Thursday, September 30, 2010

flu shot shout-out

Annual vaccination for the flu is a no-brainer for caregivers, family, and friends that care for or live with people at risk for influenza-related complications.

Additionally a caregiver down with the flu is not only a non-caregiver, but even the comfort of visiting or companionship becomes risk as you can infect others beginning 1 day before symptoms develop and up to 5-7 days after becoming sick. 

If you cannot care for someone then someone else has to and on it ripples.

More at Centers for Disease Control and Prevention (CDC) Seasonal Influenza (Flu) 

All 3 flu vaccinations in 1 shot this year! 

Plus there is this out of Great Britain ... Flu shot linked to REDUCED heart attack risk

Often the challenge is simply trying to find and get a flu shot between obstacles of time, locations, availability and more. After frustratingly trying a publicized Pennsylvania State flu shot locator I figured it was going to be another difficult year.

Monday, on a rainy cool evening outing, I dashed into Target (always bemusing Patti with the ‘Tar-zhay’ pronunciation) for a hot chocolate from their in-store Starbucks and was greeted by a Target Flu HQ campaign rivaling Halloween merchandising.  (and somehow not listed on PA flu shot locator)
Returning the next day I treated myself and our daughter to 2010 flu shots. Patti gets her flu shot through her care facility.

Advertised at $24 we discovered our AAA membership was worth a 33% discount, bringing the price to $16.

Outside of a form to fill out there was no appointment, no hassle and no wait. Pharmacist gives the shot, and one of the kinder and gentler shots I have ever had.

Additionally for each shot we got a booklet of $40 in ‘cold and flu’ season coupons, over half of which are products I actually buy, and for the pièce de résistance a tub of Dum Dums to pick from!

Wonder if I can choose Target for my health care plan under Obamacare?

Flu IQ

Caregivingly Yours, Patrick Leer 

Tuesday, September 28, 2010

life expectancy facebook of multiple sclerosis

While Big Medicine offers statistics, in the 21st Century people can communicate a bond of feelings about a shared anxiety of living with Multiple Sclerosis, life expectancy. (from a Facebook comment stream)                 
"my neurologist team are adamant that, while life expectancy is, at the moment anyway, reduced marginally, it will not kill you"
 "at our recent rally in Canada, a list of people who died of MS was read.... You see, people die of MS all of the time, and the complications it causes to long-term health.....if they didn`t have MS …they`d still be alive." 
"are we taking into account the amount of people who have died from taking meds to treat their MS, like Tysabri and now this new drug Fingolimod" 
"suicide and euthanasia rates are exponentially higher in the MS community than in the general population" 
"I was told MS is incurable, it is not fatal" 
"MS can kill, it does happen and we know it does. And it doesn't matter what the play on words is the truth is the primary illness caused the secondary.....and therefore death." 
"you dont die of MS but of complications. Think of it like one dies of AIDS but complications from it." 
"I've lost 6 friends to MS already, some under 50, they died because they could no longer breathe or eat, so I think the neuros saying you die from 'complications from MS'... is a point that has always irritated me with neuros." 
"my first neuro said I had Marburg MS. That is a death sentence. … Thank God that neuro was wrong in my case" 
"this is what the MS Society says about life expectancy:"  
Life expectancy is the most understandable question with any incurable diagnosis, neither statistics nor smiley faces will chase the albatross away.

Living with Multiple Sclerosis is the original “it’s complicated” status. Perhaps the touch of family and friends can help tip expectancy from apprehension to hope. Answers are in hearts whether broken, brave, or caring.

Caregivingly Yours, Patrick Leer 
web site:
musings: patrick ponders

Sunday, September 26, 2010

music for caregivers

There can be so much noise in the head of a caregiver / carer that it can be almost impossible to focus. Your hands may be pushing a wheelchair, changing Depends, or assisting with a transfer but your brain is everywhere, endlessly reprioritizing your ‘to do’ list that never will be accomplished.

Recently I have been reading about music therapy in caregiving. Needless to say these articles are focused on patients. Helping to revive dormant memories, retain new information, palliative care, even how caregiver singing may improve communication between patient and caregiver. Broadway are you listening? A musical in a nursing home setting is just waiting to be written for the graying of America.

What about music for caregivers / carers? Some Google hits offer music as a stress reliever. Somehow, I just do not picture myself laying in a hot tub with scented candles listening to Vivaldi.

I do use music to motivate myself though more in my head not in earbuds attached to an MP3 player. If I’m dragging or my back is sore and debating maybe skipping an outing with Patti, I just call up parts of songs to get me back on track.

For example here is a minute of how my head works. 

There is head noise whether homecare or the care facility era, whether caring for spouses, or children, or parents, or relatives or friends simply because it all demands time you do not have, it is physical and it is emotional.

When I find myself in the right music the noise parts like Moses parting the Red Sea  … Yeah, yeah I know the simile is a stretch since I’m pushing a wheelchair and not riding a chariot but you get my drift.

What’s in YOUR head?

Caregivingly Yours, Patrick Leer 

musings: patrick ponders

Monday, September 20, 2010

hubris is a disease

"The fact is that we would have had comprehensive health care NOW, had it not been for Ted Kennedy's deliberately blocking the legislation that I proposed” former US President Jimmy Carter said. “It was his fault. Ted Kennedy killed the bill."

Slack jawed I’ve surfed the net over this squabble absolutely stunned that ‘pundits’ and news seem more concerned with political legacies than ‘getting’ the toll this bickering cost.

30+ years of people’s health, life and death have been impacted. Big Pharma and Big Medicine have infected the US economy perhaps irreparably. Rising medical bills have cost many families everything. U.S. residents without health insurance soared to a record high last year as employment-based coverage plummeted.

Championing health care reform in the 1970’s, Sen. Ted Kennedy trumpeted, “We are the only industrialized nation in the world outside South Africa that does not have universal, comprehensive healthcare insurance.”

Kennedy pulled out of a comprise bill with then President Gerald Ford. OK I can get why accept compromise when waiting a year or so and the Democrats might put together their own. 

Of course no one, not even his mother, envisioned Jimmy Carter winning the Democratic Party nomination.

However he did and went on to win the 1976 US presidential election. Now with control of both the White House and Congress health care reform became a squabble between Carter and Kennedy centered around implementation.

“He (Kennedy) did not want to see me have a major success in that realm of life,” Carter said.

Neither would blink and history swept the moment in time aside. Sen. Kennedy chose to challenge President Carter in the Democratic primaries of 1980. Beat Carter, beat Reagan, and then he could push through the legislation he wanted. … Sigh! Hubris is a disease.

Decades have passed, real people’s lives and health have been affected every day.

Time magazine in 1979 reported that health care reform could cost an estimated $130 billion. What are we talking these days in the trillions?

Whenever a man has cast a longing eye on offices, a rottenness begins in his conduct.  
~Thomas Jefferson

Caregivingly Yours, Patrick Leer 
musings: patrick ponders

Friday, September 17, 2010

jumping through hoops for ID

Locally banks are open in the evenings until 8 PM, grocery stores are open 24 hrs a day, but PennDOT (Pennsylvania Department of Transportation Driver and Vehicle Services) locally has only one day a week with extended hours until 6 PM. We are talking State employees, who works for who here? 

Throw in Multiple Sclerosis, a wheelchair, legally blind, cognitively impaired, dependent on others and PennDOT may as well make the disability community do tricks to get services.

After two visits finally Patti was able to renew her Photo ID card. In post 9/11 America you really need a photo ID for just about anything.  

I have no argument with the need just the PennDOT process. Our first attempt was rebuffed after renewing on-line and taking the extra step to call ahead and confirm we had everything we needed. Upon arrival we were told we needed yet another form for a renewal photo that was only available during ‘non-extended’ hours.

In round two, the photo taker says to Patti, “the computer screen will now display a series of questions. Please read and answer yes or no by entering a …”

Patti: (turning to me) “What the f#ck is she talking about?”

I try to explain that Patti is not only legally blind but has Multiple Sclerosis symptoms of memory loss and cognitive impairment … Regardless the questions ‘must’ be answered! On we plunge ‘reading’ questions about organ donor awareness, voter registration, and is the information on the screen you cannot see correct.

God Bless Patti as she consistently responds to yes or no with, “Who the f#ck cares!”

One last dog and pony show trick remained. Patti had to sign her name in a tiny virtual box with a fake pen. The fact that the counter could not be accessed from a wheelchair was the least of the obstacles for a legally blind person with lack of eye hand coordination, and a shaky hand.

Hallelujah!!! Patti now has a renewed Pennsylvania Photo ID valid for 4 years! In Patti’s words, “NOW can I just get a ciggie!”

Caregivingly Yours, Patrick Leer 
musings: patrick ponders

Monday, September 13, 2010

nothing says hello like emesis

Vomiting as a form of social greeting is not usual but neither is it rare in Multiple Sclerosis caregiving.

Picking Patti up after dinner at her care facility, I was greeted by a smiling, hands up in the air, “yeah” instantly morphing into a pantomime of needing a trash can.

It’s living with Multiple Sclerosis symptoms of dysphagia. One study or another reports dysphagia affecting a third to half of people diagnosed with MS.

Swallowing is an extraordinarily complex neuromuscular activity. Multiple Sclerosis essentially impairs the brain’s ability to communicate. Eating can be a train wreck waiting to happen.

Even factors that may not seem directly related such as coughing or laughing while eating or immediately afterwards can be a dangerous mix.

Obviously one cannot eat in a vacuum and let’s face it eating in our culture is a social function. One cannot fix this so the answer is planning and vigilance.  

Learn the Heimlich Maneuver, and specifically for a person in a wheelchair.

Adapt YOUR social ways for the moment, smaller rather than larger dinning situations. Monitor eating offering verbal cues and prompts as necessary. Separate social and eating until the chewing and swallowing is over.

Able bodied, able minded people only have to give up a meal of their time, a person with symptoms of dysphagia could be giving up a life.

Beyond the immediate potentially fatal act of choking, aspirated food or liquids can also cause aspiration pneumonia, another cause of death in people with MS.

Even the regurgitation of undigested foods can be part of this cycle. Perhaps it was throwing her hands up in the air, perhaps it was the excited “yeah” … who knows? MS is about baffling intermittent symptoms, neuromuscular short circuiting.

Seemingly a lifetime ago we used to dance to …
“Put a quarter in the juke
And boogie 'til you puke”
Root Boy Slim and the Sex Change Band

Now days I try to always have a plastic grocery bag in my back pocket and moist wipes in my man purse. And of course, … for old times sake, a quarter for the juke.

Caregivingly Yours, Patrick Leer 
musings: patrick ponders

Friday, September 10, 2010

loneliness of the long term caregiver

Loneliness can be complicated, yet I suspect for long term caregivers it is simply another unpaid occupational hazard.  
My Wife Has MS: Alone With Multiple Sclerosis “the world can be a very lonely place. When you have a disease like Multiple Sclerosis it seems to magnify those issues at times” 

A Day In My Life: Loneliness “I spend a lot of time at the nursing facility where Jack now lives, but it still doesn't fill the empty void at our home.”

I count the steps from Patti’s room at her care facility to the exit door to force my mind to not think about what is behind me or not ahead of me.

Loneliness happened as our life grew more isolated with long term care for Multiple Sclerosis. Intentionally or unintentionally friends and family pull away, maybe they simply are unsure what to say or do.

Long term caregiving bends time. Physical, financial and emotional demands change you. Friends and family change differently - the gap between widens as the decades go on.

As the caregiver you have to function in both worlds, essentially speak two languages. What are the chances you will bump into someone who can talk about what it’s like to care for a dependent person? Ever try ‘adult diapers’ as small talk?

Conversations involving memory loss may as well be a living etch-a-sketch. Thoughts, words, feelings maybe even one day yourself are simply erased.

Whether homecare or care facility era there comes a passing moment in each day when you are reminded …
“I never cared for the sound of being alone
"I am," I said
To no one there
And no one heard at all
Not even the chair”
Neil Diamond

Fans of psychobabble may label loneliness unhealthy. Then again fans of psychobabble would not ‘get’ caregiving if it bit them on the ass. No one ever chose to be a caregiver for ‘their’ health.

To care is never the convenient path.
Loneliness is not always choice. More than 3,000 children lost parents and over 1,600 people lost a spouse or partner 9 years ago tomorrow in the Al-Qaeda Terrorist Attacks of September 11th.
Caregivingly Yours, Patrick Leer 
musings: patrick ponders

Tuesday, September 07, 2010

Kipona Festival: basically accessible always enjoyable

Sharing a peach milk shake we watched Iroquois social dancing that is until the ‘smoke dance’ was announced. To Patti that meant they can dance, I will smoke. Not sure if that was the correct interpretation but all had fun.
Harrisburg’s Kipona Festival held each year over Labor Day weekend along the Susquehanna River is ranked one of the top five in Pennsylvania. For me pushing Patti’s wheelchair it is also basically accessible, though a thorough workout with probably 5 miles needed to see everything and return to where you started. Miles of paved surface abound though full participation necessitates frequent off-path navigation over ADA exempt Mother Earth.  

Calling ahead to Patti’s care facility to give them a head’s up that I would be picking Patti up earlier than usual; I was greeted by a rarin’ and ready to go Patti. Staff had kindly gotten her up from her afternoon nap, changed, dressed and out of bed. With progression Multiple Sclerosis caregiving becomes quite physical and there is nothing like a 'fall on your knees thank you' kind of moment to start an outing.

Admission is free and always a plus. While there is a parking fee on City Island, the location of accessible parking alone is frankly worth more than the $5 as you literally park in the festival.

With temps of 85°F we were never going to be able to experience it all, but we didn’t care.

Bling shopping at festivals is Patti’s favorite activity. Unlike retail stores the folding tables of vendors are ideal for seeing when visually impaired and touching. Vendors never cease to amaze me with their courtesy and attention to Patti and both her abilities and disabilities. Today’s find was from Suhailah’s Unigue.  

Rolling over the Susquehanna River I am always mesmerized at the picturesque view of bridges while Patti’s view is somewhat more a moving forests of buttocks

Heat eventually trumped and we settled into an uncrowded shady spot simply enjoying the breeze and watching a sternwheeler and the river.
When living with Multiple Sclerosis as a family sometimes you just have to carve out and enjoy your own event within an event, not unlike a dream within a dream.  

Caregivingly Yours, Patrick Leer 
musings: patrick ponders

Saturday, September 04, 2010

if life gives you popcorn ...

Small town Americana sometimes can simply restore your faith in people and what we all are capable of.

Ridiculously hot for a week now, I talked Patti into trying a short outdoor outing to Carlisle’s First Friday, “Hollywood on High Street” to break the monotony of hopping from air conditioning to air conditioning.

While I have no idea what it had to do with Hollywood, George's Pizza and Subs was our first encounter and a godsend serving up free snowballs. More so was the woman serving them. Addressing Patti, “Dearie, I spent almost two years of my life in a wheelchair you do not want one of these paper cones, let me get you a cup and a spoon.” After whipping up a custom snow cone she hands the cup and spoon to Patti. Then with an after thought, places a pile of napkins in her lap, “here have a bunch of these, have fun make a mess!” … They just do not make people like this anymore anywhere!

M&T Bank was showcasing "A League of Their Own" where Patti won a bag of kettle corn in a baseball toss game the ladies of M&T Bank rigged not only for  outcome but genuine shared enjoyment. Bottom line any able bodied person steps out of their comfort zone to engage in physical fun with someone who cannot really see nor has much physical coordination. These were bankers not therapists. Above all they were just good neighborly people.

While there was soooo much more we could have done, 20 minutes in 92°F heat was taking a toll on Patti. Rolling into our Multiple Sclerosis friendly air conditioned wheelchair accessible van, we headed home for more air conditioning and a dinner of grilled chicken breast and kettle corn.

While I doubt you will find that in any cook book, Patti was not to be deterred from her winnings. If life gives you popcorn … serve it as a vegetable. :)

Caregivingly Yours, Patrick Leer 
musings: patrick ponder

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