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

the last 'normal' day in the America I grew up in

April 18 1995 was an idyllic day on the White House lawn. I was deejaying the World POG Federation area for the White House Easter Egg Roll. POGs were the pop culture rage that year and had the prime spot across the driveway from the Oval Office.

About to turn 7 yrs old in 4 days, our daughter Megan was enjoying not only all the Easter Egg Roll activities but wearing her full access pass for helping me she had the run of the White House grounds. Patti was at home with her home care helper.  

Loading up and ready to depart I could not find Megan and ‘assumed’ we were playing a one sided game of hide and seek.

Notice the foil paper mask Megan is modeling in the collage? Well she decided to hide in our van figuring I would search the grounds first. Our van was parked directly in front of the Oval Office.

With 2013 vision can you even imagine how relaxed security was 18 years ago?

Two Secret Service agents had decided to conspiratorially join my search. As we passed the van, Megan startled us by suddenly sliding open the passenger side door wearing her mask, yelling boo at the top of her lungs and jumping from the van like some crazy character.

Shrubbery seemed to bloom with armed men as did the White House Roof. “Stand Down” was barked and repeated into microphones. 

Following a lecture to a certain almost 7 year old about not yelling and lunging from a van parked within yards of the Oval Office, we drove on out. Exiting the gate we felt like celebrities as our van was mobbed by camera wielding tourists.

At 9:05 AM the next morning April 19^th home grown terrorists disgruntled over the Federal Government’s handling of the Waco siege of the Branch Dravidian compound used the 2^nd anniversary to attack the Federal Building in Oklahoma City with a truck bomb.

Reading today about the search for normalcy in Boston, I couldn't help but reflect back and IMHO April 18, 1995 was the last ‘normal’ day in the America that I grew up in.

Patrick Leer

Health Activist:

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

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

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

Saturday in the park

Sunny and 62˚F (17˚C) it was a perfect day for a finger food picnic in the park (catered by Taco Bell drive through with a chicken quesadilla, cinnamon twists and a "bangin'" pink lemonade freeze) accompanied by the creek music of ducks and water babbling over rocks.

Or as “Chicago” sang it 41 years ago:

“Saturday in the park …

Can you dig it (yes, I can),

And I've been waiting such a long time

For the day”

You'll notice Patti even doing some creekside physical therapy stretching, even trying to stand.

For me time with Patti is lung cancer free time. All the science and medicine in the world cannot give me what Patti's MS Dementia can erase.
--
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

a caregiving coin has two sides hope and denial

Hope and denial are two sides of the same coin and always have been. Much of what we lived through this past quarter century is likely true for others facing long term progressive chronic disease such as Multiple Sclerosis, or a shorter term diagnoses such as Alzheimer’s.

Transition to the care facility era is less about a continuum of care and more about an inevitable cataclysmic change that precipitates transition.

Denial is seductive. Homecare or bust was essentially a knee jerk ‘macho’ response on my part.

Long term caregiving is hazardous to your health. Now facing my own diagnosis of lung cancer, thoughts of never knowing how Patti’s story ends chase concerns for my own homecare through dark dreams.

Today is the sixth annual World Autism Awareness Day and as a family home caregiver of a quarter century I find my thoughts pausing on the parents and family of all special needs children.

More than me or other spouse caregivers or family members caring for aging parents; these loving parents of special needs children face the daily mathematics of not only their own 'what if', but inevitable 'when' balanced with a smile of encouragement and love for their child to brighten any day and any tomorrow.

Please make a moment today to pause and think of these parent caregivers - they represent the best of us. 

--
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

not 'too hot', hot chocolate

Juggling as a word has roots reaching back to Latin, meaning joke. Jesters through the centuries entertained people with jokes and juggling.

Juggling spouse caregiving for Patti’s progressing Multiple Sclerosis symptoms while basically single parenting our daughter from infant to adult has been more like trying to juggle while running back and forth between two ends of a teeter-totter. Good times and bad times, hopefully my antics were more amusing than displeasing.

Now juggling spouse caregiving for Patti’s MS dementia and more, as her advocate, through the care facility era and my own diagnosis of lung cancer for the past 15 months it’s more like running back and forth between two ends of a cruel joke.

Anyway as the last bumps of Monday’s snow melted away, I decided to take Patti out for a lunch outing. Plowable or shoveable snow can make deploying our wheelchair van ramp complicated so the extra day wait was optimum. Plus I like to mix up my times for visiting and outings from Patti’s care facility since Patti is unable to advocate for herself or even remember what goes on at different times of day. As her advocate I try to adhere to the maximum,  'it's not what you expect it's what you inspect.' 

Best of all I have no lung cancer when I am out and about with Patti. Her MS dementia symptoms have erased my diagnosis.

We headed to our favorite Helena's Chocolate Café & Crêperie. Where else can we order a ‘not too hot’ hot chocolate in an adult sippy cup? (aka to go cup) Besides everything being so yummy, Patti had a chocolate strawberry crêpe. The staff is always so accommodating of Patti’s Multiple Sclerosis symptoms.

Saying our goodbyes I could hear the lyrics to the Cheers Theme Song playing in my head …

“Making your way in the world today takes everything you've got.

Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away?

Sometimes you want to go

 Where everybody knows your name,

and they're always glad you came.”

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

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

oh say can you see

How do you monitor caregiving in the care facility era? A mega sized wall calendar keeps it ‘in my face’ every time I enter my kitchen. Glancing at it Sunday I was struck by the single outing with Patti last week, far off my norm of 3 outings per week.

Yes, I was a little busy with my own lung cancer health concerns, lung junk vs lung cancer. My mother’s voice echoes in my head, "is that your reason or your excuse?"

Outings with Patti’s Multiple Sclerosis dementia are never boring. While I have no lung cancer in her 'dementia world', buckling her in our wheelchair accessible van I coughed briefly only to have her remark “you sound terrible.” I know she means nothing but it unleashed an anxiety worm in my head.

We laughed as I paused while pushing Patti’s wheelchair by our lawn gargoyle. He appeared so sad playing his flute to the last bump of winter snow.  The anxiety worm whispered “your last snow”.

Returning Patti she was sooo slouched in her chair I considered asking aides to use the Hoyer Lift. Those anxiety worms have me more focused than usual on 'cheating death', plus Easter Week isn't helping. 

If I'm cheating death than full speed ahead. Initiating the one person unassisted transfer it was not the prettiest maneuver but Patti end up in bed safely. 

Awakening this morning to a couple inches of snow blanketing our neighborhood was a godsend.

While there is snow there is hope! 

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