Tuesday, March 27, 2007

Caregiving: cognitive turning point

Cognitive impairment is the turning point in home caregiving. When reasoning and thinking abilities become faulty the other side of that coin is ‘at risk’. Caring is now faced with custodial accountability for another person … Safety demands you cross this Rubicon. 


One exercise that a neurologist might charge you to administer and analyze is the “animals in a minute test”, asking a patient to name as many animals as possible in 60 seconds. Able minded people “should” be able to name at least 13 animals.


While Patti enjoys herself in this You Tube video it does take her twice that time and the assistance of blatant coaching and hints to successfully name the animals.

Failing to name 13 animals in 60 seconds “could be” an indication of fronto-temporal lobe dementia. That’s a moot point here because in Patti’s specific course of progression of Multiple Sclerosis her frontal lobe and associated functions was an early victim.


MS has ‘invisible symptoms’, this is just about trying to capture and share one of them that most impacts caregiving … and have some fun while living with MS. Laughter is a treatment, even though not FDA certified. 


I want to acknowledge Tammy of Blogger journal The Daily Warrior for reminding me of this particular test and Megan and Jennifer for their 'consultations' and support with this video production.


Caregivingly Yours, Patrick Leer

Friday, March 23, 2007

Caregiving: the ONLY true sign of Spring

In these first days of Spring, artists of every medium bury us in the ‘signs of Spring’. 


As a chocolate predator there is ONLY one true sign of Spring, hollow chocolate bunny rabbits.


Patti’s MS impairs her from ripping off the head in proper fashion. Photos of her hollow chocolate bunny rabbit mutilation would have been too graphic. <grin> However among us chocolate predators, who cares about style points?

Caregivingly Yours, Patrick Leer

Caregiving: ... from National MS Society

Hi, I hope you are doing well. My name is Annie Hammel and I work for the National MS Society. I’m writing because you have a very popular blog that discusses life with MS. I wanted to forward on some exciting and useful news that we hope you can help us spread. 

The National MS Society has been chosen as one of nine global charities to be part of Microsoft's new "i'm" initiative!

Every time a customer has a conversation using i'm, Microsoft shares a portion of the program's advertising revenue with one of the nine non-profits in the campaign. Microsoft will make a minimum $100,000 guaranteed donation to each of these organizations during the first year of the program, with no cap on how much the organizations can earn!

Customers can participate in and learn more about the i'm Initiative by joining at http://im.live.com  and downloading the latest version of Windows Live Messenger.

If you feel it is appropriate, we would really appreciate it if you would please share this with your readers. We would love to get the word out about this generous program Microsoft has included us in. Not only is it raising funds for the MS movement, it is bringing worldwide awareness to this disease.

Best,Annie Hammel

Wednesday, March 21, 2007

Caregiving Metaphysics Religion/Faith

WHY? … As a caregiver the more you ask WHY you realize any answers are not of this world. No shrub, flaming or otherwise, has ever spoken with me and neither preaching nor proselytizing is my calling. This is only about trying to live with “why”.

“Care” is rooted in the “Golden Rule” universal to ALL religions. Do to others as you would have them do to you. I’ve met caregivers from all theologies and those who practice no traditional denomination. In 22 years I’ve observed no advantage or disadvantage to any particular religion in regards to caregiving.

Religion and faith are not the same. Faith is belief beyond known fact. Faith in something greater than myself is critical to caregiving.

I suspect many caregivers feel like they were on that proverbial road to Damascus with a world of different plans in life when suddenly “redirected”.

Patti believes what I am matters, so at the risk of sectarian violence I will again briefly pull back a curtain. My maternal grandmother was an immigrant from Ireland and my bedrock is Irish Catholic.

What’s the difference from Roman Catholic? In a nutshell, one is pragmatic the other dogmatic. Sprinkled with Druid DNA, Irish Catholic is more embracing of the natural world than our Roman cousins. <grin>

People have shared with us that, “The Lord works in mysterious ways” enough times over the 22 years since Patti was diagnosed with Multiple Sclerosis to probably qualify for an entry in the Guinness Book of Records. … PLEASE think of a more creative way to express that thought.

Those ‘mysterious ways’ challenge faith. As the caregiver, watching Patti decline (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 lighting bolt’ threshold. … I admire those with rock solid faith.

For me, T. S. Eliot captured it best in his poem "Ash Wednesday":

“…Suffer us not to mock ourselves with falsehood

Teach us to care and not to care

Teach us to sit still

Even among these rocks,

Our peace in His will…”


Saturday, March 17, 2007

Caregiving: a robin in the snow

Enjoying Friday morning’s coffee I watched a robin hop through the falling snow. Could there be any thing more beautiful than a blanket of fresh fallen snow against a door?

Budding spring gardens hide in embarrassment at the majesty of snow on a branch.

Believe it or not only the 3rd snow storm of the entire Winter and all have come between Valentine’s Day and St. Patrick’s Day. So much for weather forecasting Ground Hogs and an early Spring. <grin> 

Happy St. Patrick's Day to all from South Central Pennsylvania with 10" of magic to welcome the morn'.

Friday, March 16, 2007

Caregiving: wheelchair accessible van

Our wheelchair accessible van entered our lives only a year ago even though Patti has been using a wheelchair and/or scooter for at least 15 years.


I refer to it often enough so I thought it was time to show those unfamiliar with such a machine how it works (in under two minutes <grin>). Click video to play.

Thursday, March 15, 2007

Caregiving: Scooter-cize

Patti’s RASCAL SCOOTER is a wonderful pace vehicle for my own exercise. With warming temps and the new daylight savings time we’ve been able to work close to 2 miles into each late afternoon.

Get your motor runnin'

Head out on the highway

As long as I can find isolated enough roads or wide enough paths to accommodate the wide drifts of her MS visually impaired driving she’s not only fine but LOVES the freedom of scootering. Scootering also has a noticeable overall positive effect on Patti’s MS symptoms in general even though it is short term.

Racin' with the wind

And the feelin' that I'm under

When I walk on my own I loose the additional health benefits of a consistent faster pace. At top speeds of 5 mph she sets a brisk pace for me from ‘power walking’ to jogging to keep up with her.

Two weeks ago I underwent a Nuclear Cardiac Stress Test which I passed with flying colors. (even got a smiley face on the follow up note from my nurse practitioner <grin>)

Why the test? During my Cluster Headache episodes I take Imitrex more frequently than any published tested levels. Imitrex at far lower dosages has been known to induce heart attacks. I smoke and 22 years of stress as a spouse caregiver takes a toll.  

I made it the distance on the ‘treadmill from hell’ and my heart glowed just fine with all the radioactive isotopes flowing through my blood. … At least I know I’m not the Tin Man, I saw that I had a heart.

Caregiving is exhausting but regular exercise can never be underestimated.

Time is unavailable to caregivers but it can be found creatively such as keeping up with a wild woman on an electric scooter for a couple miles. <grin>

Tuesday, March 13, 2007

Caregiving: family outing

Multiple Sclerosis may shape circumstances. MS does not ‘define’ family. Living with MS as a family, Patti is totally dependent on others, as she has been for much of the last 10 years. 


Sunday was a typical ‘family day’ centered on a movie theatre outing.  The mega screens and the right movie choice can negate her MS symptoms of visual impairment and cognitive and attention span challenges for an hour or two. Simultaneously a movie is entertainment for the rest of the family.


Wildcards always loom such as MS related Dysphagia triggering choking or emesis, and/or the absence of bladder and bowel control. Newbies may balk at these wildcards, with time you learn to live with them, be prepared, and hedge your bets. If a psycho astronaut can drive a thousand miles in a pair of Depends, then Depends can get Patti through a two hour movie.


Choosing “300” this past weekend was a surprise. I can’t remember the last time that Patti, myself, and our daughter (home for spring break) all agreed on amovie choice. <grin> 


As often happens when we arrive at a popular movie, the designated companion seats adjacent to wheelchair cutouts were all occupied and embarrassed patrons sheepishly begin to play a game of getting up and milling about while waiting to see which seats we actually take before racing to grab the remaining seats like musical chairs. <grin>


“300” was enjoyed by all and uninterrupted by MS symptoms. While it could not have been a better outing, plans to visit for dinner afterwards were torpedoed by loss of bowel control in route and we reversed course home for changing and clean up.


Lacking the lifts and multiple personnel of a care facility this is easier said than done. However, it CAN be done. 


You get past it and adapt. MS may shape the day but it cannot define family, only the family can do that.


Not unlike the “300” some CHOOSE to define and guard their own Thermopylae.

Friday, March 09, 2007

Caregiving: MS Awareness Week (alternative 4)


Oversimplified, yes, but the above piece of electrical cord has been our family’s ‘quick and easy’ MS teaching aid for years. 

Thursday, March 08, 2007

Caregiving: finally SNOW


Caregiving: MS Awareness Week (alternative 3)

The wheelchair accessible van era almost a year ago enabled Patti’s first return to a grocery store. She was as interested and excited as if I was pushing around a third world visitor. <grin> Yes, it had been years but it was amplified by her Multiple Sclerosis progression of memory and cognitive loss.


We simply plunk a store basket in her lap and make frequent shorter trips to accommodate the paradox of her enjoyment but shorter attention span. 


Usually it’s challenging to get Patti started in conversation but handing her things to put in the basket unleashes chatter, though unpredictable. <grin>  … “I don’t want this, you can have it back.” … or “YUCK!” … or “I like this, I remember …” 


It’s a different and fun dimension. Additionally it exposes Patti to and causes her to ‘think about’ the processes of living, prices, products, necessities, and such. When everything is done for you it is easy to forget “how” it all happens, especially when MS is attacking your ability to reason and process information. Frequent and fun outings to the grocery store create a kind of casual cognitive rehabilitation. 


Following a German III class, our daughter observed that our more frequent grocery trips were “European Style”. That has a classier ring to it than running to the grocery store every other day. <grin> 


What Patti has lost in vision has been compensated with sense of smell; she can FIND the pickle barrel like a hound dog. The produce department, deli, seafood, and butcher counters are particularly enjoyable not only because of smell but they are essentially interactive. Counter attendants are suckers for people in wheelchairs. <grin> 


Whenever I encourage her to get anything she wants on her own. I watch as she rolls a few feet, stops, and returns - “I forgot what I wanted”.


Self check out for some reason entertains Patti. She however feels the voice prompts are too polite. Tuesday evening in response to the computerized voice asking “Do you have any coupons?” Patti lost control of her own voice volume and shouted back, “NO! and you can kiss my a#*!” before falling apart laughing heartily. … Yes, it’s live from MS Awareness Week! <grin>

Wednesday, March 07, 2007

Caregiving: MS Awareness Week (alternative 2)

Stopping by Giant Food last night with Patti it occurred to me that grocery shopping is a common denominator task anyone can relate to and might serve to help understand living with Multiple Sclerosis for our ‘alternative’ MS Awareness Week. 


In the earliest years of MS, while still walking, Patti’s shopping would be disrupted by sudden fatigue or problems of balance while trying to stand or reach for an item on a shelf. Facing long check out lines could lead to an abandoned cart because fatigue was overpowering.


With the advent of the scooter era, Patti would actually ride her Rascal Scooter to the local grocery store. Her visits were not only restricted by the capacity of her scooter basket but by logistics of a store built and designed for people walking upright.


Before today’s ‘super stores’, aisles were so congested with displays that they were nearly impossible to maneuver through with an electric scooter. Patti would find herself navigating through a tightening maze … and more than once rammed a display. Intentional? I can only speculate. <grin>  


At your next visit to a grocery story just look at how few items are really within reach of someone in a sitting position. When you notice an unattended shopper in a wheelchair or scooter looking up at a shelf, have you ever asked “Can I reach something for you?”


With visual impairment progressing to legally blind the era of independence ended. Additionally transferring Patti to and from her wheelchair to our car became increasingly challenging and undependable. Patti’s visits to a grocery store simply ended and disappeared from Patti’s experiences for years.


Hunter gathering became solely a caregiver task.


Patti as a formerly able-bodied able-minded person fought valiantly to adapt and survive as the metamorphosis of MS enveloped her body and mind.


Grocery shopping is only one simple common denominator activity to help translate MS. In reality ‘every thing’ you previously took for granted changes. 


That was ‘then’ … tomorrow I’ll share about ‘today’.


P.S. If ever considering an electric scooter? … Patti’s Rascal Scooter is over 15 years old and runs like a champ. She used to travel on local roads driving sometimes 10 miles a day or more on errands. She’s pulled sleds through snow, and been able to be part of family activities on all terrains. 

Tuesday, March 06, 2007

Caregiving: MS Awareness Week (alternative 1)

While the NMSS is proud of their new advertising agency Wieden & Kennedy; I personally am left wondering if able bodied, able minded marketing firms ever really grasp what “living with MS” is really like. 


I read that Wieden & Kennedy (clients include Coca-Cola, Nike, Starbucks) worked pro bono designing the “Join The Movement” campaign. Kudos to their altruism!


We on the other hand live with Multiple Sclerosis in a near parallel universe to the media image. So I’ll do my best to offer an alternative ‘Real’ MS Awareness Week of “living with Multiple Sclerosis”.


Currently I am beginning the third month of trying to stabilize Patti’s private prescription plan coverage. This happens every year with insurance carriers both private and government seizing year end changes in laws, policies, and carriers to fish new streams for profit.


Dumping a person with a 22 year history of Multiple Sclerosis, or finding a loop hole to cancel or avoid payments seems to be the “principal” of the business of US healthcare insurance. That the person in question has serious cognitive challenges is like blood in the water to sharks. … The caregiver is the ONLY line of defense.  


Medical insurance and prescription plans are REAL issues when living with MS. Multiple Sclerosis is a chronic illness, Patti has been diagnosed for 22 years. Insurance plans change, carriers change, employment changes, life changes – but MS progresses. Medical needs increase.


Medical and prescription insurance plans turn even the simplest change into a war. The anxiety, the worry, the increasing money, and exponential increases in time devoted to this one area devour us.

Monday, March 05, 2007

Multiple Sclerosis Awareness Week

Multiple Sclerosis Awareness Week

March 5 – March 11

                                                      JOIN THE MOVEMENT

Clicking the button above will display this year’s campaign by the National Multiple Sclerosis Society (NMSS).

Sunday, March 04, 2007

Caregiving: 1,000th You Tube viewer

“Living with Multiple Sclerosis” is not exactly a formula for a light n’ lively sitcom, nor is it all gloomy. It’s simply a journey shared. … How best to share this information? Well, I simply blunder along chasing technology. 


Sometime yesterday the 1,000th viewer watched our debut broadcast on You Tube, living with MS: wheelchair rollin’  (Originally posted October 5th, 2006 and embedded here again for this anniversary benchmark).

200 people a month, on average, watch this one 3 minute video slideshow on You Tube accompanied to “Proud Mary” by Ike & Tina Turner.


50 people, I estimate, read any single Caregivingly Yours, Journal entry. (A formula of hit counter divided by months divided by average number of entries.)


Journals and You Tube can no more be compared than apples and oranges. Yet it seems if you have a message to share, then people ARE “watching”.


…. except Stardust who 'needs' only a sunny window.

I want to thank Jackie of AOL Journal Life In Bama. Like a cyberspace muse, she encouraged me this past Fall to stumble my way onto You Tube.

Click on the following link if you would like to visit a menu page of our six You Tube broadcasts to date …


Friday, March 02, 2007

Caregiving: anxiety slithers

While Multiple Sclerosis cognitive challenges “affect” Patti …


As a caregiver there are times anxiety slithers across whatever I’m doing. What ifs, derailed dreams, and future fears ricochet about like pin balls. Sometimes it is easier or more bewildering to get under control.


I always need to remind myself to be careful not to view interactions with Patti from an able bodied / able minded perspective. Since like most caregivers I walk in both worlds sometimes the switch can get stuck.


Engage on whatever level is available. …  Avoid words/concepts such as disappear, loss, etc. Whatever challenges memory and cognitive impairment may present they are really challenges primarily to me on the outside looking in.


Humor is simple yet potent. The cognitive processing of humor involves so many parts of the brain it may be the best of possible ‘mental work outs’. Plus this is the USA; culturally we are not a people of sophisticated or complicated humor. Anyone can be funny enough. Don’t let your own frustrations or intimidations with someone else’s health prevent you from trying.


Reality will always be waiting for you.  


“When we remember we are all mad, the mysteries disappear and life stands explained.”    Mark Twain

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