“You’re cane looks stupid!”

Breezy, partly sunny and 74˚F (23.3˚C) … it was not only a perfect Multiple Sclerosis afternoon but my first chance to push Patti’s wheelchair since chemotherapy for my lung cancer began 8 weeks ago

After a couple blocks I yielded to Megan and walking next to Patti she notices my cane …

Patti: “You’re cane looks stupid!”

Patrick: “My cane looks stupid? … This from someone in a wheelchair … isn't that somewhat like the pot calling the kettle black” 

The banter of laughter is a wonderful aperitif before dinner at Helena’s Chocolate Café & Crêperie in Carlisle, PA 

Patti and Megan split a 'Nutella and Strawberry Crepe', I ‘chemo sampled’ a Breakfast Crepe featuring egg, ham and gruyère cheese 

…‘chemo sampled’ meaning I ate about half because of chemo suppressed appetite … I have learned to order foods that can easily be reheated at home as often appetite returns … or in this case I hope for ‘breakfast’ tomorrow.

Washed down by Nantucket Nectars Lemonade, we finished by splitting a fruit (blueberry, raspberry, and kiwi) tort. 

Admittedly the assistive devices seem to be multiplying and since chemo Megan has taken over the assisted feeding of Patti ... 

We have been living with Multiple Sclerosis as a family for 24 years … since chemo we push, roll, and now limp forward ... making the time for the banter of playful laughter ... We Are Family!!!

-
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

a life sequestered: spousal caregiving

“From the forest and wilderness come the tonics and barks which brace mankind. ” 
Henry David Thoreau

With my 1 year anniversary of lung cancer surgery two weeks ahead, I found myself glancing back a year to the Caregivingly Yours entries written a year ago while I was still concealing my diagnosis, alone, afraid and writing to leave a voice behind.

The day before I died on March 1st, 2012 or flatlined during an EBUS biopsy I made sure I posted an entry entitled deafening silence of Multiple Sclerosis awareness.

Hospitalized overnight in the cardiac unit I was sent home to rest before a cardiac stress test to determine if my heart could withstand lung surgery. The day after that test I posted UNLESS someone like you cares - wheelchair accessibility.

Sooo Saturday Mar 2^nd 2013 seemed like an ideal day for a kind of 1 yr anniversary Super 5K walk with my daughter around Wildwood Lake. I say super 5K because the main park loop is 3.1 mile or 5 K but we opted to add in the majority of side trails.

Struggling with an acute health issue of my own this past month it seemed homeopathic to inhale “the tonics and barks that brace mankind”.

Most people might never see Multiple Sclerosis because the general population has <1% chance of having MS … Additionally, of those diagnosed with MS the majority may have symptoms “invisible” to strangers. 

That Ann Romney and Patti share the same diagnosis appears inconceivable. 

Our daughter always remarks how whenever she brings up that her Mom has MS, she always hears someone say that they have an aunt or know someone with MS who is "just fine".

As our society learns a new word, and I paraphrase Mr. Rogers, “can you say sequestered?”.  Few have any idea how much living with severe MS as a family for 23+ years has been a life sequestered.

While mainstream media may be biased, social media on the other hand is misleading because it portrays only the story of those able to post on line. Unless a caregiver continues to share the story, people like Patti with severe MS disappear unable to write or even remember their life.

Ironically it was also Theodor Seuss Geisel’s (Dr. Seuss) birthday and I found myself smiling as surrounded by trees I could hear the echoes of both the Lorax and my post flatined entry

"UNLESS someone like you cares a whole awful lot,

nothing's going to get better: it's not."

“The Lorax” by Dr. Seuss

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

Care cannot be found in a Hallmark store

Writing on Patti’s wall calendar after an outing last night still has that freshness of well ... the first week of the year. J

While in the other universe of my personal day planner I have spent the better part of the first three working days of the year on the phone, on hold, faxing or waiting for call backs regarding health insurance. Long story made short at one point or another we have ranged from no health insurance through two health and prescription plans and cards each … to eureka! the way it’s supposed to be.

Once I calculated that I had spent over 1,000 “billable” hours on the phone, on hold, filling out forms, correcting billing errors, and so on related to Patti’s health insurance and prescription plan … and that was just the first year of the care facility era of Multiple Sclerosis - in the preceding homecare era, the luxury of actually keeping a record of time was impossible.

Back in those homecare years I was also somehow juggling basically single parenting our daughter. Ever been a soccer mom? PTA President? T-Ball Coach? Gone clothes shopping for a girl as a guy? Help with homework? Hug away tears? … Plus when MS knocks Mom out of the picture a Dad’s got to make the time to teach a daughter the intangibles of life like how to play in a waterfall and climb a mountain to pet a tadpole. …Forget day planners no parent can count those kind of hours.

The care facility era for our family began just a month before our daughter’s 16^th birthday and if you think the teenage years involve any less parenting time, you obviously have not raised a teenager.

This past year, if my life were fiction it could be criticized as ‘jumping the shark’ with my diagnosis of lung cancer. Unfortunately it’s not fiction though consequently dotting the i’s and crossing the t’s of lung cancer has taken more than a shark bite out of what non-existent time existed.

For most long term caregivers I know I’m preaching to the choir but for ‘others’ who measure success in life by tangibles, can you begin to see how quickly long term caregiving changes your life in both the now and tomorrow. This cumulative time has to come from somewhere in your life.

Care cannot be found in a Hallmark store, most days neither a “get well soon” card nor a “sympathy” card will do. It’s all about the time you make. 

“And in the end … The love you take … Is equal to the love you make.” (The Beatles)

Patrick Leer

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

Multiple Sclerosis Caregivers 2012

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:

Multiple Sclerosis Caregivers March 2012

Conducted by National Alliance for Caregiving, National Multiple Sclerosis Society, Southeastern Institute of Research and supported by Sanofi US.

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 

videos: www.youtube.com/daddyleer 

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 

videos: www.youtube.com/daddyleer

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.

Make Long-Term Care Insurance Part Of Health Care

“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!

when more than homecare is needed Multiple Sclerosis

From Multiple Sclerosis Foundation’s MS Focus Magazine, Winter 2012 (pages 43-45):

_____________________________________

pg 44

_____________________________________

pg 45

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

care facility cabin fever

“loneliness, helplessness and boredom are the three plagues of long-term care”  Eden Alternative

“Don seemed to me to be going downhill, and a couple of the staff also suggested that he was deteriorating. …Then the head nurse came up with a different theory and a different solution … Don’s got cabin fever, that’s all. … Here’s the thing. …  It only took a day or two, and Don was back to himself again.”  Multiple Sclerosis Carer: Stir Crazy

Recently I found myself in a similar situation with Patti and dinner. She was ‘reportedly’ finishing less of her meals and just wanted to go to bed. I began moving up my arrival time to be there to help with dinner. 

One such meal stands out. Arriving I saw Patti had finished her entre and overheard her yucking the aide’s offer of her fruit cup or potato soup and that she ‘just wanted to go to bed’.

Noticing the fruit cup was diced pears and peaches, two of Patti’s favorites – I rephrased the question ‘would you like some cut up pears and peaches’ with a totally different response. Of course, how could the aide know Patti’s favorites?

Soup is a function of temperature more than taste to Patti. Hot is not appealing. Hey we’re talking about cream of potato soup here. The cooler it gets, the more pretentious it becomes. Rolling out my best bad French accent, Patti enjoyed her ‘vichyssoise’ assisted by zee crazy french waiter.

Instead of another unfinished meal, there was not a crumb left nor did Patti 'just want to go to bed'.

“… increased family involvement is positive and leads to quality of life and quality of care for residents…” National Institutes of Health Family Involvement in Residential Long-Term Care

If the testimonials of two Multiple Sclerosis spouse caregivers, a long term care non-profit, and NIH is not enough - then consider that even circling sharks pause to stress the importance of family involvement. Boston nursing home abuse attorney Bernard J. Hamill, “ensuring safe care is continued family involvement. There is really no substitute for this.”

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Was long term care insurance a CLASS act?

As a society, I am convinced that we cannot even grasp much less be prepared for the crushing cost of long-term care.

Is money the only definition of cost? Families are changed forever, what about the lives lived and not lived?

How did we even get to this insurmountable gap between medical science and quality of life?

On Friday the Obama administration informed Congress that offering long term care insurance as part of Health Care reform was not “budget neutral” and therefor unsustainable.

Secretary Sebelius’ Letter to Congress about CLASS (Community Living Assistance Services) and attached Health and Human Services Report.

Of course with the gnat like attention span of our society, this story barely made it out of a 24 hr news cycle.

The ‘unsustainability’ of the Community Living Assistance Services Act is not a solution. The challenge of long term care is not going away.

Here’s the bottom line - EVERYONE will one day know or love someone who can no longer care for themselves …

… and we do not have a clue how we will do it.  

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

a special providence in caregiving

Would it surprise you to know that the “golden years” are nothing more or less than a catch phrase of an investment firm advertising campaign from the 1950s, no more real than “finger-lickin’ good” or “where’s the beef?”

Long, healthy, and productive lives? “The U.S. ranks last overall with poor scores on all three indicators …” How the Performance of the U.S. Health Care System Compares Internationally

“Roughly 12 million Americans of all ages need long-term supports and services because of disabling conditions--for example, multiple sclerosis, dementia, Parkinson's disease, or the effects of stroke. These conditions hinder people's ability to perform a range of "activities of daily living," including basic personal hygiene and grooming, dressing and undressing, feeding themselves, getting in and out of bed, going to the bathroom, and walking or using a wheelchair.

About two-thirds of today's 65-year-olds are expected to need long-term services and supports to help them carry out these tasks at some point during their lives.” "Health Policy Brief: The CLASS Act," Health Affairs, May 12, 2011

To paraphrase Shakespeare, “There is a special providence in caregiving or needing care. If it be now, 'tis not to come; if it be not to come, it will be now; if it be not now, yet it will come—the readiness is all.”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

driving through the shadow of death

Paperwork is more than a job when you are a long term caregiver. As paperwork is more than a job for the bureaucracy of facilities and organizations involved in long term care.

Someone got a creative and efficient idea in their head for these economic times and decided to try assigning long term care renewal paperwork to the more underpopulated and theroretically less overworked offices.  

I have no problem with creative efficiency in bureaucracy. Overworked is only a proven formula for mistakes.  

I embrace new ways with guarded optimism. There is a part of me that can never quite shake a conspiracy theory that jumping through all the hoops, dotting all the i’s and crossing all the t’s are some kind of litmus test rather than need.  

With all that being said and discovering the newly assigned office had neither email nor voice mail, I was not about to entrust the renewal paperwork to the mail.

And so I headed out on what became an over three hour round trip drive through mountains and up and down others.

Let me tell you - there is nothing quite like driving through the ‘shadow of death’ not once but twice…

Forget my original concern about email and voice mail,  I began to wonder if there were even cars …

Maybe I'm just a tourist at heart, but a tractor parked on top of a boulder in the middle of nowhere - now, that's a photo opportunity ... 

Yet most amazing of all when I delivered the paperwork - the clerk said “thank you”. I am still trying to remember when, if ever, anyone has ever said ‘thank you’ when I handed them a batch of paperwork.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

Are you ready?

Rapture! Armageddon! Trumpet out from between headlines of news and scandals du jour as life as we know it is predicted to change this Saturday, May 21.

Yet for caregiving, this is an opportune ‘teaching moment’ – when some one is dependent on you, are you ready to not be there?

It does not take prophesy, over half of car accidents occur within 5 miles of your home.

What would happen if you died or where unable to communicate? How long would it take before anyone even realized there was someone dependent on you?

How many people realize that even the simplest cell phone has an ICE contact (In Case of Emergency) and often associated pages for text and/or voice information. Your cell phone can speak for you even when you cannot.

Immortality by necessity is understandable when caring for someone, yet the reality is the opposite. Caregiving reduces life expectancy. Again, are you ready?

Wills, general and medical powers of attorney are they safely filed and easily accessible? More importantly is your successor already named in the documents? And does that person know where they are and have access to them, or a copy?

Most importantly are care plan and prescriptions written and recorded each and every time? When were they last given? Or are you again assuming you will always be there. Shouldn’t care be more about plans and less about assumptions?

Hey, I totally understand caregiving can be time paralyzing. Just getting through the day is reason to pat yourself on the back. Getting ‘transition’ together and keeping it together is more than a task.

Yet just imagine for a moment how unbelievably overwhelming it would be for anyone to have to step in when delusional immortality was your best plan.

Are you ready?

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer