a caregiving coin has two sides hope and denial

Hope and denial are two sides of the same coin and always have been. Much of what we lived through this past quarter century is likely true for others facing long term progressive chronic disease such as Multiple Sclerosis, or a shorter term diagnoses such as Alzheimer’s.

Transition to the care facility era is less about a continuum of care and more about an inevitable cataclysmic change that precipitates transition.

Denial is seductive. Homecare or bust was essentially a knee jerk ‘macho’ response on my part.

Long term caregiving is hazardous to your health. Now facing my own diagnosis of lung cancer, thoughts of never knowing how Patti’s story ends chase concerns for my own homecare through dark dreams.

Today is the sixth annual World Autism Awareness Day and as a family home caregiver of a quarter century I find my thoughts pausing on the parents and family of all special needs children.

More than me or other spouse caregivers or family members caring for aging parents; these loving parents of special needs children face the daily mathematics of not only their own 'what if', but inevitable 'when' balanced with a smile of encouragement and love for their child to brighten any day and any tomorrow.

Please make a moment today to pause and think of these parent caregivers - they represent the best of us. 

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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/

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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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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

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