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/

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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

caregiving and cell phones

If someone you care for is unable to explain their health care needs to medical personnel it might jeopardize their life if you as power of attorney (POA)/medical advocate cannot be reached.

This fundamental truth does not change with the care facility era.

Recently I have found myself in conversations with a newbie to the care facility era about cell phones.

As I type this my mouth is still hanging open over the thought of leaving my cell phone at home by error much less on purpose daily. … Years into this I still take my cell phone into the bathroom with me, just in case Patti's care facility calls.

Having faith in an institution is wonderful but that is an assumption and we all know what happens when one assumes (Assume = Ass out of U and Me).

24/7 care has not changed that I try to be reachable and ready to respond 24/7.

I get that confidence can seem coolly detached and may even be encouraged but if the door swings both ways then the other side would sure seem cold-hearted to me?

Practically speaking something could happen to an escort/companion from a care facility. How would they even recognize that the personal medical history is wrong? Case in point, about two years ago Patti was taken to an orthopedic specialist except her ‘professional’ facility companion brought someone else’s x-ray.

Calling me on my cell phone while she was still there I was able to talk them through how to find the correct x-ray on line so the appointment could be successfully completed – otherwise the whole trip either would have been wasted or worse.

I even have mine programmed for a specific ring tone for Patti’s care facility so if driving, in a meeting, or in the shower (I can always turn the water off) whatever it does not matter – I answer.

My phone is not even 'smart' it does nothing except send and receive calls. 

Kids! They have a whole new way of thinking.

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

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/

care facility multiple sclerosis caregiving

first push, round food and Multiple Sclerosis

Another New Year’s Day and time to turn the page on the “wall of all bullshit” as Patti jokingly refers to her oversized wall calendar.

Arriving at Patti’s care facility with her 2013 wall calendar I was somewhat surprised by the interest of several other residents in the calendar. Where do you get Patti her calendars? Where can we get one?

Long ago in the homecare era I started buying them because of Patti’s fading vision. Now in the care facility era while Patti can no longer even read something this big I know that aides, nurses, and even Patti’s doctor will refer to it when asking her about outings, important dates, and visitors.

New Year’s traditions are curious to say the least. There is enough Scot DNA in me to justify a care facility variation of “first footing” I’ll just label “first pushing”. The tradition is about visiting/pushing and it’s considered particularly lucky if a tall, dark, and handsome man is the first to push your wheelchair after the new year is rung in. J Then again Patti is legally blind and will forget anything shortly so whether I was a hobbit or Clark Gable the pusher was soon insignificant as the year’s first push and roll became even luckier enveloped in snow flurries.

Many cultures believe that anything in the shape of a ring is good luck, because it symbolizes "coming full circle," Additionally in the US, pork is considered lucky because it symbolizes prosperity. Sooo we finished off the first outing of the new year with an all-round dinner of pancakes with pork sausage patties on round plates followed by donuts for dessert.

After returning Patti, preparing her for bed, transferring her myself from wheelchair to bed and tucking her in I left the cover page of the 2013 calendar at the nurse’s station just in case the interested residents wanted to let their families or friends know (or any reader is interested) the calendar is available at At-A-Glance, item # PM4-28, 20” X 30” XL, 2013 Wall Calendar.

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