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/

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first snow push and roll

Maybe it’s the combination of reading other Multiple Sclerosis related blogs and the dawn of the 23^rd year of our own story of living with MS but my heart goes out.

Maybe Guns N’ Roses was right, “... Nothin' lasts forever … and it's hard to hold a candle in the cold November rain …”

Others all seem like such youngens either chronologically or in terms of MS progression. I pray they all can stay forever young, stay forever mild. It sure doesn’t get any easier.

Whatever, as long as I can still push a wheelchair and the first snow falls it was time to get Patti out for a push and roll through the park adjacent to her care facility.

MS dementia symptoms are such cunning thieves. Patti enjoys the ‘now’ of the push and roll but she quickly forgets as she remembers her longer ago pre-MS times skiing.

Then it was home for dinner and back to my ongoing project to extend Patti’s self-feeding for as long as possible. Thanksgiving and Thanksgiving left overs are not exactly dysphagia friendly food and require me or someone to feed Patti along with verbal cues.

On the other with the flick of a switch our gas fireplace leaps to life as I hand Patti a bowl she can self-feed with cut up MorningStar Farms vegetarian buffalo wings, cut up mango spears, and grapes to enjoy in front of a fire after a push and roll through the season’s first snow. 

One way or another we all live 'in the now', some of us just remember it. 

Patrick Leer

BLOGS:

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

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

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What is your caregiving 'prime directive'?

Any Trekkies out there? Any ‘normals’ remember the Prime Directive, Starfleet’s General Order #1? (Trivia answer at the end)

The point here is that as spousal and/or family caregivers we each have our own Prime Directive ... and as National Caregivers Month 2012 comes to a close, why not share?

Mine has always been, is and I suspect always will be Patti’s ‘safety’.

Our story began so dramatically with Patti awakening on Thanksgiving morning 1989 suddenly unable to walk and barely about to see and talk with her first major Multiple Sclerosis exacerbation that I was baptized by fire into the world of caregiving and medical advocacy … while somehow juggling our 18 month old daughter in my arms.

Yes, Thanksgiving Day is a “tradition” for others but for me it’s become more like a minefield of challenges to my prime directive of Patti’s safety.

• ·      MS related dysphagia smothered in abundant food demands 200% of my attention, feeding Patti, monitoring, and verbal cueing to prevent choking while the discordant symphony of a large family dinner plays on.
• ·      Transferring and travel is always like spitting into the wind, do it on Thanksgiving Day and well you just up the ante. Should something go wrong able bodied people can just walk away, this is not an option for a non-ambulatory woman in a wheelchair inside a wheelchair accessible van requiring a ramp to exit and enter.
• ·      While guests use a restroom for us it’s more like a mutated Turkey Day “beat the clock” game. From the time I pick her up until we return it’s a gamble on incontinence. Patti’s only option would be me physically transferring her to and from a bed and changing her.

Bottom line – did Patti enjoy the time? ‘In the now’, yes!

Though MS related dementia erases each holiday moment as it happens, more like an etch-a-sketch Thanksgiving. Driving away when Patti cannot tell me what we just did, it does make me wonder about the equation of risk vs reward.

And for the first time in 23 years facing my own health issues, a lung cancer diagnosis, I realize I may not be able to be the linchpin in future caregiving equations and wondering what is more important traditions or prime directives?

Patrick Leer

BLOGS:

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

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

P.S. As promised for trivia buffs -  the Prime Directive dictates that there can be no interference with the internal development of alien civilizations. … Ooops, those original Pilgrims must have missed the memo from Starfleet. 

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Kiss Off M.S. 80's style

A friend sent me an old picture over the weekend which considering the whole significance of this Thanksgiving week … well, it’s kind of hard to look away … a whole lot of irony, what ifs and more.

Time traveling to the early mid 1980’s; pictured here we were participating in a “Kiss Off M.S.” promotion, a bar room version of the kissing booth. $5 donation to Multiple Sclerosis got you a kiss.

I’m quite sure I had no clue as to what M.S. was about. However standing behind a bar while women paid $5 to kiss me … come on now what’s not to like about a night like that.

Though we were dating, Patti and I would not be married for a couple years and likewise I doubt if Patti had ever heard of MS.

I find myself pausing to reflect on my coworkers flanking me for they would go on to live ‘normal’ lives. Yet today they both ‘rest in peace’ while I may be the only one left standing to hit this send button ... so I better not dawdle. 

Patrick Leer

BLOGS:

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

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

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ill spouse vs well spouse

Any time I ever try to explain this concept to Patti I find myself slipping into some mutation of “I is the IS and you is the WS as you are me and we are all together … I am the walrus, goo goo g'joob.” We just end up laughing and by then her Multiple Sclerosis dementia related symptoms have erased the conversation and we can simply start over again … or not.

Among the technologically too cool of modern social media, IS = ill spouse and WS = well spouse. Obviously we are out of sync perhaps that is because our story began in the last Century.

Thanksgiving morning will mark the beginning of my 23^rd year as my wife’s spouse caregiver.

Caregiving was consequential when it began for me.  Former First Lady Rosalynn Carter was about the only person making noise. And frankly some stigmas were making my life harder. Multiple Sclerosis was, and is, portrayed as mild. Anyone successfully juggling both caregiving for a spouse and basically single parenting had to be a woman.

Oh yeah and this thing you are using to read this was not around. We went to our neighborhood library for information.

I can still remember the first time years later that I discovered someone like me out there in this mysterious place called the Internet.

Today when I cruise by ‘on line’ support groups or pages they seem so adversarial to me, more about WS vs IS.

It’s OK to not like caregiving moments, Lord knows I get that.  Maybe it’s about too much access too soon. I know for me if I pause to take a deep breath then what I have to say comes out different.

Bottom line it’s always been about choice. Patti did not choose to be severely disabled with MS. I chose to give care.

If advice from an old dude is even germane anymore … as insane as caregiving moments have driven me over the decades, I have always tried to remember it is the MS I hate not the IS.

Patrick Leer

BLOGS:

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

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

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Not Your Friend’s MS Caregiving

Reading the latest issue of NMSS Momentum I was intrigued by their cover article “Not Your Friend’s MS”.

I found myself reflecting on how many Multiple Sclerosis spouse caregivers, family and or friends who actually provide care or one day may need to provide care are not affected similarly by the phenomena of “Not Your Friend’s MS Caregiving”?

Reflecting led to reminiscing …

Rosalynn Carter

Decades ago my Dad gave me a copy of “Helping Yourself Help Others” by former First Lady, Rosalynn Carter who first became a caregiver as a teenager helping her Mom as her Dad died of leukemia. I will always remember reading for the first time, "There are only four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers". … Decades later Rosalynn Carter remains involved as President of Board of Directors of the Rosalynn Carter Institute for Caregiving of Georgia Southwestern State University.

Mitchell Kowalski and Zane Kotker 

Around the same time, misfiled on a library shelf I found a copy of “Mainstay: for the Well Spouse of the Chronically Ill” written in hindsight by a MS spouse caregiver, Zane Kotker under the nom de plume, Maggie Strong. Most importantly to me at the time, she wrote about caregiving for severe and progressing MS until her husband’s death … ‘not your friend’s (mild) MS’ as portrayed everywhere else in MS publications of the time. Today Zane Kotker continues her writing career but as a fiction author under her own name living in the Pioneer Valley of Massachusetts. That original 80’s book “Mainstay” spawned what today is known as the Well Spouse Association.  

These two long ago, pre Internet advocates for caregivers back when I was starting are good examples of the range of philosophy of “not your friend’s caregiver”.

Neither is right or wrong! Yet in the beginning, who among us does not search for or want to be inspired by the ‘right plan’ for the future. That is until unpredictable twists and turns of fate leave us all … living the ‘best of possible’ lives.

Patrick Leer

BLOGS:

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

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

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November is awareness

Awareness sometimes is just reality biting you in the ass.

My Dad became my Mom’s caregiver spouse in 1987 when she suffered a massive stroke in ICU following carotid artery surgery. … I became Patti’s spouse caregiver when she awoke Thanksgiving morning 1989 unable to walk and barely able to see or talk and by afternoon was hospitalized with her first major Multiple Sclerosis exacerbation.

Thanksgiving was about ‘caregiver awareness’ for us before it was ever designated. In 1994, the National Family Caregivers Association began promoting the week of Thanksgiving to acknowledge family caregivers. Eventually the entire month of November would become National Family Caregiver’s Month. 

November is also designated Pancreatic Cancer Awareness Month. My Dad died of Pancreatic Cancer 15 years ago. I spent the longest night of my life holding him, talking with him and sharing “the time of angels” ... I have been there for the closing chapter of cancer. That’s the kind of awareness that just does not pigeonhole into a month.

My own lung cancer odyssey began with a 9 mm vague nodular density on a chest x-ray 10 months and 2 weeks ago. This will be my First Lung Cancer Awareness Month as someone surviving lung cancer. To me every day is Lung Cancer Awareness Day not just November.

It’s difficult not to notice the common denominators of long term spouse caregiving and cancer. Cause and effect? I seriously doubt it but then I’m left to pause and wonder if ‘the deadliest cancers я us’ isn’t becoming some macabre family tradition. More likely, spouse caregiving equals long term stress which does take a huge toll on the immune system.

To paraphrase Shakespeare from the Twelfth Night, ‘Be not afraid of awareness, some are born aware, some achieve awareness, and some have awareness thrust upon them.’

Patrick Leer

BLOGS:

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

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

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fun with accessible voting

Voting with us is not unlike the delicatessen scene from the movie “When Harry Met Sally” after Meg Ryan demonstrates a fake orgasm and the older woman customer remarks to the waiter “I’ll have what she’s having.”

Other voters look up from their computerized voting screen toward ours wondering why theirs is not so entertaining.

That’s because they are not assisting a voter with severe Multiple Sclerosis with symptoms including legally blind and severe short term memory loss at the top of her myriad of cognitive challenges.

Having just finished reviewing Presidential choices including third party candidates, I turn to Patti and quietly ask her who she would like to vote for. … In a booming voice one might normally reserve for yelling from the top of a football stadium (because MS frequently lacks volume control) Patti declares “I think they are all assholes!” … and dissolves into self-bemused laughter.

The guy next to us laughingly remarks to a poll worker “How come my machine doesn’t have that choice?”

Eventually and while having more fun than two people should in a polling station we do finish voting.

Yes we, or I should say I could cop out for us, and do a mail in ballot or any of the other accessibility options but Patti prefers to participate in voting at local polling places. Accessibility to us has always meant inclusion not exclusion. … and if it can be enjoyable along the way than all the better.

Patrick Leer

BLOGS:

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

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

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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/

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Unpredictability of Multiple Sclerosis

“It was Thanksgiving morning 1989 when Patti awoke unable to walk and barely able to see or talk …” Patrick Leer (discussing my wife’s first major MS exacerbation)

“It was just before Thanksgiving 1998, she began to see some numbness on her right side. It began spreading, larger and larger. She was having more difficulty getting upstairs …” Mitt Romney (discussing his wife’s first major MS symptoms)

Within a few months, Ann Romney was nearly bedridden and staring at life in a wheelchair. “I was at such a scared time in my life,” she told an audience in Orlando.

Within a few months, Patti had rebounded from her week long Thanksgiving hospitalization of IV Prednisone treatment and courageously returned to work. A second major exacerbation would hospitalize her again within the year.

Romney credits her doctor’s aggressive treatment and the therapeutic effects of horseback riding as reasons for the “miraculous” recovery of much of her strength.

Patti originally diagnosed with “probable MS” four years earlier in 1985  following a bout of unexplained and spreading numbness and tingling in her hands that equally baffling just went into remission did not have the opportunity of any aggressive treatment as no treatment existed way back then (13 years before Ann Romney) except the Swank Diet and prednisone for acute exacerbations. 

Today (14 years later) Ann Romney is aware that it’s the nature of the disease that she can’t know when she might get worse. “I started feeling tingling and a little bit of numbness coming back and I was dizzy … the MS fog …” Ann Romney describing a flare-up of her MS during the Republican Party primaries.

Today (27 years later) Patti lives 'in the now' due to progression of MS dementia symptoms. Non-ambulatory (what was once called bedridden) she requires assistance with each and every activity of daily living.

Yesterday riding through Florida under clear skies and 87° (30.5°C) and thanks to her 'team of campaign workers' Ann Romney's life on a campaign bus made a stop at a bakery for treats for her accompanying grandchildren and a photo opportunity for supporters.

Yesterday in Pine Grove Furnace State Park, Pennsylvania on a spectacular 75°F (23.8°C) sunny Fall afternoon, thanks to the 'team of staff' at Patti’s care facility that got her ready and thanks to the assistive technology (wheelchair accessible van) to transport us … we could push and roll to a lakeside picnic and laugh through a game of rock, paper and scissors on a wooden bridge over a mountain creek.

by Patrick Leer

BLOGS:

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

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

multiple sclerosis caregiving care giving

Where are the voices of advanced multiple sclerosis?

Progression of my wife’s MS dementia symptoms devastated not only her abilities to direct her own medical care but safely interact in the world around her.

A crowd of communication impairing symptoms from visual impairment (legally blind) to dysphagia and speech control through physical inabilities has prevented her ever using a PC.

Even a telephone can challenge her not only physically but cognitively.

For over a decade and a half we would hear how ‘rare’ Patti’s MS was … now at least the MS Society and organizations talk about advanced MS, unfortunately most debate nomenclature rather than substance.

We are not hearing from those who can no longer speak for themselves. MS in itself is a rare disease in the US affecting only 1 in 750 people, whereas other dementia related diseases such as Alzheimer's affects 1 in 8 older Americans. 

Recently I was reminded of all this while reading some remarks from MS bloggers about Annette Funicello’s progression.

If a writer with Multiple Sclerosis can write then they still have their mind and likely control of enough body function to either type or dictate. … with progression comes increasing dependency and apparently cyber-silence. Unless their caregiver speaks for them, their voice is silenced.

Apparently a significant amount of people with MS disappear, where do they go? Is the MS blogosphere an anthology of unfinished stories? Scanning through a listing of MS blogs reveals that 45% have not been heard from in over 6 months through years or more.

Is this about the increasing isolation of MS home imprisonment?  Or is it a factor of the dawn of socialization with the care facility era? Or has someone's MS gone into remission and they want nothing to do with the MS community? Or is Patti’s situation more common and progressing MS symptoms simply prevent communication? … I do not know. I don’t do answers, I do questions.

Yes, it is extra work for caregivers to share but when those we care for can no longer speak for themselves then how can others know both the challenges and victories than can and will lay ahead when people with MS can no longer share themselves their journey of living with MS. 

“Speak up for those who cannot speak for themselves…” 

Proverbs 31:8

by Patrick Leer

BLOGS:

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

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

multiple sclerosis caregiving care giving