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 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

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 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

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 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

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 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

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 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

‘tis the season for Multiple Sclerosis

What is it with Boston and the seasons of the year?

James Taylor, born in Boston, put them to rhyme

“Winter, spring , summer, or fall,

All you have to do is call”

Brigham and Women's Hospital in Boston recently studied the seasons in relation to Multiple Sclerosis.

Participants had MRIs weekly to monthly over the course of a year. The study found that disease activity varied with the seasons.

In the spring and summer months, people with multiple sclerosis are at a two to three times greater risk for disease activity. 

"Our results showed that the appearance of lesions on brain scans was two to three times higher in the months of March to August, compared to other months of the year." Dr Dominik Meier

Seasonal prevalence of MS disease activity 

Besides seasons they also factored in daily weather conditions and found that warmer temperatures and solar radiation were linked to disease activity, while precipitation was ‘no problemo’.

Now trying to share this ‘news’ with Patti on a 90°F (32.2°C) hot and humid summer evening got a big “duh” out of her about the study yet a more spirited conversation over James Taylor music. She enjoys and I, well … (One good thing about pushing a wheelchair is you can make faces while listening to someone talk.)

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

disruptive behavior in health care

I know the values and bedside manners of classic TV doctors like Hawkeye Pierce, Cliff Huxtable, and Marcus Welby were fiction but I did not realize they were fantasy.

            

What do you do when real reality is weirder than reality TV? 

"… surgeon storming out of the operating room, leaving others to finish the job… 

… doctor refusing to wait for an anesthetic to be applied to a baby, and performing a circumcision that left the baby in terrible pain… 

… dropping instruments on the floor, ignoring an offer of replacements, and using the contaminated items on a patient…”

Pennsylvania agency reports 'disruptive behavior' in state health care 

Hey! Can’t we all just get along or at least play nice while I’m bleeding here?   

“…the doctor ignored a concern raised by a nurse … nurses often react to intimating doctors by avoiding communication with them”

Or my personal favorite and why you should always include duct tape in preparing for any doctor’s appointment …

“… when doctors and patients talk, the doctor interrupts after an average of 18 seconds"

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

care facility era internet chatter

What in the world do blue baths or finding non-existent second floors have to do with the care facility era. Everything and you will find neither in admission brochures.

You will only find them on the blogosphere because they are the experiences of caregivers of the care facility sharing the importance of continuing involvement, advocacy and above all communication.

Barb blogging in Multiple Sclerosis Carer, The blue bath shares: 

"Don would complain bitterly that … he hated the "blue bath". 

 “I quizzed the staff … he doesn't have good enough balance any more to sit up in the shower chair … wasn't safe; he might fall.”

“… tracked down a high-backed reclining shower chair … on trial for the past week … nurse said they just wheeled him in and left him to it … he was refreshed and relaxed and very happy with it.

(if the nursing home will not purchase one) …then I will purchase Don's own. … You can't put a price on dignity." 

Sarahsue blogging in "A day in my life",  Today….right now……that is the time!  

"I am learning to help Jack wait.........and waiting is difficult

I am also learning to judge what is fact and what is supposed fact.

Sometimes I get a call from Jack about a problem and after I drive 10 miles to the facility, he was mistaken, and greatly embarrassed. Helping him through these painful times is just part of loving your spouse.

Most of all I am learning that showing LOVE is understood and communicated without any barriers in the mind. The brain can be a broken machine but the love cells still function."  

In the care facility era the caregiver is now part of a team. Whether Multiple Sclerosis or Parkinson ’s or any multitude of illnesses or disabilities a patient’s ability to communicate is affected. Successful teams are fueled by communication.

Recently a reader forwarded me an excellent link and well worth the read for an insight into the communication training of nursing staffs.

Nursing Fundamentals Communication Skills 

Needs and hearts are only part of the circle of caring.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

choosing to care

It begins subtlety, no better yet, invisibly. You begin to give care. You CHOOSE to care.

The person dealing with diagnosis or progression of chronic illness or disability did not CHOOSE to be so and is understandably ferocious in their independence.

Veteran long term caregivers look back on this as a beginning or a stage of caregiving. But to many this stage holds, it is what they do.

Find a way to extend a helping hand without trumpeting your effort. For example, if you don’t normally do the cooking “develop” an interest do not “offer to cook”.

Worlds change. Soon you are excusing yourself from social activities to be around the home, just in case. Of course, you never phrase it that way.

What you are doing is not really fooling anyone, it is all about how you approach it. In a sense, chivalry not chauvinism.

Progression is the proverbial elephant in the room for both of you. I pray the elephant just sits there. Unfortunately most likely it will grow. The care person needs to be thinking and exploring ‘what if’ and under no circumstances think out loud.

                                                            

No one wants to be dependent anymore than they want to be chronically ill or disabled. This can get like emotional bumper cars in this stage. You have to try to understand that your choices whether calculated or in the heat of the moment are no different in the 21^st century than Pythagoras philosophized in the 6^th Century B.C, “choices are the hinges of destiny”.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Friends on the winds of cyberspace

Why care? Why share? Likely there are as many answers as there are caregivers. Teach us to care is ever evolving.

             

One person somewhere shares a care experience and someone else reads. That experience is used, modified, or inspires someone else in the blogosphere. Caring evolves.

Four summers ago while Patti tooled around the yard in her scooter I was inspired by an entry from A Day In My Life about caregiving in Oklahoma and of all things an irrigation tip from the prairie.

The willow planted that day was small enough to fit in a car for its ride from nursery to home. Today, well …

Now branching over 20’ (6.1 m) wide and 30’ (9.14 m) tall it did not cure Multiple Sclerosis nor dramatically improve caregiving. It does remind me daily that no matter how lonely any one day may be that I am not alone.

Choosing a willow originally was just a spontaneous feel good kind of choice. With time it’s grown in symbolism.

Long before Big Pharma was even Big Pharma, Bayer AG synthetically produced the willow’s salicylic acid and patented it as “Aspirin”? Long, long before that native Americans used it as a staple of their healing arts. Across the then flat world, Hippocrates wrote of its medicinal properties. No Internet nor had anyone traveled between Old and New Worlds. ‘Mother’ Willow somehow healed across people, places, and time.

As the wind blows through the willow branches, I am reminded that another caregiver lives with the challenges of the care facility era in Oklahoma and another in Australia.  A caregiver deals with homecare in Massachusetts and another in Amsterdam. Their stories and more are lived in reality and shared in blogs listed on the sidebar. Friends on the winds of cyberspace and like the resolve of the willow they may bend but never break.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders