caregiving: memory loss IS NOT a normal part of aging???

“Memory loss is not a normal part of aging?” Seeing that title in my email this morning triggered high anxiety while I tried to ‘remember’ where I just put my reading glasses when making coffee. 

 

Reunited with my ‘wandering’ reading glasses, I read on.

 

Memory loss hurts family more than thought

(United Press International)

 

“Mild cognitive impairment (MCI) is more disruptive to day-to-day living and relationships than once believed,  U.S. gerontology researchers discovered. …

 

(Karen Roberto, director of the Center for Gerontology at Virginia Tech) said family members reported distress at having to take on the other person's responsibilities or at the changes in the marriage or parent-child relationship.”

 

Caregivers Need Help Coping with Loved One's Mild Memory Loss

(Caregiver’s Home Companion)

 

“The care partner experiences a loss of independence and a loss of time for personal interests,” said co-researcher Dr. Rosemary Blieszner, associate director of the gerontology center. “The definition of MCI has been that it does not significantly affect daily life -- but sometimes that is not true.”

 

Families need help coping with mild cognitive impairment

(South Florida Sun Sentinel)

 

“The researchers also asked the families the type of information they would like to have. In response, the Center for Gerontology published a brochure for families, "Mild Cognitive Impairment – What do we do now?" 

www.gerontology.vt.edu/docs/Gerontology_MCI_final.pdf

 

The brochure contains information on how to recognize symptoms … when to seek a professional diagnosis … strategies for compensating for memory loss … advice to the care partner on how to care for oneself … how to prepare for the future.”

 

I suspect “memory loss” lurks among those monsters under the bed of every aging adult. Caregiving and living with Patti’s Multiple Sclerosis, we never saw it coming.

 

The family member who begins to demonstrate symptoms of memory loss is the least conscious and maybe the least willing to embrace professional discussion.

 

That step into caregiving through the thunderhead of surrendering personal independence challenges and reconstructs any family.

 

Caregivingly Yours, J Patrick Leer

www.caregivinglyyours.com

 

Tags: caregiving, caregiver, carer, Mild Cognitive Impairment, MCI, memory loss, Multiple Sclerosis, Center for Gerontology at Virginia Tech, Karen Roberto, Rosemary Blieszner, United Press International, Caregiver’s Home Companion, South Florida Sun Sentinel

wheelchair transferring (how we do it)

Transferring has been discussed often in this journal. Recent news articles have sadly reflected the risks to someone bed bound or non-ambulatory. If a person is unable to get from point A to point B, a caregiver or help becomes necessary.

Join us for a three minute glimpse into how we deal with transferring.

For those who have problems with AOL video player you can view the video directly from YouTube at

http://www.youtube.com/watch?v=7yKlKwUhgA4

I will confess that shooting this video with all those transfers and more in such a short period of time was grueling. There are no stunt doubles in caregiving. <grin>

Caregivingly Yours, J Patrick Leer

http://www.youtube.com/daddyleer

www.caregivinglyyours.com

Tags: caregiver, caregiving, Multiple Sclerosis, transfer, transferring, wheelchair, non-ambulatory, You Tube

Caregiving: grievances for the disabled and chronically ill?

Who “files grievances” for the chronically ill and disabled? Who “files grievances” for the dead? 

 

The American Federation of State, County and Municipal Employees (AFSCME) filed a grievance over the punishments for the 11 dispatchers disciplined for mishandling fire victim Brenda Orr's 911 call.

 

Brenda Orr, bed bound with Multiple Sclerosis, DIED!!! The 911 dispatchers were “punished” with letters put in their files. And they and their union are complaining??? … Incredulous!

 

911 dispatchers file grievance over punishment

 

“...Tom Tosti, the business agent for the union, did not respond to repeated calls for comment...”

 

Caregivingly Yours, J Patrick Leer

http://caregivinglyyours.com/

 

Tags: Multiple Sclerosis, AFSCME, Brenda Orr, caregiving, 911 dispatchers, The Intelligencer, Christina Kristofic, Bucks County, Doylestown, Tom Tosti

Caregiving: disabled Iraqi children get wheelchairs

Where is the love? … Well, a whole lot of it is in the people and the hearts behind this story.

 

Story Highlights

·     Wheelchair distribution was the vision of American contractor Brad Blauser

·     Humanitarian group brings the kids to a safe area so they can get the wheelchairs

·     Wheelchairs are made by prisoners in South Dakota,  delivered by U. S. military

 

Disabled Iraqi children

 get wheelchairs, big smiles

 

“We've got so many children out in the city that the ones who can get around are following their friends by dragging themselves around on the ground, which is heartbreaking to see," …

 

Caregivingly Yours, J Patrick Leer

www.CaregivinglyYours.com

Tags: wheelchair, Iraq, Brad Blauser, Wheelchairs for Iraqi Kids, Reach Out and Care Wheels, South Dakota State Penitentiary, caregiving, disabled, pediatric wheelchairs

Caregiving: ending invisibility

On April 27, 2004 I sent into cyberspace my first paragraph.

 

“Why share? I hope to make my daily life easier. One hat you wear as a spouse/caregiver is "designated medical information press agent" <grin> and this way I only have to share once a day. In a larger view, most people will have to walk this path eventually. Why buy some book, feel free to peek in….”

 

I did not have a clue if I had even done it correctly or if anyone would ever read a word about caregiving for Multiple Sclerosis. ‘Blog’ was what our then 16 yr old did. What was I trying to do?

 

45 months later this caregiving blog, “Caregivingly Yours”, has been peeked at 24,600+ times. (average: 547 “peeks” a month)

 

15 months ago Jackie of "LifeInBama" encouraged me to expand into You Tube videos. Sharing exploded with this 21st Century communication tool. Some time this past week You Tube viewers passed almost 4 years of readers. 25,000+ viewers have clicked and watched “Caregivingly Yours Videos". (average: 1,669 “peeks” a month)

 

With demand snowballing, I launched www.CaregivinglyYours.com six (6) weeks ago. To make it easier for new readers, journal entries are categorized and entry highlights quicken any search.  5,323 hits have found the web site since its launch on December, 21, 2007. (average:  3,548 “peeks” a month)

 

Invisibility too often cloaks disabled people or those with a chronic illness as their needs increase. The story of the tragic death of Brenda Orr was as invisible in the news, outside of the immediate Philadelphia area, as most likely was a ‘bed bound’, 53 yr old woman with Multiple Sclerosis in life.

 

From that first paragraph four years ago through today’s growth sharing was also about ending invisibility.  

 

I thank everyone who has taken a “peek”. You have enriched our journey.

 

Glancing around me, I admit there are not any more ‘hands’;  yet caregiving sure feels a lot less alone. Thank You for joining us!

 

Caregivingly Yours,

J Patrick Leer

musings from the lair of Cachalot

Tags: caregiving, Multiple Sclerosis, disability, chronic illness, AOL Journals, You Tube, Caregivingly Yours, www.CaregivinglyYours.com, Brenda Orr, LifeInBama

snow, ice, and a snow angel

 

          A SNOW ANGEL FOR VALENTINE’S DAY

 

 

 

Caregivingly Yours,

J Patrick Leer

www.CaregivinglyYours.com

Tags: snow, snow angels, Pennsylvania, caregiving, Valentine's Day

Caregiving: caller with MS put on hold, dies in house fire

Brenda Orr had multiple sclerosis and was bed-bound. She called 911 the morning of Jan. 29 to report that her bed was on fire and she couldn’t get out. 

 

         Caller put on hold, dies in house fire

 

“… Her 911 call rang in the Bucks County emergency communications center seven times — and 27 seconds elapsed — before a male dispatcher answered and said, "911. Can you hold one second please?"

 

Orr answered, "I can’t. This is an emergency. 911 emergency. Three-four-zero Doyle. Bed on fire."

 

But, on a recording of the call, it sounded like the man had already stepped away from the phone.

 

No one spoke for another 27 seconds.

 

County officials will not say what happened or why no one spoke to Orr during that time.

 

A female dispatcher picked up the phone 55 seconds into the call and asked for the location of the emergency.

 

Since Orr was calling from her home phone and the county has what is known as an "enhanced 911 system," Orr’s address showed up on the dispatcher’s computer screen. County Director of Emergency Communications Brent Wiggins said the dispatcher still had to ask for the address to make sure it was correct. There was nothing in the 911 system to indicate that Orr was disabled.

 

Orr calmly and clearly repeated her street address — "Three-four-zero Doyle [Street]" — three times as the dispatcher asked if she lived in a township or borough.

 

After Orr told the dispatcher that she lived in Doylestown, the dispatcher asked if Orr was still in the house.

 

"Yes," Orr answered.

 

"All right. Well, you wanna get out of the house?" the dispatcher asked.

 

"No! I’m disabled," Orr answered. "The bed is fully inflamed."

 

Then Orr went silent.

 

For the remainder of the recording, the dispatcher is heard trying to talk to Orr and asking a co-worker if she should stay on the line. …

----------------------

Brenda Orr, rest in peace.

 

Caregivingly Yours,

J Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, Doylestown, Brenda Orr, The Intelligencer, Bucks County, 911, Christina Kristofic

Caregiving: caring Valentine's Day wishes to all

Caregiving can certainly wear anyone down. Valentine’s Day hoopla may seem more like a Care Bear’s nightmare? 

 

                

27 years ago Care Bears first appeared on American Greetings greeting cards before exploding into a world wide 80’s phenomena.

 

Could anything else have caused ‘care’ to be translated into so many languages? "Les Bisounours” (France), "Die Glücksbärchis” (Germany), "Troetelbeertjes" (Netherlands), "Gondos Bocsok" (Hungary), "Los Ositos Cariñositos," (Latin America), "Cariñositos" (Argentina), "Ursinhos Carinhosos” (Brazil), "Krambjörnar" (Sweden), "Kælebjørnene” (Denmark), "Bergibjørner" (Norway), "Halinallet" (Finland), "Troskliwe misie" (Poland), "Грижовните Мечета" (Bulgaria), "Τα αρκουδάκια της αγάπης" (Greece),  and "(gli) Orsetti del Cuore" (Italy)

 

As any survivor of the 80’s remembers the Care Bear Stare would send magical light beams of care out of their tummy symbols restoring the balance of caring in the world.

                 

I wonder how much rubbed off from animated bears to people caring for people. That generation of parents is most likely facing caregiving concerns and that generation of children is now watching their parents in ‘real life’ confront care as a reality.

 

Andy Warhol once asked, “Does art imitate life or does life imitate art?”

 

Caring Valentine’s Day wishes to all,

Deseos del día de Valentine que cuida a todos,

Wünsche interessierenden Valentines Tageszu allen,

Souhaits du jour de Valentine s'inquiétant à tous,

 

J. Patrick Leer

http://lairofcachalot.blogspot.com/

Tags: caregiving, carer, Care Bears, American Greetings, Valentine's Day, Les Bisounours, Die Glücksbärchis, Los Ositos Cariñositos, 80's, Andy Warhol

Caregiving: "mentally disabled women strapped with explosives"

Baghdad, Iraq (CNN)  “… Two mentally disabled women were strapped with explosives Friday and sent into busy Baghdad markets, where they were blown up by remote …The bombs killed at least 98 people and wounded more than 200 at two popular pet markets on the holiest day of the week for Muslims… “

 

The slaughter of innocents is monstrous. Using mentally disabled people as weapons is inhuman?

 

Caregivingly Yours,

J Patrick Leer

 

musings from the lair of Cachalot

Tags: caregiving, mentally disabled, Iraq

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