Caregivingly Yours, MS Spouse Caregiver

Tuesday, March 19, 2013

farewell to winter push and roll

Spouse caregiving for Patti and my own diagnosis of lung cancer collide on far too many days anymore. Trying to outlive lung cancer is somewhat like trying to outrun those proverbial headlights at the end of the tunnel.

Yet paradoxically when actually hangin’ with Patti, I have no lung cancer in her Multiple Sclerosis dementia.

Attending her Care Plan Review today, I decided to include Patti. Usually I do not because if I want to actually discuss something, Patti’s MS dementia leaves her lost, clueless and wondering out loud who the hell are these people talking about.

One thing I have learned about advocating for someone with dementia is that you need to have boots on the ground weekly on a regular basis.

Anyway I was able to meet some new department heads and in closing when new Care Plan Review coordinator tried to explain to Patti who it was she was replacing, Patti interjected, “oh you mean that slut!” … Which as the table erupted with gasps of laughter I had to smile at Patti’s sense of comic timing, always leave them laughing.

Next we were off for a 1 mile push and roll through a nearby park before heading downtown for some urban 1 mile push and roll.

2”+ of shoveable snow had fallen the night before which I enjoyed to no end. I love to shovel snow. By this afternoon the sun and warming temps had melted most of it for our farewell to winter push and roll.

Heading back to her care facility I fed her dinner in front of her TV, better than room service to her, before brushing her teeth, transferring her from her wheelchair to her bed with a one person unassisted transfer, and undressing/dressing her for bed.

While Patti certainly enjoyed our outing I had something even better, a lung cancer free afternoon.

Patrick Leer

Health Activist:

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

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

Monday, March 11, 2013

MultipleSclerosis.net "Who I Am and How I Got Here"

“Welcome to MultipleSclerosis.net, the newest resource for patients and caregivers living with multiple sclerosis.”

Recently I was invited to blog from a MS caregiver’s perspective by some interesting people with Health Union LLC for a new Multiple Sclerosis website, MultipleSclerosis.net and it's associated Facebook page.

“At MultipleSclerosis.net we empower patients and caregivers to take control of Multiple Sclerosis by providing a platform to learn, educate, and connect with peers and healthcare professionals.”

Frankly I’m kind of honored that our story is the featured blog to kick off NMSS Multiple Sclerosis Awareness Week as I have long argued that people with advanced or severe MS such as Patti are swept under the rug.

Read Who I Am And How I Got Here… from MS.Net

Curiously while Caregivingly Yours, MS Caregiver has nearly 10,000 pageviews per month according to Google Analytics the National Multiple Sclerosis Society (NMSS) has never included 'our story' in their publications or on-line presence.

Believe me I understand that severe MS is scary especially to the newly diagnosed but to exclude it from the dialogue of MS is even scarier.

Patrick Leer

Health Activist:

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

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

Sunday, March 10, 2013

Lung Cancer pushes Multiple Sclerosis

In our own mutant version of rock, paper, scissors, lung cancer will always push Multiple Sclerosis. Patti will never push me nor care for me nor even remember I have lung cancer.

Scanxiety is driving me nuts with my CT Scan looming this week for my 12 month follow up from lung cancer surgery.

Soooo I took a brisk two mile (3.2K) walk around the neighborhood with an audio book then headed over to pick up Patti for a push and roll on a gorgeous sunny 64°F afternoon.

Another mile and change pushing a wheelchair would give me 5K for the day.

Trails through woodlands and parks are OK but rarely can Patti actually see anything. The Army Heritage Trail dotted with tanks, helicopters, and more is MS visual impairment friendly. Even a legally blind person can see a tank.

Plus the US Army knows disability and most everything is wheelchair accessible unless of course it was meant to be climbed on. Unlike parks and such the trails at Army Heritage Trail are maintained regularly.

Pushing and rolling through US Military History we decided to detour into 1965 and the Battle of La Trang Valley. Visiting a Vietnam Fire Support Base we found their 105mm howitzer totally wheelchair accessible. Then it was off to WWI to play hide and seek in World War I Allied Trenches.

Even though she does not appear to exert energy just being outside and rolling on different terrain amplifies her MS fatigue and she was ready to call it day.

Heading back for dinner at her care facility for dinner I fed Patti stuffed green peppers, mashed potatoes and apricots. When I stay to assist her with dinner it’s like having her own personal attended. No waiting before bed. No hoyer lift needed. After brushing her teeth and transferring her to bed with a one person unassisted transfer, one of the evening CNA knocked on the door to change her and give her a nightly sponge bath.

Patti is not only ‘non-ambulatory’ but unable to reposition herself in bed, or by definition ‘bedridden’. Now you have learned something new to kick off Multiple Sclerosis Awareness Week.

Where two CNAs are needed to complete the task whenever I am there it only takes one plus me. MS fatigue never enjoys waiting.

Patrick Leer

Health Activist:

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

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

Thursday, March 07, 2013

where is the cure for Multiple Sclerosis

March is designated Multiple Sclerosis awareness Month. This March is our 28^th year of living with Multiple Sclerosis as a family since Patti’s diagnosis in 1985 of ‘probable MS’ ... where is the cure?

She cried so uncontrollably upon hearing her diagnosis that her neurologist’s office called me to pick her up rather than have her try to drive.

This PSA by NMSS first run in 1994 is IMHO the best ad I have ever seen for MS. It portrays a year living with MS. Now multiply it by 28 and you get the idea.

Since 1989 ‘spousal caregiver’ has supplemented the label husband. Last year a diagnosis of lung cancer was added to my labels.

Since this could be my final MS Awareness month, I’m going to speak my mind.

Multiple Sclerosis comes down to ‘activities of daily living’ when you lose your abilities for dressing, eating, ambulating, toileting, and hygiene you become dependent. For the last several years Patti lives in a long term care facility. She requires a team of assistance to complete any and all the activities of daily living. MS cognitive symptoms including dementia have made piecemeal of her brain, preventing her from even remembering I have lung cancer.

“Cruel and unusual” punishment is prohibited by the Bill of Rights to the US Constitution. Patti did nothing to warrant life imprisonment in her own malfunctioning and declining body.

What about the collateral damage of MS to family from my shortened life expectancy to our daughter.

Since Big Pharma found a new and profitable market in maintenance medications for some people with milder Multiple Sclerosis there has been a tendency to sugar coat MS. That coupled with the disappearance of those with severe MS from the dialogue whether in social media or mainstream media, I worry that focusing on the cure is taking a back seat to the more profitable maintenance medications.

Patrick Leer

Health Activist:

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

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

Saturday, February 16, 2013

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/

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/

Saturday, February 09, 2013

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/

Wednesday, January 23, 2013

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/

Saturday, January 19, 2013

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/

Saturday, January 05, 2013

Care cannot be found in a Hallmark store

Writing on Patti’s wall calendar after an outing last night still has that freshness of well ... the first week of the year. J

While in the other universe of my personal day planner I have spent the better part of the first three working days of the year on the phone, on hold, faxing or waiting for call backs regarding health insurance. Long story made short at one point or another we have ranged from no health insurance through two health and prescription plans and cards each … to eureka! the way it’s supposed to be.

Once I calculated that I had spent over 1,000 “billable” hours on the phone, on hold, filling out forms, correcting billing errors, and so on related to Patti’s health insurance and prescription plan … and that was just the first year of the care facility era of Multiple Sclerosis - in the preceding homecare era, the luxury of actually keeping a record of time was impossible.

Back in those homecare years I was also somehow juggling basically single parenting our daughter. Ever been a soccer mom? PTA President? T-Ball Coach? Gone clothes shopping for a girl as a guy? Help with homework? Hug away tears? … Plus when MS knocks Mom out of the picture a Dad’s got to make the time to teach a daughter the intangibles of life like how to play in a waterfall and climb a mountain to pet a tadpole. …Forget day planners no parent can count those kind of hours.

The care facility era for our family began just a month before our daughter’s 16^th birthday and if you think the teenage years involve any less parenting time, you obviously have not raised a teenager.

This past year, if my life were fiction it could be criticized as ‘jumping the shark’ with my diagnosis of lung cancer. Unfortunately it’s not fiction though consequently dotting the i’s and crossing the t’s of lung cancer has taken more than a shark bite out of what non-existent time existed.

For most long term caregivers I know I’m preaching to the choir but for ‘others’ who measure success in life by tangibles, can you begin to see how quickly long term caregiving changes your life in both the now and tomorrow. This cumulative time has to come from somewhere in your life.

Care cannot be found in a Hallmark store, most days neither a “get well soon” card nor a “sympathy” card will do. It’s all about the time you make.

“And in the end … The love you take … Is equal to the love you make.” (The Beatles)

Patrick Leer

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

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