adapting Halloween, what's this? snow!

Sometimes adapting to living with Multiple Sclerosis life can be…

- captured in a movie minute 

When Multiple Sclerosis symptoms impair viewing parades we experimented successfully with visiting 5 local Halloween parades while they assembled 

- acknowledged 

... attending our local MS Society Chapter Annual Meeting and Recognition Celebration, Patti’s primary concern throughout the event was “I just want a ciggie” while I was giving thought to borrowing a page from the Legend of Sleepy Hollow and throwing a jack-o-lantern at the speaker if she requested one more time for honorees to “please stand”. It’s all about perspective.

- or simply enjoyed
... as 6” (15.24 cm) of snow fell on Saturday of Halloween weekend followed by a 54˚F (12.2 ˚C) Sunday for playing while it lasted.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

how do you measure the years

A Multiple Sclerosis Blogger who uses poetry as her medium recently wrote

Does MS Ever Make You Think Of …

…the career you left

how much money you have spent

the friends that you miss…

In the ‘now’, MS symptoms of memory loss and cognitive impairment cloud Patti’s thinking of …

While I can remember for us both, can anyone really remember the intangibles of life for another?

Maybe our time with MS is better told as then and now?

Then there were only two main types of MS, now there are four.

When Patti was hospitalized with her first major MS exacerbation US troops were busy invading Panama while Iran and Iraq warred between themselves in the Middle East.

Our story preceded disease modifying drugs for MS. None existed then, today there are 6. Patti’s neuro tried to get her into the original Betaseron FDA trials however she was rejected as ‘too progressed’ – she had foot drop.

Someone named Bush has been President of the United States for 12 of the 22 years I have been a MS caregiver.

Our MS story predated the home computer age. We went to our local public library to read the New England Journal of Medicine to research and learn about MS.

Then the National MS Society called the debut of their major fundraising program the “MS Walk”, now it’s called “Walk MS”.  Over the 22 years they have raised $623 million nationwide.

Then “Rain Man” won the Oscar as best picture, this year, “The King’s Speech” - interesting bookends of challenges as art.  

Then we could take scenic drives through Fall foliage, now with progression of MS visual impairment – well we just enjoy it differently …

… on wheelchair accessible trails with ‘someone’ throwing piles of leaves into the air so they fall around us.  

“In daylights, in sunsets

In midnights, in cups of coffee

In inches, in miles

In laughter, in strife

In five hundred twenty-five thousand six hundred minutes

How do you measure a year in the life?”

“Seasons of Love” RENT

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

caregiving IS actually part of life

Leaves fall like reminder notes. Next month will be my 22^nd anniversary as a MS spouse caregiver.

Extraordinary care needs find us in this care facility era chapter of our story; however a nursing home is never a solution just another season.

Family, in my experience, should not only continue to be ‘hands on’ involved in assisting with the activities of daily living but the driving force of the continuing spontaneity and intangibles of life.

Staying ‘hands on’ brings consistency to care. For example by transferring, preparing, and tucking Patti into her bed by myself the majority of nights each week not only is that consistent for Patti but enables me to consistently be involved with staff. Mutual training and motivation never hurts. 

"It's just like sending your kids to school and never talking to the teacher,” says Pat Kelly director of the West Virginia Health Care Association. "The team aspect is key."

Simultaneously, life is about more than just assistance with activities of daily living. Life is never routine, it’s the unexpected even challenging that gives color to any day.

Facilities, in my experience, do a good job trying however they have to program for a common denominator. Family customizes.

Since I tuck Patti in the majority of nights I try to make each visit an outing. The ‘what’ is not as important as the spontaneity.

Progression of Patti’s MS symptoms demand concessions in planning and time involved, ever adaptive is essential.

Halloween parades are a century old Pennsylvania Fall tradition. However Patti can no longer see costumed marchers in the middle of a street and prefers to go to bed long before most parades end – so we experimented by visiting parades beforehand, while they were assembling.

All in all it ended up a fun and free way to enjoy several Fall evenings. … and maybe just maybe by our presence, demonstrate that caregiving is actually part of life. 

"Creating a home filled with spontaneity is foundational to transforming nursing home culture." Susan Misiorski, Living in a Nursing Home: What Matters Most (IV)

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  

Global Accessibility Map

Stroke of genius if you ask me! To be able to check on genuine accessibility before hand – unbelievable!

“When a person has a disability, whether it’s a visual, hearing or mobility challenge, you face struggles every single day,” Hansen said. “One of the things you don’t want to have to deal with is when you want to go somewhere to then have artificial barriers that limit you from being a full part of society.” 

New website rates how accessible buildings are 

“Using Google Maps as a base, the website allows users to rate businesses and locations based on how accessible they are for people with disabilities. The website includes separate rating criteria for people with mobility, sight, and hearing issues.”

GLOBAL ACCESSIBILITY MAP

Launched just yesterday, the example I pulled up is the Smithsonian Museum of Art in Washington DC. As a caregiver it is revolutionary that not only can I find out in advance about specific accessibility details but even companion care restrooms!

START USING and filling out details of places you know! 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

Halloween Parade (accessible parading)

While we’ve attended the annual Mechanicsburg Halloween Parade for almost 10 years, driving there Patti could not remember ever having gone before.

Questioning her further back in time I discover she can remember snippets from over a decade ago and the epic ‘Trick or Treat’ nights from our former home in College Park, MD. – Our home used to host over 225 trick or treat visitors, theatrical effects and music all MC’d by me dressed up as Santa. – We were Halloween!

Progression of Multiple Sclerosis symptoms sure can affect sharing ‘traditions’. Even a 7 PM start is late for someone who prefers to go to bed by 7:30 PM.

Now on the other hand one thing about memory loss is I do not have to get too hung up on tradition or routine. Working exclusively in the now does allow for creativity. Rather than sit and wait for the parade to come to us why not abandon tradition? It was a 68˚F (20˚C) evening in October, why not arrive early and push and roll around to visit the floats, cars, and participants while they were assembling.

‘Accessible parading’ worked better than expected as Patti got close enough to actually see and interact. We pushed and rolled through the staging streets (and streets always trump sidewalks) visiting with groups as they put on finishing touches, found ourselves in the middle of a zombie dance rehearsal, and a dancing cow gave Patti a beach ball.

Suddenly on some unspoken cue people assembled into parade formation and we were swept forward in a marching band between bass drums and cymbals as pyscho-clowns on skateboards zoomed by on both sides.

While the band turned left we went straight and escaped laughing.

Whether remembered or not laughing is still fun!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

cruel and unusual SOMETHING

Googling, I stumbled upon “a collection of essays about the well spouse experience and what I believe society should do about it” by Marion Cohen.

“Cruel and Unusual” (2005) is an unpublished book she “decided to make freely available”. You need only Adobe Reader, or other application capable of reading PDF files.

Not only does it provide insight to home caregiving but transition to the care facility era over her 26 years as a Multiple Sclerosis caregiver.

Time is everything for a caregiver / carer, and at 89 pages, “Cruel and Unusual” does not take a ‘War and Peace’ commitment of time to read yet on the other hand raises enough questions, shared experiences and food for thought about caregiving in our society to fill volumes.

Some chapter headings (in her own words):

WHAT CAREGIVERS DO (a kind of Care Giving 101, especially for those who don’t already know)

SUGAR-COATERS AND OTHER NON-SOLUTIONS (such as referring to the patient as “the loved one”)

NOT EVEN VOLUNTEERS (the plight and feelings of family members of nursing home residents)

THE SEX WORKSHOP (how some well spouses are seeking love and life elsewhere -- the joys and limitations of that)

… also it’s an intriguing peak inside the early years of the Well Spouse Association.

For veteran long term MS caregivers it may read like a visiting preacher preaching to the choir, but for ‘others’ out there unfamiliar with the details and stresses of long term care, “Cruel and Unusual” could be the proverbial whack upside the head - “The conspiracy of silence leads, or is tantamount to, cruel and unusual SOMETHING”.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

pancreatic cancer, apples, and memories

Memories cascade or at least mine do. Pancreatic cancer screams from headlines as Steve Jobs dies at age 57. It’s also been two decades since actor/producer Michael Landon’s public battle with pancreatic cancer and death at age 54.

Media reports his family claims Jobs died “peacefully”. I hope so, my Dad died from pancreatic cancer at age 75, fourteen years ago. I can never forget those long final hours of passage into final freedom from pancreatic cancer spent with him.

Memories also link. My parents first met a home computer, when a used Apple II was gifted to them by family friends.

In their 60’s you know how it goes when your parents ask, “Patrick, can you figure this thing out?”

My first impression was of a mutant home appliance and IMHO with its two disc drives and DOS commands was about the most complicated thing I had ever encountered. Of course I had no experience, no manual, and as I remember at the time the “why” had something to do with making Christmas card lists easier.

Anyway those Christmas card lists never got easier, my Mom suffered a massive stroke and my Dad was her caregiver for over a decade before she died followed by his own death just four months later. Totally ‘old school’, computers and/or Internet never played a role in their lives or caregiving. I never exchanged an email with my parents.

Years later when I entered the home computer age, several years after entering the Multiple Sclerosis caregiver era, I never forgot how complicated that old Apple II was and embraced Microsoft Windows. I’m a PC!

Now for our daughter, Apple computers were synonymous with school. I suspect like many of her generation she was raised bi-OS, fluent in both Apple and Windows operating systems.

All three of our lives have been filled with wonder and enjoyment through Jobs’ Pixar Studios.

Today, people with their faces buried in Apple iPhones walk into Patti’s wheelchair with increasingly regularity.

“To infinity and beyond!” – by all means, just please try to watch where you are walking.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com