caregiving: ch-ch-changes

“Ch-ch-ch-ch-Changes

(Turn and face the strain)

Ch-ch-Changes

Just gonna have to be a different man”

David Bowie “Changes”

 

A 40 yr old parent caregiver of a special needs child challenges himself against people half his age for a better job. Everything and anything to ‘provide’ for a family that will need more.

 

A 50+ yr old single parent caregiver of a special needs child prepares to uproot their lives and move 400+ miles for a chance for a better home.

 

“I watch the ripples change their size

... But still the days seem the same

 

Ch-ch-ch-ch-Changes

(Turn and face the strain)

Ch-ch-Changes

Pretty soon you're gonna get a little older”

 

A 70+ yr caregiver takes a respite trip, suffers a seizure … diagnosis brain cancer. At home wait a 90+ yr old Mom, and a spouse challenged with diabetes and more.

 

An 80+ yr old caregiver fighting against all odds to keep her spouse with Alzheimer’s at home in spite of her own emphysema now fights her own diagnosis of lung cancer.

 

“Time may change me

But I can't trace time”

 

All four of these caregivers are real people, in fact family, an in-law, and a close friend. Father’s Day 2008 involved contact or conversations. 11 years ago on Father’s Day weekend, my own father died of pancreatic cancer after almost 10 years as my Mother’s caregiver. This is my 18th Father's Day juggling the hats of basically single parent and MS spouse caregiver. 

 

In my world there just seems to be some caregiving vortex around Father’s Day. I am always left humbled and in awe.

 

“I said that time may change me

But I can't trace time”

 

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, caregiver, Father's Day

caregiving: drawing on walls

           

In spite of evolution it all still comes down to drawing on walls. An oversized monthly wall calendar (20" X 30") hanging in our kitchen has been a key to juggling spouse caregiving (Multiple Sclerosis) and basically single parenting through the last 18 and a half years.

 

Since the advent of the care facility era frankly it has become MORE critical.

 

Caregiving is about time. When home caregiving surrounds you it is time itself. In the 24/7 care facility stage it is soooo easy to let other responsibilities or even a breath of fresh air distract you.

 

“Self help” and “self organization” gurus might call this an organizational tool. For me, every time I walk into or out of the kitchen it prods, pushes, pesters, and haunts me to “look” at the time I have committed to outings or visits with Patti.

 

My goal has always been to have Patti home or take her for an outing and then later personally prepare and tuck her into bed at her care facility at least 4.5 evenings per week. There are weeks this can be as challenging is not more so than homecare used to be. These are the weeks my wall calendar seems to bark at me like some drill sergeant over my morning cup of coffee.

 

Bottom line is that it is all about making sure the care facility era does not become a time of drift, but rather the age of team work. You must stay in the fight.

 

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, wall calendar, care facility

caregiving: falling out of a wheelchair

Sitting in a wheelchair should have a certain safe and secure connotation. Patti on the other hand has a knack for falling right out of a wheelchair when unattended.

 

Sunday morning to the blare of a Dixieland band (my designated ring tone for incoming calls from Patti’s care facility) I was alerted to a fall by Patti.

 

Patti was discovered on the floor of her room less than 10 minutes after having been changed, dressed, and seated in her wheelchair in front of her TV. Her wheelchair was upright but across the room.

 

Patti could offer no clue as to how she ended up on the floor.

 

Patti had no complaints of pain or injury and an examination revealed only a bad bruise on one knee.

 

Why the fall? That answer is part MS related symptoms of ataxia, mental confusion and part mystery since this only happens when unattended. Patti’s MS short term memory loss erases the only eye witness report.

 

Ataxia (uh-tak-see-uh) = loss of the ability to coordinate muscular movement.

 

In an earlier entry, Is MS fatal? I referenced Patti’s neurologist warning us 20 years ago that falls and choking were the most ‘at risk’ threats to living with MS.

 

 

This has now been two falling episodes and one choking in just a couple weeks while in 24/7 attended care.

 

Previously it has been about a year since her last fall. Yet that is exactly what makes MS caregiving so tricky. Multiple Sclerosis is about the short circuiting of the brain’s communication with the body, therefore history or patterns are deceiving as formulas for treatment plans.

 

A conventional seat belt is useless on Patti. She constantly fidgets with the latch. When driving in our van I frequently have to stop to reattach her seat belt. Restraints are a possibility but always the last resort. 

 

When picking Patti up for our outing I asked her about her fall. She claimed she was fine, could not remember anything, and “what can I say, I’m a klutz.” 

 

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, wheelchair, ataxia, falling, care facility

caregiving: "Here's a cold truth ..."

I confess to jumping up and making noises more appropriate in a stadium than in front of a PC after reading the following article from the Washington Post by author Michael L. Millenson.

 

Want Universal Health Care?

The Operative Word Is 'Care.'

 

“ … Here's a cold truth: Despite much media hand-wringing on the subject, most of us give about as much thought to those who lack health coverage as we do to soybean subsidies. The major obstacle to change? Those of us with insurance simply don't care very much about those without it. …”

 

Specifically with Multiple Sclerosis, treatments in recent years involve maintenance medications. When Patti was trying Avonex for example the cash price would have been over $1,000 a month for 4 weekly injections. Far, far less when purchased through her prescription plan.

 

If you were uninsured or underinsured you were locked out of such a treatment option.

 

Or suppose you or your spouse’s health care prescription benefits change? Divorce, disability, unemployment or death can and will change your family medical benefits?

 

Whether patient or caregiver you may as well be playing Russian roulette with the economics of healthcare each and every day.

 

How do you continue expensive maintenance medication? Safety nets such as Medicare and Medicaid rarely cover the “designer” medications.

 

What if anything is known about the effects of abruptly having to abandon a treatment because your family health care situation changed?

 

"One paycheck from poverty/One illness or injury from misery," is this really the best we can do as a national heath care policy?

 

“… It has been nearly a century since Theodore Roosevelt, a Republican running unsuccessfully on the Bull Moose Party ticket, boldly became the first presidential candidate to promise universal health coverage. That was in 1912. Nearly a century later, we're still waiting for a leader …”

 

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, health care, Michael Millenson, Theodore Roosevelt

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