caregiving: Well Spouse Association

What about spouse caregiver support? 

 

Certainly a popular question … my mind’s knee jerk answer is always “who has the time?”

 

Oh I know the psychobabble experts claim we must take care of ourselves, and I even tell other spouse caregivers they must take care of themselves first before they can take care of anyone. A classic case of ‘Do as I say, not as I do’. <grin>

 

Personally I have only attended ONE spouse caregiver group and that was a thousand years ago. I cannot remember if it was one sponsored by the then fledgling Well Spouse Association or the local chapter of NMSS.

 

I sat there kind of dumbfounded and out of sync. Patti’s MS had hit so hard and progressed so fast I had zipped right pass other caregivers in attendance.

 

In my series of entries entitled Metaphysics of Caregiving I share about trying my own way over the last 18 and half years, a more Stoic path of indifference to my own existence to achieve balance.

 

Now, in this 21st Century, “Googling” ‘spouse caregiver support’ yields the Well Spouse Association.

 

Celebrating their 20th Anniversary, interestingly they evolved from Maggie Strong’s 1988 book “Mainstay: For the Well Spouses of the Chronically Ill”. Discovering this same book on our local library shelf became a benchmark of my earliest years as a spouse caregiver. Eventually I would even use a quote from “Mainstay” in my original journal entry to “Caregivingly Yours,” four years ago.

 

Their website is certainly worth a tour. For your convenience simply click the picture below.

                 

“WSA is the only national organization which focuses exclusivelyon long-term spousal caregivers whose spouse/partner may have any chronic illness and/or disability.”

 

Finding a ‘how to’ guide for caregiving in a group of caregivers is more elusive than finding the answer to ‘life, the universe, and everything’. (Except that thanks to Douglas Adams we know that answer is ‘42’. <grin>)

 

While answers may always elude us, trying is certainly what caregiving is about.

 

“The companionship, empathy, and shared information between one well spouse and another is unique.”

 

AMEN, to that!

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, Multiple Sclerosis, spouse caregiver, Well Spouse Association, Maggie Strong, Mainstay, Caregivingly Yours

caregiving: children's health care scorecard / Pennsylvania ranked 19th

“The first-ever state-by-state health system "scorecard" on children's health care finds wide differences across the country in the quality of care delivered, as well as disparities in access to services, insurance costs, and health outcomes.” Commonwealth Fund May 28, 2008

 

Click on the picture below to go to the Commonwealth Fund interactive US Map to check out your own State Scorecard and other States, if curious. 

                           

For example with a click on the interactive map I learned that Pennsylvania ranked 19th overall …  

                   

Numbers can be a wake up call. Is Pennsylvania's "better than most" acceptable? ... Certainly a shout out to #1 ranked Iowa! ... And I would not want to read this if living in bottom ranked Oklahoma.

"According to the report, millions more children would have insurance and adequate health care, and would avoid developmental delays, if all states performed as well as Iowa, Vermont, Maine, Massachusetts, and New Hampshire."

Ranking the States on Children's Health Care

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, children's health care, Commonwealth Fund, Pennsylvania

caregiving: an ArtsFest outing

Memorial Day Weekend anywhere near Harrisburg, PA simply has to include a visit to The Patriot-News ArtsFest along the Susquehanna River. From lawn art to fine art to performing art it is there for all.

With sunny skies and 82 degrees on Monday, Patti and I headed out for some fun and culture. While MS related memory loss seems to have erased Sunday's major choking episode, it is always important to move life forward.

 

Our favorite booth featured hand painted toilette seat lids and painted placemats for pet food dishes. I enjoy it when artists open new dimensions to me. Why should art hang on walls?

 

Art and artists are unquestionably intriguing but of limited attention for Patti and the crowds do become an obstacle for her Multiple Sclerosis symptoms and especially her scooter.

 

However, enjoying a Marlboro Light in the shade IS always enjoyable for Patti.

              

As spouse caregiver, scooter and crowd control does begin to wear but it goes with the job. And after all there are pluses …               

              

We sat with frozen lemonades in the shade under an old tree on the bank of the Susquehanna listening to a band playing nearby and just watching the river flow by. Add a  breeze blowing off the river across your face ... now THAT IS ART!

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, spouse caregiver, Multiple Sclerosis, ArtsFest, Harrisburg, Susquehanna River

Caregiving: dysphagia and choking

Dysphagia (dis-fey-juh, -jee-uh) derives from the Greek root dys meaning disordered, and phagia meaning "to eat". 

 

As I finished mowing my lawn Sunday afternoon I noticed my cell phone had a voice message from Patti’s care facility.

 

Checking in I learned that Patti had a near disastrous choking episode during lunch.

 

Patti’s level of MS progression changes the formula for the signs of choking, her physical and cognitive impairments from Multiple Sclerosis confound communication between brain and body to signal – HELP!

 

Cyanosis (turning blue) should be a warning sign you do not even want to see. Lack of oxygen in the blood is why the face is turning blue. Even MS cannot confound this biological last call for help.

 

Fortunately Patti was in the right place surrounded by professional medical help. A Heimlich maneuver was successful and she instantly began breathing on her own.

 

If anything she was probably over monitored for everything the next couple hours and continues to be monitored for aspiration pneumonia which can result if food or gastric particles were inhaled into the respitory tract.

 

In assisted dinning the ratio of staff to residents is at minimum 2 staff to 4 residents at every table. Additionally Patti’s food is literally ground up into tiny pieces.

 

Patti’s MS related dysphagia short circuits the brain’s communication to all the muscles involved in the physiology of swallowing. Because it is all about short circuiting she may eat just fine one moment and be choking the next.

 

Whether in a care facility or with family eating may be the most dangerous aspect of caregiving in Patti’s case. All the more challenging since meal time tends to be highly social and distractions compete with monitoring.

 

Picking Patti up later for an outing she was in fine spirits. MS memory loss and mental confusion I guess can have a silver lining when they serve to erase trauma.

 

Patti’s version … “My memory sucks, I just want a cigarette.”  

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, spouse caregiving, Multiple Sclerosis, MS, dysphagia, choking, care facility

caregiving: 'cadWeazle' powered beach wheelchair with solar roof

Caregivingly Yours videos on You Tube never cease to amaze me. This morning I received a video comment from a viewer in Kiel, Germany to my video Multiple Sclerosis & family: beach wheelchair

 

Marius shared the following 47 second video about a  Selbstfahrender Ballonradrollstuhl mit Solardach (powered beachwheelchair with solar roof).

“cadWeazle” on the shoreline in Den Haag, Netherlands (47 seconds)

                  

A ‘shout out’ to German engineering!

 

Even more intriguing to me as a spouse caregiver are their EuroTrak wheelchair customizations.

What extraordinary freedom of access to sand, water, snow, hiking trails, forests, and fields.

 

No need to transfer to a beach wheelchair with just a minute or two of time you simply convert your own wheelchair to an all terrain wheelchair. Switch back wheels to balloon tires attach front third wheel harness and off you go!

 

http://www.cadkat.com/BeachWheelChairs.html

 

Ich danke Ihnen ‘cadkat’!

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, spouse caregiver, wheelchair, beach wheelchair, Strandrollstühle, cadWeazle, EuroTrak, cadkat.com

Caregiving: MEDICAID - Custer's Last Stand of US Healthcare?

MEDICAID may well become the 'Custer's Last Stand' of our US healthcare system. In the future when time has faded the verbal alchemy propping up our current mess, any rational person will stare and wonder "What were they thinking?"

 

On one hand our collapsing US healthcare system is driving increasing numbers to medical assistance. While on the other hand those blessed with resources and abilities manipulate, perhaps even exploit, the system to protect ‘family’ assets.

         

Medical assistance should be about assisting people in financial need. Instead reality has become a mosaic of ethics.  Medicaid is not a ‘they’ or ‘them’. Medicaid is ‘we the people’, our tax dollars at work trying to patch a dam.

 

Families are increasingly facing impossible medical expenses especially when it comes to long term care. Currently about half of all people in care facilities are being funded by medical assistance, Medicaid.

 

They face REAL concerns, challenges, worries, and emotions above and beyond the economic devastation.

         

It has been 4 years since we went through the process and with increasing interest about this area I recently updated my website’s page (pictured above) entitled MEDICAID / CARE FACILITY ERA pulling together journal entries and information into one convenient location.

 

Googling ‘Medicaid application’ or ‘care facility’ will discover near infinite information. CaregivinglyYours.com simply tries to share through spouse caregiver eyes one family’s story and experiences.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, spouse caregiver, Multiple Sclerosis, Medicaid, care facility. long term care

Caregiving: newspaper and chicken pot pie

Caregiving is not always a physical function. Patti’s Multiple Sclerosis related visual impairment and cognitive, reasoning, and memory challenges require ever evolving attention.

 

Reading our local paper, The Sentinel, to her and discussing stories over dinner has become somewhat of a new tradition she enjoys.

 

Over chicken pot pie the other night we learned that …

 

Barclay asks school to take his name off auditorium

 

Now this stimulated Patti’s attention why would someone want their name taken off a building?

 

Patti’s memory loss had lost track of the month long saga of former Cumberland County Commissioner Bruce Barclay.  A State Police investigation had discovered hundreds of videotaped sexual encounters — many with male escorts — using hidden cameras and stored on his computers.

 

Our conversation detoured into talking about the poor State Police officers that must have to sit and 'review the evidence' watching hundred of hours of this guy having sex. It was hard not to laugh. Hi honey! What did you do at work today? Do you go home and wash your eyes out? "What a weirdo!" concluded Patti.

 

Neighborhood reacts to deer ruling

 

“The plan calls for the harvesting of up to 75 deer,  Police Chief Stephen Margeson explained, whose meat will be processed and then donated to local food banks.”

 

With two wrecked cars in two years from deer and thank God none of us hurt you will find NO love for suburban bambi in this house.

 

Patti connected all the dots in this story including remembering our family encounters and agreed stocking food banks with bambi made a lot of sense.

 

SUPERDELEGATE stories may as well be a regular feature. Having no idea what exactly a superdelegate is, it does however sound like something everyone would want to be. Patti offered a fascinating observation, "Superdelegates probably get to smoke at the convention and regular delegates can’t”.  Now you know. <grin>

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, Multiple Sclerosis, The Sentinel, Cumberland County

Caregiving: Frasier Robinson

Frasier Robinson declined from an agile boxer to a man who needed two canes to walk across the street. Living with Multiple Sclerosis as a family his children never knew him without his disabilities from Multiple Sclerosis. His ‘struggles’ even to get to work much less work everyday and hold a family together were what families must overcome every hour of every day of every week.

 

His daughter remarks, "I am constantly trying to make sure that I am making him proud -- what would my father think of the choices that I've made, how I've lived my life, what careers I chose, what man I married."

 

Frasier Robinson died in 1990. Fighting MS he did live to see the beginnings of how she chose to live her life such as colleges and start of a career.

 

While Frasier Robinson did not live to see his daughter’s marriage and family from what I have learned of the man I suspect he would be quite proud of his daughter Michelle, better known today as Michelle Obama.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: Multiple Sclerosis, Frasier Robinson, Michele Obama

Caregiving: Mother's Day & Multiple Sclerosis

Mother’s Day has always been uniquely affected by caregiving and living with Multiple Sclerosis as a family. 

 

MS visual impairment prevents even the traditional Mother's Day card from becoming part of our story.

 

This 2 minute+ "video card" from 1994 created by our then 6 yr old daughter captures Mother’s Day and living with Multiple Sclerosis as a family better than a mountain of words.

http://www.youtube.com/watch?v=L0sUNNhyH6o

Happy Mother's Day wishes to ALL!

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, Multiple Sclerosis, Mother's Day

Caregiving: Special Olympics

In the summer of 1968 Eunice Shriver welcomed the FIRST Special Olympics Games, which were held in Chicago's Soldier Field, with 1,000 athletes competing.

                        

Shriver also announced a new national program — Special Olympics — to offer people with intellectual disabilities everywhere “the chance to play, the chance to compete and the chance to grow.”

 

Special Olympics today is a global movement with 2.5 million athletes in more than 180 countries around the world.

 

Wednesday, 40 years later, it was my honor to be Master of Ceremonies and welcome the 2008 Prince George’s County Special Olympic Spring Games. This one regional event had nearly as many athletes as the original Special Olympics.

 

You cannot be involved in a Special Olympics event and not leave touched and inspired.

 

Competition alone is exciting beyond comprehension. Scooter and wheelchair races have as much intensity and more heart than any NASCAR race. Crowd noise for a 25 meter walk is deafening at field level. Most important cheers do not stop until the last competitor finishes.

 

Special Olympics draws you in and somehow makes you better. It is not all about the athletes. A Boy Scout attending one year noticed that wheelchair and assisted athletes could not mount the platform to receive medals. Single handedly and unrequested he designed and built ramped accessible award platforms so ALL athletes could know the thrill of “stepping up” or “rolling up” to receive their medals.

 

Watching the Star Spangled Banner be ‘signed’ by a class of special education elementary students may be the most beautiful version I have ever not heard.

 

Prior to each years games I am blessed to coach and practice with the athletes who will be speaking during opening ceremonies. Most athletes selected have never used a microphone and never spoken to more than a class. Public speaking in a stadium environment is daunting for most people.

 

When it is 'show time', I hand them the microphone and step back with a reassuring squeeze on the shoulder. One after another they absolutely nail their remarks and light up the world with smiles as applause cascades down the stadium seats engulfing them and empowering dreams.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: Special Olympics, Spring Games, Prince George's County

Caregiving: episodes and bystanders

I want to refer back an entry. “Op. cit.”, if I remember correctly from old college term paper days.

‘Aggressive episodes’ and or inappropriate behavior unquestionably affect caregiving and public outings.

Most important, an episode DOES NOT define a person anymore than a disease defines a person.

To not venture out is nuts. Isolation is counterproductive. People in need and caregivers are no more prone to be hermits than anyone else.

Oh yes! You may raise some eyebrows but what of it?

A stranger “interfering” is a genuine concern because unfamiliarity could accelerate an episode and people could get hurt.

My experience has been that you are more apt to draw stares and whispered asides than ever actual interference.

“Bystander apathy” is a psychological phenomenon in which someone is less likely to intervene when other people are present. In public settings there is a diffusion of responsibility.

I wish all outings could fit ‘appropriate’ standards of behavior. Most times it all fits like a glove. Some times well … it can be interesting to say the least.

Wednesday, while Patti finished her cigarette I parked her near a display of plants and pots. I stepped away from her for no more than seconds to look at a plant when I heard her say “Thank You”.

Turning back I watched her flick her ash and then drop her cigarette into a pot that a shopper had just placed next to Patti so the shopper could reach into her own purse. The shopper and attendant were both slack jawed.

I emptied the cigarette butt and ashes out of the pot, explained that Patti was legally blind from Multiple Sclerosis and offered it to the shopper. Who stepped back like I had put a snake in her pot. Patti in the meantime realizing what had happened collapsed in laughter.

Trying to laugh breathe and talk at the same time, Patti blurts out, “The world’s a f#@cked up place. You have to enjoy it. That’s my motto” … (pausing to look around and then into the suddenly notorious pot) … “What happened to my cigarette?”

Caregivingly Yours, J Patrick Leer 

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

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, caregiver, Multiple Sclerosis, legally blind, bystander apathy