Multiple Sclerosis home improvements for accessiblity

Sitting down to write an article for MultipleSclerosis.net with all its modern cyber features and connections, I can never forget the pre-Internet dawn when I discovered I was not alone!

Less I digress, God bless technology but MS caregiving is, was, and always will be about ‘hands on’. Social Media will never pick anyone off the floor and that IMHO is the ghost in the machine.

As the spouse or family member without MS you must be the balance between supporting a hope driven life with MS and pragmatically anticipating and preparing for change.

Home Improvements For Accessibility

by Patrick Leer—June 3rd, 2013

A little back story not in the article … We bought our original home in College Park, MD. Built in 1904 and restored in 1968 it began life as a farm house surrounded by farm land in the early 20^th Century.

The sellers seemed  almost a mirror image … yet while we shopped the asking price plummeted. … the Dad had come down with a "disabling pulmonary condition" from his asphalt business and shackled with the 20%+ mortgage rates of the Carter era they were bleeding out and overwhelmed by the advent of disabling disease into their family of three.

Patti, then a buyer for Stanford Paper, pounced and fueled with the 8% mortgage of the Regan era ‘signed sealed and delivered’ our first home.. 

…Within just a couple years a DX of Multiple Sclerosis entered our lives increasingly making our home unsafe for Patti. I was surprised to find this old picture of Patti ‘standing’ in front of the house on the brick steps.

Patti’s refusal to ever let the house appear to have an accessible entrance unquestionably complicated adapting. Excuse me patting myself on the back but I built a 400 ft long boardwalk from our driveway wrapping around the house and ending in what appears to be an oversized deck, yet is basically a 'disguised from street view' wheelchair accessibility ramp ... soon our daughter and her friends were skateboarding, roller blading and bicycling along with Patti's scooter from door to street.

As these clips from real estate flyer demonstrate our house became accessibility marketable over the time we lived there. Bought by a landlord investor he quickly sub-divided it  into three 'accessible apartments.'

Never underestimate the role of extended family. Patti was, is, and will always be Harold Decker’s 'little girl' and when Dad is a tile contractor well each visit brought the loving touch of power tools to keep pace with physical progression.

-
Patrick Leer

Health Activist:

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

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

not just your everyday Saturday afternoon

"Pack Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile"

Saturday was not a MS friendly afternoon with temps sweltering at 94°F (34.4°C) and we had been invited to a graduation party by Patti’s niece and her boyfriend’s family.

First let me give a shout out to the Heckendorn family, your accessible home and hospitality ‘in our world’ was so much more than appreciated.

Uhthoff's Phenomenon seemed suspended as Patti was unaffected for almost 3 hours outdoors. Yes, her NMSS keck cooler helped plus the fan someone positioned near our table blowing gently across Patti  … frankly sometimes I gawked in disbelief.

Over the years these rare brief suspension of MS symptoms always create a MS time travel moment. Nothing changes Patti’s physical dependence but an ‘ascendant’ Patti engaged and enjoyed the party.

Even when feeding her I noticed MS dysphagia symptoms were asleep and not affecting chewing or swallowing.

When ‘MS speech’ finally broke through jumping into a pause in her brother’s toast … it was a sweet remark to make.

Personally finding a bowl of  'atomic fireballs' on the desert table was the pièce de résistance. 

Sometimes when lung cancer pushes multiple sclerosis up a hill, there is a smile waiting at the top.

-- 
Patrick Leer

Health Activist:

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

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

8 milestones of a caring life

Since my own My Lung Cancer Odyssey leapt from Stage 1 to Stage 4 recently, I am finding each morning more like looking at a surreal gate.

Which may or may not have to do with the life fact that I have cared for my wife’s severe Multiple Sclerosis for a quarter century and my own lung cancer for only 17 months.

Oddly this morning reflected in the dawn showers I found myself back in the summer of 1988. Our world as a young family starting out was 13 months from exploding. Patti had been diagnosed with ‘probable MS’ in 1985 but the minor symptoms were receded and forgotten.

We were sharing a vacation house with Patti’s brother and sister in law and their daughter at Nag’s Head, NC. 

My brain was stabbed awake just before dawn and I gave up on sleep. Unlike migraines, with my Cluster Headaches light, motion, and activity always helped soothe.

Soooo why not carry our daughter down to learn to greet dawn at the beach. 5 months old is never too young.

I also found myself wondering about parents? I cannot even imagine what it would feel to be a parent when your adult child’s life explodes from a monstrous diagnosis like MS to a dependent life which you cannot fix - just hold and soothe. Life really is told in minutes of care.

Patti’s Mom, Gloria Decker celebrated her 80^th birthday today. Patti safe, secure, and attended was in the care facility. How aware or even wanting to participate with her siblings was doubtful. MS has a way of flipping life with age. Young adults cannot remember, cannot participate.

Gloria has been a mainstay for Patti, always visiting always encouraging, loving unequivocally.

We wanted to do something special that even Patti could see and enjoy. …. and putting our heads together we decide to try and create  a ‘milestone picture’ featuring 8 firework fountains for each milestone year of 80 years of a caring life. 

Living with MS as a family creates a special kind of family.

Patrick Leer

Health Activist:

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

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

vegetarian chili, carnivores, and cannibals

With almost a quarter century of living as a family centered on caring we find things to celebrate. Today was my first day of radiation therapy for my Stage 4 lung cancer metastasis to the brain.

Safely residing in her care facility with Multiple Sclerosis dementia erasing Patti’s awareness of my health issues we decided to have a family dinner at home. Our daughter is a vegetarian but has been craving a chili dog, with my newly radiated brain I offered to create a vegetarian chili dog.

Megan retrieved Patti while I did the cooking. Using a South Beach Diet Vegetarian chili recipe I made the chili from scratch which also gave me an excuse to test that my fine motor skills, memory, and such were still functioning.

Using Morningstar Farms Meal Starters Grillers Recipe Crumbles for the ground beef alternative and Morning Star Farms Veggie Dogs for the hot dogs … abracadabra you have a chili dog with a whole lot less fat that could fool any carnivore.

The laughs are because we were watching a NBC TV Show “Hannibal” which raised the bigger question ‘OK so I can fool a carnivore but could I fool a cannibal?’

Patrick Leer

Health Activist:

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

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

living with MS as a family / our best of possible worlds

Depending on the spouse caregiver, yes even living with Multiple Sclerosis as a family can be envied…if only for a moment in time.

OUR BEST OF POSSIBLE WORLDS

by Patrick Leer / MultipleSclerosis.net

“Pushing Patti’s wheelchair through the last 20 years I’ve slalomed through sidewalks of people at MS walks.”

But once upon a time “we were the envy of an entire pre-school haunted hay ride. Earlier that day I had hernia surgery from lifting Patti’s scooter in and out of our station wagon. After interviewing a couple of surgeons, I found a retired military guy who had done years of battlefield sutures in Vietnam designed to “hold” and get a soldier on his feet. Arriving on site that evening we discovered the hay wagon was not accessible. I couldn’t allow our daughter to be heartbroken, so hoisting her on my shoulders I pushed and pulled Patti’s wheelchair through the fields behind the hay wagon. Surprised actors began improvising interacting with us. My blood began oozing around my battlefield sutures and through my shirt, as our daughter’s classmates squealed with delight from the hay wagon.”  read the full story ... OUR BEST OF POSSIBLE WORLDS

Thank you to MultipleSclerosis.net for inviting me to share my ‘longer’ stories of living with MS as a family.

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

when an adult child has Multiple Sclerosis

Without premonition, I swear, my last entry shared a Multiple Sclerosis journal I had found written by an adult child about her Mother’s diagnosis with MS, entitled MS Recess.

Then suddenly screaming out from the cover of the latest People Magazine is the story of a Mother facing her adult child’s diagnosis of MS, “I Won’t Let My Son Die”.

All these different perspectives have been long overdue. 

Living with MS has been our life for almost the last quarter century. Were we really ‘living with MS’ as a family or rather the ‘collateral damage’ of MS, all along? 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

when a parent has multiple sclerosis

“Because life did not give me a manual when it gave my Mom MS” … This banner from a blog entitled MS Recess captured my attention as I began reading the thoughts and experiences of a young woman sharing the changes to a family.

Not only is it powerful but rather unique in that her Mom was diagnosed relatively recently, 3 years ago, and at a later age of 56. So the entire family dynamic is almost two decades older than ours at the geneses of living with Multiple Sclerosis.

The blog author was 25 when MS joined their family; our daughter was 18 months when Patti was hospitalized with her first MS exacerbation 22 years ago.

Our daughter has never known her Mom as an able bodied person.

The blog author refers to her Mom as a best friend and how hard it is to watch the changes.

The blogosphere can offer limitless views of living with Multiple Sclerosis. Yet no mirror in the universe reflects quite like children (of any age) and not enough is heard from them.

I encourage you to drop in for some MS Recess …

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

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  

can I depend on you / planning for life with MS care giving

Can I depend on you? / Can you depend on me?

When your world is turned upside down who thinks about plans? The person diagnosed with MS has a mountain of emotions to suddenly deal with. “the call”

The people around them have a parallel world of reactions confounded by invisible symptoms and invisible hurdles.

From the earliest symptoms through diagnosis of Multiple Sclerosis and beyond it may be more like a dance than stages of a denial acceptance equation

Everyone brings who they are to the moment. With one basic question, can I depend on you? / can you depend on me?

Whether one chooses to go it alone and create their own support network or within a family unit, the dance begins. Somehow each must not only learn but learn to move together.

Caring can push too hard or equally react too slow. Pushed away in the moment, it’s equally difficult to learn not to sulk as it is to try again.

Giving someone ‘space’ sounds easy until you create distance between you.

In the beginning it may seem as impossible as respecting boundaries without borders.

Complicating it all is that MS in the beginning does not look ominous. When you look ‘mahvelous dahling’ people have a problem understanding your diagnosis much less anxiety.

Also our attention span for caring is definitely short term. Hallmark sells ‘get well SOON’ cards not ‘living with’ cards.  MS on the other hand is about a commitment of decades not days.

MS symptoms may change and progress through the years increasing needs while abilities and resources of those who care decrease, butterfly effect MS caregiving.

Can I depend on you? … In the beginning, there is more going on in everybody’s heads than is actually happening. Like any first dance there will be those awkward moments of hand placement and you most certainly will step on a few toes. … Can you depend on me? 

“You can’t depend on your judgment when your imagination is out of focus” Mark Twain

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

game plan / planning for life with MS care giving

Life is what happens while you are busy making other plans. John Lennon

Patti’s neurologist first raised the issue of ‘more’ than homecare, the pre-dawn of the care facility era.

Ten years earlier when I asked this same guy about moving to a one story house to facilitate living with Multiple Sclerosis he had said, “Oh! I wouldn’t do that.”

OK, maybe neurologists are not psychic and not financial planners but they are ‘first responders’ to living with MS.

Over those ten years we seemed to live getting one step ahead only to fall two steps behind always remodeling and adapting. What if – we had originally and simply moved to a one story house?

Of course this is ‘retrospective’ planning - certainly we would have had less stress and more money – yet life does not include any ‘do-overs’. You get one chance.

In as sense you are torn between hope driven living or worst case scenario planning. Yet the simple truth is that when the resulting plan is driven by reaction to symptoms and/or progression then reality ricochets.

Complicating any formula for planning for life with MS is that every story is unique. Some people with MS climb mountains, some cannot even get out of bed, most are somewhere in between.

Living with MS is also often about the families that surround and are part of each story – or not part. Ripples affect either way.

Believe me there have been more times than not that I have wondered if planning is an illusion or a delusion.

Regardless you have to come up with something and then MS does what it wants – the proverbial “busted play” of American football. Mesmerizing when it works … ‘what were they thinking?’ when it does not.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

Are you ready?

Rapture! Armageddon! Trumpet out from between headlines of news and scandals du jour as life as we know it is predicted to change this Saturday, May 21.

Yet for caregiving, this is an opportune ‘teaching moment’ – when some one is dependent on you, are you ready to not be there?

It does not take prophesy, over half of car accidents occur within 5 miles of your home.

What would happen if you died or where unable to communicate? How long would it take before anyone even realized there was someone dependent on you?

How many people realize that even the simplest cell phone has an ICE contact (In Case of Emergency) and often associated pages for text and/or voice information. Your cell phone can speak for you even when you cannot.

Immortality by necessity is understandable when caring for someone, yet the reality is the opposite. Caregiving reduces life expectancy. Again, are you ready?

Wills, general and medical powers of attorney are they safely filed and easily accessible? More importantly is your successor already named in the documents? And does that person know where they are and have access to them, or a copy?

Most importantly are care plan and prescriptions written and recorded each and every time? When were they last given? Or are you again assuming you will always be there. Shouldn’t care be more about plans and less about assumptions?

Hey, I totally understand caregiving can be time paralyzing. Just getting through the day is reason to pat yourself on the back. Getting ‘transition’ together and keeping it together is more than a task.

Yet just imagine for a moment how unbelievably overwhelming it would be for anyone to have to step in when delusional immortality was your best plan.

Are you ready?

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

let them eat memories

Memories paradoxically both bond and separate you the longer you are a caregiver, at least when Multiple Sclerosis progression impacts cognitive abilities.

With our daughter’s birthday looming, Patti had not remembered, could not remember the day, nor could guess her age after multiple attempts. How? Why? -  What difference does it make?  It seemed better to just enjoy a fun time in the now creating an entertaining outing to include Patti in preparing for our daughter’s birthday.

"What you see and hear depends a good deal on where you are standing; it also depends on what sort of person you are." C.S. Lewis

Earlier asking our daughter, she had requested sushi quickly adding how about carry out and eat at home as it’s easier for Mom. True, and as I often stop to remind myself it is ‘their’ relationship and shared memories, not my perception of it. Megan only had 18 months of a ‘traditional mother’ daughter bond before severe disabling MS changed our family dynamics.

Rolling on in the now, we were blessed by nothing but the right sort of persons. Yes both the bakery and sushi bar were wheelchair accessible but wheelchair friendly is about the people behind the counter.  In both places, without asking or hinting, whether baker or sushi chef, they saw with more than eyes what was going on and brought selections around from display cases holding them for Patti to see and empowering her enjoyment of involvement.

Memories fuel an entire industry - inspiring poets and songwriters, employing practitioners of the psychobabble arts, and both haunting and comforting us.  Yet when memory loss enters the equation are any of us prepared?

Only in perspective can moments get poignant, when eyes smile in the now “sure, they steal your heart away.”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer