Multiple Sclerosis, Palliative Care, Hospice and Dying

Talking about difficult MS topics - Palliative Care, Hospice, and Dying from the National Multiple Sclerosis Society (2009).

"At whatever point during the disease course you find yourself caring for a person with MS … we feel certain they will benefit from the opening of this door to discussion at some point in their illness."

Talking about Palliative Care, Hospice, and Dying

Patrick Leer

Health Activist:

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

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

Memorial Day with a Civil War Veteran

For Memorial Day 2012 we decided to do something different - go quest for a veteran ancestor. Late last Fall I had played around with ancestry.com stalking dead ancestors with clicks of a computer mouse but now it was time to get real.

Patti’s paternal great-great grandfather, while unknown in her family oral history, still seemed from my research our most promising quest.

George R Decker (1833 – 1915) fought in the US Civil war with the 17th Pennsylvania Cavalry. A lifelong Pennsylvania farmer he fought through and survived three years of Calvary engagements in most of the battles of the Eastern campaign of the Civil War including Gettysburg.

I knew from his Civil War Veteran’s records that he was supposed to be buried in New Freedom Cemetery and after driving around the cemetery and then pushing and pulling Patti’s wheelchair through the tombstones and over many deceased, eureka! we found him .. and his wife, too.

We had brought along a picnic basket and bottles of ice water. ‘Real feel’ temps of 94˚F (34.4˚C) were not Multiple Sclerosis friendly but by frequently applying a frozen bottle of ice water to the back of Patti’s neck, it worked like her personal air conditioning … and our air conditioned wheelchair van was nearby if needed.

To our pleasant surprise and as if conjured up by some ‘Americana’ movie set to complete our picnic, a 'small town America' Memorial Day program was being set up in the cemetery. People soon began to walk by us carrying folding chairs and coolers, scouts had flags and flowers. A small local brass band began to play military songs through the years.  

Still hangin’ out with George and Lydia, soon we found ourselves laughing and singing along to snippets from songs such as “It’s a Grand Old Flag”.

As the band finished their tribute to the Civil War including both Battle Hymn of the Republic and Dixie it was a perfect time for us to say goodbye.

What more can you say to a guy who had actually been at Appomattox Courthouse when the Civil War ended … except thank you.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Return to normalcy

Wednesday, two months after successful lung cancer surgery, everything came back together for the first time. Our world returned to its normalcy.

In other words life is now just as it was before surgery, only 8 weeks later. I have no loss of abilities, restrictions, or pain.

Why should this benchmark start any different than any other caregiving day as I spent too many hours on the phone and on hold working and stressing as Patti’s POA on looming changes to Patti’s Medicare supplemental insurance?

With the cooler part of the day wasted it was time to mow the lawn, walking approximately a mile while pushing a 60 lb (27 kg) mulching power mower in 86˚F (30˚C) temps.

Next I drove to pick up Patti. Exiting her care facility assisted dining room she was quite sure her diner had been “bangin” but had no memory of what she had just eaten.

Heading out to a nearby park for a push and roll (a gentlemen never discusses a lady’s weight but let’s say Patti weighs more than a lawnmower) I pushed her for a one mile loop stopping for some hamming it up in their amphitheater, “all the world’s a stage”.

Then the pièce de résistance (insert drum roll)

… a one person unassisted transfer of Patti from her wheelchair to her bed, followed by undressing and changing her for sleep.

Unlike the miles of pushing, transferring is about lifting non-ambulatory weight. Even after transfer, while many people have changed and dressed an infant, a non-ambulatory adult is the exact same principal just exponentially more upper body strength involved.

It was a godsend that the care facility era was already in place before surgery and recovery took me out of the daily equation for two months. Patti was safe and completely cared for.

Though it’s a bittersweet return to normalcy for me as Multiple Sclerosis memory and cognitive symptoms confound Patti even realizing or remembering any loss in outings or absence of me transferring her to bed the majority of nights each week.

Normalcy? An interesting concept isn’t it?
Patrick Leer

BLOGS:

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

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

can we afford chronic illness

Kent Sepkowitz, a physician and writer, certainly cut to the bottom line in a recent Newsweek:

Equine Opportunity? It's time to face the facts on expensive medical treatments

While using Multiple Sclerosis as an example because it impacts the families of both US Presidential candidates, his point is with the cost of chronic illness. 

“Medicine has reached an odd moment when our cherished American innovation and ambition have given us products that we as individuals each would want, and probably demand, but that as a society we cannot afford… 

illustration by Mark Nerys

… This is not bad news, or a “crisis,” or a watershed moment in human history; it is a simple, quiet fact. Yet neither Mitt Romney nor Barack Obama (or any politician) seems prepared to say it… 

… Perhaps the time has arrived for us to grow up and face our mortality…”

While there is certainly truth to what he is saying I still believe ‘we the people’ first need to “grow up and face” why are these treatments so expensive?

The line between “American innovation and ambition” and profiteering is too blurred to even see what we can afford.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

travels with a faux down vest

“A journey is a person itself; no two are alike.”

John Steinbeck, ‘Travels with Charley: In Search of America’

Visiting a neighbor and recent spouse caregiver widower we share surgery stories. With 9 hrs of back surgery and basically a titanium spine his trumps mine, though bittersweet, of course, since home caregiving for a spouse with RA (rheumatoid arthritis) made his surgery previously impossible.

Wearing my faux down vest to protect my ribs while driving, my return to my ‘road rat’ self was MCing the Prince George’s County Maryland Special Olympic Spring Games.  As if divine coincidence nothing could have been more motivating and rewarding than to be surrounded by heroes.

Returning I stopped to visit old friends. Surprised by the home accessibility modifications I realized I've been too wrapped up in my own life. A manly, man hug can often be an awkward dance until ALS (amyotrophic lateral sclerosis) prevents one of you from lifting his arms; I learned what it is to hug a friend.

Pushing Patti around an “Art Walk”, she could enjoy the magnitude of the art of an Italian street painter turned sidewalk artist. However since much of the art was staged in restaurants we soon disappeared into our favorite, Helena's Chocolate Cafe & Creperie for dinner. A chocolate raspberry crepe is art in our book!

With each lawn mowing and push of Patti’s wheelchair I feel the muscles strengthening even though Patti’s Multiple Sclerosis memory symptoms prevent her from remembering whether outings have increased or decreased

Driving three hours in the rain to visit cousins in New Jersey I sit down to dinner with two other cancer survivors. Still weird to think of myself as a ‘survivor’ and frankly I ‘am not worthy’ contrasted to my youngest cousin who was my inspiration through my darkest moments. Many kids turn 6 every year but this guy also celebrates his 5^th year cancer free since battling liver cancer and all the while living with Muscular Dystrophy.

After all how can I say that someone inspired me if I do not let them climb all over me and my ribs to really find out if they are healed after lung cancer surgery?  … Seems I do not need that faux down vest anymore.
Patrick Leer

BLOGS:

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

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

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.

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

BLOGS:

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

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

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 

videos: www.youtube.com/daddyleer 

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
BLOGS:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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!

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

when caregivers get sick – do you glow? Mar 25

when caregivers get sick – man plans, God laughs Mar 26

from caregiving to survivorship Mar 28

Patrick Leer

BLOGS:

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

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

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.

Shamefully,Tiger Woods even ignores his sick relatives

     “… 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 Won't Help Half-Siblings?

     “…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 take care of our own

   "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 

videos: www.youtube.com/daddyleer

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 

videos: www.youtube.com/daddyleer