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

Caregiving: Tradition! Tradition!

“You may ask, "How did this tradition get started?" I'll tell you! 

[pause]

... I don't know. But it's a tradition...”  (Tevye)

 

Holiday traditions can drive caregivers and challenged people bonkers. Undoubtedly the able bodied have similar pressures and even though I have one foot in both worlds it has been a long time since I shared the holidays from a ‘totally able bodied’ perspective.

 

Holidays pull families and friends temporarily together for hours or even a day, yet good well-intended people hosting under pressure can develop a tunnel vision of festive fascists.

 

To care, and caregiving can put you on a collision course with ‘tradition’.

 

Caregiving is an unbalanced environment driven by unpredictable care needs. The person needing attended care must be the focus if only to improve their safety and stability. The bigger picture MUST adapt. That is challenging for family gatherings unfamiliar and uncomfortable with daily caregiving needs and demands.

 

To caregivers who have had to rush, push, or shove the square peg into the round hole it sure can feel like you are outside looking in.

 

In our story with Patti non-ambulatory and Multiple Sclerosis related bladder and bowel incontinence, Depends require changing at least as often as an able bodied person would visit a rest room. Changing an adult is weight lifting time and takes a customized room.

 

Christmas Day ‘visiting’ was a 10 hour outing full of good times (and more). Patti was exhausted as was I. My caregiving day ended waiting for the dryer to finish the third load of related laundry.

 

My day was mild contrasted to so many caregivers out there. … The elderly lost in thoughts of would they see another Christmas. … Family members with dementia blocking or erasing memories and even names of the family around them. … Children with physical and or cognitive challenges trying to grasp even the concept of Christmas.

 

Thank you all for being out there in the world.

 

"Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy.”  (Francis P Church)

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, Christmas, tradition

Caregiving: holiday shopping 'around the limbo clock'

Caregiving and holiday shopping can involve a touch of madness.  Holiday shopping overloads everything including accessibility options. 

 

Available electric carts or adaptive carts are overwhelmed with holiday shopping volume. I push Patti in her wheelchair with one hand and pull a shopping cart behind me with the other. Harder than it seems, kind of a caregiver specific weight training. <grin>

 

Patti’s Multiple Sclerosis related visual impairment and cognitive challenges require me to provide a running description and commentary on items displayed on shelves. She in turn offers her opinions, often too frank and not exactly “family” rated. <grin> To ‘normal’ shoppers our rolling intrusion into their shopping reflections turn quite a few heads, especially if someone is actually holding the item Patti has just labeled, “Who the f*ck would buy that?” <GRIN> (It takes a brave person to buy something after that less than subliminal ‘commercial interruption’.)

 

Check out lines are particularly challenging. Surrounded by tall trees of standing people and shopping carts as high as her wheelchair, Patti’s world view is confused and stalled.

 

Frustration and confusion easily trigger emotional lability. Entertaining Patti can be essential.

 

Its caregiver show time … how many uses can you come up with for a 36” long roll of wrapping paper? Yes, baton is the obvious. Though in close proximity a tad dangerous, and baton is not my forte. Musical instrument worked for a while, somewhat like an elongated kazoo it began to border ‘annoying’. Then ...

All around the limbo clock

Hey, let's do the limbo rock

 

Sliding the wrapping paper roll through the arm rests on Patti’s wheelchair, I had my limbo pole. Humming the “Limbo Rock” I certainly had Patti’s attention while I explored the age old musical question "how low can you go?" ... and noticed some ‘normal’ holiday shoppers clutching their children closer and probably wondering who the caregiver was. <grin>

 

As Charles Dickens once penned into the mouth of Tiny Tim, “God bless us all, EVERYONE!”

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, holiday shopping, wheelchair, wrapping paper roll, limbo, Tiny Tim

Caregiving: holiday card 2007

Somewhere a tree is enjoying the holidays and a postal worker is walking a little lighter … our 2007 family holiday card exists ONLY in cyberspace at …

www.CaregivinglyYours.com

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, holiday card, Leer family

Caregiving: pimping out the Christmas Tree

Tuesday, I celebrated my 29th birthday for the 28th time. I needed something to get over the doldrums so I decided to “pimp out” my Christmas Tree. … If I was genuinely ‘old’ then I would use archaic words like decorate or trim.

 

The urban dictionary defines “pimped out” as having excessive embellishments or ornaments, particularly of the flashy kind, i.e. feathers in fedoras, black canes with silver handles, multicolored mis-matched shoes, and colorful crushed velvet suits. Preferably worn simultaneously. … Now THAT’S what I’m talking about. <grin>

    

Pimping out the family Christmas Tree has certainly evolved like everything over the decades of living with Multiple Sclerosis as a family.

 

In the early years when Patti could still struggle to stand I needed to create tree stability. Too often she would grab the tree for support or fall into it and you can guess what happened. Screwing the Christmas Tree stand into a 3 ft square, three fourths inch thick piece of plywood created a stable enough Christmas Tree to swing on. <grin>

Now in the wheelchair era and with visual impairment so pronounced, ornaments are concentrated at wheelchair level for viewing and touching enjoyment.

 

Of course, Patti is no longer of any help and 19 yr olds seem to feel trees should pimp themselves. Sooooo … it fell on the eternal 29th birthday boy and Stardust to take care of our 2007 Christmas Tree.

         

Yes, for those connoisseurs of cartoons, that is “Patrick”, the starfish, crowning the top of our tree. <grin>

 

P.S. I even used my trusty Ginsu knife to trim the tree from 9' to 8.5' and yes could still perfectly slice food afterwards!

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, Christmas Tree, pimp out, Patrick, Ginsu, 29th Birthday

Caregiving: on the frozen frontier (and more)

25 hours without electricity! Seems incredulous in this 21st Century. Reading news stories by candlelight of available nearby shelters through PEMA (Pennsylvania Emergency Management Agency) was ominous. However, after working tirelessly and then importing crews from New York, New England, and New Jersey to help, PPL Electric has successfully restored and kept our power on for over three hours.

 

We were fortunate in that when we had this house built we took the option for a gas fireplace. While most neighbors lost not only power and as a result heat, we were able to retain a heat source. When power finally came back on our indoor thermostat read 59 degrees. I can only imagine how cold homes were that had no fireplace or any heat source.

 

WHY? I’m sorry that is a fair question. <grin> Saturday night into Sunday morning almost an inch and a half of freezing rain fell, icing over and bringing down branches and wires. The next round was “gale force” winds and down came trees and poles.

         

As a family this was not quite our longest “stone age” experience. In September 2001 a F3 level tornado ripped up College Park, MD where we lived at the time. We were without power of any kind for over 36 hours. However we were blessed, the twister literally jumped over our house. Others were not, in its path it left 2 killed, 50 injured, 800 homes, 500 cars, and 20 businesses destroyed.

 

… On a lighter side as neighborhood legend and lore remembers I was actually on the phone ordering a Papa John’s pizza unaware the tornado was descending on College Park and electrical and phones lines were being ripped to shreds. UNBELIEVABLY within 40 minutes of my interrupted phone order a Papa John’s delivery guy pulled up in front of our house having dodged fallen trees and poles and rerouted himself all over side streets to get to us! As everyone was outside gathered and stunned at the chaos, his appearance with a hot pizza has become mythic over time. … and YES I tipped him extraordinarily well. <grin>

 

Now this time, here we had no power and limited heat for 25 hours in winter which is a lot different than September. Yet Patti in her care facility had it ALL, electricity, heat, and cable! Visiting with her last night, she was ‘enjoying’ knowing she had all the creature comforts. <grin>

 

Multiple Sclerosis and pioneering is not fun. A caregiver may rise to the challenge yet the person in need will always view living temporarily in the stone age quite differently.

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, PPL Electric, PEMA, ice storm, Mechanicsburg, College Park, Papa Johns Pizza

remembering "Buffalo Bob", Buster Crabbe, and a Grand Canyon Mule Ride

Going up into the attic to retrieve holiday decorations you never quite know what you will find if you take the time to stop and explore old boxes.

 

These first two pictures bewitched me back 36 years to college days and two days I spent accompanying two of my child hood idols. Two men I grew up watching on TV and movies who taught me to believe in magic and years later in real life were even more fascinating to meet and know.

 

And then … 31 years back to the unforgettable day long Grand Canyon Mule Ride down the Bright Angel Trail to unimaginable sights and views and back up again. And of all the roller coasters and thrill rides I have ridden, nothing can equal that day.

                     

They warn you that riders should not be afraid of heights or large animals. What an understatement! When your mule decides to lean over the edge of a cliff to graze on some tasty branch protruding from the cliff wall you are left facing down a 1000+ ft cliff on the back of an insane grazing gourmet mule.  … Oh, but it gets better …

 

Your guide will tell you “don’t let it do that! Hit it on the head!” … WHAT? I am on the back of a possibly suicidal mule who is hanging over a cliff and you want me to hit it on the head? … RIGHT! … I tried “mule whispering” to no effect. First finishing my Act of Contrition, then I smacked the beast on the head. The mule shook its head, backed up off the edge and continued on the trail.

 

Stubborn as a mule is NOT a cliché. We would repeat this process several times. <grin>

 

What does this have to do with caregiving, I guess nothing. Just some time spent to stop and enjoy an old box in the attic.

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Grand Canyon Mule Ride, Buster Crabbe, Buffalo Bob Smith, Howdy Doody

Buster Crabbe Grand Canyon Mule Ride Buffalo Bob Smith Howdy Doody

Caregiving: plastic baby Jesus, forgive me

Certainly there are more significant measuring tools for life, but tacky Christmas lawn displays oddly provide a unique window to our story.

 

Pre-Multiple Sclerosis and in the earliest years, I confess, I was one of those obsessive types who created electrical wonderlands. Even written up in the local paper with holiday homes to drive by. <grin> 

 

With MS progression and as caregiver demands increased Christmas lawn displays faded and eventually disappeared.

 

“Disposable” time for hobbies or fun is a luxury in caregiving.

 

Last night I was tooling away creating and said to myself, “Self why not go pick up Patti and include her?” … I never got another moment to spend on decorating. <grin>

                                  

Patti wanted nothing to do with sitting outside in the snow holding strings of lights. I can’t leave her unattended in the house, so inside we came. … and the worse case scenario began to play out a bowel accident.

 

Weight lifters in gyms may think nothing of dead lifting their body weight but let me tell you, dead lifting a human is not like a barbell. I weigh 172, Patti weighs 150. I have to lift her out of her chair and onto a bed to change her.

 

Undressing, changing, and dressing an infant is similar only in concept to caring for an adult. The physical demands are exponential.

 

When finished I must again dead lift her back into her wheel chair and begin clean up and a couple loads of laundry.

 

What was I doing?? … Oh yeah! For some insane reason decorating the lawn. And if Patti wasn’t enough I had to go to war with plastic baby Jesus to change his light bulb.

 

As I was threatening plastic baby Jesus after he bit me and my finger is bleeding, Megan laughs, “Dad I think you are loosing the Christmas spirit.”

 

Then Patti looks at the finished lawn display and remarks, “It’s cute but I really only want a cigarette.”  (????)

 

Why do I try? … perhaps I find sanity in snow falling on tacky lawn displays. <grin>

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, Christmas lawn displays

Caregiving: THE SEESAW parenting and caregiving

Does time spent together count as a gift? Certainly the retail industry would scream blasphemyyyy with all the gusto of Howard Dean.

 

Caregiving and living with Multiple Sclerosis as a family was and is a seesaw in our story between caregiving and parenting.

 

Until our daughter, Megan, turned 16 we had never spent any kind of vacation that was not controlled by MS. Exacerbations or flare-ups aborted planned trip after trip in the 11th hour before departure. If we managed to get under way the same pitfalls shortened or modified those trips. Bladder and bowel accidents were beyond disruptive. Victories did happen, here and there, and they were treasured.

 

Attempts at time together while family or friends acting as Patti’s caregiver had some success but were haunted by injuries to those caring for Patti, or to Patti herself. Caregiving became increasingly physical and 24/7 demanding.

 

The advent of the care facility era was the first time that Megan and I could genuinely do something together and know that Patti was safe. That year Megan turned 16.

 

Yes, I felt a need to catch up. … The following video ‘remembers’ one side of that seesaw year between the dawn of the care facility era and the phoenix dawn of father and daughter.

16th Birthday Road Trip   (3 minutes)

A year later the care facility era continued to enable us to take spontaneous day trips to see, touch, and feel opportunity and dreams.

"The Gates" of Central Park  (1 minute)

Like any seesaw, balancing caregiving and parenting can sometimes leave you crashing down on your butt when the other person slips off. <grin> Yet, to stop trying is not an option. 

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, parenting, 16th birthday, Megan Leer, The Gates, Queen, WWRY, Las Vegas, Integratron, Lake Havasu, 29 Palms, Los Angeles, San Diego,Tijuana, Stone Harbor, NYC

National Family Caregiver Month "tools of the trade" - shower

Last but not least of the ‘tools of the trade’ of home caregiving is the shower. Not only am I trying to squeeze this in during the waning hours of National Family Caregiver Month but the shower can be the most dangerous of places in the home for both the able and disabled. 

 

Not being Kennedy’s we have never been able to afford the more incredible shower chairs that are out there on the market. At Patti’s care facility they have such state of the art stuff that a home caregiver can just stand and dream like a kid in a candy shop.

 

Additionally Patti has never been able to use transfer type seats that some people can use between a wheelchair and a tub. She is unable to move sideways.

 

Believe it or not the safest and most effective (and certainly most affordable) for Patti has been a plastic patio chair. Of course here again it takes muscle to transfer her from wheelchair to lawn chair and back again, but fortunately and God willing I can still do it.

 

A reader forwarded along a suggestion the SHOWERBUDDY. I personally have no experience with it but it sure seems to cover all the bases and is quite similar to the high tech machines available to Patti at her care facility.

 

I did have to smile at the picture of the “first ‘showerbuddy’” especially compared to Patti’s current shower chair pictured in our accessible shower. Didn’t someone once claim that necessity is the mother of invention.

         

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, shower chair, ShowerBuddy, National Family Caregivers Month, care facility

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