Caregivingly Yours, MS Spouse Caregiver

care giving

Sunday, April 21, 2013

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/

care giving

Saturday, April 06, 2013

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/

Tuesday, April 02, 2013

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/

Wednesday, March 27, 2013

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/

Tuesday, March 26, 2013

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/

Monday, March 25, 2013

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”.

Winter Storm Virgil March 24th, March 25th

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/

http://multiplesclerosis.net/blog/should-i-stay-or-should-i-go/

Wednesday, March 20, 2013

should I stay or should I go? MS spouse caregiver

“As long as I've known you, I've never heard the whole story before. Makes me love you even more, my dear friend.” I could only smile reading this Facebook comment to my latest blog for MultipleSclerosis.net

SHOULD I STAY OR SHOULD I GO

Posted by Patrick Leer—March 16th, 2013

The commenter is one and the same as the famous other MS caregiver spouse who dropped out of cyberspace almost 20 years ago in response to my first post to a Prodigy Network MS Bulletin Board. … Those pre-dawn of the user- friendly Internet could get beyond challenging. Yet out of that primal Internet we discovered we were not alone.

Along the way somewhere somehow I decided 350 words was the average speed a caregiver reads in a minute. Caregivers searching for information IMHO simply do not have the time to weigh through ‘War and Peace’ to get to what they are looking for.

Caping my entry word counts at 350, I was pioneering the twitter concept of short messages before anyone even dreamed of a tweet.

Submitting blogs for MultipleSclerosis.net goes in a different direction, encouraging me to write a higher word count. This in turn allows creativity and fuller stories.

While probably I have told bits and pieces of our history when germane to an entry but I guess I may never have told the whole story here in CY. Thank you MultipleSclerosis.net for the opportunity to share "the rest of the story."

Patrick Leer

Health Activist:

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

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

Saturday, March 16, 2013

snow falling on corned beef and cabbage

Driving through snow flurries at dawn I picked up my 12 month lung cancer surgery follow up chest scan DVD and radiologists report.

Amazing myself with my restraint to not peek I continued on in flurries to storage to unload my deejay equipment from the night before then to the grocery store for corned beef, stew vegetables, and cabbage.

Adding them all to the crock pot I began Googling the radiologist’s report. The more I googled the more confounded I got. Offering it to my daughter to read she noted at least it says there are “no tumors” everything else “is beyond me. If I was you I would have just waited until Wednesday when you meet with your medical team.”

Winter weather was distracting and soon I was out taking pictures.

Consumed by scanxiety and distracted by falling snow, unknown to me about 8 miles away outside Carlisle at about the same time I took this picture young people were dying and in pain in the 'same falling snow' as a bus carrying a college women’s lacrosse team ran off the road and hit a tree killing the driver and the head coach and her unborn child. Seton Hill head coach died from injuries in bus crash on PennsylvaniaTurnpike. In the bigger scheme of things, after learning the news I was ashamed to have dwelled on my unknowns.

Heading out to pick up Patti for dinner I found myself thinking time with Patti is perfect to distract me, as Patti can never remember I have lung cancer. Her first words of greeting were “Yeah, now I can get a ciggy”.

Lighting a cigarette for her, I stand there monitoring her because physical and cognitive symptom can make her dangerous to herself when smoking.

Long story made short corned beef and cabbage was a hit topped only by the chocolate chip mint ice cream for dessert and of course, 'ciggies'.

Driving back from Patti’s care facility Bruce Springteen’s “Jungleland” blared through the speakers:

“… the poets down here

Don't write nothing at all, they just stand back and let it all be …

… they wind up wounded, not even dead. Tonight in jungleland”

My daughter snapped me out of my melancholy by asking if I had transferred Patti from wheelchair to bed by myself. She reminded me of a line that caught her attention on the radiologist’s report about “degenerative changes observed in the spine”.

Patrick Leer

Health Activist:

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

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

Monday, March 11, 2013

MultipleSclerosis.net "Who I Am and How I Got Here"

“Welcome to MultipleSclerosis.net, the newest resource for patients and caregivers living with multiple sclerosis.”

Recently I was invited to blog from a MS caregiver’s perspective by some interesting people with Health Union LLC for a new Multiple Sclerosis website, MultipleSclerosis.net and it's associated Facebook page.

“At MultipleSclerosis.net we empower patients and caregivers to take control of Multiple Sclerosis by providing a platform to learn, educate, and connect with peers and healthcare professionals.”

Frankly I’m kind of honored that our story is the featured blog to kick off NMSS Multiple Sclerosis Awareness Week as I have long argued that people with advanced or severe MS such as Patti are swept under the rug.

Read Who I Am And How I Got Here… from MS.Net

Curiously while Caregivingly Yours, MS Caregiver has nearly 10,000 pageviews per month according to Google Analytics the National Multiple Sclerosis Society (NMSS) has never included 'our story' in their publications or on-line presence.

Believe me I understand that severe MS is scary especially to the newly diagnosed but to exclude it from the dialogue of MS is even scarier.

Patrick Leer

Health Activist:

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

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

Sunday, March 03, 2013

a life sequestered: spousal caregiving

“From the forest and wilderness come the tonics and barks which brace mankind. ”
Henry David Thoreau

With my 1 year anniversary of lung cancer surgery two weeks ahead, I found myself glancing back a year to the Caregivingly Yours entries written a year ago while I was still concealing my diagnosis, alone, afraid and writing to leave a voice behind.

The day before I died on March 1st, 2012 or flatlined during an EBUS biopsy I made sure I posted an entry entitled deafening silence of Multiple Sclerosis awareness.

Hospitalized overnight in the cardiac unit I was sent home to rest before a cardiac stress test to determine if my heart could withstand lung surgery. The day after that test I posted UNLESS someone like you cares - wheelchair accessibility.

Sooo Saturday Mar 2^nd 2013 seemed like an ideal day for a kind of 1 yr anniversary Super 5K walk with my daughter around Wildwood Lake. I say super 5K because the main park loop is 3.1 mile or 5 K but we opted to add in the majority of side trails.

Struggling with an acute health issue of my own this past month it seemed homeopathic to inhale “the tonics and barks that brace mankind”.

Most people might never see Multiple Sclerosis because the general population has <1% chance of having MS … Additionally, of those diagnosed with MS the majority may have symptoms “invisible” to strangers.

That Ann Romney and Patti share the same diagnosis appears inconceivable.

Our daughter always remarks how whenever she brings up that her Mom has MS, she always hears someone say that they have an aunt or know someone with MS who is "just fine".

As our society learns a new word, and I paraphrase Mr. Rogers, “can you say sequestered?”. Few have any idea how much living with severe MS as a family for 23+ years has been a life sequestered.

While mainstream media may be biased, social media on the other hand is misleading because it portrays only the story of those able to post on line. Unless a caregiver continues to share the story, people like Patti with severe MS disappear unable to write or even remember their life.

Ironically it was also Theodor Seuss Geisel’s (Dr. Seuss) birthday and I found myself smiling as surrounded by trees I could hear the echoes of both the Lorax and my post flatined entry

"UNLESS someone like you cares a whole awful lot,

nothing's going to get better: it's not."

“The Lorax” by Dr. Seuss

Patrick Leer

Health Activist:

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

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