VOWS “What do words got to do with it?”

“…Saturday was Patti and my 28th wedding anniversary … while certainly considering all that has happened living with Multiple Sclerosis as a family and since Dec 2011 my lung cancer diagnosis … yeah it is a long time … but each year we hear all these platitudes about ‘a guy who keeps his vows’ … bottom line WE have no vows between us nor ever have …”

Perhaps in the expanded writing format of MultipleSclerosis.net ... a little back story can elucidate 

VOWS? “What do words got to do with it?”

Posted by Patrick Leer—July 25th, 2013

“The measure of a man lies not in what he says but what he does” 

Grant Morrison’s “Superman”

Patrick Leer

Health Activist:

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

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

death dying and MS dementia

A niece of Patti’s notified me Saturday that Patti’s father (Harold Decker) had died earlier Saturday. Speaking for, to, or whatever for dementia was never a role I wanted.

Yet the die was cast and frankly I do have the most experience.

Humbled by two weeks of Chemo Fatigue and on guard from others getting inside my failing immune system, our daughter and I concocted a plan.

We arranged with care facility to set up a sleeping pill for the evening, just in case. Then after completing my saline drip or the day we returned home for phase II

Feeding Patti a comfort food dinner, I began with, “Patti your father died” … “what!!! Harold Decker is dead?”

Shifting to logistics … “My Dad is in heaven … why would he give a shit?”

Letting Patti run with the agenda we zoomed in and out of ‘remembering’

I don’t know what Patti will or will not remember but I pray it is memories of life and laughter from long ago …

... and by our daughter to keep her Mom connected and engaged through My Lung Cancer Odyssey she has empowered father daughter time including this now iconic photo of Harold and, Patti in front of grave of George Decker from Memorial Day Weekend at New Freedom Cemetery.

Patrick Leer

Health Activist:

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

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

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/

World MS Day is ALSO about MS caregivers, families, and friends

The fear of being left all alone with a disabling illness such as Multiple Sclerosis to cope in a hard and scary world I imagine is more than universal.

Then on the other side is debate over sacrificing your own life as a caregiver. Some argue morality is a code of life not death. Your first moral duty is to take care of yourself.

Believe me after a quarter century no one gets both. IMHO it has nothing to do with philosophy or fears; there really is no right or wrong answer. … It’s about what you are made of. The person diagnosed with MS has no choice. Caregiver, friends, and family on the other hand is all about choice.

Today is World MS Day 2013, TWO million people around the world are living with Multiple Sclerosis. Add in their caregivers, families, and friends = mind boggling numbers.

Christ’s cry from the cross, "My God, My God, why have You forsaken Me?" has kept men and women of faith busy for centuries. … While those of us with feet of clay simply try to live with chronic illnesses like Multiple Sclerosis as family and create the best of possible lives.

Some will walk away, some will drift inside themselves and some may actually make things worse by staying with their negativity. I cannot fault any person when medical science itself has left MS in the dust of the laboratory floor.

I’m no believer in deep thinking over intuition, vows, promises or whatever. To my knowledge Patti's first huband has never even cared and hell's bells those two were in love. Marrying before God and man to all the right vows, love and all the bells and whistles only to have domestic violence end their marriage. Evil does not always masquearde as a disease.

We have no vows nor promises between us only a belief in the words of the Prophet "Give your hearts, but not into each other's keeping. For only the hand of Life can contain your hearts. Stand together, yet not too near together: For the pillars of the temple stand apart, and the oak tree and the cypress grow not in each other's shadow.”

I honestly believe it comes down to caring. MS caregiving will become physical care with lifting transferring and more. Do I have true grit?

As always my thanks to MultipleSclerosis.net …

The few,the proud, the MS Spouse Caregivers

by Patrick Leer—May 27th, 2013

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/

"D'oh!"

Voting with Patti is always entertaining. MS symptoms from visual impairment to memory to disinhibition,  IMHO revolutionizes voting at a polling place.

NO she will not use ‘accessible’ mail-in ballots. She wants to vote.

Today was primary elections for local government. 

Our family if anything is NEVER lockstep. With one Republican, one Democrat, and one Independent – the Independent voter was not eligible to vote in the primary and that would be Patti.

My brain fahrt! However a poll worker sat and talked with Patti (they likewise have enjoyed her from previous elections) while I voted.

Can you believe they even now have a talking voting machine for visually impaired?

Of course, always enjoying the way Patti argues with talking crosswalk poles and grocery store self-check machines … I could only imagine what today could have been.

Regardless we enjoyed finger food in the backyard on a sunny afternoon while a gentle breeze scented the air with lilac.

Watered flowers are frowned at in Patti’s care facility as frankly they demand to much attention for staff … so I cut Patti a bunch of lilac and sent it back in a basket kind of like fresh lilac potpourri.

Megan did actually let me drive Patti literally around the corner to the polling station before taking over and driving her back – in Patti’s words, “I just want to go to sleep”. 

Living with severe MS as a family can sometimes teter between frustration and somewhat incomparable time together. 

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/

never ever ever stop fighting

Never, ever, ever assume that Patti’s 23+ years of Multiple Sclerosis progression were without a daily fight.

Swank Diet, Calcium EAP, and Bee Venom Therapy – Alternative Treatments

Patti, her parents, and Megan and I joined her in a tooth and nail decades long battle to slow Multiple Sclerosis.

Our 'able bodied' family last pictured just days before Patti woke up Thanksgiving Morning 1989, unable to walk and barely able to see or talk.

Again thanks to multiplesclerosis.net for inviting me to share longer versions of our story 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

big yellow tank

Under 70°F (21°C) partly sunny skies I picked Patti up for a picnic at the Army Heritage Trail.  Spring flowers may work for people with no Multiple Sclerosis visual impairment however when you are 'legally blind' tanks, helicopters, cannons and such work so much better.

Plus you never know when you will find a brightly decorated tank; believe me beats a daffodil any day anywhere. 

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

Care facility: room service dinning

Whether a push and roll or simply running errands precedes dinner at Patti’s care facility – MS Fatigue rears its head and she beings to verbalize “I just want to go to bed” through “Can’t I just go to bed” with frustrated inflection.

Her facility dining room does IMHO an excellent job. However it takes time beginning at 5 PM to transport residents down from their rooms until the actual food arrives until 5:30 PM or a bit later. Then of course everyone needs to be fed which unquestionably takes longer than just a bunch of people chowing down. It’s about finding a balance between safety and nutrition.

It’s also can get a bit boring, IMHO. I understand it has to be ‘mellow’ because distractions impair those with feeding and swallowing challenges including Patti’s MS dysphagia.

When visiting I am the wild card. I can stay and help her with dinner in the dining room, which as her advocate I frequently do to inspect how and what they feed Patti, or I show off my old restaurant ‘five finger’ tray caring skills and bring Patti’s dinner to her room.

‘Room service’ as we jokingly call it is a special treat for Patti. First it’s immediate and all about her, unlike the residential dining room. Whether I just use the care facility meal (which actually are quite good – better than I eat most nights) or pick her up commercial carry out. She is one happy camper having dinner with the Simpsons.

Best of all for Patti she gets to go right to bed like having her own waiter and personal attendant. No waiting for aides with a hoyer lift.

I help her brush her teeth prepare her for bed and using the 'one-person transfer technique, the hug' I move her from her wheelchair to bed.

A happy Patti is already in bed, lights off and sleep machine playing softly under her pillow approximately 30 – 45 minutes before aides with a hoyer lift could accomplish the same task.

Saying good night to Patti I sometimes am reminded of a day she gave a tour of her care facility to some visiting friends from our old neighborhood, “It’s like being rich and having MS just like Annette Funicello”

“Glen Holt and Annette Funicello Intertwined In Our Story”

 by Patrick Leer on MutlipleSclerois.net

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

what if? ... Multiple Sclerosis care facility era

Multiple Sclerosis affects each person so differently, I honestly do hesitate to share our story sometimes.

WHAT IF…THE CARE FACILITY ERA

By Patrick Leer for MultipleSclerosis.net

Scaring or depressing the newly diagnosed or those with mild MS is not my intent but on the other hand living with severe MS as a family can no longer be brushed under the rug.

My wife's quarter century imprisoned in her malfunctioning body by MS has meaning, as does her wish 'what if' something happened to me? Patti never ever ever ever wanted our daughter to sacrifice her young life as her caregiver 

I wonder if sometimes the fear of tomorrow is not more about concerns over family support and involvement as much as MS symptom progression. 

"How did you know when it was time for Patti to move to a care facility?" My thanks to MultipleSclerosis.net for sharing our longer stories.

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