Wednesday, May 22, 2013
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
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
Tuesday, May 21, 2013
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.
Sunday, May 19, 2013
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
Wednesday, May 15, 2013
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?’
Tuesday, May 14, 2013
Fielding a question over on MultipleSclerosis.net, “How do you make the move to a mobility aid like a scooter or wheelchair? I still haven’t gotten used to the stares when I use my cane, you know, I look so good….”, I found myself reminiscing over that transition era when personal vehicles whether her Rascal Scooter or wheelchairs were about Patti’s independence and freedom in a dependent world.
Posted by Patrick Leer—May 7th, 2013
Living with MS or any chronic illness or disease “as a family” takes wanting to share and adaptability. Amplified by metastasis of my lung cancer and falling risk - it seemed all the more important to hug a memory.
Thanks again to MultipleSclerosis.net for inviting me to share longer versions of our story and sure wishing something like this existed in the late 1980’s.
Sunday, May 12, 2013
Hallmark Holidays are a pain in the ass. Now there is an idea for a sentiment for a card. However my job as MS spouse caregiver is simply to make it happen for those who cannot.
I even confess to a chip on my shoulder at times since 1989 I have been basically raising Megan as a single parent and I have played roles of both Mother and Father to Megan. PLUS I would have to serve as Patti’s surrogate in acquiring cards, gifts etc for her Mom.
My own Mom died in 1997 from complications following a massive stroke a decade earlier.
In the early 1990’s Patti was taking immune system suppressant meds for MS. Needless to say any and every germ our daughter brought home from Pre-School, Kindergarten and Elementary school latched onto Patti’s suppressed immune system. We experimented with a healthier routine of Patti alternating months staying in Pennsylvania with her parents and in Maryland with us.
The week before Mother’s Day 1994, Megan asked me if she could make video card for Mom on a video drawing thingamajig she enjoyed playing with explaining that if I videotaped her making the card we could mail it to Mom who could watch it on a big screen TV at her parents.
As she had only turned 6 two weeks earlier I stared in disbelief before realizing the idea could work …
Without further background please join us for 90 seconds from the week before Mother’s Day 1994.
Drawn, narrated, and directed entirely by Megan it was difficult to video tape the original 10 minute version through eyes tearing up with pride and love.
For the record Megan never walked across the street hand in hand with her Mom. In retrospect when you grow up with a parent disabled with MS, I guess kids do more pretending then we realize.
Monday, May 06, 2013
Frankly I was feeling a touch guilty as I drove to pick Patti up for an outing today. Yeah I was more than a little busy last week, How do you measure a week, livingwith lung cancer?, but two outings a week just seemed too few.
care facility multiple sclerosis caregiving
Trying to apologize she tells me her memory sucks and she did not notice. I can hear our daughter smiling “I told you so”
Sooooo I drive around stopping to get her some of her favorite finger foods, she laughs heartedly at the audio book we are listening to, and bring her home where she can enjoy her ciggies on our back patio and position her bowl/plate on her lap.
After about a handful of bites she wants me to take the plate because she’s tired and just wants to go to bed. .. sigh!
MS caregiving can be confounding no matter how long you have been doing it. Weather was too cool for Uthoff’s Phenomena to be in play. I stall her for a couple more minutes as she devours a Popsicle and then we are off.
Later Monday evening I read on Facebook “Patrick shares the most challenging MS symptoms from a caregiver's perspective: http://multiplesclerosis.net/?p=796”
As always I am thankful to MultipleSclerosis.net for inviting me to share the longer versions of our story
Posted by Patrick Leer—May 6th, 2013
in this case reading the time warp entry reminds me of what I am grateful for. The care facility era of living with MS as a family is less physically demanding on the spouse caregiver. Less stressful and more assistance for Patti. … and most of all as Patti once raised herself “what if” something happened to me she never ever wanted our daughter to give up her life to be her caregiver.
care facility multiple sclerosis caregiving
- Paperwork of Living With Multiple Sclerosis-The Pr...
- Sunday family fun and finger food fest
- vegetarian chili, carnivores, and cannibals
- Wheels Of Freedom And Independence
- Mother's Day with Multiple Sclerosis 1994
- Time warp Monday with Multiple Sclerosis
- Uthoff’s Phenomena and summer fun with MS
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