the speech challenges.

Slurred speech was the first speech symptom to appear in our story. Patti was ‘encouraged’ to go home from work one day decades ago in the dawn of living with Multiple Sclerosis as coworkers ‘assumed’ she was drunk.

Scanning speech / Long Pauses Do not ‘assume’ that someone has trouble understanding what you are saying or cannot find ‘the words’. This is about challenges with the physical process of speech.

Volume is particularly challenging for Patti. Appropriate levels can get interesting to say the least. (a church moment) 

MS related Emotional Lability plus Pseudobulbar Affect equals excessive emotional response plus anything might be said in any given situation. Patti for example becomes a ‘laugher’ at funerals.

Suggestions from two decades experience:

• Do not assume!
• Patience is support.
• Remember speaking can be frustrating and tiring.
• Be honest, not condescending, when you really have not understood something.
• Check ‘your’ self-conscious attitude at the door.

Urban Dictionary defines goober as a term of endearment, a kindhearted goofball.  … I’m honored!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

NEEDED: caring communities

Living with Multiple Sclerosis and MS caregiving can get overwhelming.

In my last entry (What if I’m not the legal caretaker?) one family’s story went tragically wrong.

Richie a MS caregiver blogging from the Netherlands, “A Place To Scream” commented

“sadly I can see how an individual gets overwhelmed … it is a hard life as a care giver and is more than one sad boy could manage- we need caring communities not over burdened individuals.”

Richie, you must have some powerful international mojo because yesterday I received a call from National Multiple Sclerosis Society - Central Pennsylvania Chapter about arranging a day of caring for Patti. Volunteers come to the home for a day of yard work, chores, etc.

“What a difference a day makes” program was debuted a month ago assisting Jay Megonnell in living with MS. United Way of the Capital Region-“Day Of Caring”

With Patti’s MS progression requiring residence in 24/7 assisted care this program is not for us. Yet it could be a godsend for so many living with MS and their caregivers.

If reading this through Patriot News bloglink or living in Central Pennsylvania Chapter area, call 1-800-227-2108, ask for Susan for information.

Pondering ‘caring communities’ and tinkering with Google Analytics I was stunned at the past month's readership of Caregivingly Yours.

Wow, I can still remember trying to create my first entry and wondering if anyone would even read or care.

I believe there are more caring people out there than it may seem.

'How to help' can be more of an obstacle than 'why'.

Related previous entries:

What can friends do to help someone who is a caregiver? (Pt 1)

What can friends do to help someone who is a caregiver? (Pt 2)

What can friends do to help someone who is a caregiver? (Pt 3) 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

a Zombie Zinfandel evening

Here in South Central Pennsylvania, small town Halloween parades abound this time of year. Nothing rivaling Macy’s Thanksgiving Day Parade, just small town life celebrating being alive. Fire trucks, high school marching bands, scouts, dance schools, classic cars decorated for Halloween, and costumes.

Calling ahead to Patti’s care facility, multiple aides with lifts kindly got Patti ready, changing and dressing her in outdoor clothing. Arriving with our wheelchair accessible van in addition to zipping Patti up in a winter coat, I pulled on a pair of leggings over Patti’s pants. A walking moving person generates more body heat than those who are wheelchair confined.

 

Being over 21, we added some Zombie Zinfandel to Patti’s wheelchair back pack.

At first it was like attending the parade with one of the two grumpy old men heckling muppets, as Patti intermittently shouted back expletives at cheering marchers. 

The toll of MS progression on the brain may explain some of this.Previously discussed in:

caregiving: “Hello! You little brat!”

cursing and swearing and Multiple Sclerosis, oh my

caregiving: Horton hears a *&#!

Fortunately once settled down or the Zombie Zin taking affect, Patti got into the festive spirit.

Our favorite part was costumed pets. What were their owners thinking? The piece de resistance was a Labrador costumed as a cow. You would think a faux cow doggie blanket and cow horns would be enough humiliation. Not so, below the dog hung a rubber cow udder. … Slinking along the parade perimeter with its head down in shame, the dog came over to Patti, laid its head on her lap, looked up at her with the saddest dog/cow eyes you have ever seen, and just drooled.

When we stopped laughing we agreed that was one dog that would need some serious therapy after the parade.

Fatigue is somewhat exponential with Multiple Sclerosis. And while the evening may have been short by most standards we packed it with good times, laughter, and a small town celebration of being alive and out.

Above all living with Multiple Sclerosis is about ‘living’.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...