physical caregiving Multiple Sclerosis

Physical caregiving intertwines everything and anything you do for so many, in our story it’s about Multiple Sclerosis caregiving.

Tuesday night our wheelchair van suddenly sputtered and stopped running. Coasting to a stop we basically ended up half on a pseudo-shoulder and half in a corn field.

No problemo! I’ll call AAA. I suspected it ran out of gas, the gas gauge has been wonky ever since we were rear ended last Summer. Keywords like wheelchair van and wheelchair passenger escalated the response from simply sending a can of gas to dispatching a special tow truck which would take over 45 minutes, and suggested emergency rescue by police or EMS for Patti since it was below freezing.

Turning to Patti I explained “it could get real interesting” but in the meantime we could always tell ghost stories. We were in a corn field, remember Stephen King’s Children of the Corn?

As Patti glanced out the window, I screeched at her in my best psychotic child voice, “I will send outlanders amongst you: a man and a woman!”

Jumping almost out of her chair, she grouched back at me, “You can be such an asshole! Now just give me a ciggie.”

Obviously she was going to be no fun to share the waiting time with so I called our daughter who rendezvoused with our other car.

I figured that if Jack LaLanne at 60 could swim San Francisco Bay handcuffed and shackled towing a 1000 lb boat, then I could get Patti out of our van through this corn field and into our car. This one’s for you Jack!

Sensors in our ramp wanted nothing to do with the terrain so switching to manual I dragged it open to an interestingly elevated deployment, nearly jumping out of my own skin hearing sounds of snapping and crunching behind me. It seems our daughter had decided to clear a path by stomping corn stalks.

Accompanied to a soundtrack of exclamations and expletives the operation was a success; exiting up the ramp, plowing Patti’s chair across the frozen, snow crusted terrain, and improvising an all terrain one person transfer lifting her out of the chair and into the car while Megan simultaneously pulled her in from inside.  

Leaving Megan with the van, listening to the State of the Union on the radio (the State of the Union is always a parallel universe for us caregiving families), I took Patti on to her care facility physically transferring her out of the car into her wheelchair and reversing the process into bed.

AAA was completing their visit as I returned to the corn field. A little gas had the van running just fine. Even the police finally pulled up. Apparently different sides of the street are different police jurisdictions and 'somehow' the address became 'confused'.   

Somewhere in a Pennsylvania corn field a farmer may notice a peculiar crop circle  - just another mystery in that thing called physical caregiving.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

download a free song and give

Downloading music can conjure up all kinds of things to different people, but sometimes – yes Virginia there is the next best thing to a Santa Claus – “The Sweetest Dream”.

Kai Croft and Steve Joyce, President and CEO of Choice Hotels, met last May at ServiceSource's day habilitation program in Annandale, Virginia and things started to happen.

Kai Croft is a “poetess”. ServiceSource provides employment and rehabilitation support services to individuals with disabilities. Choice Hotels Music is an initiative from Choice Hotels International that supports signature causes and artists.

Now for every copy of “Sweetest Dreams” downloaded for free, Choice Hotels will donate $1 to the ServiceSource Foundation, up to $10,000. … 100 percent of donations to the ServiceSource Foundation go in direct support of programs that enhance community integration and independence and provide valued employment opportunities for individuals with disabilities.

I have downloaded my free copy of ‘Sweetest Dream’ and being the suspicious type also scanned and double scanned for viruses and spyware and found nothing but enjoyment. Click Kai Croft’s “Sweetest Dream” to go to free download page.  

“Cause I feel like

My heart holds a million of the

sweetest dreams

And I want them to come true, I see the moon and only you, and

I hope you’re listening to my prayer

Someone bring you round

I see you there

And you become reality — in my sweetest dreams”

Kai Croft

Download a free song and someone else donates to a worthwhile non-profit -  does it get any better than that?

Actually, yes … for more of Kai's poetry, visit her blog at www.kaiswriting.blogspot.com

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

conversation MS and blarney

Riding and chatting in our wheelchair van can stretch the boundaries of whatever anyone thinks conversation means.

Outside of trying to talk with an infant or traveling to a foreign country I wonder if many of us actually give much thought to language.

Memory loss whether short term, long term or both blended with any stage of degenerative dementia symptoms is a land of words without frontiers.

Our story is Multiple Sclerosis specific so there is an additional layer of standard MS obstacles to speech and voice - slurring, scanning / pausing, volume control, and emotional lability plus pseudobulbar affect. Speech & Voice Multiple Sclerosis 

Patti, with challenged short term memory, suddenly sees something out the window and not only may the conversation abruptly change directions but change ‘when’ we are talking about as her memory may shift the conversation from now to then.

MS is all about short circuiting so it is also probable you could find yourself carrying on a seemingly rational lucid conversation with Patti and beginning to believe this entry is my hallucination. Weather is more predictable.

While professionals hopefully are trained for such communication, family and friends face not only obstacles but their own emotions. With a blink of an eye and a change in time, you may not exist. We all ‘look for’ and ‘need’ feedback or response in conversation. When we do not receive it - does it mean it is not there?

I majored in speech communication in college and all the “source => message => channel => receiver” models in the world are little preparation for communication without rules. 

45 years ago my Dad held my legs while I leaned down backwards between the battlements of Blarney Castle to kiss the Blarney Stone. Today, I know that the ‘gift of gab’ still means you have to bend over backwards if you care to make it work.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

 

a weekend for dreams and worries

“Our lives begin to end the day we become silent about things that matter.” Martin Luther King Jr.

Pennsylvania state-subsidized adultBasic medical insurance runs out of money at the end of February. 42,000 insured and almost half a million on the waiting list awake daily heading for the largest one-day loss of health insurance in State history. Pennsylvania subsidized health insurance for low income people to end  

 “The good neighbor looks beyond the external accidents and discerns those inner qualities that make all men human and, therefore, brothers.” MLK

Smiles tell the story of the “Exceptional Rodeo” for people with disabilities far better than words. Clicking on the picture opens the picture gallery from First Frontier Prorodeo at the Pennsylvania Farm Show.

  “We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” MLK

Just over 100,000 houses were taken over by banks in 2005, before the housing market bust. … 1.05 million homes were seized by banks last year. 1.2 million are estimated to be repossessed this year. 2010's record-breaking foreclosure crisis: By the numbers  

"Life's most persistent and urgent question is, 'What are you doing for others?'" MLK

Safe Harbour protects children and their families from the cold. ... this huge uptick in donations couldn't have come at a better time … the donations received will ensure that each of the children residing at Safe Harbour is taken care of for the remainder of the winter season. Safe Harbour exceeds fundraising goal  

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” MLK

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

baby, I’d walk through bull sh*t for you

Probably not the most romantic verse but ‘baby, I’d walk through bull sh*t for you’ is no expletive when pushing a wheelchair through the livestock pens of the 2011 Pennsylvania Farm Show.

Nor can I remember Patti ever laughing harder and longer than at my footwear misfortune. Alas, it’s all in a days work of a caregiver / carer.  

Who would have thought that Texas Longhorns roam Pennsylvania? Lower in fat, cholesterol and calories than most beef and able to thrive on marginal pastures apparently the old ways are becoming the new ways. … nor is a written sign necessary to warn you – do not pet the calf. J 

Eventually the Farm Show becomes about the Food Court and we found ourselves addicted to schroomies (button mushrooms stuffed with cheese and jalapeno) from the PA Mushroom Growers Cooperative, before sharing a grilled portabella sandwich. Leaving just enough room to share a bowl of lamb stew from PA Livestock Association and wash the whole meal down with chocolate milk shakes from PA Dairymen’s Association. ... Sharing food I’ve found is a sneaky way to assist Patti with eating in public. Looks more like “taste this” than feeding someone.

While the Farm Show Complex is wheelchair accessible attendance overwhelms resources. Elevators are simply not people movers and the sheer numbers of baby strollers, wagons, vendor carts, scooters, wheelchairs and companions make wait time too much a part of a visit.

For years now we just roll along our work-around, no wait, no crowds and then there is the ‘ciggie’ break bonus of using outside.

Maybe it was too many mushrooms but it sure looked like Patti was pulling an enchanted carriage …

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

fun times off the sidewalk

Long term care certainly needs a toolbox of resources such as in the upper right hand corner of this blog. Yet in reality, eventually you both are going to find yourselves where the sidewalk ends and accepting that long term care becomes more about connecting the dots between moments in time.

When playing in the snow becomes more wheelchair friendly through a gift of a Buggy Bag wheelchair lap blanket from one friend then that snowballs into a unexpected visit when another friend who happens to be driving by the park pulls over. Children of the North Wind seem to find each other.

Watching Patti laugh so hard that tears run down her face and she can barely catch her breath transcends a movie outing. To be able to quip in my best Robert Di Niro impression, “Are you ready to be the god focker?” for days afterwards and watch Patti dissolve into laughter, I could hug the writers of “Little Fockers” and of course Patti's brother for the gift of movie passes.

Sure I could discover a wheelchair smoker’s apron but when a friend sends a gift of packets and packets and packets of exotic flavored hot chocolate,  well … there is simply no place that can compete with home right now for Patti’s favorite wish for ‘a ciggie and a hot chocolate’.

Yes, and even after all this time sometimes I still stumble into awkward moments. Picking Patti up from her care facility for an outing she was still wearing her knee orthoses for MS knee contractures and fuzzy socks. Removing the orthoses while talking out loud to myself I remarked “we need to get some shoes on, in case” and paused. Realizing both how dumb my ‘in case’ was and how long the pause was extending I could only sheepishly smile up at Patti. We both laughed as Patti completed my sentence, “in case I want to kick somebody” and agreed fuzzy socks were just fine.

Moments in time are the why. And why is the keystone of caregiving.

It is not impossible to dream that where the sidewalk ends you will find a little help from your friends.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

are you fit to care / exercise

Getting in shape tops many New Year’s resolutions but in over 20 years as a caregiver / carer it was never even on my radar.

Up until 4 months ago if you had told me I would belong to a gym – well, in texting speak ROFL.  

Before 4 months ago, multiple transfers in a day could cause me such back pain that not only was my life affected but Patti’s outings were often suspended.

Christmas Day I transferred Patti a dozen times, most of which involved lifting her in and out of a vehicle. Yes I awoke stiff and stooped the next day but nothing that a couple iboprufen didn’t erase.

Perhaps it was spandexphobia or anxiety of being surrounded by bodybuilders but a gym seemed alien to me. That is until I found Planet Fitness.

Their un-gym atmosphere is as appealing as the $10 a month cost.

Transferring Patti or anyone involves different muscle groups. As a carer / caregiver your body tells you which muscle groups ‘feel’ the sorest. 

Their 30-minute circuit workout is a user friendly series of stations with level and pulley machines for each major muscle group. Adjusting weight while working through the cycle, I can strengthen what I need. Plus there is a cool traffic light which signals you when to start and stop the exercise and switch machines.

While the circuit workout has phenomenally benefited transferring Patti, the two miles of power walking on a treadmill during my visits has energized wheelchair pushing. Previously I would train every Spring prior to a MS Walk by pushing Patti increasing distance, speed, and incline of terrain. Since Planet Fitness we zoom around miles of wheelchair accessible trails regardless of time of year or terrain.

By bringing along my audio book each visit doubles as a healthy book listening ‘hour’.

It took me two decades to figure out that athletes train their bodies just to play games. People actually depend on the bodies of caregivers / carers.  

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

calories oppose freedom

“He ain’t heavy, he’s my brother …” could only be sung by someone who never lifts another human being on a regular basis.

Loosing weight tops New Year’s resolutions.  I would like to add a unique motivation - if you are not easy to lift your quality of life and options will be less.  

Every second that everyone one of us lives we only grow closer to the day when we will all need the assistance of another for our activities of daily living.

Whether care facility or home care weight affects freedom. The difference between a visit and an outing is lifting.

For many of us, even before we arrive at our own need for assistance, we will spend years even decades as caregivers / carers. Excess weight can cause or contribute to back pain and that is an option that carers / caregivers do not have. You are what you can lift.

I do not mean to shock those who worship at the Church of Gadgets but there is no lifting attachment on a Swiss Army Knife or any lifting app for a phone. Sorry you can’t even tweet about it, takes two hands.

Whether a lifter or a liftee or simply in line waiting -   hey, let's be careful with the calories out there!

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

Affordable??? Care Act

As of January 1, 2011 our family health insurance premiums for myself and college age daughter increased 35%, the largest jump ever.

Patti’s Medicare supplemental insurance premium has increased 18% (another record jump), gratefully her Medicare insurance premium remains unchanged since January 2008.

While more provisions of the Affordable Care Act also kicked-in January 1^st, this financial kick in my stomach has left me more than conflicted about health care reform.

Our health insurance premiums were more ‘affordable’ before the Affordable Care Act. 

+35% +18% + unchanged = “affordable care” is a formula I am having problems embracing. 

Now I ‘get’ that this is not a “me” issue and I have to try and see the bigger picture. Yet with so many people unemployed, and income not rising for those fortunate to be employed - who can afford any premium much less welcome higher premiums for the better good?

“The clock is ticking for health care reform …” Health care reform 101: What will kick in Jan. 1? 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer