The end of an era – accessible transportation

Facing an estimate of $1,500 in repairs to pass Pennsylvania inspection … our personal wheelchair accessible van era may end this week and it's not just the money … 

… Since beginning 'aggressive chemotherapy' almost 12 weeks ago, I can no longer lift or transfer Patti due to fatigue from chemotherapy to combat Stage 4 Lung Cancer. (My Lung Cancer Odyssey)… NO more ‘off road’ wheelchair pushing through accessible trails. … basically no more ‘physical caregiving’ on my part ... take physical caregiving out of the equation and is an 11 yr old van with 160,000 miles worth it?

Last week sitting in the chemo lounge I watched a couple use ‘the hug’ – one person unassisted transfer from recliner to wheelchair with healthy spouse transferring chemo fatigued spouse … how many times have I done that through the decades … hundreds? … thousands?  … the key word here is ‘healthy’ spouse ... and I can no longer qualify as the healthy spouse.

When operating a wheelchair accessible van one must still need to be able to lift or transfer your passenger as a failsafe. … Even my visits to Patti’s care facility have been seriously impaired by my chemo reduced immune system.

Visiting is down almost 2/3 for me … 

Does fighting to outlive Stage 4 Lung Cancer trump a quarter century priority for spouse caregiving for Multiple Sclerosis?  … Most days I awake to find myself so conflicted that I am alive and fighting to outlive lung cancer … yet ‘hands on’ involvement with Patti’s care declines.

 … her MS related dementia impairs her awareness of any of these changes … she rarely remembers I even have lung cancer much less am fighting to outlive it.

Patti did not choose Multiple Sclerosis any more than I chose Lung Cancer … however a quarter century ago I chose to juggle spouse caregiving and basically single parenting ... now we enter a yet another new era in living with MS as a Family…

A dear friend sent me a note of encouragement from the poet Audre Lorde …

“I have come to believe that caring for myself is not self-indulgent.  

Caring for myself is an act of survival.”

Patrick Leer

Health Activist:

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

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

Mammograms vs Thermograms

“Sitting in the waiting room I listened as Patti reinvented the boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust ..."

Mammograms vs Thermograms

FEATURE Posted by Patrick Leer - August 13th, 2013

Thank you http://multiplesclerosis.net/ for the  opportunity to share our story. 

--
Patrick Leer

Health Activist:

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

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

Palliative Care, Hospice, and MS

"Palliative Care does not leap out as something associated with MS. 

Yet in reality ‘palliative care’ is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms, and stress of serious illness ….”

Palliative Care, Hospice, and MS

Posted by Patrick Leer—August 8th, 2013

"... Obviously there will come a point when you will need to have conversations one way or another about palliative care, hospice, and dying regardless of what your diagnosis is.

As a caregiver this might be the one surprise you are not prepared for, after all MS is not considered a fatal disease! And your spouse has mild MS or is using disease modifying drugs….  Don’t let yours become intimidated by stigmas or wait too long. Get the facts in your State.

As a caregiver you are no more guaranteed tomorrow than the MS person you care for.”

Thank you http://multiplesclerosis.net/ for the opportunity to share 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/

“You’re cane looks stupid!”

Breezy, partly sunny and 74˚F (23.3˚C) … it was not only a perfect Multiple Sclerosis afternoon but my first chance to push Patti’s wheelchair since chemotherapy for my lung cancer began 8 weeks ago

After a couple blocks I yielded to Megan and walking next to Patti she notices my cane …

Patti: “You’re cane looks stupid!”

Patrick: “My cane looks stupid? … This from someone in a wheelchair … isn't that somewhat like the pot calling the kettle black” 

The banter of laughter is a wonderful aperitif before dinner at Helena’s Chocolate Café & Crêperie in Carlisle, PA 

Patti and Megan split a 'Nutella and Strawberry Crepe', I ‘chemo sampled’ a Breakfast Crepe featuring egg, ham and gruyère cheese 

…‘chemo sampled’ meaning I ate about half because of chemo suppressed appetite … I have learned to order foods that can easily be reheated at home as often appetite returns … or in this case I hope for ‘breakfast’ tomorrow.

Washed down by Nantucket Nectars Lemonade, we finished by splitting a fruit (blueberry, raspberry, and kiwi) tort. 

Admittedly the assistive devices seem to be multiplying and since chemo Megan has taken over the assisted feeding of Patti ... 

We have been living with Multiple Sclerosis as a family for 24 years … since chemo we push, roll, and now limp forward ... making the time for the banter of playful laughter ... We Are Family!!!

-
Patrick Leer

Health Activist:

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

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

Plan Now For Changing Care Needs

Wow! There is nothing like a lung cancer DX to erase whatever I was doing  ...

I had just written an article for MSFocus magazine on ironically 'plan now for changing care needs' when lung cancer entered my world in Dec 2011 and I forgot to even share the article from their Winter 2012 issue ... that is until I was recently cleaning up. 

"...More importantly, the plus is that Patti is secure, safe, nearby, and has 24/7 care the rest of her life. Some days, I have to keep reminding myself of that positive outcome. And when you add it up. it is an extraordinary safety net."
-- 
Patrick Leer

Health Activist:

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

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

28th Anniversary

Is a picture worth a thousand words?

--
Patrick Leer

Health Activist:

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

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

the straw that stirs the drink

Living with Multiple Sclerosis as a family I used to feel was a parallel universe … and frankly it still is but when changes in other family members occur it becomes more like a benevolent maelstrom … swirling together Patti’s MS, my lung cancer DX, and the death of Patti’s father.

Through Patti’s eyes (MS dementia and cognitive impairments) I have no lung cancer, her Dad’s in heaven and an afternoon of family fun is just that … fun and laughter. She is practically the straw that stirs the drink.

Empowered by our daughter boldly facing the unimaginable herself … listening to their banter driving … I sit in awe.

--
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/

Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link

In our US healthcare system, medical insurance makes or breaks way too much. As the health care reform at least rolls out the affordable care act is an enigma to most and to anyone impaired or ill there are potential catastrophic choices looming in options.

When we the people in the mid 1980’s through everything from federal legislation to divestment of stocks by colleges, towns, organizations and more of businesses supporting South Africa we the people were credited as pressuring the South African Government to embark on negotiations ultimately leading to the dismantling of the apartheid system .. no drones, no troops intervening. We the people simply did the right thing.

Now days it is not any particular  insurance company, nor any worker, nor any death squads – misery and death by insurance cancellation is all about your neighbors, friends, family and even the face in the mirror. 

IRA portfolios that include health insurance stocks are all about ‘your demand’ for profit. Profit from health insurance does not require me to explain the math.

Living with a chronic disease like MS is a hugemongous expensive. Too often like trying to dance through a mind field. Hope drives, neuros encourage, Big Pharm promises but with the dawn of MS cognitive impairment and you start to miss dotting some i’s and crossing some t’s you open the door to the profiteers.

Bean counters are not the bad guys, nor is the representative on the phone they are just doing their job. It’s you who demand the profit. Take a look in your IRA, your neighbors’s IRA, or your family and friends. Find health care companies or medical insurance company stock and you will find the enemy.

Of course this is 2013 and it’s all about money not what’s right. Yet divestment in portfolios including health insurance, health care, Big Phama, etc could have the same powerful impact on change to what is right! Profit exploits, profit has no conscience, profit, not people, cancels insurance. Look in the mirror.

As always I am thankful to MultipleSclerosis.net for inviting me to share the longer versions of our story and while our story is specific to MS, sooo many families face similar nightmares caring for special needs children, aging adults and more. 

“Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link” Posted by Patrick Leer—May 15th, 2013

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/

Sunday family fun and finger food fest

As my wife’s MS spouse caregiver I have always been in charge for the last quarter century, sometimes even accused of being a ‘control freak’.

Nothing ever prepared me for people helping me. It is a quantum change that frankly has humbled me.

Since my single and brief episode of syncope last week my daughter restricts my driving. While medical science may not totally back her restrictions, she did after all witness her Dad go from standing and talking in one moment to laying on the floor the next.

A common sense return to driving was the approach advocated by my neurologist, as lung cancer metastatic lesions in the brain can trigger dizziness, falls, etc. Meds and of course radiation therapy are in theory shrinking metastasis with each treatment and as a result reducing pressure on brain functions.

She did let me drive to Loew’s Saturday morning. I was beyond impressed as somehow she arranged a simulation exercise in their parking lot. As I pulled into the parking lot an outdoor forklift bolted out of the blue spilling a couple dozen large bags of mulch immediately in front of me. I stopped on a dime and frankly sat there smiling like the cat that ate the canary watching them work.

Sooo it was not only our Sunday family tradition but a treat when my daughter offered to pick Patti up from her care facility for a finger food fest at home featuring mozzarella sticks, fried pickles, shrimp basket, chicken tenders and breaded mushrooms from JoJo’s Pizza.

Finger foods of varying shapes and textures somehow empower Patti to self-feed and safely feel a bit more independent.

Somehow we just have to stop watching NBC’s “Hannibal” on FIOS Demand with dinner. Tonight a guy driven by brain metastasis becomes a psycho serial killer while Hannibal ponders if eating someone with lung cancer is ethical even sensitive. Personally I was getting more than concerned about Patti and Megan’s rapt attention to the show.  :) The camera caught Patti's focus and believe me she rarely has such laser beam focus from decades of MS visual impairment and cognitve symptoms. Then again Hannibal Lechter in any incarnation is someone you keep track of. :)

Whatever … it was family time, we laughed, enjoyed ourselves on a georgeous 64°F (17.7°C) perfect MS friendly late afternoon and had fun … that is what family should be all about even when I cannot be the catalyst.

“Our prime purpose in this life is to help others.” Dalai Lama XIV

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/

What a difference a day makes

Friday, pictured waiting for Endobronchial Ultrasound (EBUS) Biopsy outpatient surgery at MedStar Franklin Square Medical Center in Baltimore, MD. … I’M ALIVE

Yes, I wear my own custom name tag when under anesthesia it simplifies talking to me without having to try and read my wrist band. 

Today, Saturday, a collage of pics from a sunny 75°F (23.8°C) two mile push and roll with Patti around Carlisle, PA ending at Helena's Chocolate Café & Crêperie for dinner.

Any week I can mark 3 Multiple Sclerosis friendly outings with Patti from her care facility and 3 trips to Baltimore regarding my lung cancer on my kitchen wall calendar is a damn fine week of juggling spousal caregiving and my own health. 

Patrick Leer

Health Activist:

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

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

caregiving care giving care facility

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

it's not heavy it's my lemonade

Tumultuous week for the able minded and able bodied.

What about the most vulnerable among us when disaster strikes?

A snippet or two of news may get stuck in an able minded head but what about seen or heard through MS Dementia or other cognitive filters?

So I decided to give Patti a media break and enjoy a lunch outing on Friday at Helena’s Chocolate Café & Crêperie, “a slice of Europe in downtown Carlisle”.

Watching cherry tree blooms drop and swirl on the breeze outside the windows, we could have been in a snow globe.

Our dessert, a pear almond torte served just 'gently warmed' was out of this world.

As Patti grabbed her lemonade bottle to drink, I asked her if she needed some help?

Smiling she answered, “It’s not heavy, it’s MY lemonade!”

(in my head played, "It's a long, long road

From which there is no return …he's not heavy he's my brother")

Patrick Leer

Health Activist:

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

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

caregiving care giving care facility

care facility devastated by Texas Fertilizer blast

“Rescuers evacuating more than 130 people from a nursing home during a fire at a nearby fertilizer plant were suddenly confronted with chaos and danger when an explosion ripped apart the building...”

'Chaotic' scene at nursing home

devastated by Texas fertilizer blast

Dependent residents were trapped … 

PRAY!

Patrick Leer

Health Activist:

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

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

caregiving care giving care facility

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