Monday, April 30, 2012

island getaway

My eyes look the same, they just see differently.

“How long do I have to live?” to “How soon can I return to my normal daily life?” in less than four months has been an emotional and mental roller coaster ride that left the tracks long ago.

Back when I was first coping with ‘how long do I have to live?’ (but concealing lung cancer from everyone) I wrote an entry exercise, fitness, caregiving for Multiple Sclerosis in which I guestimated I had pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers) over the decades.

So with my successful surgery and recovery in the past tense and one test push under the belt it was time to add some mileage.

Patti and Patrick pictured along Susquehanna River onCity Island, Harrisburg, Pennsylvania
Under 68˚F (20°C) sunny skies we looped City Island in the Susquehanna River on Sunday for a mile plus (1.6+ km) outing. Originally planning on just using the level paved walking/biking path I soon was all terrain from my personal favorite concrete beach through water golf, scenic overlooks, picnic pavilions and docks.

Can anyone really push themself until they have pushed another?
Patrick Leer
Caregivingly Yours, MS Caregiver @

Friday, April 27, 2012

MS Caregiving - reframe your idea of normal

The most important message is that you may have to reframe your idea of normal,” 
Kimberly Koch, Vice President, Programs & Services, National MS Society

For the first time in over 22 years I was frankly speechless as I read the final paragraph of Multiple Sclerosis Caregivers 2012.
“…In summation, with the combination of the duration of care, the prevalence of mental confusion, and the high probability of long-term care placement, support to the family caregiver of someone with MS seems to rise to a critical level….Proactively reaching out to them with support will help, not only the caregivers, but the care recipients, and ultimately the country, as well.”
Someone somewhere finally gets it!

This is such a leap contrasted to decades of being told by MS organizations that less than a quarter of people diagnosed with MS will ever need a wheelchair that at the risk of hyperbole it may be comparable to the world is flat vs round.
More from National Alliance for Caregiving (NAIC) “Policy Implications of the Study”

"This study sheds new light on several new aspects of family caregiving for someone with MS. In particular:
• The long life cycle of the disease suggests that the total number of years one serves as a caregiver will be much, much longer than caregivers in general …
• Caregiving for someone with MS has a substantial negative impact on the family’s financial situation in 43% of the cases.
• The likelihood of the care recipient going into a long-term care facility within the next ten years was estimated at 40%—with the triggering event being the need for 24-hour care. 

Taken together, these issues create a rather compelling case for caregiver support at Federal, state, and local levels. The ten-year estimate of nursing home placement should be high enough to concern the Centers for Medicare and Medicaid Services (CMS)."

Caregivingly Yours, Patrick Leer 

Lung Cancer Surgery Recovery Update:

Returned to Planet Fitness on Wednesday, six weeks to the day after successful lung cancer surgery. Cleared by surgeon, I completed full circuit of strength training equipment at "girly man" resistance with no problems. Get to add 10 lbs per day. Awesome scar!  Working on my 'shark bite' stories for Jersey Shore surf this summer.

Returned to MS Caregiving on Thursday, taking Patti for an unassisted outing, driving our wheelchair van, picking Patti up at her care facility, pushing and pulling Patti in her wheelchair in and out of our van and all around Walmart. ... No, not the most exciting outing but we needed to replenish her preferred brand toiletries, etc. and Walmart is if anything 'level' and big.

Surgeon offered that while I may be able to rebuild to pre-surgery strength levels in gym in a week, it may take two weeks before I return to pre-surgery caregiving abilities as more muscle combinations are involved.

I behaved and did not attempt a 'one person unassisted transfer'. I am saving that for the finale in likely two weeks. 

Patrick Leer
Caregivingly Yours, MS Caregiver @
Lung Cancer Odyssey @

Tuesday, April 24, 2012

Multiple Sclerosis Caregivers 2012

results from national survey of Multiple Sclerosis caregivers
Last Fall MS caregivers throughout the US, including myself and readers of Caregivingly Yours, participated in a research study about Multiple Sclerosis caregiving.

The results of that study were published last month in a 62 page report available on line in PDF format at:

Block out some time, get yourself a cup of coffee (or favorite beverage) and discover statistically who we are, what we do and how we each stand in the new idea of normal. 

Caregivingly Yours, Patrick Leer 

Wednesday, April 18, 2012

transition to care facility

My first morning after surgery coincided to the day with Patti’s admittance to a care facility years earlier.

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

What would 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 15 years of homecare.

Knowing what we know now and because of the care facility era, the answer is … Patti was worry free, stress free, safe and seamlessly cared for throughout my diagnosis, surgery, and recovery.

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

Anyway blogs remain difficult to read in retrospect because you have to read them backwards. So as I found myself rereading that transitional year while recovering, I reorganized the entries in chronological order.

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

Those entries remain a real diary of one family’s transitional year to the care facility era after 15 years of homecare for Multiple Sclerosis. 

Caregivingly Yours, Patrick Leer 

Monday, April 16, 2012

Long-Term Care Insurance Reform

“I wanna be on the cover of Forbes magazine
Smiling next to Oprah and the Queen”
‘Billionaire’ by Travie McCoy

When Forbes Magazine turns its capitalist focused eye on Long Term Care reform it is worth noting.

“Why not make insurance for long-term care services and supports part of health care coverage?
It is a radical idea that turns the current model—which often treats long-term care insurance 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 years of knowledge since ol’ Oedipus solved the Riddle of the Sphinx, ‘What walks on four legs in the morning, two legs at noon, and three legs at night?’ Yet how many 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 or a friend about providing care to them in the future or had purchased disability income insurance or looked into independent or assisted living arrangements or purchased long-term care insurance.

Only 4 in 10 adults have set aside funds to cover additional expenses 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 all long-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 or friend or have provided this care in the past.

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

Yes! We need to try something new!

Saturday, April 07, 2012

lung surgery recovery

"He who knows when he can fight and when he cannot, will be victorious.” 
Sun Tzu, ‘The Art of War’
At the theoretical half way point of recovery from lung surgery, the word itself remains somewhat alien after decades of spouse caregiving for Multiple Sclerosis.

Me feeling a little better each day is strange, almost guilty, contrasted to decades of MS caregiving where ‘progress’ is measured in slowing decline.

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

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

Essentially recovery is about not stressing my incisions. I have lifting restrictions. My surgeon’s anecdotes of repairing lung hernias for those who do not listen were deterrent enough 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 I do not need assistance with my activities of daily living, our adult daughter has been a godsend for grocery shopping, lawn mowing, etc. even things I never foresaw such as lifting the weights weekly on our grandfather clock.

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

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

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

related entries:

when caregivers get sick - lung cancer Mar 24

Patrick Leer
Caregivingly Yours, MS Caregiver @

Friday, April 06, 2012

Tiger Woods vs Multiple Sclerosis Caregiver

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

     “… There is a part of me, a big part of me, that will be rooting against Tiger Woods
     In fact, there is a part of me that hopes Tiger Woods never wins another golf tournament.     He is not a good person, and I’m sorry, I simply cannot root for athletes who treat those around them like garbage…”
     “…Tiger Woods' half-siblings say their calls for help from the golf superstar have fallen on deaf ears.     Woods' older half-sibling Kevin Woods has been battling multiple sclerosis and is now confined to a wheelchair. He needs a caretaker and is in danger of losing his San Jose home…”
   "We haven't asked Tiger for a dime," says Earl Jr., who lives in Phoenix. "Not even tickets to a tournament. But Kevin's losing his home. He needs a caregiver and he can't have a caregiver and keep his home at the same time.   A spokesman for Tiger said that he's preparing for the Masters and wouldn't be returning my call to talk about it..”
While US celebrity and sports driven media feeds on the larger than life story involved in the Woods brothers dealing or not dealing with MS as an extended family, I for one wish that the families and friends of the other 400,000 Americans and 2.5 million people worldwide diagnosed with MS take the time to look in the mirror.

Caregivingly Yours, Patrick Leer 

Monday, April 02, 2012

empathy and caregiving

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

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

Recovering from surgery has been eye opening. Through a quarter century of caregiving for Patti’s Multiple Sclerosis and physical decline, I’ve never experienced physical compromise myself.

Yes, my pain and challenges are only temporary and in less than a month will be gone but daily I find myself feeling staggered by the seemingly endless 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. Shoulder harnesses may be safe but not ‘kind’ to ribs healing from being spread apart for lung cancer surgery. Thank goodness for faux-down vests, the next best thing to bubble wrapping yourself. J

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

Caregivingly Yours, Patrick Leer 

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