Caregivingly Yours, MS Spouse Caregiver

Tuesday, February 12, 2013

Fastnacht Donuts

Living in Pennsylvania Dutch influenced Central Pennsylvania today was as good excuse as any for a lunch outing for Fastnacht Donuts.

Picking Patti up at her care facility we headed over to Café Nell’s at nearby Shurfine Supermarket. A pair of cinnamon sugar Fastnacht donuts and a cup of real decaf coffee made for one happy Patti.

Fastnacht translates from German as “eve of the fast”. In days of yore, the Fastnacht was made with all the sweets and forbidden items in the household to eliminate temptation during Lent. A local radio station called them 'a donut on steriods'. J

Don’t get me wrong it’s not that her care facility does not serve nutritious lunch but every once in a while there is nothing wrong with embracing the Multiple Sclerosis modified principle of Mardi Gras “eat drink and be merry … because I just want to take a nap”.

Brushing Patti’s teeth for her and transferring her from wheelchair to bed with a one person unassisted transfer … I tucked her in for a long winter afternoon’s nap.

Patrick Leer

Health Activist:

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

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

Sunday, January 13, 2013

an outing with Magoo

After her flu related attended bed rest for the better part of 5 days it was time to pick up Patti from her care facility for a push and roll through the fresh air especially on a sunny 53°F (11.7°C) Saturday afternoon in January.

Push and rolls accompanied with Multiple Sclerosis dementia are never boring. Encountering this statue Patti wanted to know “why the f#ck was this guy holding a pen?”

statue of Benjamin Rush, Dickinson College

Seeing no one anywhere nearby necessitating parental guidance controls on language, I plunged in. Reading the print I explained to Patti “it was a statue of Benjamin Rush, a signer of the Declaration of Independence.”

Patti: “So what! Lots of people signed that f#cking thing. Most of them were forced to!”

Me: “Wow! Perhaps you should teach history here”

Patti: “I couldn’t teach history – I’m too honest. I tell it like it is!”

Laughing out loud I begin to wonder who has the touch of dementia.

Continuing our push and roll I must confess to a guilty pleasure of enjoying Patti conversing with talking cross walk polls. It’s like going for an outing with Mr. Magoo. Patti wants more than a ‘wait’ or ‘walk’ … she wants to know “why”. While on the other hand, whoever programs them “for the visually impaired” seems to think that people with disabilities simply lockstep obey commands.

Whatever … sunshine, fresh air and laughter is free, disease modifying medicine for whatever ails you and IMHO probably better than half the stuff Big Pharma overcharges you for.

Patrick Leer

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

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

Tuesday, December 18, 2012

they say its your birthday

my original 1st birthday

Today was a bit more than just ‘another’ 39^th birthday it was also my 1^st birthday since successful lung cancer surgery.

I did not even know such birthdays were possible almost a year ago, so yeah this one was ‘special’.

Started the day with a brisk Birthday 5K Walk that started in morning fog yielding to beams of sunlight before a rude rain cloud blew through with a finale of windy rain.

Of course it was also my 23^rd birthday as a Multiple Sclerosis spouse caregiver and sooner than later any day has got to be viewed through MS 'symptom D' glasses.

Sooooo stopping by Patti’s long term care facility to include her, I tried to coax out of her MS dementia any recall of my birthday; after all I should exist in long term memory.

Questions about month and or date failed to get anywhere but finally the 18^th rang a bell and coupled with ‘birthday’ she at last offered that it was her birthday’. (Actually that is September the 18^th but remember I've been a MS caregiver for 23 years – what’s it matter who’s birthday it is.)

Heading home for dinner and opening some presents I have to credit our daughter for quick thinking as she improvised that someone must have misspelled Patti as Patrick on the cards. Patti enjoyed opening her cards and presents and just as quickly lost them in short term memory loss … where I will magically ‘find’ them.

After transferring and tucking Patti into bed at her facility I headed off to treat myself to an evening showing of “The Hobbit”.

Mentioning it was my birthday I was pleasantly surprised to discover my admission was free!!! I settled down with a bag of popcorn and sat back to enjoy a story I had not read since college when the only birthday I cared about was turning 21.

Patrick Leer

BLOGS:

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

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

Saturday, December 08, 2012

If it ain’t broke don’t fix it

While this phrase has certainly evolved into a down home cliché about sufficiency I personally have found that it does not translate well into advocacy in the care facility era.

Joint contractures are a good example of this challenge. Contractures are a preventable source of excessive disability but this is Multiple Sclerosis and muscles act weird, dysfunction begats dysfunction. Believe me not everyone, including myself, is on the same page for a boatload of reasons.

Sometimes advocating is about trying to prevent things from worsening.

Sooooo it ‘ain’t been broke’ in so long I got curious and dropping by early to pick Patti up I found her in physical therapy room, strangely laughing while doing her assisted knee contracture exercise instead of cursing and swearing her traditional therapy language. Therapist shared her ‘numbers’ reflecting Patti’s improvement as I shared my anecdotal evidence that I could not even remember the last time she did not extend her legs when I transferred her.

In talking we discovered my own health issues had apparently played a beneficial though unintentional role. Just before my lung cancer surgery the time of day for Patti to wear her braces was changed to early evening. Laying in bed Patti was unable to tinker with braces making then ineffective as pictured to the left. So evening LPN’s began applying braces around 7 PM and removing each night at 11 PM when overnight shift arrived. Unencumbered overnight sleep was as important as the 'low-load, long duration stretch'.

Prior to my lung cancer surgery I would often return Patti later than earlier and was working on my average of 3-4 outings per week. The problem was that by doing so I was short changing the duration of ‘low-load, long-duration stretch’. When our daughter stepped in during my recovery from surgery to pick Patti up and bring her home for visits she improved two critical things. She reduced the outing equation to 3 and since she does not physically transfer Patti herself learned from staff that they usually transfer Patti to bed after dinner approximately 6:30 PM. A timetable which not only is MS fatigue friendly and Patti prefers but enabled a regular nightly schedule of 4 hrs of low-load, long duration stretch.

Sometimes advocating is also about learning better ways to accomplish the same thing.

previous related entry: contractures Multiple Sclerosis

Patrick Leer

BLOGS:

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

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

Tuesday, December 04, 2012

sometimes you have to turn it up to '11'

On a sunny 70°F (20.9°C) afternoon in December in South Central Pennsylvania I picked up Patti from her care facility for an outing, rolled down the windows and cranked up the radio to '11'. (As Nigel Tufnel taught us all in ‘This Is Spinal Tap’, sometimes 10 just won’t do.)

With Spring Fever in December we headed off in search of the legendary Red Devil. First stop, Dickinson Field alleged home of the Red Devils or at least that is what it says on a sign.

After a most enjoyable but futile push and roll Patti was laughingly remarking something to the effect “the damn little bastards probably can’t read and don’t know they are supposed to be here” when …. poof she was gone.

Being a super sleuth I followed her wheelchair tracks to the baseball dugout where I found her encaged in laughter and after all it certainly was baseball weather.

If not here then a graveyard was the next logical place to search for that Red Devil. I could not find either adjacent parking or an accessible way in - well, except for the hearse entrance. Hey, it was an ‘eleven’ day so in I drove, parked and deployed the ramp on what appeared to be unused ground.

Consulting first with the sculpture I have often admired driving by Patti decided she looked like a stone cold creepy thing and well, we got no more information from her.

Next we headed deeper into the oldest section where graves date into the 1700’s and the drooping branches of ancient evergreens trump Hollywood. Old grave markers were often as much about wit as dates and soon we were laughing along with 250+ yr old witticisms. … but no closer to finding the Red Devil though totally enjoying our outing.

Returning to the van I remarked to Patti “those look like muddy footprints going up the ramp! …”

“… and those annoying two were never heard from again.”

The End,

The Red Devil

BLOGS:

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

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

Annette Funicello: Her life with multiple sclerosis

Wednesday, October 31, 2012

Nature is transient, MS is relentless

Rounding up linen and making up Patti’s bed at her care facility may not be the most typical Hurricane Sandy preparedness story but then again in almost a quarter century of Multiple Sclerosis spouse caregiving little has been typical.

Apparently awakening from her Sunday afternoon nap was accompanied by a significant episode of vomiting. Aides had cleaned up Patti, stripped bed linen, cleaned bed, and room and redressed Patti transferring her to her wheelchair.

I had intended to stop by anyway kind of a reverse extension of “mi casa es su casa”; could I run an errand for anybody, etc. Plus anytime I can attend to Patti it prioritizes her care. Her MS cognitive symptoms prevent her from directing her own care much less remembering what is going or or even what she wants.

So I took her out for some fresh air in the calm before the storm and some light happy food for her tummy. Soon she was ready for bed and that brings me back to making up her bed.

I found myself reflecting on the handful of hurricanes, even an F4 tornado and blizzards that have huffed and puffed through my decades of caregiving but frankly paled contrasted to Patti’s rapid progression to severe Multiple Sclerosis. Nature is transient, MS is relentless.

My pursuit of a philosophy of a stoic indifference to my own existence is the only way I have been able to survive as a spouse caregiver. Somehow indifferent I was invincible.

Successfully executing the one person unassisted transfer of Patti from her wheelchair to bed I noticed the intermittent shortness of breath that has been bothering me and found myself distracted.

Cracks in the armor are disturbing. Cancer cracked the armor. That ol’ stoic indifference swaggered with invincibility. True I had surgery to remove the cancer from my lung but surgery can’t cut it out of my head, figuratively speaking.

Fortunately Patti can’t remember so anxiety does not affect her. Whereas for me the question can a cough be just a cough haunts this whole Sandy experience.

Anyway this is about caregiving not a whining caregiver, sooooo the day after Sandy I picked up Patti discovering that her care facility had never lost power (even though they have generators) or encountered any problems. We headed out for an outing into post-apocalyptic South Central Pennsylvania who knows maybe some 'accessible' looting for early Christmas shopping. Instead we found only one road closed.

For once we caught a break. Unlike so many others whose lives have been turned upside down, Sandy spared our area.

Patrick Leer

BLOGS:

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

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

Friday, October 12, 2012

Multiple Sclerosis caregiver Social Media

Social media is a curious phrase. Before smart phones strangers might acknowledge us seeing us out and about; though most people pretend others with disabilities are invisible. Now with most people walking around in a trance hypnotized by their smart phones, iPads, kindles, or whatever more people actually walk into Patti in her wheel chair than ever before. Sooo … while they are sprawled across Patti’s lap or nursing their bruised shins are they engaging in ‘social media’?

Trends and technology aside there is one thing about Multiple Sclerosis caregiving that is as old as time, the feeling of isolation and loneliness.

I still remember the moment when I first discovered there was some like me out there 20+ years ago in a hidden mysterious world behind a plastic monitor on a AST personal computer with 2 MB RAM on something called a Prodigy Network ‘bulletin board’, pre-AOL and the dawn of internet service provider days.

Now over two decades later cyber enthusiasts tell me that sharing our story is “part of the social media of patient advocacy”. ‘Caregivingly Yours’ has even been ‘pinned’ on Pinterest, whatever that means.

Google analytics reports that Caregivingly Yours was viewed in just the past 12 months in 115 nations and read in 94 languages.

Caregivingly Yours, MS Caregiver
views October 2011 - October 2012

Whatever ‘youngens’ want to label it today, one thing has never changed it remains one person sitting down sharing our story with this mysterious world behind the plastic monitor about caregiving for severe MS so that somewhere, somehow when someone else begins their journey with MS progression they can discover that they are not alone.

As the writer of our story, yes the number of nations and languages is humbling. However it is frustrating that the smart phone generation seems to not get that all the ‘apps’ on the planet cannot change one single Depend. MS caregiving has taken, takes and will always take 'two hands'.

IMHO, better than improving ‘social media and medicine’ would be to energize 'social media and cures' and have less challenges to talk about … now that would be a wonderful world.

I hear babies cry...... I watch them grow

They'll learn much more.....than I'll never know

And I think to myself .....what a wonderful world

“What A Wonderful World” by Bob Thiele & George David Weiss

Patrick Leer

BLOGS:

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

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

Sunday, October 07, 2012

Annette’s caregiver pulls back the curtain

Annette Funicello’s spouse caregiver pulls back the curtain on not only the toll of chronic progressive multiple sclerosis on their lives but her recent CCSVI (chronic cerebrospinal venous insufficiency) treatment.

Annette Funicello and Glen Holt

“Now in a world exclusive Annette Funicello is back in the public eye. Glen Holt, her husband, invited W5 (Canadian news magazine television series) into their home to show the devastating effects of chronic progressive multiple sclerosis and to talk about his 25-year quest to find a treatment to help his wife…

… Today Annette receives around-the-clock care. She is fed through a tube and must be carried from her bed to her wheelchair.”

Back in 1992 when Annette Funicello first went public with her diagnosis of Mutliple Sclerosis it was a pivotal moment. Patti while technically diagnosed 7 years earlier had suffered her first major exacerbation 3 years earlier in 1989.

Diagnosed with 'chronic progressive' MS, they just faded away, as do too many. Caregivingly Yours was launched several years ago so one life would not disappear drowned out by the Big Pharma marching band of treatments for milder MS.

My hat is off to them both for inviting the world in to see that MS needs to be cured not treated.

Patrick Leer

BLOGS:

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

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

Wednesday, October 03, 2012

Multiple Sclerosis is exhausting

Unquestionably MS caregiving is both physically and emotionally demanding and exhausting … but “living with MS” itself now that is the ‘mother of all’ exhausting, like having a tank looming over you just waiting to run you over.

A fellow MS caregiver blogger whose spouse has also progressed to the care facility era of Multiple Sclerosis recently shared a touching entry, Too Tired for Lunch.

“We were supposed to be going out for lunch today … But when I arrived he was still in bed and sound asleep … he woke up but still groggy, and said he didn’t want to go anywhere…”

Reading Barb’s entry I was reminded of how many times I arrive to find Patti in one variation or another of “I just want to sleep”.

When this happens in late afternoon (our usual outing time) I just hang out while she sleeps, use the opportunity to track down physical therapists etc, or catch a little tube with Patti, and help out by feeding her dinner in bed, etc.

None of which I confess tends to make it into many entries to this journal. I am guilty of wanting to share our successful adventures more than when MS wins. In reality a whole lot of both 'living with MS' and MS caregiving is about being “too tired”.

Even when out and about, every outing has its breaking point when that tank of MS fatigue rolls right over Patti.

Monday I had Patti home for another caring and the culinary arts experiment using haddock tenders and shoestring french fries for finger food friendly fish and chips. While the culinary experiment went quite well I was also in these cooler Fall temps trying to stretch the outing as a kind of training exercise for upcoming October Halloween parades.

Trying to guesstimate when that MS fatigue breaking point will happen and getting Patti ready for bed just before it hits is the never ending ‘art of MS caregiving’.

Patrick Leer

BLOGS:

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

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

Wednesday, August 29, 2012

the curious case of a lawnmower on Mars

Sometimes even after nearly a quarter century I still find myself sitting at the same table with other people but as a MS Spouse Caregiver my chair seems to be in a parallel universe.

I stared speechless as people with mounting enthusiasm babbled on over the ‘how and what’ of NASA landing some new lawnmower on Mars.

Not just any lawnmower but a $2.6 billion dollar mower named Curiosity. Well the only 'curiosity' germane to the conversation IMHO was here Patti was sitting in a wheelchair because of a disease she has had since 1985 named Multiple Sclerosis.

I was told NASA people are a different kind of scientist, they couldn’t cure a disease if it fell on them. OK then what about the wheelchair that has not basically been redesigned in almost 100 years. If I wanted to send it to Mars they certainly could improve it; however they do not perform science on earth.

Anyway more money, $5 billion a month or so, is wasted in Afghanistan far more than the $2.6 billion NASA wasted on Mars. Go harass the military industrial complex. Fine with me, we have no business occupying either place. So now I basically have $62.6 billion for a year (minus unemployment for space workers and some graft for politicians) left to spend on curing MS. Works for me!

Of course that’s my problem I’m stuck in this parallel universe. In the other universe, the real one, since Sylvia Lawry founded NMSS in 1946 after 70 years of fundraising they have managed to raise and invested only $600 million in research and have no cure to show for it. (Wow, that’s less than 1% of the pile of money in my universe).

Before you say I’m being greedy about MS (a rare disease) and am not thinking about the future of everyone. … I have considered what our bright young people might aspire to if we stop invading Mars and Afghanistan. - OMG they might aspire to cure disease on earth!!!!

I for one would gladly start with just one cured disease over all the lawnmowers on Mars.

by Patrick Leer

BLOGS:

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

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