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

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

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

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/

care facility multiple sclerosis caregiving

farewell to winter push and roll

Spouse caregiving for Patti and my own diagnosis of lung cancer collide on far too many days anymore. Trying to outlive lung cancer is somewhat like trying to outrun those proverbial headlights at the end of the tunnel. 

Yet paradoxically when actually hangin’ with Patti, I have no lung cancer in her Multiple Sclerosis dementia.

Attending her Care Plan Review today, I decided to include Patti. Usually I do not because if I want to actually discuss something, Patti’s MS dementia leaves her lost, clueless and wondering out loud who the hell are these people talking about.

One thing I have learned about advocating for someone with dementia is that you need to have boots on the ground weekly on a regular basis.

Anyway I was able to meet some new department heads and in closing when new Care Plan Review coordinator tried to explain to Patti who it was she was replacing, Patti interjected, “oh you mean that slut!”  … Which as the table erupted with gasps of laughter I had to smile at Patti’s sense of comic timing, always leave them laughing.

Next we were off for a 1 mile push and roll through a nearby park before heading downtown for some urban 1 mile push and roll.

2”+ of shoveable snow had fallen the night before which I enjoyed to no end. I love to shovel snow. By this afternoon the sun and warming temps had melted most of it for our farewell to winter push and roll.

Heading back to her care facility I fed her dinner in front of her TV, better than room service to her, before brushing her teeth, transferring her from her wheelchair to her bed with a one person unassisted transfer, and undressing/dressing her for bed.

While Patti certainly enjoyed our outing I had something even better, a lung cancer free afternoon. 

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

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/

care facility multiple sclerosis caregiving

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/

care facility multiple sclerosis caregiving

Lung Cancer pushes Multiple Sclerosis

In our own mutant version of rock, paper, scissors, lung cancer will always push Multiple Sclerosis. Patti will never push me nor care for me nor even remember I have lung cancer.

Scanxiety is driving me nuts with my CT Scan looming this week for my 12 month follow up from lung cancer surgery.

Soooo I took a brisk two mile (3.2K) walk around the neighborhood with an audio book then headed over to pick up Patti for a push and roll on a gorgeous sunny 64°F afternoon.

Another mile and change pushing a wheelchair would give me 5K for the day.

Trails through woodlands and parks are OK but rarely can Patti actually see anything. The Army Heritage Trail dotted with tanks, helicopters, and more is MS visual impairment friendly. Even a legally blind person can see a tank.

Plus the US Army knows disability and most everything is wheelchair accessible unless of course it was meant to be climbed on. Unlike parks and such the trails at Army Heritage Trail are maintained regularly.

Pushing and rolling through US Military History we decided to detour into 1965 and the Battle of La Trang Valley. Visiting a Vietnam Fire Support Base we found their 105mm howitzer totally wheelchair accessible. Then it was off to WWI to play hide and seek in World War I Allied Trenches.

 Even though she does not appear to exert energy just being outside and rolling on different terrain amplifies her MS fatigue and she was ready to call it day.

Heading back for dinner at her care facility for dinner I fed Patti stuffed green peppers, mashed potatoes and apricots. When I stay to assist her with dinner it’s like having her own personal attended. No waiting before bed. No hoyer lift needed. After brushing her teeth and transferring her to bed with a one person unassisted transfer, one of the evening CNA knocked on the door to change her and give her a nightly sponge bath.

Patti is not only ‘non-ambulatory’ but unable to reposition herself in bed, or by definition ‘bedridden’. Now you have learned something new to kick off Multiple Sclerosis Awareness Week.

Where two CNAs are needed to complete the task whenever I am there it only takes one plus me. MS fatigue never enjoys waiting.

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

where is the cure for Multiple Sclerosis

March is designated Multiple Sclerosis awareness Month. This March is our 28^th year of living with Multiple Sclerosis as a family since Patti’s diagnosis in 1985 of ‘probable MS’ ... where is the cure?

She cried so uncontrollably upon hearing her diagnosis that her neurologist’s office called me to pick her up rather than have her try to drive.

This PSA by NMSS first run in 1994 is IMHO the best ad I have ever seen for MS. It portrays a year living with MS. Now multiply it by 28 and you get the idea.

Since 1989 ‘spousal caregiver’ has supplemented the label husband. Last year a diagnosis of lung cancer was added to my labels.

Since this could be my final MS Awareness month, I’m going to speak my mind.

Multiple Sclerosis comes down to ‘activities of daily living’ when you lose your abilities for dressing, eating, ambulating, toileting, and hygiene you become dependent. For the last several years Patti lives in a long term care facility. She requires a team of assistance to complete any and all the activities of daily living. MS cognitive symptoms including dementia have made piecemeal of her brain, preventing her from even remembering I have lung cancer.

“Cruel and unusual” punishment is prohibited by the Bill of Rights to the US Constitution. Patti did nothing to warrant life imprisonment in her own malfunctioning and declining body. 

What about the collateral damage of MS to family from my shortened life expectancy to our daughter.

Since Big Pharma found a new and profitable market in maintenance medications for some people with milder Multiple Sclerosis there has been a tendency to sugar coat MS. That coupled with the disappearance of those with severe MS from the dialogue whether in social media or mainstream media, I worry that focusing on the cure is taking a back seat to the more profitable maintenance medications. 

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 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/

care facility multiple sclerosis caregiving