Sunday, March 30, 2008

blog? - no shoes, no comments ... no problem

Feeling alone may as well be an ‘official stage’ of acceptance for caregivers, disabled, or chronic illness. Reading the stories of others experiencing a similar path can be more than a friend … plus, you can reach out and visit any time of night or day. 

People starting into the health care unknown may discover ‘real stories’ shared through blogs / journals helpful beyond medical profession self help pamphlets.

In general, eight (8) percent of all Internet users now write blogs, while 39 percent read them. (Pew Internet & American Life Project)

90% of users simply READ, 9% comment from time to time, and 1% account for most contributions according to a Jakob Nielsen study.

Should you start a journal? Should you throw in the towel frustrated over comments?

DO NOT let comments make you nuts.

When comments drive your blog / journal then that 1% is refocusing YOUR story and your information. Embed a hit counter if size matters.

On the other hand social networking is a motive for some writers. Comments become an integral part. Internet evolution has spawned social specific communities such as MySpace or Facebook.

Do not rule out market share when deciding where to host your blog. The Internet is business, big fish swallow little fish.

35% - Blogger
21% - Live Journal
20% - TypePad
06% - Diaryland
04% - Windows Live Spaces
03% - AOL Journals
11% - misc. others combined

“Caregivingly Yours,” posts three editions: Blogger, AOL Journals, and MySpace.

Deciding to share our story of spouse caregiving and living with Multiple Sclerosis, I began with ‘AOL Journals’ because our teenage daughter counseled that is where old people like me journal. <grin> … ‘Blogger’ because it has the largest market share and no advertisements. (AOL ads can be rude cavorting on the top of a poignant or sensitive entry.) … MySpace because National Multiple Sclerosis Society asked me to post an edition there.

Your blog / journal is YOUR STORY. No shoes, no comment … no problem. Readers "always" welcome!  

Tuesday, March 25, 2008

Caregiving: time nibblers

It’s easy to get distracted. 

Yes, any one’s day can be ‘nibbled to death by ducks’.

As a caregiver, I swear those web footed time nibblers follow me around.

Lingering a little longer in a hot shower or enjoying a second cup of coffee … quack!

It’s so easy to get behind. 

Caregivingly Yours, J Patrick Leer 
non-caregiver musings:


Saturday, March 22, 2008

Caregiving: "the Easter people"

How do you observe a day like ‘Good Friday’ when Multiple Sclerosis cognitive impairment and short term memory loss blanket any day in mental fog?


Caregivers just do the best they can and hope for some connection with the world, small or big.


Patti’s dysphagia and challenges with eating eliminates any boney fish. As spouse caregiver and designated chef, I opted for swordfish steaks which are also easily grilled outdoors keeping fish cooking odors outside.


Hollow chocolate crosses kept attention on “Good Friday” and generated some related dinner conversation at least until consumed and faded into short term memory loss.


Two JOYOUS events followed …


I awoke Saturday morning to discover the Easter Bunny tried to hide my garden eggs in a coating of SNOW!!!


Most JOYOUS of all was receiving a MySpace message from my nephew stationed in Iraq:


"i will be done for good this time. i guess i could get sent over here again in a couple of years depends on who is president. but i should be getting back to va around the 20th of April. i will be having (my son’s) first birthday / my coming home party like the first weekend of may. to you soon"  



"Do not abandon yourselves to despair. We are the Easter people and hallelujah is our song.”  Pope John Paul II


Caregivingly Yours, J Patrick Leer 



non-caregiver musings:

Friday, March 21, 2008

co-dependency vs caregiving

Ladies and Gentlemen, welcome to today's WORD Wrestling Federation knock-down match! 
   In one corner “Co-Dependency” represented by Mental Health America and in the other corner “Caregiving” represented by Dr. Robert Westermeyer … 

“CO-DEPENDENCY” by Mental Health America
“Co-dependency is a learned behavior … patterns have been seen in people in relationships with chronically or mentally ill individuals.

… family members learn to repress emotions and disregard their own needs. They become “survivors.” They develop behaviors that help them deny, ignore, or avoid difficult emotions. They detach themselves. They don’t talk. They don’t touch. They don’t confront. They don’t feel. They don’t trust.

Attention and energy focus on the family member who is ill ... The co-dependent person typically sacrifices his or her needs to take care of a person who is sick.

They have good intentions. They try to take care of a person who is experiencing difficulty, but the caretaking becomes compulsive and defeating.” 

“Caregiving is not enabling. Caregiving is fueled by the capacity to experience empathy and the desire to make the lives of our intimates more happy. … 

Victimhood, though stylish these days, creates a distraction …codependency authors who believe that relationships should be fair … are living on Fantasy Island. 

Caring is good. Some people care more than others, and caring often endures despite inequity. Thankfully, we live in a world in which caring can shower itself on the good, bad and ugly. Sometimes this results in imbalance. Imbalance is not necessarily bad, and to deem it so would require us to reckon the most altruistic individuals in history as flawed. 

... Maybe it's okay to "care too much." 

In my experience as a Multiple Sclerosis spouse caregiver, yes there is collateral damage to families, marriages, and relationships. Yet there is also positive personal changes, priority changes, and enhanced and unique family relationships. 
   Perhaps it’s best to paraphrase the master wordsmith, William Shakespeare: 
"Be not afraid of caregiving: some are born to care, some achieve caring, and most have caregiving thrust upon 'em."

Caregivingly Yours, Patrick Leer 

Plastic Dashboard Jesus / Sacred Heart Auto League

Interestingly my quest for plastic dashboard Jesus came to a successful conclusion ... arriving during Holy Week ...


Thank you Sacred Heart Auto League for making these commemorative statues available “of the figurine that graced countless dashboards throughout the 1950s and 1960s”.


Caregivingly Yours, J Patrick Leer 



non-caregiver musings:

Wednesday, March 19, 2008

Caregiving: Horton Hears A *&#!

“Involvement of the frontal lobes in the disease course might provide an explanation for the great numbers of psychological, behavioral, and personality symptoms that are manifested in MS.”

Hester-Louise Henderson, “Living with Multiple Sclerosis” University of South Africa 2005

Legally blind from Multiple Sclerosis Patti could not see me enter the activity room yesterday where crafts volunteers where working with residents and patients decorating foam crosses for Easter.

Patti was chatting and laughing at a table with four other residents and a volunteer.

Alerted by one of her more hawk eyed table mates, Patti exclaims (well actually loud enough for the entire room), “Thank God! These f#cking crosses are making me nuts!”

Grabbing a foam cross from the nearest stunned ‘artist’ I did my best improv casting out of the tongue demon ritual to the amusement of an audience suddenly finding excitement in an arts & crafts hour.

“The frontal lobes are very important in regulating our behaviour.  Whereas we might think something internally, our frontal lobes are able to ‘stop’ us from saying it. People with frontotemporal dementia in particular are unable to do this.  They fail to inhibit their innermost thoughts and do not modify their comments according to the situation.”

Cerebral Function Unit, Carer’s Support GroupSalford, UK

Then we were off to the movies, “Horton Hears A Who”. No matter what age you are, 90 minutes spent with Dr. Seuss is just plain fun.

Fortunately we made it all the way through without disruption from MS dysphagia and related choking in spite of buttered popcorn, Junior Mints, and sodas.

Trying to engage Patti in a “what did you think about the movie?” conversation afterwards I offered – maybe it was a parable about compassionate Republican government (the elephant) protecting individual rights (the Who’s) against the thought police Democrats. (Hey now! That’s topical, and atypical.)

Patti stares at me and responds, “It was about a f#cking elephant.”

<SIGH> Obviously the casting out of the tongue demon failed. I have got to work on that.

Caregivingly Yours, J Patrick Leer 

Tuesday, March 18, 2008

Caregiving: economic problems = bad news for pets

“People will come overnight or during closed hours and tie them (pets) up outside in hopes we'll find them the next day or they'll abandoned them on a nearby road." 


The East Shore Humane Society of Harrisburg, PA is seeing first hand the trickle down impact of the healthcare crises and mortgage meltdown. No government economists, politicians, or talking heads are needed to translate.


“Bankruptcy to unexpected medical issues, force families to make that tough decision,” claims Kelly Hitz.


During my spouse caregiver time with Patti last night we watched CBS 21 WHP evening news and learned that with 200 dogs and 200 cats, the East Shore Humane Society is operating at full capacity. Many of the animals are there by owner surrender.


A Google search revealed this is not an isolated problem to Harrisburg.


As families are fighting to stay ahead of the healthcare crises and mortgage meltdown, family pets are at risk of loosing ‘their homes’.


Dr. Shawn Crawford, a veterinarian in Camp Hill raised concerns over owners skipping vaccinations and other preventative care when money is tight. -- especially when it comes to once rampant diseases like parvo and lime disease.


Sometimes looking at what may seem abstract problems to many such as a healthcare crises or a mortgage crises from a different or unique perspective can help to understand the need for urgency in caregiving as a society before it is people skipping vaccines and people being abandoned.


Caregivingly Yours, J Patrick Leer 



non-caregiver musings:

Monday, March 17, 2008

Caregiving: Health Care Proposals Presidential Candidates

Pennsylvania is a “purple state” claims the television talking head. This he explains is in contrast to the traditional and dependable red and blue states on the political map. All I can envision are Barney herds frolicking across the State.


Pennsylvania has been invaded by politicians, media, pollsters, pundits and a cast of thousands. 


While the Democratic Party appears to be racing toward a political reenactment of Gettysburg, I wonder about healthcare reform.


Yes, as a spouse caregiver and parent my priorities are possibily different. Affordable health care? Long term care? Chronic Disease Management (Multiple Sclerosis)? Caregiving? What about healthcare reform? 

Over the last week I have spent too much time trying to actually read candidate positions on healthcare. In my opinion the candidates with the best proposals AND most experience with both success and failure trying to implement change in health care actually have left the field: Tommy Thompson (Republican), US Secretary of Health and Human Services & Wisconsin Governor; and Tom Vilsack (Democrat), Iowa Governor.


Googling around I found the most interesting and convenient tool. Created by the Henry J Kaiser Family Foundation, easily allows you to sit, click and compare the remaining candidates’ health care positions and proposals, without having to sift through all the mudslinging.


Just click on the picture below to launch


Will I endorse a candidate? With one Republican, one Independent, and one Democrat in this household we believe strongly in “choice”! <grin>


I would encourage everyone to actually read this easy to use overview of your remaining choices for healthcare reform. Discover who is actually talking about what makes sense to you and yours.

Caregivingly Yours, J Patrick Leer



non-caregiver musings:

Sunday, March 16, 2008

Spouse Caregiver: Is it 'The Vow' or 'To Care'?


Washington Post writer Liza Mundy’s 7,500 word feature (novella?)

                       “The Vow

(In 35 words or less <grin>) The story of Dave Kendall a spouse caregiver of 7 years and Diane diagnosed with Huntington’s disease is blended with caregiving information from the Well Spouse Association, a medical ethicist, and even a disability attorney.


I empathize and thank the Kendall’s for sharing their story.


Some points I want to asterisk … Why? Because “everyone will one day know or love someone who can no longer take care of themselves,”  Maggie Strong. And it is important to remember there are no cookie cutter answers for caregiving, each story will be different.


Marital Vows ***


“When Dave Kendall promised to love Diana 'in sickness and in health,' he meant it …”


*   When Patti and I were married 22 years ago, promises of ‘in sickness and in health’ WERE NOT part of our wedding vows.


*   Yet here I am a spouse caregiver 18 years after Multiple Sclerosis left Patti dependent.


I sometimes wonder if “marital vows” could become a rhetorical ‘straw man’. Shouldn’t the focus be CARE not promises?


Every family situation is unique ***


*   The Kendall’s were married for 20 healthy years and raised their child to adulthood before Huntington's disease changed their world.


*   Patti and I were married only 4 years before Multiple Sclerosis left Patti dependent and me to juggle both life as a spouse caregiver and single parent to our then 18 month daughter. We have known a caregiving relationship almost 5X longer than as a well couple.


*   What about parent caregivers of special needs children? Here is caring that will not only change families every day for the rest of their lives but transcend life times.


I have found that spouse caregiving is about a stoic indifference to your own existence. Not about what ‘you’ had in mind for ‘your’ life.


Health is not guaranteed. Yet how many families live on the fragile assumption of health?


Suffer us not to mock ourselves with falsehood

Teach us to care and not to care

Ash Wednesday, T. S. Eliot


Caregivingly Yours, J Patrick Leer



non-caregiver musings:

Saturday, March 15, 2008

Caregiving: A DAY IN THE LIFE / MS Awareness Spouse Caregiver

A DAY IN THE LIFE - March is MS Awareness Month


50+ degrees and sunny is one thing when you are a walking person. It is quite another when Multiple Sclerosis has left you unable to walk. 


Fortunately there is Home Depot!!! Scootering through a store the size of a city block with both indoor and an outdoor garden section is ideal. With aisles big enough for their fork lifts, they are perfect for Patti’s visual impairment. Plus Home Depot has cool scooters with beeping sounds in reverse and happening orange lights. <grin>


In another part of town, MS Awareness ‘must’ be working …


Mechanicsburg woman stole multiple sclerosis money, police say


“A video camera caught a Mechanicsburg woman stealing money intended for charity last week, according to Silver Spring Township police.


The money was part of a fund raiser Giant Foods was conducting for multiple sclerosis”


After dinner I was reading Patti stories from the local paper and then a headline from the “MS Connection” entitled “What Will You Do? Join the movement during MS Awareness Week” … Patti interrupted, “Who the hell cares, I don’t even like ABC!” “I just want to go to bed.”


Personally I do not have the foggiest idea how ABC is associated with the headline but with fatigue Patti’s Multiple Sclerosis symptoms of cognitive impairment accelerate.


A little creative use of available resources can empower though transferring does take brute strength. ... Theft of charity may be a better indicator of economic times than government economists. ... Time whether preparing and serving a meal or just reading to someone who cannot is caring. ... Fatigue is the trump card.


All in all a couple hours in a day in the life of MS Awareness and spouse caregiving.


Caregivingly Yours, J Patrick Leer

non-caregiver musings:

Thursday, March 13, 2008

(the new) New York Governor David Paterson

From today’s press conference in response to a reporter’s question on becoming the state’s first black governor and its first legally blind one: 


“In some ways I feel that I’m sitting on a sand castle that other people built … if it in any way allows for African-Americans or those who are disabled – 71 percent of the blind are unemployed, 90 percent of deaf people in this country are unemployed. Maybe one of them could figure out a cure for cancer, but we can’t get them into the workplace. The educational proficiency of the disabled surpasses the national education average, and yet we have these horrible unemployment rates in those communities. So to whatever extent my presence impresses upon employers, or impresses upon younger people who are like me in either way … – then I would feel very privileged, very proud and very flattered to be in this position.”


(the new) New York Governor David Paterson



Caregivingly Yours, J Patrick Leer

non-caregiver musings:


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.”



“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 …”



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

non-caregiver musings:

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
non-caregiver musings:

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

non-caregiver musings:

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