Caregiving: "the call"

There are phone calls I can never forget.  

“(One) score and seven years ago …” a phone call changed my dreams and life.

That is another story. This entry is about “the call” from (one) score and three years ago that kicked open the door of caregiving.

Sitting at my desk at work I received a call from a neurology office. For months and months Patti had been going for tests of one kind or another to try and determine an intermittent and remitting tingling/numbness she would get in her fingers.

The caller explained Patti was crying uncontrollably and could I come get her. No more insight except their address and directions.

Patti does not cry. This is a woman who had a root canal done without Novocain because she did not like the after affects of Novocain. In all these years I can only remember her crying one other time.

Upon arriving I found Patti still crying alone in an examination room. Her neurologist appeared and explained he had told her that “she probably has Multiple Sclerosis” … “I gave her some brochures to read” … “I returned to see if she had any questions and found her crying uncontrollably” … “She appears to be emotionally upset.” … “I do not think she should drive.”

Neurologists have not gotten any better over the years. I imagine that serial killers have better interpersonal skills.

Those brochures from decades ago were laced with words like incurable, progressive, handicapped, wheelchair, shortened life expectancy. Can you think of more wonderful reading material while reeling from the shock of hearing the diagnosis “probable Multiple Sclerosis”?

I can never grasp the depth of Patti’s shock and terror. My memory is a conflicting storm of anger and compassion.

More like plastic pets, telephones now even tag along with us.

Yet any call could find you reaching to answer or reaching into life’s grab bag.

“Mr. Watson, come here, I want to see you.”

Alexander Bell, March 10, 1876

(first successful telephone transmission of speech)

Caregivingly Yours,

J Patrick Leer

Tags: caregiving, caregiver, Multiple Sclerosis, neurologist, telephone

Caregiving: dotting the i's, crossing the t's

Getting it right, dotting the i’s and crossing the t’s, on caregiving related paperwork makes more difference than it should. Transcribing this unique life to forms is frankly impossible yet must be done. 

 

Each caregiver manages and evolves however I do sometimes wonder what if someone had to step in for any reason.

 

You can compile a library of three ring binders full of records yet how do you really share the trial and error learned experiences, those fragments of memory that click in to place like the snap of a finger.

 

Immersed in the methodical tediousness of TaxCut and yearly Medicaid revue paperwork, I find myself day dreaming in the random colors of worry. Odd destination for a mental vacation.

 

Caregivingly Yours,

J Patrick Leer

 

www.CaregivinglyYours.com

musings from the lair of Cachalot

Tags: caregiving, caregiver, TaxCut, Medicaid

Caregiving: Multiple Blog Disorder (MBD)

Eighteen years of caregiving and almost four years of journaling about caregivng has triggered Multiple Blog Disorder (MBD).

 

Over the last year, National Multiple Sclerosis Society staff has encouraged me to repost my AOL Journal on MySpace, MY caregiving SPACE. It can also be found on Blogger, Caregiving Blog "Caregivingly Yours,". Apparently whatever litmus tests they use demonstrate a wider reader demographic. My own 19 year old daughter likes to remind me that AOL Journals are for old people. <grin>

 

Caregiving is not exclusive to any age. CaregivinglyYours.com was created to simplify the sharing and the search.

 

However, believe it or not, I do ponder and do things that are not directly related to caregiving. Stocks split, cells split and eventually I surrendered to Multiple Blog Disorder (MBD). A fragment of ME can now be found in …

     musings from the lair of Cachalot

 

You are welcome to visit anywhere anytime.

 

Caregivingly Yours,

J Patrick Leer

Tags: caregiving, caregiver, National Multiple Sclerosis Society, My Space, Blogger, AOL Journals, CaregivinglyYours.com, Multiple Blog Disorder

Caregiving: 'the walker'

'The walker' struggled down the hall, wall-walking as I remember Patti doing so many years ago. 

 

In those early days of Multiple Sclerosis Patti would have to grab anything and everything, most of which were never meant for support.

 

This walker rumbling with fate at least had the benefit of a railing built to assist walking.

 

(“Don’t stare, it’s not polite!” What caregiver and/or person in need has not heard that admonishment whispered in a crowd. I believe there is more courage to see in every forward step of 'the walker' than in a field full of athletes.)

 

At the end of the hall was an emergency exit door. Visually impaired 'the walker' did not notice the change from the bar along the wall to the panic bar to open the door.  

 

As 'the walker' put weight on the door’s panic bar the world exploded. In rushed a frigid January night while emergency exit alarms and lights wailed and strobed.

 

Staff impressively materialized out of thin air and calm was restored while Patti offered supervisory and non-G rated opinions about the racket.

 

Sometimes just a few moments of watching life, can almost feel allegorical.

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

musings from the lair of Cachalot

Tags: caregiving, caregiver, Multiple Sclerosis, wall-walking

visiting Pennsylvania Farm Show 2008

       
Yes, that is a live Brahma Bull pictured with Patti and me at this year’s Pennsylvania Farm Show.

Besides the three of us, 400,000 people and 8,000 animals visited in 24 indoor acres of the Farm Show Arena.

The first year we ever attended we struggled with accessible entry through the Farm Show main entrance, competing with strollers, wagons, wheelchairs, and scooters for too few elevators.

Until, DUH! It occurred to us that obviously the animals and farm equipment must have a totally accessible way in and out. Ever since we simply use the back side of the buildings and have never had a delay or even encountered a single step. Sometimes it pays to ignore the wheelchair signs and just follow the big wheels. <grin>

          

As enjoyable as the whole show is for visitors it is exhausting for the farm families that share their time, produce, animals, and lifestyle. I couldn’t resist taking this picture of a young girl catching a nap with two of her family’s dairy cows.

She kind of captures it all, the heart and soul of Pennsylvania’s largest industry.

On the caregiving side of the equation, Patti's Multiple Sclerosis symptoms of visual impairment and cognitive challenges are minimized by the hands on interaction and patient education of the farming community. 

Animals react to assistive technology different than people. Rather than try NOT to notice Patti's wheelchair, farm animals find it curious and Patti gets their attention. Patti loves visiting the goats who endlessly try to eat her chair and even butt heads over eating rights to her chair.

MS symptoms also include incontinence and as Patti is non-ambulatory all the restrooms in the world do not help. Society is a long way off from adult changing stations. Fortunately Patti's parents live near the Farm Show Arena and have modified most of their home so I could drop by and physically transfer Patti in and out of a bed to change clothing and Depends and throw laundry in the washer.

"In the struggle for survival, the fittest win out at the expense of their rivals because they succeed in adapting themselves best to their environment."  Charles Darwin

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: Pennsylvania Farm Show, caregiving, caregiver, Multiple Sclerosis, PA Farm Show, disability, accessibility, wheelchair

Caregiving: a Spring day in January

Cognitive dysfunction? Mental confusion? A neurologist might explain it refers to loss of orientation, the ability to place oneself correctly in the world by time or location. 

 

So what is a sunny, 67 degree day in South Central Pennsylvania on January 8th? (37 degrees is our normal average January high temp) What do you call it when Mother Nature is confused?

 

It WAS a perfect day to get Patti outside and enjoy some scootering. When personal and natural confusion are in harmony, leave the explanations to the talking heads and simply ENJOY a Spring Day in January.

Tags: caregiving, caregiver, Multiple Sclerosis, cognitive dysfunction, mental confusion, scooter

traveling, guests, & caregiving hostels?

Traveling as a caregiver is always something more than an adventure and hopefully less than a nightmare. There is no blueprint answer. Variables explode like fireworks when you consider how each caregiver is unique multiplied by how each person with needs is distinctive plus the inconsistency of each allegedly accessible facility.

Over the holiday we shared a successful experiment with caregivers helping each other out. Our guests, for 3 nights / 4 days spanning the New Year, were a Mom and her autistic teenage son.

For non-caregivers it may be complicated to grasp the difference between conventional lodgings and another caregiving home. There is so little that has to be explained between caregivers. Support is almost seamless. Caregiver to caregiver chat at the end of the day is priceless.

In some utopia such a network might exist. However until then it is about friends.

As the ramp extended from our van and we all exited our outings might appear like alien landings. Yet, visiting superstores such as Wal-Mart and Wegmans Food Market (especially in late December) can be almost as fun as Hershey Park when two of four people have physical and cognitive challenges.

Interestingly the larger group was a bit easier than one on one from my perspective. Maybe strength in numbers? Maybe diversity of Multiple Sclerosis and Autism kept it beyond unpredictable? Maybe just having another pair of caregiver eyes and hands to share made the difference?

31 percent of America's adults are taking care of an elderly, disabled or chronically ill relative or friend. Look around yourself the next time you are out in a store. Do your eyes see a third of the people involved in caregiving? Keeping everyone out and involved in the community can be overwhelming.

Talking with Patti about our guests contrasted to our holiday trip last year to Philadelphia and trying to ‘adapt’ the Hyatt hotel, she reflected, “Maybe you should create something like this.” … Ahhh! Now there is a New Year’s resolution for the 25th hour of each day. Become the Conrad Hilton of caregiving hostels <grin>.

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, caregiver, Multiple Sclerosis, Autism, Wal-Mart, Wegmans, disability traveling