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/

multiple sclerosis caregiving care giving social media

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/

multiple sclerosis caregiving care giving

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/

health lung cancer pancreatic cancer caregiving

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/

multiple sclerosis caregiving care giving

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/

multiple sclerosis caregiving care giving care facility

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

accessible dinner theatre in the street

“… For the times they are a-changin'.” Bob Dylan

It’s been 49 years since Bob Dylan penned that verse. Yet Monday night while we pushed and rolled through the staging of Carlisle’s Halloween parade I personally was startled at the number of wheeled people participating.

Carlisle Halloween Parade 2012

We discovered two floats sponsored by care facilities escorted by several rolling residents. … plus a float promoting a local autism school including parents and students for grades K – 12. ... and our personal favorite kids roasting marshmallows on a trailer. 

When able bodied people plan or organize anything, people with disabilities physical or mental can become unintentionally marginalized and/or largely invisible…. It is a rare community of people who can be genuinely inclusive.

While the visual impact was revolutionary for our years of parading … when you factor in a dependent population due to increasing chronic illness and age plus the reality of 1 in 88 kids with autism growing in leaps and bounds from childhood to young adulthood … if anything this parade was also a peek into the future.

Of course both in Carlisle above and pictured below in Mechanicsburg  there was still an overwhelming representation of fairy tale creatures, zombies, marching bands, cheerleaders, and the limitless creativity of Halloween.

Mechanicsburg Halloween Parade 2012

Small town America, at least here in South Central Pennsylvania, turns into the land of Halloween Parades in October. Just within a 20 minute drive of Patti’s care facility are seven such parades.

Patti’s Multiple Sclerosis visual impairment (legally blind) prevents her from seeing the distance from the curb to the center of the street so last year we began arriving about an hour before hand and push and roll through the staging area as floats are assembled, groups organized, and last minute costume adjustments made. Patti can see up close and enjoy interacting with participants

MS fatigue and her preferred bedtime of 7 PM becomes less of a problem as we are heading her to bed about the time most parades are kicking off.

Five more to go! As we always combine an outing with carry out finger food (which we have been praciticing with for months), it’s kind of like dinner theatre in the street. J

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 halloween

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/

multiple sclerosis caregiving care giving social media

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: Her life with multiple sclerosis

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/ 

multiple sclerosis caregiving care giving

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/

multiple sclerosis caregiving care giving care facility