a life sequestered: spousal caregiving

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

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

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

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

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

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

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

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

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

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

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

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

"UNLESS someone like you cares a whole awful lot,

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

“The Lorax” by Dr. Seuss

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

teach us to care and not to care

"By creating our own stories we learn to take the texts of our lives as seriously as we do 'official' narratives." Sue Austin

Earlier this month a reader commented on a March 2011 entry, butterfly effect MS caregiving “Hi everyone, I was a caregiver to my brother with multiple sclerosis for 15 years. The last 2.5 years were very difficult because my brother's disease was progressing at a very rapid rate. As a caregiver, I was often tired. Sometimes I was overwhelmed / depressed. I shared the responsibility of taking care of my brother with my mother. My mother was more overwhelmed than myself. My brother was diagnosed at the age of 17. He died December 29 2012 (aspiration pneumonia) at the age of thirty two. I miss him tremendously and at this time I am devastated. I can only say to caregivers to find a way. I would give anything to be a caregiver for him again. It was all worth it.”

Around the same time struggling with a sinus infection (at least I hope it is) for the first time in my 23+ years of spouse caregiving I could not lift Patti out of bed unattended and had to rely on the facility hoyer lift to get her into her wheelchair for an outing. … I was reminded of a line from that very same entry “The toll on your health will shorten your life, up to 10 years less than a non-caregiver, and its quality.”

Throw in the one two punch of Ash Wednesday’s dust to dust theme and Valentine’s Day Memories: the Good The Bad The Ugly from a year ago when I was concealing my own lung cancer diagnosis and I find myself wallowing in whether I am creating a story like ‘Ash Wednesday’ by T.S. Eliot

“Suffer us not to mock ourselves with falsehood

Teach us to care and not to care

Our peace in His will”

Or more like Joni Mitchell’s “Big Yellow Taxi”

“Don't it always seem to go,

That you don't know what you got

Til its gone”

Sharing our story has always been about preventing long term family caregiving for severe Multiple Sclerosis from disappearing from the ‘official’ narrative. 

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

MS dysphagia, St. Blaisé and cosmic coincidence

Inspired by an entry in Middle Age Mania, Get Out of Hell Free Card....

People have shared with us that, “The Lord works in mysterious ways” enough times over the 27 years since Patti was first diagnosed with Multiple Sclerosis to probably qualify for an entry in the Guinness Book of Records.

Those ‘mysterious ways’ challenge faith. As the spouse caregiver, watching Patti decline over nearly a quarter century (and over a three year period burying my father, mother, and only brother) I've certainly had, have, and will have contentious streaks in my relationship with God, fortunately always staying just beyond the ‘smite with lightning bolt’ threshold.

Patti believes my faith matters, so allow me to pull back a curtain. My paternal great grandparents, including the original “Patrick Leer”, who I am named after were immigrants from Ireland and my bedrock is Irish Catholic.

Decades ago wanting to have our daughter baptized Catholic we were told our marriage would first have to be validated. Patti’s Lutheran baptism and our marriage outdoors by an ordained Lutheran minister were unacceptable to Rome.

Even though Patti desired to convert, once a wheelchair was required it became a game changer for accessibility. Frankly juggling spouse caregiving and basically single parenting was more important.

However, as proof “the Lord works in mysterious ways” with time MS cognitive and dementia problems erased religious labels. Plus caregiving + Sunday + church +cognitive symptoms = some interesting experiences.

A week ago, taking Patti out for lunch I was reminded by her care facility staff to have her back by 1:30 PM for her “Catholic thing”.

That “Catholic thing” would be the Feast of St. Blaisé, “through the intercession of Saint Blaisé may God deliver you from the ailments of the throat and from every other evil….”

Considering how often choking has nearly killed Patti, invoking the intercession of St. Blaisé is not a bad idea with Multiple Sclerosis dysphagia.

Yes, speech therapists treat dysphagia but come on now they lack the whole cool looking crossed candle ritual and after yesterday’s cosmic coincidence, maybe just maybe we all need a little more than therapy.

“Care” is rooted in the “Golden Rule” universal to ALL religions.
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PS many find it easier to comment via Facebook link than hassle with Blogger spam captchas. ... Readers are always welcome!
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Patrick Leer

Health Activist:

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

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

multiple sclerosis caregiving dementia mental health

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/

care facility multiple sclerosis caregiving

caregivers create accessible snow

With all due respect to the residents of the New England states, between Feb 5 – Feb 10th 2010, Snowmageddon dumped 35” (88.9 cm) of snow on South Central Pennsylvania.

Yeah, it disrupted lives for a week, but the beauty of a storm like this was to be enjoyed.

Accessible snow = caregiver + shovel!

Living on a corner property snow plows only added to the depth for  'snow spelunking' opportunities before breaking through on Valentine’s Day! 

No snow blowers were used in the making of this collage. 

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

it takes a team

Televised american football always has that moment when the cameras zoom in on a coach prowling the sidelines like a giant insect in headset with antennae.

Yet in real life there is no ‘sideline’, nor are there grown men running around in spandex jumping on each other.

Instead it goes like this …

Driving in one direction to visit a neighbor in a hospital recovering from surgery our daughter heads in the other direction to pick up Patti for an outing from her care facility where she finds Patti finishing her dental checkup.

Not only do I love dentists that make house calls to care facilities but even better when they call me on my cell phone to give me the update knowing Patti’s memory sucks. Which also gives me the opportunity to share my own diagnosis of lung cancer and that the young adult spinning in the therapy chair will sooner than later be taking over as Patti’s POA. … priceless!

Rendezvousing at home we play Trivial Pursuit xBox 360.  With our daughter operating the controller for all of us the game moves along well. Patti can actually see the questions on our screen plus with crowd sounds from cheers to ooohs it has a stadium feel to it.

Later preparing Patti for bed I notice a strange brace laying on her bed, when I ask about it the LPN claims its Patti’s. “No way!” I exclaim I even have a picture of her braces I can email when I get home.

Next day I get a call from physical therapist explaining that everyone was correct. Patti’s knee contracture braces were changed a couple months ago from the type on the left to the style on the right. However since she only wears them at night this is why I likely I had never seen them.

Yesterday I get a call that Patti’s doctor wrote an order for speech therapy evaluation. CNA’s in ‘assisted dinning’ were noticing Patti was increasingly ‘pocketing food in her mouth’. Leaving a message for therapist, I hear back from her within the hour and we briefly chat, I do have two decades 'hands on' experience with Patti’s dysphagia including with what I call “chipmunking” but I learned is officially called ‘pocketing’.

Patti is unable to direct her own care. Someone has to coach her team both on site and off. A good ol’ flip phone is all I need … of course living with my lung cancer diagnosis, a ‘coach in waiting’ spinning in chairs never hurts. J

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

hubris of the spousal caregiver

A curious thing about journaling/blogging is the ability to revisit a place and date in time as originally told through your eyes.

12 months ago I shared in an entry entitled exercise, fitness, caregiving for Multiple Sclerosis:

 “Across the years of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers). …
…As sweat stains your shirt you only need ask yourself - how many people do you know who will step in to push the person you care for up the hills and across the years?”

Smiling in retrospect at the change in narrative from first person to third person, would it have given away my mounting anxieties over my own health had I phrased it in the first person, “how many people do I know who will step in to push …”

Framing this entry into my lung cancer odyssey timeline, I was alone and scared. It was one month since I had learned of  my vague nodular density in my lung.

Everyone and anyone I knew, to paraphrase Jay-Z, had “99 Problems of their own … but the time to hear about my fears of lung cancer just wasn’t one of them”.

How ironic that in the real world, the dementia wild card trumps a lung cancer diagnosis – Patti still is only aware “in the now” of my diagnosis if I jump through all the hoops of explaining from scratch … often forgetting before I can finish explaining.   

Soooo in retrospect, my lung cancer odyssey has been a humbling fall from the dizzying heights of hubris as a spouse caregiver.

I am the one who has awaken every morning for 23+ years and “chosen” to be her caregiver. Patti never chose to have MS.

Dementia symptoms whether Multiple Sclerosis, Parkinson’s, Alzheimer’s or other chronic diseases erase so much more than just memories and time.  

Caregiver hubris can only confuse distinguishing the person we knew 'then' from the person we care for 'today'.

So join us in raising a glass to Ralph Waldo Emerson, “With the past, I have nothing to do; nor with the future.  I live now.”

Patrick Leer

Health Activist:

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

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

multiple sclerosis caregiving dementia mental health

MS dementia, PRN and Bigfoot

Whenever I’m picking Patti up and she hears the word dementia in conversation with staff she will often comment “I’m not f#cking demented!” I counter that “I did not say you were demented, I said you have MS symptoms of dementia”. She returns volley with “And I say you are an asshole man. (in Ahnold dialect)” … amusing herself with the pronunciation, she laughs and forgets how the whole stream began.

Pragmatically speaking, in the care facility era there certain areas where dementia (or MS symptoms of dementia) figure more prominently, at least for me.

PRN is an abbreviation of the Latin phrase “pro re nata”. Since this is not Latin class nor medical school for our purposes it basically means not scheduled medications and is “upon request” by the patient.

Staff has the traditional smiley and unhappy face chart to interpret for residents with dementia or cognitive symptoms who may be challenged to express pain, and/or request medication.

However it’s with other acute no-pain symptoms that the PRN system can unravel. Tacit vs explicit knowledge of any given resident’s current condition coupled with the ‘cover your ass’ philosophy of possible overnight or weekend temporary staff is not the best system to facilitate patients unable to direct their own health care.

Medical advocates, POA, even simply family and friends are the straw that stirs that drink. … ‘boots on the ground’ involvement is soooo necessary.

For example, Thursday night after getting Patti into bed I asked about her PRN Delsym for her cough at bedtime. A non-regular LPN covering the floor looks it up and remarks, “you know Patti has not asked for that since Monday night.” Truth be told, it was me not Patti who asked for it Monday night.

Then again her cough probably would not have been a problem if laughter, normally good medicine, had not grown to an ab crunching, eye watering, cant’ catch my breath crescendo as we found ourselves unable to tear ourselves away from “Finding Bigfoot” on the Animal Planet channel, in particular an episode with a dude named Bobo camping out in the woods, drinking, peeing on trees, and bellowing sasquatch calls.

Patrick Leer

Health Activist:

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

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

multiple sclerosis caregiving dementia mental health

lose the stigma of mental health care

Stigmas are creepy little things until they bite you in the ass or kill you.

If I believed the National MS Society or Patti’s neuro back in the 90’s that dementia was not a symptom of Multiple Sclerosis, then myself, our daughter and Patti could all be dead from a stove fire while my wife sat enjoying her lunch - dementia doesn't need a gun to kill.

A ‘perfect storm’ of mental health care looms to rival any epic struggle in our nation’s history. Yet we seem to chase consequences rather than look at causes.

1 in 8 Americans over age 60 are diagnosed with dementia. While Alzheimer’s is the most common other chronic diseases with dementia include Multiple Sclerosis and Parkinson’s.

Simultaneously, rising up like a breaching leviathan is the Age and Autism with 1 in 88 children aging out of the special education school system.

What little mental health resources and time is available for the plethora of other childhood and adolescent anxieties and developmental disorders is being swallowed .

from the Boston Globe,  A list far too long

“Just days after a young man massacred a group of first-graders at an elementary school in Connecticut; Dr. Leonard Rappaport (chief of developmental medicine) sat down with a mother who had brought her 7-year-old son in for an appointment at Children’s Hospital in Boston. …… “That’s impressive,” Rappaport told her. “You’ve got all your Christmas shopping done.”     … It wasn’t a gift list, she explained. It was a list of the mental health professionals she had called to no avail: Either they weren’t taking new patients, or they wouldn’t accept her insurance.     The list contained 66 names. …”

Over 15 million Americans currently are caring for a person with dementia. An estimated 17 million Americans are caring for a child with special needs. The American career focused dream, "Keeping up with the Joneses", is a candle burning out on both ends.

People with cognitive challenges diagnosed or undiagnosed, treated or untreated are discriminated against. Families are too often lied to in the name of optimism or simply the appointment time is up.

Mental health care MUST be available on parity with physical health care.

Mental health care MUST be honest. Mental health care MUST be responsible.  

Most important of all ‘we the people’ need to lose the stigmas. Wearing my “lung cancer survivor” hat I am always pleasantly surprised by the knee jerk support and encouragement from strangers; yet if I was wearing a “depression survivor” hat I’d bet money the reactions would be different.

The stigmas surrounding mental health care in America still shackles careers, haunts families and yes, kills.

Patrick Leer

Health Activist:

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

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

multiple sclerosis caregiving dementia autism mental health

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?”

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/

care facility multiple sclerosis caregiving

flu shots, f-bombs and Multiple Sclerosis

Bringing Patti some comfort food for dinner at her care facility tonight I expected to find her in bed. “Hey there! I hear you are not feeling well.”

“Yeah! I’ve got some f#cking flu thing or whatever and just want to go to sleep!"

Actually her cough began three evenings earlier. It was so gross to listen to during an outing that I had jokingly offered her the cat’s hair ball remedy.

By the next morning she was presenting all the flu symptoms  including fever over 100˚F, except nausea. After being examined by her doctor, decongestant and additional sinus meds were ordered along with a portable chest x-ray. 

Personally I still find it bordering on magic that doctors make house calls to care facilities and x-rays machines come to residents.

Fortunately the x-ray determined no evidence of pneumonia, bronchitis, or more dangerous for someone like Patti with MS related dysphagia – aspiration pneumonia.

Patti had previously received the flu vaccine but as ‘we’ have learned some people can still get the flu even if vaccinated. Fortunately it will be milder than the real McCoy. However Multiple sclerosis is an autoimmune disease and Patti’s immune system is the proverbial new frontier.

Her fever statistically peaked yesterday at 101˚ in between Tylenol dosages. Her cough was reported as croupy.

Today’s high reading was 99.5˚F. Her cough remained croupy and her voice while hoarse was still capable of f-bombing the flu. After convincing her to try a cup of fruit because it contained peaches, which she loves, she conceded it was indeed “a cup of good f#cking shit”.

Fatigue was ruling her world and she is in the right place to maximize bed rest. 

Sooo we watched the Simpsons on TV, one of her favorites, while I fed her dinner in bed from Helena's Chocolate Café & Crêperie.  The care facility kitchen does a wonderful job but … what could be better for the flu than a dark chocolate and strawberry crepe? ... Duh! A dark chocolate raspberry ganache cupcake, of course. 

Only family and friends can provide TLC. Only an advocate can make noise for someone unable to direct their own medical care when so many residents are affected. Reverse the roles what would you rather have - professional care or TLC bearing dark chocolate cupcakes? 

Visit the sick and don't forget the cupcakes!

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving