a caregiver reflects on the R-Word

     As a caregiver you are both a shield against 'others' and an educator to 'others' especially when the person you care for is never unattended.

     Special Olympics unquestionably edgy campaign to end the R-Word today, 03.31.09 frankly is confusing to me.

     Long ago in a language no longer spoken the Latin word for slow, tardus, would eventually evolve to many variations of the R-WORD.

     Trying to draw attention to correct language usage is a tough line to walk at the risk of political correctness in absurdum.

     Oddly the Special Olympic promotional videos depict people using the R-Word as teenage ‘who’s in’ or ‘who’s out’ slang of social status or cliques not directed at or intended to hurt anyone with mental retardation.

     To me, a concern with such a campaign is that others are inadvertently painted with the same brush. State departments of Mental Retardation and The ARC of the United States (aka Association for Retarded Citizens) greatly benefit and assist those who need their help.

     Mental Retardation is a medical diagnosis and people and families NEED help. Lacking adaptive skills or the abilities to speak and understand, a person can be overwhelmed by the simple tasks of everyday life. In living with Autism, Mental Retardation can be comorbid for some.

     Yes, I used an IQ based graph for a visual to DEMONSTRATE the impact of mental retardation. MOST reading this fall between the two tallest blue and green bar ranges.

     I created the inserts for Mental Retardation from Assessment Psychology Online and for Austim Spectrum from Autism, IQ, and the Stanford–Binet.

     Maybe I just do not get the bigger picture or am just too pragmatic in these economically challenged times but millions spent over words could have helped some people and families in need.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders...

Caring, Care Facility, Desecration

My heart and prayers go out to all those living with Sunday’s desecration of CARE at Pinelake Health and Rehab.

From the News & Observer of Raleigh, North Carolina:

8 KILLED AT CARTHAGE REST HOME
Jerry Avant, a registered nurse, was killed in the shooting, shot more than two dozen times. "He undoubtedly saved a lot of lives", Avent's father called his son a "good boy" who "really loved nursing."

Carthage Police Officer Justin Garner, who was the first officer to arrive on the scene, exchanged gunfire with the gunman in a hallway. Officer Garner suffered a gunshot wound to his leg during the shoot-out before wounding the gunman and ending the carnage.

Sunday, in our corner of the care facility universe, Patti was having a challenging day with Multiple Sclerosis symptoms of short term memory loss, cognitive impairment and fatigue. She was more cantankerous than aware of any news and world events.

An outing of Chinese carry-out with her parents, brother, and me … plus ‘ciggies’ made for a world of a different Sunday for her.

Caring will go on because it must go on!

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

Guide for Uninsured Multiple Sclerosis Patients

“Having Multiple Sclerosis and no insurance — or inadequate insurance — is a bitter pill to swallow. … Like it or not, MS and money go hand in hand.”

GUIDE FOR UNINSURED MULTIPLE SCLEROSIS PATIENTS

A shout out from Caregivingly Yours to MS Maze for the above most excellent and timely guide.

Beyond NO insurance or inadequate insurance, LOSS of insurance is increasingly haunting families living with chronic illnesses.

"As the economic crisis worsens … the number of uninsured citizens will grow. In February 2009, more than eight percent of Americans were unemployed and 1.1 million of them will become uninsured with each one percent increase in unemployment.” Sen. Edward Kennedy (D-MA)

One thing for sure about trickle down theories, shi#t does trickle down on those that can least afford it.

Exhaust the ‘guide’ ideas for help. Gambling with your health by medication skipping, ignoring symptoms or such is not the wisest course.

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

"What's up with anal probing?"

For me, anal probing and alien abduction have always associated; however since the month of March is National Colorectal Cancer Awareness Month I will step forward - I was recently probed.

Not by aliens, I believe, but then again I slept through the whole experience so who knows.

Harassed for years at my annual physical to get a colonoscopy I had successfully dodged, delayed, and canceled all previous attempts.

Omens were not good as I followed my instructions and went looking for Fleet Phospho-Soda. Fleet had recalled the product, something about lawyers and renal failure.

Plan B was NuLytely, a gallon jug with powder in it and some flavor packets. You chug a glass wait a couple minutes and chug some more, brought back memories of old college drinking games.

Eventually after hours on the commode, I found myself debating the definition of a clear stool with the jug, not unlike Tom Hanks talking to his volleyball Wilson in “Cast Away”.

ANYTHING and EVERYTHING else was easy.

I weighed about 5 lbs less. Walking around with my extremely clean butt hanging out of the backless gown was somewhat exhilarating.

I remember chatting with the anesthesiologist and then I remember waking up. From the time I arrived to walking away was under 90 minutes and most of that was waiting and sleeping. My proctologist swore to me that I had a colonoscopy and everything was just fine.

Patti endured a colonoscopy a couple years earlier, a monumental caregiving challenge when non-ambulatory and both bowel and bladder incontinent due to Multiple Sclerosis. Without the assistance of her Mom and cousin (a former care facility worker) I cannot even imagine how her prep could have been possible or safe.

She too passed with flying colors.

Considering this all costs a couple thousand dollars and with 40%+ of Americans without medical insurance, this whole Colorectal Cancer campaign may be approaching a moot point with our failing US health care system.

Or worse:
“Thousands of veterans … may have been exposed to hepatitis and HIV because of contaminated equipment after getting colonoscopies …”
Possible contamination at VA facilities sparks call for inquiry

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

Mentally Ill A Threat In Nursing Homes?

“Over the past several years, nursing homes have become dumping grounds for young and middle-age people with mental illness …”

MENTALLY ILL A THREAT IN NURSING HOMES

Now that was a helluva head line to read especially if you have a family member or friend living in a 24/7 care facility.

Reading on and learning that a woman with Multiple Sclerosis and dementia started a fire at a Connecticut nursing home killing 16 other residents was a vivid reminder of the day Patti while still at home with Multiple Sclerosis and the onset of her dementia like symptoms accidentally set our stove on fire.

A litany of tragic incidents in the AP story leaves you wondering about the Saturday morning fire that killed 4 developmentally disabled people at the New York State Office of Mental Retardation and Developmental Disabilities group home in Wells, NY.

The AP story offers several reasons from closing of mental institutions to the business of filling rooms at nursing homes.

I would propose two others. First aging home caregivers, a mentally disabled adult may have been a mentally disabled child. Parent caregivers may have died or can no longer care for them physically and/or economically. Second a failing health care system with far more have nots than haves.

Caring about people can never be about warehousing people whether they are frail and elderly or disabled and young.

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

caregiving on the Conodoquinet

When it is sunny and 67°F (19°C) in mid-March you just have to make it an “outing” kind of day no matter what your care situation.

For us, not only an outing but an 'adventure', somewhere we had never been before. I am the first to say this is rarely a good idea when a wheelchair is involved, but I was in the mood to create accessible if need be.

Discovering the 18 acres of Willow Creek Park tucked into a bend of the Conodoquinet Creek was like finding a hidden treasure.

Most eclectic place, old tree stumps and trunks are carved into tree art.

Returning in Patti’s all terrain scooter this will be entirely accessible. Paths through the wet land sanctuary are paved environmentally friendly with wood chips. Patrick’s ‘rickshaw service’ navigated the terrain while giving Patti a reverse view from her wheelchair.

We found an abandoned Willow Mill Speedway, a racing track for elves as best we could only guess. Whatever we did a couple laps for exercise with me pushing Patti then let Patti try a lap herself.

Even the maintenance buildings have been touched by the brush of a bemused painter.
Pavilions are accessible and the latest in wheelchair accessible picnic tables are available throughout the park.
Though just sitting and taking the time to loose your self in the sounds of a creek gurgling by is a gift money cannot buy.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

The Saint Patrick You Never Knew

“…The saints are for everyone—believer, unbeliever, Christian, non-Christian—it doesn't really matter. They are the people who say by their lives that human life is valuable—that my life is valuable—and that there is a reason for living. Without them, history would just be one horror after another."

“Some 1,500 years ago a teenage boy from what is now Great Britain was kidnapped and enslaved … . Not since Paris absconded with Helen of Troy has a kidnapping so changed the course of history.

And so it was that a young Briton named Patricius died an Irishman named Patrick. And neither Ireland nor Christianity was ever quite the same.”

From an interview with author Thomas Cahill in St. Anthony Messenger, “The Saint Patrick You Never Knew”.

• St. Patrick is the first male Christian since Jesus to praise women, speaking of women as individuals, lauding their strength and courage.
• St. Patrick is the first human being in the history of the world to speak out unequivocally against slavery.
• A better advocate than St. Patrick cannot be found for anyone disadvantaged, living on the fringes of society, or excluded—people that no one else wants anything to do with.
• A mystic who felt the presence of God in every turn of the road.
• It is Patrick's conversion of Ireland that makes possible the preservation of Western thought through the early Dark Ages by the Irish monasteries founded by Patrick's successors.
• The first to introduce Christianity outside Greco-Roman civilization.
• By converting the Irish to Christianity without making any attempt to romanize them as well, he founded a new kind of Church, one that was both Catholic and primitive. More joyful and celebratory (than its Roman predecessor) in the way it approaches the natural world. Not a theology of sin but of the goodness of creation.

When Irish eyes are smiling,
Sure, 'tis like the morn in Spring.
In the lilt of Irish laughter
You can hear the angels sing.
When Irish hearts are happy,
All the world seems bright and gay.
And when Irish eyes are smiling,
Sure, they steal your heart away.
(by Chauncey Olcott and George Graff, Jr.)

Beannachtaí Lá Fhéile Pádraig
(Blessings of St. Patrick’s Day!)

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

care facility era: 5th anniversary

Sunday, was the beginning of Patti’s 5th year in an extended care facility.

An unremarkable, in fact, unnoticed benchmark for Patti, not so for me. Spent part of the day in my head beating myself up because Multiple Sclerosis progression had won. Even though I had juggled 14 years of home care for Patti and single parenting our daughter, the macho voice on my shoulder reminded me I had still lost.

Arriving to pick Patti up for an outing I jumped in helping the aides change Patti’s Depends and clothing with a stand-up lift. I was snapped out of my funk by the comradie, banter, and laughter between them all.

Knocking the macho voice off my shoulder, YES this was far better than 5 years ago in the twilight of homecare.

Providing the ol’ traditional basic needs of food/water, shelter, and clothing is not enough. Safety and healthcare ARE basic needs for someone living with Multiple Sclerosis.

In the twilight of homecare, Patti was falling multiple times a day and increasingly placing herself and others in at risk situations.

Patti can STILL develop other health issues and even more so because of an out of whack immune system from MS. Medical attention can be complicated by trying to juggle transportation and appointments around a home caregiver’s schedule.

Safety and healthcare have become NON-ISSUES in the care facility era, now at her need 24/7.

“Home” was my battle flag for homecare.

However, MS dementia like symptoms of cognitive progression plus total bowel and bladder incontinence changed the definition of home. When visiting meant possibly changing an adult diaper well you suddenly have no friends. Home became increasingly isolated.

It took awhile to get used to teamwork. However now, in the extended care facility era, three shifts a day of fresh, professional and kind people provide 24/7 attended care and companionship. Patti has never expressed a second thought. Additionally, Patti’s parents visit with her 3-4 afternoons a week. 4.5 evenings a week I pick her up for outings and/or dinners at home then tuck her into bed myself at her care facility.

Yes, as the macho voice on my shoulder reminds me, I still lost the home caregiving battle. However with the echoes of laughter from a Depend change in my head I know this is the better course for all of us.

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

accessible travel

"Accessible for one disabled person is not the same as accessible for another," Craig Grimes says.

Amen! Amen! Amen!

I can not even count how many times I have to “walk the ground” first before attempting to take Patti somewhere either in her wheelchair or scooter.

Hours of telephone conversations, if not even a pre-visit, have been necessary to determine exactly what is meant by an “accessible bathroom” in order to stay at a hotel.

The word “accessible” may as well be definition-less.

A shout out from Caregivingly Yours to Craig Grimes!
ONE MAN HELPS THE DISABLED SEE THE WORLD

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

MS Awareness: a fairy tale of two people

Let's face it, Multiple Sclerosis and fairytale are not often found in the same sentence. Welcome to Jennifer and Dan Digman for sharing their most unigue story and even more unigue perspective on living with MS.


"Movie writers would never dream up a fairytale of two people with multiple sclerosis falling in love and living happily ever after. But Jennifer and Dan have been living this truest of love stories as a married couple since 2005.


Combined, Dan and Jennifer have taken on this chronic illness for more than 20 years. Jennifer was diagnosed in 1997; Dan was diagnosed two years later. She has secondary-progressive MS, while his is relapsing-remitting."



Dan and Jennifer Digmann


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

MS Awarness: right to die, right to live

Debbie Purdy, diagnosed with Multiple Sclerosis in 1995 has watched her life progressively impaired from jungle trekker and parachutist to non-ambulatory and dependent. She's stirred up a legal and media storm in the UK trying to protect her husband from prosecution to help her to travel to Dignitas, a Swiss assisted suicide clinic.

In the US, Dr. Jack Kevorkian assisted in the choices of over a hundred people to die. Multiple Sclerosis and Lou Gehrig's disease (ALS) were the most common diagnoses.

One of those with MS wrote that he feared living in "one of those rat-infested nursing homes to be warehoused by `Nurse Ratched,'", others worried over the toll of years of long term care on their loved ones, others feared struggling alone.

I can understand people fearing that if they become disabled with Multiple Sclerosis they'll have no choice in how they live.

Our culture and media is obsessed with able bodied mythology. Even MS specific publications and pharmaceutical marketing slant toward MS-lite, leaving MS-max in a shadowy unknown.

In our story, yes Patti’s life has dramatically changed. She did not know that Multiple Sclerosis would by her mid 40’s mean that each day she would be dependent on others to get out of bed, to get dressed, to cut up her food and help feed her. Non-ambulatory, every bladder and bowel movement would be in her pants and necessitate others to clean and change her. Visual and cognitive impairment would block her into a world within a world.

Yet for Patti to survive every such day and want to get up and face another takes heroic courage and a will to live that few of us may have.

We all from individuals, to families, to societies need to focus more on caring with dignity.

MS or not, we are ALL going to one day know or love someone who can no longer take care of themselves, even ourselves.

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

MS Awareness "put it out there"

“forgive me for not capitalizing as i have ms and limited use of my left arm.
i wanted to thank you very much for "putting it out there."

How do people with Multiple Sclerosis share in this 21st Century?

In our story, Patti cannot journal herself because of MS visual and cognitive impairment, lack of use of her left arm, and unpredictable control of her right.

Do MS stories make some Dickensonian passage from MS past, MS present, and MS yet to come?

Yes, no, and maybe. Multiple Sclerosis symptoms and progression tend to be unique as well as are the support and resources available to each person.

More progressive MS and advanced MS symptoms unquestionably require more effort to communicate. Yet, sharing YOUR story may help another to discover that they are not alone. Otherwise cyberspace, by default, becomes a phantom’s mask revealing only part of the face of MS.

“not only am i living with ms but my husband also has the disease. … (your website) helped me look at this disease from both perspectives.”

I am always humbled by the reach of Caregivingly Yours. From my original entry: “Why share? … most people will have to walk this path eventually. Why buy some book, feel free to peek in. … This new world of journals or blogs or whatever seems worth a try.” “Caregivingly Yours” April 27, 2004

Journals/blogs read in reverse chronological order and eventually demand necessitated a website. If someone had just found our story, it was challenging to ‘cut to the chase’ through years of entries. A website gives you and the reader more control, of course it costs you money whereas journaling is free.

Network Solutions® offers a reasonable priced do it yourself web site package including domain name and web site building tool “for dummies”.

If considering sharing I recommend trying a journal/blog first simply because it is a free way to test the waters of cyberspace. Google’s Blogger I have found easy to work with.

Most important of all, just say it. Just “put it out there”.

Discovering you are not alone is a beacon anytime, any where.

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

MS Awareness - Visual Impairment

Friday afternoon at Patti’s care facility …

Patti: “Patrick, is that you?”

Standing less than six feet from Patti I flashed on memories of when we first dated over 25 years ago before Multiple Sclerosis.

Patti would remove her glasses and squint her way around. I used to joke that she reminded me of Mr. Magoo. “Magoo” became an affectionate nickname.

“Hey! Magoo.” I answered.

Her smile beamed in on ‘the shape’ that now days her “legally blind” vision masks in the blur of MS visual impairment.

While the above is how MS visual impairment impacts one family, OUR family, check out this link from the UK Multiple Sclerosis Society for the nuts and bolts of:
Visual Impairment in MS

Speaking of vision, this able-vision caregiver and snow lover had to blink twice this morning to make sure I was not dreaming. Two inches of winter beauty dressed the day.

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