Multiple Sclerosis Caregivers 2012

Last Fall MS caregivers throughout the US, including myself and readers of Caregivingly Yours, participated in a research study about Multiple Sclerosis caregiving.

The results of that study were published last month in a 62 page report available on line in PDF format at:

Multiple Sclerosis Caregivers March 2012

Conducted by National Alliance for Caregiving, National Multiple Sclerosis Society, Southeastern Institute of Research and supported by Sanofi US.

Block out some time, get yourself a cup of coffee (or favorite beverage) and discover statistically who we are, what we do and how we each stand in the new idea of normal. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 

UNLESS someone like you cares - wheelchair accessibility

Picnicking with McDonald’s french fries under sunny skies on a 66˚F (18.8˚C) afternoon only got better when followed by a movie and popcorn. In Patti’s world, after two decades of Multiple Sclerosis sometimes eating for taste trumps eating for health.

While dysphagia is always a clear and present danger at least these comfort foods require no assistance for self-feeding and are easy to monitor. Empowerment can also be a treat.  

"The Lorax" was 90 minutes of pure enjoyment, practically an animated musical. Of course there was a 'message' about protecting the environment but as with all Seuss stories the telling of the story is just so darn entertaining and fun.

While we are blessed to own a wheelchair accessible van that empowers Patti’s freedom, not everyone is. Perhaps even most families caring for some needing a wheelchair do not.

With budget cuts looming, people in wheelchairs, their caregivers and families that depend on subsidized public accessible transportation or contracted providers face an unknown tomorrow. Everything from access to medical care to independence to access to family and friends could shrink.

Like everywhere, Pennsylvania’s budget in these economic times is created with scissors. Gov. Corbett is proposing $620 million in cuts to human services programs; $422 million from basic education on top of the $765 million cut from last year’s budget, 20% cuts to colleges, 35% from State parks, and ‘zero funding’ for public transportation.

Yet this is democracy and these are ‘proposed cuts’ it is time for all interested parties to speak up and be heard. 


MS Awareness in particular is not about one month or one week a year or glitzy ad campaigns. It's about keeping your eyes, ears, and mouth open.

That’s why I found this most disturbing for it is the double whammy of cuts to social services and zero public transportation funding that could most affect the lives of those needing wheelchairs. “Able-bodied people had unfettered access to stairs and elevators that lead to Gov. Tom Corbett’s office on Wednesday. People in wheelchairs did not.” Disability activists targeted in enforcement of Pa. State Capitol's restricted access policy

"UNLESS someone like you cares a whole awful lot,

nothing's going to get better: it's not."

“The Lorax” by Dr. Seuss

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

disability perspective / MS

Q ...What is a disability perspective?

A ... disability perspective is a viewpoint that considers the needs and aspirations of disabled people and their families.

I offer as an example a tale of two stories...

“Christmas By The Lake” Boiling Springs, PA

When surreal becomes real, you’re just glad you were part of it.  “Christmas by the Lake” hosted by the Boiling Springs High School Alumni Association could not have been a more enjoyable winter outing.

Upon arriving we found wheelchair van accessible parking available in front of Appalachian Trail Conservancy.

Lowering our van ramp we found ourselves also in the staging area of the Pioneer Girls (a variation of Girl Scout Daisies) and parents. Our ‘transformer’ van quickly became show and tell to young inquiry minds who in turn shared with us all their exciting adventures lighting the luminaires. We laughed and smiled as the curious ‘heart of childhood’ embraced differences so honestly and innocently.

Our push and roll around the lake was mesmerizing with hundreds of real luminaries plus a fully lit Christmas Tree floating in the lake. Patti in her wool cape, mittens, hat and buggy bag wheelchair lap blanket declared she was “quite toasty” in spite of a ‘real feel of 29˚F (-1.6˚C)’.

When we needed to abandon the path and use the side of the street for a block, the reflective strip on Patti wheelchair lap blanket shone like a beacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnuts and marshmallows were available for roasting over a fire pit.  Everything was free including hot chocolate, hot dogs, and Christmas cookies. MS symptoms of dysphagia restricted us to hot chocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did not explore as rarely are they easily accessible and Patti could care less - she already has me, her trusty one-man open sleigh horse.
----------------

Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
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12% of Americans are affected by disability, add in their caregivers and families and you are talking about a quarter to a third of any community’s population.

Including disability perspective into news or promotions is not about political correctness, it is inclusive and welcoming to people of all abilities.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

almost stone age caregiving

Keep in mind reading this entry that for the people referenced, today begins their 5th day without electrical related services.

In one New Hampshire town, 140 or so elderly and wheelchair using residents are trapped on the upper floors of a building because the elevators aren’t working. No power real concern for wheelchair-bound on upper floors

In Pennsylvania, “A tractor motor turns the generator that powers the breathing machine …She has Lou Gehrig’s disease, and her tenuous lifeline has been in place since Saturday. That’s when a rare October snowstorm knocked out power to homes …” Power outages from Saturday's snowstorm are threat for people with medical problems

In New York, “Visiting Nurse Service aide rushed around the dark house looking for a flashlight to set up a backup device that does not need electricity … It was already too late.” Halloween weekend snowstorm outage claims Bronx great-granny; lost oxygen during power failure

Are home generators the answer if you live with medical needs?

In Connecticut, “It is the latest of three carbon monoxide deaths since Saturday's massive winter storm” Carbon Monoxide Claims Another Life

In Massachusetts, “The state fire marshal says two people are dead in Palmer in what is believed to be carbon monoxide poisoning” 5 people killed in Mass. after October storm

Think having a ‘medical certification of emergency’ on file with a power company means something? – A spokesman for First Energy, parent company of Met-Ed, said “medical declarations are noted by the company but the thousands of outages from the storm make prioritizing a specific customer impractical.”

Probably too often I use a phrase “the tip of the iceberg”. Media focuses on the most dramatic. Countless others, among the over 1.5 million still without power, challenged with living with disabilities, chronic illnesses and of course their caregivers are also facing their 5th day of almost stone age living and caregiving.

November is National Family Caregiver Month and I for one find these unsung efforts heroic.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

Was long term care insurance a CLASS act?

As a society, I am convinced that we cannot even grasp much less be prepared for the crushing cost of long-term care.

Is money the only definition of cost? Families are changed forever, what about the lives lived and not lived?

How did we even get to this insurmountable gap between medical science and quality of life?

On Friday the Obama administration informed Congress that offering long term care insurance as part of Health Care reform was not “budget neutral” and therefor unsustainable.

Secretary Sebelius’ Letter to Congress about CLASS (Community Living Assistance Services) and attached Health and Human Services Report.

Of course with the gnat like attention span of our society, this story barely made it out of a 24 hr news cycle.

The ‘unsustainability’ of the Community Living Assistance Services Act is not a solution. The challenge of long term care is not going away.

Here’s the bottom line - EVERYONE will one day know or love someone who can no longer care for themselves …

… and we do not have a clue how we will do it.  

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

adult sippy cups

Entwining their arms they share a toast ... somewhere, just not in this story.

Instead I reach over to help Patti hold her adult sippy cup so she can enjoy her hot chocolate. Taking a sip of my own mocha I realize hey I’m drinking from an adult sippy cup too. Maybe this whole disposable coffee cup thing is really just about preparing us all for the adult sippy cup era ahead.

Curiosity got me Googling - paper cups have been around since the beginning of the 20^th Century but let’s face it lids were the quantum leap forward when in 1967 Alan Frank of Philadelphia filed a patent for the first tearable vented plastic lid for coffee.

So with recent temperatures nearer 40˚F (4.4˚C) we stopped by Sheetz “Specialty Coffeez Expresso Bar” for Patti’s favorite ‘dark chocolate hot chocolate’. Not only can we get affordable specialty coffee and hot chocolate but Sheetz may be the most convenient stop on the planet. Convenience trumps when you are a caregiver and their accessible parking, even van accessible parking, is welcoming not an afterthought. 

Depending on whether we’re heading home for an outing or how Patti’s MS fatigue is doing I may transfer her hot chocolate to a travel mug that has become perfect for her for both hot and cold beverages. As a designer travel mug it’s a perfect disguise for an adult sippy cup and there are times the handle grip is most helpful for her.

Straws once were a cornerstone but MS progression with decline of eye hand coordination, increasing visual impairment and simply problems associated with the muscle control involved in sipping through a straw has made them increasingly obsolete. Summers ago I wrote an entry, immunity to ‘brain freeze’?, of Patti inhaling frozen drinks. This past summer she struggled to use a straw much less hold a drink.

Sure somewhere a couple entwines arms and toasts and somewhere else one person reaches over and helps hold another’s cup. The end result is the same, a smile.

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

pushing and rolling through nature's rage

How chronic illness / disease or disability was left out of those biblical plagues is beyond me. I suspect it has to do with my Hallmark conspiracy theory about ‘get well SOON’ cards. People just do not do duration well. Bring on the frogs and boils just as long as “the Lord spake unto Moses” – how long?

Not to make light of natural disasters but they do have an end and involve words like recovery. Multiple Sclerosis and/or MS caregiving do not involve endings nor recovery. One of the intangible aspects of caregiving is ‘crises management’, 24/7 year in year out.

Recently we rolled and pushed our way through two weeks of natural disasters: earthquake, hurricane, tropical storm, and record flooding with our wheelchair accessible van ramp lowering like the proverbial staff of Moses.

While the East Coast felt and freaked over Virginia earthquake we found ourselves out enjoying an afternoon outing in Valley Meadows Park, eerily empty of people.

We were intrigued by wheelchair switchbacks built into the Forbes Path where grade was steep. Wheelchair ‘friendly’ is a world of difference from wheelchair accessible.

Later after Hurricane Irene finished trying to huff and puff and blow the town down, it was time for rollin’ along the sidewalks.

While Tropical Storm Lee was busy dumping nearly a foot of rain over several days, well … there were always home improvement mega stores with acres under cover to roll around in.  Considering the streak of natural disasters they were also community social centers - and already decorated for Halloween!

I need to give thanks to Cumberland County Department of Public Safety Facebook Page which made moving about in real time so easy and safe.

While safety is always first, living with MS can be isolating under normal circumstances. When all anyone is talking about is earthquakes, hurricanes, and floods mix that in with MS symptoms and disabilities and it’s too easy to add worries. Sometimes you have to lower your ramp and stick your head out.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

Tax Benefits for Caregivers

With politicians making daily headlines thumping their chests over benefits and tax cuts I found it timely that ‘ASK MEDICARE: information to help you care for others’ would offer the following factual information in their September/October e-newsletter.

"If you provide care and financial support, you may be eligible for certain tax breaks or other financial help. You may want to look into:

* Multiple Support Declaration

* Deductions for qualifying relatives

* Deductions for medical expenses

* Dependent Care Credit for paid caregivers

* Payments (in some states) for caregiving work

* Public benefits available in your state  

Qualtity Care Finder (information on hospitals, nursing homes, home health agencies, and other facilities across the country)

Help in Your Community from Aging & Disability Resources Centers (ADRC) connect to the ADRC in your area with the Administration on Aging's Eldercare Locator."

With medical insurance gone wild and not every one honest when it comes to our more vulnerable population, advice is helpful.

"Medicare plans can start marketing for Open Enrollment on October 1. Protect yourself by knowing the rules about what Medicare plan sales agents can do. Sales agents CAN'T:

* Come to your home uninvited

* Approach you in parking lots, hallways or lobbies

* Offer you a gift worth more than $15 to join their plan 

* Provide meals at sales presentations

* Try to sell you a plan at educational events

If you know of an agent that's not following these marketing rules, send an email with the details of what happened to our Surveillance Mailbox at surveillance@cms.hhs.gov. "

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

respite care awareness

Respite care is a ‘gift of time’, a ‘break’, a provision of short-term, temporary relief to those who are caring for family members. It’s about addressing caregiver / carer burn-out.

Respite care ‘awareness’ is about education. Unless you have walked in carer/ caregiver shoes likely you do not have a clue how consuming and overwhelming it all can become – or more importantly what can you do.

“WHEREAS, Families are Pennsylvania's most important and constant care providers for individuals with extraordinary care needs, such as developmental disabilities, physical disabilities, Alzheimer's disease, mental and emotional disorders, and extreme medical need; and

 WHEREAS, this important job can become stressful for the individual providing care, particularly due to the often constant demands -- many times it is a 24-hour a day commitment;

 WHEREAS, citizens who provide respite care to persons with special needs are providing an important and highly valuable service to those individuals and their families, and to their communities.

 THEREFORE, In recognition of the unique and important service that respite caregivers offer to the many selfless individuals caring for Pennsylvania's most vulnerable population, I, Tom Corbett, Governor of the Commonwealth of Pennsylvania, do hereby proclaim September 25th through October 1, 2011, RESPITE CARE AWARENESS WEEK throughout the Commonwealth”

I confess that my own awareness of ‘respite care awareness week’ was only because Cumberland Perry Respite gave me a heads up a week ago. A designated awareness week seems an opportunity to promote awareness in general and more importantly services for caregivers of any specific illness/disability. However I was surprised (and not surprised) to discover after a Google search only one related event in Pennsylvania, a Respite Resource Fair in Pittsburgh sponsored by United Cerebral Palsy.

Admittedly there has been an earthquake, hurricane, tropical storm, and record flooding to dominate both lives and the news, yet the sounds of silence from the Pennsylvania chapters of major non-profit disease and/or care organizations is rather deafening. Not unlike the sound that usually follows the mention of the phrase ‘respite care’.


***updated 9/19 - Respite Care Awareness Week Proclamation from Cumberland County Commissioners

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

assisted shopping for clothes / wheelchair and MS

No doubt in my mind that even Job would have broken had he been ‘tested’ for over 20 years shopping without a universal sizing system through sections of misses, junior, plus, petite, and womens clothing.

Multiple Sclerosis symptoms early on impaired Patti from reading labels, trying on clothing, and driving to stores much less play Mom with our daughter.

Raised in men’s clothing where shopping is a function of waist and length, my adventures into women’s clothing have been more like the Mad Hatter’s tea party especially since the quest for the last decade has been ‘best of possible for assisted dressing’.

Non-ambulatory, Patti requires assistance with dressing. Lying prone in her bed, she can no longer even lift her butt or roll on her side. Total incontinence necessitates wearing Depends 24/7. All of the above and more leave us discriminating shoppers to say the least.

Measuring is everything. Yes, stores have wheelchair accessible dressing rooms, but no one has an adult changing table.

Curiously the only mannequin we’ve ever seen in a wheelchair was while shopping at Kohl’s captured on this camera phone picture from over 5 years ago. Kudos to progress with the debut this Spring of Mannequals.  

In search of clothes that both express Patti while seated in a wheelchair yet somehow are designed and/or sized for assisted dressing -  I push Patti through the aisles in tailor motif with my measuring tape hanging around my neck bemusing her to no end.

Even after two decades it doesn’t take long before my measuring turns to mumbling.

Soon I’m mumbling about storming the Bastille (obviously the French are behind this) and lamenting my never ending respect for the shopping patience of drag queens, as Patti laughs away like rewatching an old favorite movie.

“Patti I just had to stop and say hi, I could hear you laughing across the store!” A staff member from Patti’s care facility out shopping with her kids appears in the aisle.

Hmmmm! ‘Could hear you laughing across the store’ –  plus a couple new outfits – I’ll take that as a sign of a successful outing any day. … Up yours, fashionista!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com