Thursday, May 24, 2007

Caregiving: driving to and from home

Sometime ago I read a journal / photo entry about the first couple miles that you travel to and from your home, and how that may affect you.

It certainly seemed like a fun way to share our little slice of South Central Pennsylvania.               

0.2 mile - end of our residential street …


0.5 mile – yes, a bison ranch …


1.0 mile – railroad crossing ...


1.5 mile – horse farm (white egret not always guaranteed)


2.0 mile – more horse farm …


Now, do the above two miles affect my mind set as I drive away or return? I admit it is a good question. 


Caregivingly Yours, Patrick Leer

Tuesday, May 22, 2007

Caregiving Metaphysics FAMILY

They were children of the “Roaring 20’s”, then teenagers of the “Depression”. They were 19 when the Japanese attacked Pearl Harbor and World War II ushered them into adulthood. My Mom was a Jersey girl. My Dad was a city boy born and raised in Washington DC. ... 10 years ago, they died within 4 months of each other.

Do your parents or family have anything to do with your sense to “care” or to be a caregiver? The talking heads of psychobabble will certainly charge you money or sell you books to answer such questions.

My Mom was a career RN specializing in psychiatric nursing. My Dad’s career was in the “US intelligence community” retiring as Director of Security for the National Security Agency in 1981. As their first born, they were a loving and interesting team experimenting with parenting.

Retirement years didn’t quite play out as planned. My Mom suffered a stroke (a 1% - 3% chance) in intensive care while recovering from coratid artery surgery to reduce her stroke risk. Rehabilitation did buy her several more years before her abilities and health declined. My father became her home caregiver.

(The beginning of my own spousal home caregiving journey preceded this by a couple years.)

Even though diagnosed with pancreatic cancer almost a half year prior to my Mom’s death, my Dad concealed his death sentence for as long as he could. Praying that he be allowed to live just enough longer than my Mom so that she would not be left alone.

Parents transfer values in a zillion indirect ways than they ever do in well intentioned “talks”.

Two years later my younger brother and only sibling died.

Those were challenging years by themselves. Yet caregiving is a trump card it prevails over anything else that happens.

Juggling spouse caregiving as Patti declined physically and mentally from MS and ‘basically’ single parenting our daughter through the Elementary School years kept me focused on ‘the living’.

Caregivingly Yours, Patrick Leer

Tuesday, May 15, 2007

Caregiving: war with bureaucracy

Prescription plan coverage and the war of attrition with bureaucracy have occupied too many entries in this journal. The sad reality is that this is the reality of living with MS for us. 


2007 has rewritten all the record books for my time involved in this yearly exercise. Yes it is uncountable, uncompensated hours every day of every week. Endless frustration looms day after day. As out of pocket prescription debt grows into the thousands it begins to take the air out of each morning’s first breath.


Every year some tiny change in prescription plan insurance creates a collapsing domino effect through Patti’s private plan and it takes X amount of time to get it all restored. In 2007 because there was a change in prescription plan carrier it took over 4 months to get it fixed, the all time record.


I am grateful beyond words that we even have prescription coverage. I never want that gratitude to be lost in the frustration of bureaucratic bungling. Too many people have no coverage.


It just leaves you increasingly uneasy. Living with MS or any chronic illness is expensive. When you do communicate with the bureaucracy of health care insurance it is because you are in need of help, debt and or pain fuels frustration.


Instead you are greeted by electronic voice answering systems requiring you to choose from this menu or that and do you want Spanish or English, then repeating this greeting in electronic Spanish.


Please “say” your account number … “I’m sorry that answer did not compute, please return to the original menu and begin again.”


When you do finally get through to a live person they need to “review your file, please hold.”


For over 4 months, War with Bureaucracy has consumed (or put ‘on hold’) too much of my life …


Caregivingly Yours (Caregivingly El Tuyo), Patrick Leer

Wednesday, May 09, 2007

Caregiving: scootering through dandelion clocks

With a streak of dry Spring days the flood retention field behind our house had transformed to a fairy land of dandelion clocks. 


Our neighborhood has walking paths carved throughout including green space and traversing the flood retention field which are also excellent for scootering.


Patrick: “Patti, you cannot see more than a few feet ahead. Doesn’t charging ahead at 5 MPH bother you?”

Patti: “No, it’s fun. What does it matter?”


A navigational trick I have developed is to have Patti follow my voice. Some days I find myself in an impish mood.


Patrick: (prancing and chanting in munchkin pitch) “Follow the black stone road, follow the black stone road”.

Patti: (laughing and cursing) “You are one sick mother f*cker!”


Hearing such language, I switched my singing navigational cues to “Ding Dong the Witch is Dead” only to hear the scooter behind me accelerating along with more alternating laughter and gutter-mouth threats to run down munchkins. Is nothing sacred?


While this was a fun outing on a magnificent Spring late afternoon and Patti always “feels” better after scootering, two Multiple Sclerosis symptoms were also demonstrated.


Charging forward unable to see is why unattended scootering ended in the first place over a decade ago. Patti was driving off curbs, flipping her scooter, etc. Deterioration of her thinking and reasoning abilities prevents her from thinking through consequences or risks.


In recent years “inappropriate language” has progressively occupied a larger percentage of Patti’s daily vocabulary. It is a weird symptom and unquestionably can impact public situations. For Scrabble players and or fans of neurology this has its roots in symptoms of ‘emotional lability’ and ‘pseudobulbar affect’.


However, they are only ‘symptoms’ not Patti. Caregivers, family, and friends have to remember that and adapt any situation for anyone in need of care to make the best of possible times.


Dandelion clocks tell time in ‘fairy time’ and it’s always different for every person. Maybe that’s because everyone chooses to do something different with the time we are given.


Caregivingly Yours, Patrick Leer

Thursday, May 03, 2007

Caregiving: "inadequate caregiving preparation"

“…The findings are significant because inadequate caregiving preparation can result in decisions or actions made in a crisis mode…”


Women Expect to Care for Aging Parents

but Seldom Prepare


Click on blue headline above to open the article from Caregiver’s Home Companion.

Caregiving: how MS works

I am continually struck by the potential of You Tube or other Internet video broadcast portals to communicate. For years we have used our “wire” below to offer a 50 words or less crash course in Multiple Sclerosis. Recently I found the following two minute animation on You Tube explaining MS. If interested in how MS works, it is worth the two minutes of your time. 

Click our You Tube Channel Caregivingly Yours for easy access to all eight of our ‘living with MS: …’ videos.


Caregivingly Yours, Patrick Leer

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