Thursday, March 13, 2008

Caregiving: ENERGY VAMPIRES

Just when I thought I had completely inventoried my closet of anxieties, I discover … ENERGY VAMPIRES! 

 

Unlike their blood sucking cousins with bad Romanian accents, these ‘energy vampires’ feed on CARE. They are not exclusive to spouse caregivers or caregiving, BEWARE!       

 

“Energy Vampires are not to be confused with the vast majority of people who simply need help, support, direction and care...

 

No, the people I'm talking about here are relentless in their negativity and their 'woe-is-me'ness”

 

It's great to be a giver, a carer and a feeler (sometimes), but now and then we need to take a stand with certain people.. because if we don't, we begin to suffer and then nobody wins.”

DEALING WITH ENERGY VAMPIRES by Craig Harper

 

“Some people bring unexpected lightness and comfort to your life. They crackle with energy, practically electrify you with their presence. And then there are those who leave you feeling stressed out. Or guilty. Or exhausted down to your very last molecule.

 

I call them energy vampires …”

WATCH OUT FOR ENERGY VAMPIRES By Dr. Judith Orloff

 

While certainly the above writers are insightful, I am not so sure about psychobabble as a vampire deterrent. “Gee, Count Dracula you sound conflicted.” ??

 

The ‘old ways’ have a certain appeal to me. If pulling out garlic, holy water, and a cross has not given the annoying, energy-sucking, woe-is-me person a hint, I suspect the wooden “woe-is-you” stake should do the trick. <grin>

 

Or … discussing the topic with Patti last night (well actually twice since Multiple Sclerosis short term memory problems necessitated a replay <grin>), Patti proposed ...

“just tell them to get the f*ck over it!” 

 

Caregivingly Yours, J Patrick Leer

www.CaregivinglyYours.com

non-caregiver musings:  www.lairofcachalot.blogspot.com
8 comments:

Monday, March 10, 2008

Multiple Sclerosis in FILMS / MS Awareness Month

MS & FILMS -- March is Multiple Sclerosis Awareness Month 

ICH KLAGE AN (1941) A doctor's wife with Multiple Sclerosis urges her husband to kill her rather than let her suffer. At his trial he accuses the state of not helping the disabled die. This film was released in the final year of Hitler’s Aktion T4  which killed a quarter million children and adults with mental or physical disabilities.

DUET FOR ONE (1986) “Stephanie Anderson, a famous and talented violinist, finds her whole world turned upside down when she learns she has Multiple Sclerosis. With her career at an end, and her frightened husband ready to take flight, Stephanie struggles to find a way to accept her fate and find some happiness in what remains of her life.” Rotten Tomatoes

GO NOW (1995) “Move over, disease-of-the-weak pics, here comes "Go Now," a genre-busting an-them to life, love and friendship … A big-hearted, lively dramedy centered on an average guy's struggle to cope with the onset of Multiple Sclerosis … pic completely redefines the parameters of stories centered on a debilitating disease. “ Variety

EDEN (1997) "Helen, has Multiple Sclerosis …The year is 1965 … astral projections are contrasted to her daily experiences living with the uncertainties of MS. This film is an interesting treatment of disability, body image, and spirit. Eden is a film where MS is used to help us explore mind, body, spirit, and who we are.”  Gary Kiger, Utah State University, Disability Studies Quarterly, Volume 16 No. 3

HILARY AND JACKIE (1998) “Much of the film "Hilary and Jackie" explores the authenticity of the MS experience and of identity. The life of Jacqueline du Pré had many tragic elements - the degeneration of her body confronted her continually with the loss of the powerful person she saw herself as being. … She was not a victim - but a pro-active agent battling her impairments.” Helen Meekosha, Senior Lecturer, School of Social Work, University of New South Wales, Australia

Caregivingly Yours, J Patrick Leer
www.CaregivinglyYours.com
non-caregiver musings:  www.lairofcachalot.blogspot.com
3 comments:
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Caregiving: MS BLOGGERS / MS Awareness Month

MS BLOGGERS --- March is MS Awareness Month

 

Lisa, of Blogger journal Brass and Ivory, has assembled an extraordinary project --

MS Awareness, Blogging Friends, and a Little Link of Love

 

A listing of “at least 137 MS Bloggers out there actively discussing whatever suits their fancy.”

 

She has even taken the extraordinary effort to break them down by how prolifically they post. Thank God, “Caregivingly Yours” ranks ‘moderately’. Personally I always fret over screen time. <grin>

 

 redefines awareness.

 

Since Thanksgiving Morning 1989 when MS abruptly left Patti dependent on others, I have learned as a spouse caregiver that Multiple Sclerosis awareness is as much personal story telling as it is facts.

 

'Cause love's such an old fashioned word

And love dares you to care for

The people on the edge of the night

 And love dares you to change our way of

Caring about ourselves

This is ourselves … Under pressure

(Freddie Mercury and David Bowie)

 

Caregivingly Yours, J Patrick Leer

www.CaregivinglyYours.com

non-caregiver musings:  www.lairofcachalot.blogspot.com
2 comments:

Saturday, March 08, 2008

Caregiving: MS: A SHORT HISTORY / MS Awareness Month

March is Multiple Sclerosis Awareness Month --- MS: A SHORT HISTORY

 

Allow me to introduce the "the Napoleon of the neuroses," Dr. Jean-Martin Charcot (1825–93), the first person to recognize and label sclerose en plaques as a distinct, separate disease. 

 

In 1878, Charcot identified MS as dysarthria (problems with speech), ataxia (problems with coordination), and tremor. Charcot also observed cognition changes in MS since he described his patients as having a "marked enfeeblement of the memory" and "with conceptions that formed slowly".

 

His pupil, Dr. Sigmund Freud would detour Multiple Sclerosis treatment (called “creeping paralysis” in those days) as a mental condition caused by “female hysteria.” … Ahhhh! Sigmund you were such a bubba! …  

 

Historical records and ‘journals’ provide even earlier accounts of people who probably had MS, Saint Lidwina (1380–1433) and Augustus Frederick d'Este (1794–1848), a grandson of King George III of Great Britain.

 

Back to the 20th Century … in spite of growing medical knowledge, little or no coordinated research was conducted into the mysteries of MS until relatively recent times.

 

The catalyst was an ordinary citizen who single-handedly launched an international war on MS.

Sylvia Lawry (1915–2001), whose brother Bernard was diagnosed with Multiple Sclerosis, placed a classified advertisement in The New York Times in 1945,

"Multiple Sclerosis: Will anyone recovered from it please communicate with patient."

50 replies reported no recoveries only others seeking hope themselves.

 

Within a year, she had managed to enroll more than 20 scientists to found the world’s first ever MS organization, the Association for Advancement of Research in Multiple Sclerosis.

 

MS eventually claimed her brother’s life, yet Sylvia Lawry never slowed her war. Approximately 75 National MS Societies worldwide and the Multiple Sclerosis International Federation (MSIF) would evolve from Sylvia Lawry’s original organization.

 

With increasing MS awareness and fundraising the late 20th Century exploded with research and hope.

 

1993 hailed the first MS medication, Betaseron®, to reduce the severity and frequency of attacks for specific types and levels of Multiple Sclerosis.

 

MS Awareness is people; patients, friends, family, spouse caregivers, and caregivers … ordinary people driven by caring to attempt the extraordinary.

 

Caregivingly Yours, J Patrick Leer

www.CaregivinglyYours.com

non-caregiver musings:  www.lairofcachalot.blogspot.com

 
2 comments:

Thursday, March 06, 2008

Caregiving: MS ARTISTS / MS Awareness Month

March is Multiple Sclerosis Awareness Month --- MS ARTISTS

 

Through my 19 years as a spouse caregiver I find myself humbled by the soul of those living with disability. A gifted wordsmith once labled it a unicorn in a cage.

 

Multiple Sclerosis Association of America (MSAA) recently conducted its first-ever art contest to find paintings and drawings from artists who live with Multiple Sclerosis (MS).

 

One artist featured in their Winter 2008 MSAA “The Motivator” magazine is Sister Kathy Cairone.

 

                        

 

With a little help from family and friends, dreams can be enabled.

 

Caregivingly Yours, J Patrick Leer

www.CaregivinglyYours.com

non-caregiver musings:  www.lairofcachalot.blogspot.com

 

6 comments:

Tuesday, March 04, 2008

Caregiving: in search of plastic dashboard Jesus

One of my warm and fuzzy memories of childhood is riding in our family car with plastic Jesus on the dashboard.

 

In 1955, Father Gregory Bezy, founded the Sacred Heart Auto League after he lost his niece and nephew in a car accident. His intention was to encourage Catholics to drive mindfully and prayerfully

 

A small statue of Jesus was designed with a magnet in the base since vehicle dashboards at that time were made of metal. The statues were mailed to millions of people in an effort to get them to join the “apostolate of prayerful, careful, and reparative driving”. Excess contributions were used to support Sacred Heart missions in Mississippi.

 

Plastic dashboard Jesus rode on auto dashboards across the U.S. through the 50’s and 60’s. In 1967, Paul Newman sang a variant of the folk song “Plastic Jesus” in the movie ‘Cool Hand Luke’ and enshrined plastic dashboard Jesus in pop culture.

 

“I don't care if it rains or freezes

Long as I got my Plastic Jesus

Riding on the dashboard of my car.”

 

In the late 60’s the Auto League’s symbol was changed to a Sacred Heart Dashboard Medal.

 

Now in the 21st Century perhaps motivated by nostalgia or perhaps by caring, I wanted one! As a spouse caregiver and a parent of a soon to be 20 year old, “driving” is a major part of any day. Encouragement to drive “mindfully, carefully and prayerfully” cannot hurt.

 

Google searching quickly found two modern alternatives …

 

“Dashboard Jesus” $4.50 (+3.92 shipping) plastic Jesus figure sits atop a metal spring with an adhesive base.

 

“Buddy Christ” Dashboard Statue $14.95 (+7.45 shipping). Fans of Kevin Smith movies will recognize “Buddy Christ” from his movie ‘Dogma’.

 

NOT so easy to find …  however, my quest was finally successful!!!

 

  Sacred Heart Auto League Commemorative Statue of the original 4.5” plastic dashboard Jesus (from the 1950's- 60's) for a suggested donation of $10. (NO shipping charges) Revenue supports the Sacred Heart Southern Missions.

 

“Despite technological advances, there is still significant loss of life from car accidents: About 40,000 people die every year in the United States.  …  The death toll is expected to nearly double by 2020. A much higher number of accidents result in injury or permanent disability.” Wikipedia

 

“Despite technological advances …”??? Well, then maybe a reminder to pray when turning that ignition key is not such a nostalgic idea? <grin>

 

 

Caregivingly Yours, J Patrick Leer

www.CaregivinglyYours.com

non-caregiver musings:  www.lairofcachalot.blogspot.com
4 comments:

Thursday, February 28, 2008

Caregiving: Kleenex, Olay, Cold-eeze, & Bag Balm - OH MY!

Last night, the nursing station informed me Patti was displaying cold symptoms. … They expressed concerns about an outing and risks of exposure. … Flu vaccinations had apparently missed whatever strain is currently epidemic. … Multiple Sclerosis is an out of whack immune system, throw in a cold and you’re brewing germ pot luck. 

Any way … Care Facility Caregiving 101 preaches that you try to include the patient in their care planning and decision making. Patti’s conclusion, “I just want a f*cking cigarette!”

So we headed out for a brief “isolated” outing. 

While Patti happily stayed in smokey quarantine in the van, I 'quickly' ran into the store for some items. Following are some spouse caregiver shopping thoughts …  

While I understand the cost efficiency, institutional facial tissue is from a different world than Kleenex® Brand Lotion Tissues with Aloe & Vitamin E. Let’s face it when you will be blowing your nose often, THIS is your best friend.

Patti likes Olay Body Wash plus Lotion Ribbons. Personally, I am an Irish Spring kind of guy so this is all alien to me, except that institutional body wash seems to resemble Lysol for humans.

I have no strong feelings about cold lozenges. Personally I am a fan of ZICAM® for colds. Patti however, at best, can self-administer by sucking on lozenges so COLD-EEZE® seemed the ticket since it shares Zinc in its formula with ZICAM.  
---------------------------
Unrelated to this outing but on the topic of product discussions …
  
BAG BALM Yes, this salve for cow udders produced by the Dairy Association Co since 1899 can be and is used for Depends rash, and accommodates care facility budgeting.

While I do not doubt its effectiveness and 100+ years of success, there is just something about discovering your family member is being soothed with cow udder salve that motivates you to drive directly to the store to buy anything. 

However, in the interest of fair AOL Journals(ism) I have a dear friend who sees this differently -- a decorative tin of Bag Balm as an always appropriate and unforgettable ‘hostess gift’.

Caregivingly Yours, J Patrick Leer
www.CaregivinglyYours.com
non-caregiver musings:  www.lairofcachalot.blogspot.com
9 comments:
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Tuesday, February 26, 2008

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

 
4 comments:

Tuesday, February 19, 2008

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
7 comments:
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Sunday, February 17, 2008

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/

 
4 comments:

Saturday, February 16, 2008

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
4 comments:

Thursday, February 14, 2008

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

7 comments:

Wednesday, February 13, 2008

snow, ice, and a snow angel

 

          A SNOW ANGEL FOR VALENTINE’S DAY

 

 

 

Caregivingly Yours,

J Patrick Leer

www.CaregivinglyYours.com
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