Wednesday, April 18, 2012

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care facility transition

My firstmorning after surgery coincided to the day with Patti’s admittance to a care facilityyears earlier.

Howafter 22 years of spouse caregiving had I missed this extraordinary ‘coincidence’?

Whatwould happen to Patti should anything happen to me as her spouse caregiver? –was among our concerns as the dawn of the care facility era approached after 15years of homecare.

Knowingwhat we know now and because of the care facility era, the answer is … Pattiwas worry free, stress free, safe and seamlessly cared for throughout mydiagnosis, surgery, and recovery.

Thisblog was originally created to share that transitional year for Patti’s family,friends, and anyone that may one day journey down the same path.
Backthen as one entry shares an Internet search found only 3 caregiving journalsand 3 Multiple Sclerosis blogs. Cyberspace is a different universe these days.

Anywayblogs remain difficult to read in retrospect because you have to read thembackwards. So as I found myself rereading that transitional year whilerecovering, I reorganized the entries in chronological order.

Forconvenience, I have posted them as a permanent page with the tab ‘care facility transition’ at the top of this journal.

Thoseentries remain a real diary of one family’s transitional year to the carefacility era after 15 years of homecare for Multiple Sclerosis. 

Caregivingly Yours, Patrick Leer 

Monday, April 16, 2012

Long-Term Care Insurance Reform

“I wannabe on the cover of Forbes magazine
Smilingnext to Oprah and the Queen”
‘Billionaire’by Travie McCoy

WhenForbes Magazine turns its capitalist focused eye on Long Term Care reform it isworth noting.

“Why notmake insurance for long-term care services and supports part of health carecoverage?
It is aradical idea that turns the current model—which often treats long-term careinsurance as an element of retirement planning—entirely on its head…”
“We have to try something new” concludes the article.

It’s been thousands of years of mythology plus thousands of yearsof knowledge since ol’ Oedipus solved the Riddle of the Sphinx, ‘What walks onfour legs in the morning, two legs at noon, and three legs at night?’ Yet howmany of us deny daily our own aging and eventual need for care.

Only a third of all adults say they have even talked with family ora friend about providing care to them in the future or had purchased disabilityincome insurance or looked into independent or assisted living arrangements orpurchased long-term care insurance.

Only 4 in 10 adults have set aside funds to cover additionalexpenses or signed a living will or healthcare power of attorney.

How many can even afford such options?

As a result … family caregivers provide about 80 percent of alllong-term care services in the U.S; an estimated 120 million adult Americans(57 percent) are either providing unpaid care to an adult family member orfriend or have provided this care in the past.

When the baby boomer generation starts walking on three legs, howlong before this house of cards comes crashing down?

Yes! We need to try something new!

Saturday, April 7, 2012

lung surgery recovery

"He whoknows when he can fight and when he cannot, will be victorious.” 
Sun Tzu,‘The Art of War’
At thetheoretical half way point of recovery from lung surgery, the word itselfremains somewhat alien after decades of spouse caregiving for MultipleSclerosis.

Me feelinga little better each day is strange, almost guilty, contrasted to decades of MScaregiving where ‘progress’ is measured in slowing decline.

Though afterthree weeks not every lesson learned is a quandary. Foolishly trying to be ‘muymacho’ I kept the pain meds in the bottle - until the first time I coughed oraccidently rolled over on my surgical side while sleeping, then I grabbed thatOxycontin like a baby grabs its bottle. … Though unlike a chronic illness, hourby hour it does get better. Yesterday, I only took two (2) ibuprofen.

For me, mainly it’s my ribs that were retracted for surgery thatache and ribs take time.

Essentiallyrecovery is about not stressing my incisions. I have lifting restrictions. Mysurgeon’s anecdotes of repairing lung hernias for those who do not listen were deterrentenough for me. Not lifting more than 5 lbs - also means no pulling, no pushing,no sliding, etc of anything over 5 lbs for six weeks.

While Ido not need assistance with my activities of daily living, our adult daughterhas been a godsend for grocery shopping, lawn mowing, etc. even things I neverforesaw such as lifting the weights weekly on our grandfather clock.

Exercisingand strengthening lungs ... When Iwoke up after surgery I was handed my very own Voldyne 5000! Actually it’srather fun once you get the hang of it, inhaling steadily to try and keep thebobber suspended in the “best” range.

Walking is unrestricted. I’ve currently built up walking to a miletwice daily, stretching it each day. Pre-surgery I walked two miles most daysof the week.  

I must confess that in our parallel universe I have found ithelpful in my healing that Patti’s outings from her care facility, now madepossible by our daughter, have only fallen off about one day a week during myrecovery.

Caregivingly Yours, Patrick Leer 

related entries:

when caregivers get sick - lung cancer Mar 24

Friday, April 6, 2012

Tiger Woods vs Multiple Sclerosis Caregiver

The challengesof living with Multiple Sclerosis and the PR maxim that any publicity is goodpublicity are certainly getting a trial by fire this week.

     “… There is a part of me, a big part ofme, that will be rooting against Tiger Woods
     In fact, there is a part of me that hopesTiger Woods never wins another golf tournament.     He is not a good person, and I’m sorry, Isimply cannot root for athletes who treat those around them like garbage…”
     “…Tiger Woods' half-siblings say theircalls for help from the golf superstar have fallen on deaf ears.     Woods' older half-sibling Kevin Woods hasbeen battling multiple sclerosis and is now confined to a wheelchair. He needsa caretaker and is in danger of losing his San Jose home…”
   "We haven't asked Tiger for adime," says Earl Jr., who lives in Phoenix. "Not even tickets to atournament. But Kevin's losing his home. He needs a caregiver and he can't havea caregiver and keep his home at the same time.   A spokesman for Tiger said that he'spreparing for the Masters and wouldn't be returning my call to talk about it..”
While UScelebrity and sports driven media feeds on the larger than life story involvedin the Woods brothers dealing or not dealing with MS as an extended family, Ifor one wish that the families and friends of the other 400,000 Americans and2.5 million people worldwide diagnosed with MS take the time to look in themirror.

Caregivingly Yours, Patrick Leer 

Monday, April 2, 2012

empathy and caregiving

“You never really know a man until you understand things from hispoint of view, until you climb into his skin and walk around in it.” … HarperLee, ‘To Kill a Mockingbird’

As I sat on the bathroom floor from my first and only fall duringrecovery (and with only my pride injured), I could hear echoes of my own voice asking Patti … “why are you stilltrying to do things you can no longer do?”

Recovering from surgery has been eye opening. Through a quartercentury of caregiving for Patti’s Multiple Sclerosis and physical decline, I’venever experienced physical compromise myself.

Yes, my pain and challenges are only temporary and in less than amonth will be gone but daily I find myself feeling staggered by the seeminglyendless ripples of change.

Even riding in our car or our wheelchair accessible van as a passenger is so rough on my ribs it feels more like a roller coaster. Shoulderharnesses may be safe but not ‘kind’ to ribs healing from being spread apartfor lung cancer surgery. Thank goodness for faux-down vests, the next best thing tobubble wrapping yourself. J

Seeing, dealing with, and adapting to physical change from thecaregiver’s perspective is incomparable to living it. 

Caregivingly Yours, Patrick Leer