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 

Wednesday, March 28, 2012

from caregiving to survivorship

 “O Lord,Bless the surgeon’s hand. Comfort all who wait for news.”
Though ‘all who wait’ was still only ourdaughter, we were committed to our conspiracy of silence until after surgery. Theevening before was spent as any caregiving evening as an outing with Pattiunaware of either diagnosis or pending surgery.

Finally it was time to attack the cancer. Inalmost 4 hrs of surgery I behaved myself under anesthesia and surgeon performeda wide wedge resection of the lung lobe removing cancer and surrounding tissue,spreading the ribs, and going into the lung lobe to get the lymph nodes.

Awakening in ICU, I actually felt great – nopain at all! “It’s the epidural” explained my nurse.

My epidural was my BFF for two more days ofpain free recovery. My only previous association with epidural was Patti’s birthof Megan but I have no problem endorsing, ‘real men get an epidural’. I waseven able to walk around ICU within an hour of awakening.

On the third morning (first without epiduraland I felt like I had been run over by a truck) and St. Patrick’s Day morn’surgeon stopped by to say good bye, he was sending me home and by the waybiopsies were back – all the lymph nodes and surrounding tissue from wedgetested negative for cancer. Yabadabadoo!

Rays of Hope, is a tribute to Karen Bennett's aunt Ruth, who kept hope alive while watching, caring for, and losing her husband and only child to cancer. 2012 Expressions of Hope Calendar March
3 and a half days earlier I had transferedPatti from her wheelchair to her bed and wished her good night a MS spousecaregiver (maybe a quarter million of us) now I walked out defined by ‘surviorship’,one of more than 10 million cancer survivors in the United States.

Though honestly, most important to me was thatI was able to complete all my ‘activities of daily living’ by myself whilerecovering at home for the next month and should be back to full abilities then.

Yes I have some restrictions on lifting for nowbut thankfully our daughter is at home.  

Steppinginto the void, she had picked up Patti from her care facility and had her homefor a family outing, one week to the day since our pre-surgery outing.

Previous related entries ...

when caregivers get sick - lung cancer  Mar 24

when caregivers get sick – do you glow?  Mar 25

Caregivingly Yours, Patrick Leer 
(PS The pictured painting "Rays of Hope" , is a tribute by Karen Bennett to her aunt Ruth, who kept hope alive while watching, caring for, and losing her husband and only child to cancer. 2012 Expressions of Hope Calendar, March)

Monday, March 26, 2012

when caregivers get sick – man plans, God laughs

“Man plans, God laughs.”
Yiddish proverb
An outpatient procedure, CT guided needle biopsy, was scheduled for the Monday morning after Super Bowl.

Informed I would need a ride home sinceconscious sedation was involved actually became a proverbial silver lining.

Sooo Super Bowl weekend I broke the news andthe truth to our daughter. I decide to stop trying to be my Dad and be me. Meganhas been at my side every step of the way even as a coconspirator in silence.

Outpatient pre-surgery famous last words #1 –“Less than 10% chance of anything going wrong” … well, 'I am the 10%' ending up witha collapsed lung (pneumothorax) and hospitalized overnight with a chest tubeinserted to inflate lung. Waiting to be discharged the next day I watched the lastsnow fall of the season from my room window.
Now a ‘we’, we learned the biopsy revealed thenodule was malignant and it was off to an Oncologist and Thoracic surgeon. Theyfelt a look and biopsy of lymph nodes would improve treatment options includingmaximizing surgery options.

Another outpatient procedure, an Endobronchial Ultrasound (EBUS) Biopsy of Lymph Nodes was scheduled for March 1.

Outpatient pre-surgery famous last words #2 -“Less than 1% chance of anything going wrong” - well, 'I am the 1%' asmy heart beat plummeted and stopped beating for 5 to 10 seconds during theprocedure.

Revived and admitted to the cardiac unit overnight andafter a thorough cardio work up I was released the next day and informed that1) I DID NOT have a heart attack and 2) my heart was in excellent condition. (‘Probablyin better shape than the surgical team you freaked out’, quipped onecardiologist.) … Best medical guess – vasovagal response.

After a night’s sleep at home I returned for anuclear cardiac stress test which I rocked and was cleared for lung surgery.

Unanswered – no heart beat for 10 seconds; do Iqualify for zombie status? Or was I just thrown back like an undersized fish? Sorry,no lights or tunnel to report, I slept through it all.

(to be continued … since its inception Caregivingly Yours entrieshave courteously not exceeded 350 words and my ribs ache from surgery just trying to get these out)

previous ...
when caregivers get sick - lung cancer  Mar 24

when caregivers get sick – do you glow?  Mar 25

continued ...

Caregivingly Yours, Patrick Leer 

Sunday, March 25, 2012

when caregivers get sick – do you glow?

"Families may be one accident, injury, ordiagnosis away from bankruptcy." U.S. Senator Sheldon Whitehouse (D-RI)
As EOB (explanation of benefits) statements beganto appear from ever more sophisticated and expensive tests I realized cancerwas going to be expensive even with medical insurance. Our family resources hadalready been swamped living with a quarter century of one major diagnosis,Multiple Sclerosis. Can any family survive two?

Blinded by MS tunnel vision I had never noticedhow many stories in newspapers recounted the collateral damage of cancer suchas a family hosting a fundraiser at a local church to try and raise $6,000 justto pay their yearly medical insurance deductibles for their son’s cancertreatment.

Why was I keeping it all to myself? - Almost 15years ago my Dad died of Pancreatic Cancer. He chose to keep it hidden as long as possible, dying less than a monthafter friends and family were told. Like father like son I originally chose tokeep it secret.

Keep in mind I physically felt great. Caregivingwas a comfortable masquerade focused on Patti. Glancing back at this blog fromthat time, I was writing about outings with Patti and even - exercise, fitness, caregiving for Multiple Sclerosis.

More importantly - what about Patti in the now,today?

Megan, our daughter, brought Patti home fromher care facility for dinner earlier this week. She had not seen me since ourouting the previous week before surgery. Though Patti’s parents had visited and‘broke the news’ the night before, Patti remembered nothing. In response toMegan telling her while driving she only asked "he's not dead?" andwhen I personally recapped the story again later, she focused on x-rays and radioactivescans, asking only "do you glow?" J

When questioned about me the next day, aftertwo days of memory reinforcement, she responded "I think he had lungsurgery".

I remember sharing Patti’s diagnosis ofMultiple Sclerosis, almost 27 years ago, surrounding her like a sentinel. Decadesof MS has robbed Patti of physical and mental abilities. Long term caregivers willhave no caregivers. That's just the way it is.
(to be continued … since its inception Caregivingly Yours entrieshave courteously not exceeded 350 words)
continued ...
when caregivers get sick – man plans, God laughs Mar 26

from caregiving to survivorship Mar 28

when caregivers get sick - lung cancer Mar 24

Caregivingly Yours, Patrick Leer 

Saturday, March 24, 2012

when caregivers get sick - lung cancer

"Talk by a poet who has not been in the moon is likely to be dull.”
Mark Twain
Like Twain’s spurious poet, I was guilty ofdully sharing the statistics of risk in long term caregiving.  Yes, the stress diminishes my immune systemand increases my chances of cancer and chronic illness. Yes, my life expectancywill be shorter and my mortality rate higher. After all I have been a spouse caregiverfor over 22 years.

No longer am I a dull poet of the risks in longterm caregiving -  three days beforeChristmas a chest X-ray revealed a ‘nodular density’ in my left lung.

Actually I was driving with Patti when my cellphone rang. Pulling over I tried to juggle a life altering conversation whileavoiding alerting much less alarming Patti. Shamefully I was grateful forPatti’s Multiple Sclerosis short term memory loss. Caregiving never reallygives you even a moment to focus on yourself.

At this point, sometimes a story is best told by taking a briefpeak at the last chapter first …

St. Patrick’s Day morning I was discharged from the hospital threedays after successful surgery for lung cancer. Now home recovering it’s time toshare because ‘my story’ is now part of ‘our story’.

Back to Dec 22 between holiday schedules andthe methodical plodding of medical testing it would be 27 days before I got tosit down and talk with a medical professional.

That ‘vague nodular density’ on an X-ray begatan 8mm ‘spiculated nodule’ on a CAT scan which begat an 8mm ‘irregular nodule,with an SUV max of less than 2.0’ on a PET scan. 

Feeling abandoned by the medical profession, theGrim Reaper moved into my head and became my new BFF. Of course I couldn’tsleep and the Reaper and I spent the holidays and the month of January surfingthe Internet with my copies of each test and radiologist’s impressions tryingto determine how long I had to live.

Simultaneously, I could not comprise oncaregiving for Patti. Concealing everything from everyone, I stole only themoments to pause and treasure each ‘last’ Christmas, ‘last New Years’, etc.

I began living two lives.
(to be continued … since its inception Caregivingly Yours entrieshave courteously not exceeded 350 words)

Sunday, March 18, 2012

Vicki's MS Gazette Debuts

Welcome to MS Education & Awareness Month. There is a new addition to my sidebar - Vicki's MS Gazette.

There is a headline with the beginning of an article, just enough to let you decide if you want to read this particular article. If the first one doesn't excite you, scroll down. You will see other headlines over short blurbs. Like one? Click to see the full text.

Vicki's MS Gazette collects news and stories from around all edges of the available social media.Enjoy.

Tuesday, March 13, 2012

“This chili is bangin’!” – MS and Speech

Every day is MS Awareness day in our story.

Enjoying some of my home made chili at home earlier this month,Patti blurts out “this chili is bangin’!” Laughing, I couldn’t help but wonderif ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of ushad ever introduced the slang into conventional dinner conversation. Is thisthe new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technicalentries our story of MS Speech for MS Awareness Week/Month is best told through trial and error memories we lived and laughed through to get here.

"a church moment" March, 2006
... Patti cannot always control speaking volume andthe more she tries the more opposite it can become
... “The frontal lobes are very important inregulating our behaviour. … People … fail to inhibit their innermost thoughtsand do not modify their comments according to the situation.” Cerebral FunctionUnit, Carer’s Support Group, Salford, UK
... In a recent study of MS patients, … 62% reportedspeech and voice impairments
... Cursing and swearing is different thanlanguage, activating the emotional centers in the right side of the brain,rather than the cerebral communication centers on the left.
... From the National Multiple Sclerosis Society“Speech disorders are fairly common in MS. Lesions—damaged areas—in differentparts of the brain can cause several types of changes in normal speechpatterns. …Long Pauses … Words are Slurred … Swallowing Problems …”
Regardlessof whether MS Speech is a disorder, an impairment, a symptom or whatever -after 22 years of spouse caregiving if Patti calls my chili bangin’, that’s acompliment in my book!

Caregivingly Yours, Patrick Leer