MS independence takes support

“Noticing I’m wearing an old MS Walk shirt that exclaims “Every hour SOMEONE LEARNS they have MS!”… OK so how often does someone learn they are a MS caregiver?

We are never really diagnosed … to paraphrase Shakespeare from ‘Twelfth Night’ … “Some are born MS Caregivers, some achieve MS Caregiver and others have MS Caregiving thrust upon them.”

For MultipleSclerosis.net …

INDEPENDENCE TAKES SUPPORT

Posted by Patrick Leer—July 17th, 2013

"Living with MS as a family and dependence can be a contradiction in care. With MS symptom progression, my role as caregiver became increasingly necessary because bottom line … ‘Independence’ takes support.”

“It's my job as MS caregiver to help every family member remain as independent as possible (and oh yeah, kind of like Santa please don’t let anyone see you do it).” 

--
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/

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/

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/

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

teach us to care and not to care

"By creating our own stories we learn to take the texts of our lives as seriously as we do 'official' narratives." Sue Austin

Earlier this month a reader commented on a March 2011 entry, butterfly effect MS caregiving “Hi everyone, I was a caregiver to my brother with multiple sclerosis for 15 years. The last 2.5 years were very difficult because my brother's disease was progressing at a very rapid rate. As a caregiver, I was often tired. Sometimes I was overwhelmed / depressed. I shared the responsibility of taking care of my brother with my mother. My mother was more overwhelmed than myself. My brother was diagnosed at the age of 17. He died December 29 2012 (aspiration pneumonia) at the age of thirty two. I miss him tremendously and at this time I am devastated. I can only say to caregivers to find a way. I would give anything to be a caregiver for him again. It was all worth it.”

Around the same time struggling with a sinus infection (at least I hope it is) for the first time in my 23+ years of spouse caregiving I could not lift Patti out of bed unattended and had to rely on the facility hoyer lift to get her into her wheelchair for an outing. … I was reminded of a line from that very same entry “The toll on your health will shorten your life, up to 10 years less than a non-caregiver, and its quality.”

Throw in the one two punch of Ash Wednesday’s dust to dust theme and Valentine’s Day Memories: the Good The Bad The Ugly from a year ago when I was concealing my own lung cancer diagnosis and I find myself wallowing in whether I am creating a story like ‘Ash Wednesday’ by T.S. Eliot

“Suffer us not to mock ourselves with falsehood

Teach us to care and not to care

Our peace in His will”

Or more like Joni Mitchell’s “Big Yellow Taxi”

“Don't it always seem to go,

That you don't know what you got

Til its gone”

Sharing our story has always been about preventing long term family caregiving for severe Multiple Sclerosis from disappearing from the ‘official’ narrative. 

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

caregivers create accessible snow

With all due respect to the residents of the New England states, between Feb 5 – Feb 10th 2010, Snowmageddon dumped 35” (88.9 cm) of snow on South Central Pennsylvania.

Yeah, it disrupted lives for a week, but the beauty of a storm like this was to be enjoyed.

Accessible snow = caregiver + shovel!

Living on a corner property snow plows only added to the depth for  'snow spelunking' opportunities before breaking through on Valentine’s Day! 

No snow blowers were used in the making of this collage. 

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 takes a team

Televised american football always has that moment when the cameras zoom in on a coach prowling the sidelines like a giant insect in headset with antennae.

Yet in real life there is no ‘sideline’, nor are there grown men running around in spandex jumping on each other.

Instead it goes like this …

Driving in one direction to visit a neighbor in a hospital recovering from surgery our daughter heads in the other direction to pick up Patti for an outing from her care facility where she finds Patti finishing her dental checkup.

Not only do I love dentists that make house calls to care facilities but even better when they call me on my cell phone to give me the update knowing Patti’s memory sucks. Which also gives me the opportunity to share my own diagnosis of lung cancer and that the young adult spinning in the therapy chair will sooner than later be taking over as Patti’s POA. … priceless!

Rendezvousing at home we play Trivial Pursuit xBox 360.  With our daughter operating the controller for all of us the game moves along well. Patti can actually see the questions on our screen plus with crowd sounds from cheers to ooohs it has a stadium feel to it.

Later preparing Patti for bed I notice a strange brace laying on her bed, when I ask about it the LPN claims its Patti’s. “No way!” I exclaim I even have a picture of her braces I can email when I get home.

Next day I get a call from physical therapist explaining that everyone was correct. Patti’s knee contracture braces were changed a couple months ago from the type on the left to the style on the right. However since she only wears them at night this is why I likely I had never seen them.

Yesterday I get a call that Patti’s doctor wrote an order for speech therapy evaluation. CNA’s in ‘assisted dinning’ were noticing Patti was increasingly ‘pocketing food in her mouth’. Leaving a message for therapist, I hear back from her within the hour and we briefly chat, I do have two decades 'hands on' experience with Patti’s dysphagia including with what I call “chipmunking” but I learned is officially called ‘pocketing’.

Patti is unable to direct her own care. Someone has to coach her team both on site and off. A good ol’ flip phone is all I need … of course living with my lung cancer diagnosis, a ‘coach in waiting’ spinning in chairs never hurts. J

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

MS dementia, PRN and Bigfoot

Whenever I’m picking Patti up and she hears the word dementia in conversation with staff she will often comment “I’m not f#cking demented!” I counter that “I did not say you were demented, I said you have MS symptoms of dementia”. She returns volley with “And I say you are an asshole man. (in Ahnold dialect)” … amusing herself with the pronunciation, she laughs and forgets how the whole stream began.

Pragmatically speaking, in the care facility era there certain areas where dementia (or MS symptoms of dementia) figure more prominently, at least for me.

PRN is an abbreviation of the Latin phrase “pro re nata”. Since this is not Latin class nor medical school for our purposes it basically means not scheduled medications and is “upon request” by the patient.

Staff has the traditional smiley and unhappy face chart to interpret for residents with dementia or cognitive symptoms who may be challenged to express pain, and/or request medication.

However it’s with other acute no-pain symptoms that the PRN system can unravel. Tacit vs explicit knowledge of any given resident’s current condition coupled with the ‘cover your ass’ philosophy of possible overnight or weekend temporary staff is not the best system to facilitate patients unable to direct their own health care.

Medical advocates, POA, even simply family and friends are the straw that stirs that drink. … ‘boots on the ground’ involvement is soooo necessary.

For example, Thursday night after getting Patti into bed I asked about her PRN Delsym for her cough at bedtime. A non-regular LPN covering the floor looks it up and remarks, “you know Patti has not asked for that since Monday night.” Truth be told, it was me not Patti who asked for it Monday night.

Then again her cough probably would not have been a problem if laughter, normally good medicine, had not grown to an ab crunching, eye watering, cant’ catch my breath crescendo as we found ourselves unable to tear ourselves away from “Finding Bigfoot” on the Animal Planet channel, in particular an episode with a dude named Bobo camping out in the woods, drinking, peeing on trees, and bellowing sasquatch calls.

Patrick Leer

Health Activist:

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

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

multiple sclerosis caregiving dementia mental health

lose the stigma of mental health care

Stigmas are creepy little things until they bite you in the ass or kill you.

If I believed the National MS Society or Patti’s neuro back in the 90’s that dementia was not a symptom of Multiple Sclerosis, then myself, our daughter and Patti could all be dead from a stove fire while my wife sat enjoying her lunch - dementia doesn't need a gun to kill.

A ‘perfect storm’ of mental health care looms to rival any epic struggle in our nation’s history. Yet we seem to chase consequences rather than look at causes.

1 in 8 Americans over age 60 are diagnosed with dementia. While Alzheimer’s is the most common other chronic diseases with dementia include Multiple Sclerosis and Parkinson’s.

Simultaneously, rising up like a breaching leviathan is the Age and Autism with 1 in 88 children aging out of the special education school system.

What little mental health resources and time is available for the plethora of other childhood and adolescent anxieties and developmental disorders is being swallowed .

from the Boston Globe,  A list far too long

“Just days after a young man massacred a group of first-graders at an elementary school in Connecticut; Dr. Leonard Rappaport (chief of developmental medicine) sat down with a mother who had brought her 7-year-old son in for an appointment at Children’s Hospital in Boston. …… “That’s impressive,” Rappaport told her. “You’ve got all your Christmas shopping done.”     … It wasn’t a gift list, she explained. It was a list of the mental health professionals she had called to no avail: Either they weren’t taking new patients, or they wouldn’t accept her insurance.     The list contained 66 names. …”

Over 15 million Americans currently are caring for a person with dementia. An estimated 17 million Americans are caring for a child with special needs. The American career focused dream, "Keeping up with the Joneses", is a candle burning out on both ends.

People with cognitive challenges diagnosed or undiagnosed, treated or untreated are discriminated against. Families are too often lied to in the name of optimism or simply the appointment time is up.

Mental health care MUST be available on parity with physical health care.

Mental health care MUST be honest. Mental health care MUST be responsible.  

Most important of all ‘we the people’ need to lose the stigmas. Wearing my “lung cancer survivor” hat I am always pleasantly surprised by the knee jerk support and encouragement from strangers; yet if I was wearing a “depression survivor” hat I’d bet money the reactions would be different.

The stigmas surrounding mental health care in America still shackles careers, haunts families and yes, kills.

Patrick Leer

Health Activist:

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

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

multiple sclerosis caregiving dementia autism mental health

flu shots, f-bombs and Multiple Sclerosis

Bringing Patti some comfort food for dinner at her care facility tonight I expected to find her in bed. “Hey there! I hear you are not feeling well.”

“Yeah! I’ve got some f#cking flu thing or whatever and just want to go to sleep!"

Actually her cough began three evenings earlier. It was so gross to listen to during an outing that I had jokingly offered her the cat’s hair ball remedy.

By the next morning she was presenting all the flu symptoms  including fever over 100˚F, except nausea. After being examined by her doctor, decongestant and additional sinus meds were ordered along with a portable chest x-ray. 

Personally I still find it bordering on magic that doctors make house calls to care facilities and x-rays machines come to residents.

Fortunately the x-ray determined no evidence of pneumonia, bronchitis, or more dangerous for someone like Patti with MS related dysphagia – aspiration pneumonia.

Patti had previously received the flu vaccine but as ‘we’ have learned some people can still get the flu even if vaccinated. Fortunately it will be milder than the real McCoy. However Multiple sclerosis is an autoimmune disease and Patti’s immune system is the proverbial new frontier.

Her fever statistically peaked yesterday at 101˚ in between Tylenol dosages. Her cough was reported as croupy.

Today’s high reading was 99.5˚F. Her cough remained croupy and her voice while hoarse was still capable of f-bombing the flu. After convincing her to try a cup of fruit because it contained peaches, which she loves, she conceded it was indeed “a cup of good f#cking shit”.

Fatigue was ruling her world and she is in the right place to maximize bed rest. 

Sooo we watched the Simpsons on TV, one of her favorites, while I fed her dinner in bed from Helena's Chocolate Café & Crêperie.  The care facility kitchen does a wonderful job but … what could be better for the flu than a dark chocolate and strawberry crepe? ... Duh! A dark chocolate raspberry ganache cupcake, of course. 

Only family and friends can provide TLC. Only an advocate can make noise for someone unable to direct their own medical care when so many residents are affected. Reverse the roles what would you rather have - professional care or TLC bearing dark chocolate cupcakes? 

Visit the sick and don't forget the cupcakes!

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

caregiving and cell phones

If someone you care for is unable to explain their health care needs to medical personnel it might jeopardize their life if you as power of attorney (POA)/medical advocate cannot be reached.

This fundamental truth does not change with the care facility era.

Recently I have found myself in conversations with a newbie to the care facility era about cell phones.

As I type this my mouth is still hanging open over the thought of leaving my cell phone at home by error much less on purpose daily. … Years into this I still take my cell phone into the bathroom with me, just in case Patti's care facility calls.

Having faith in an institution is wonderful but that is an assumption and we all know what happens when one assumes (Assume = Ass out of U and Me).

24/7 care has not changed that I try to be reachable and ready to respond 24/7.

I get that confidence can seem coolly detached and may even be encouraged but if the door swings both ways then the other side would sure seem cold-hearted to me?

Practically speaking something could happen to an escort/companion from a care facility. How would they even recognize that the personal medical history is wrong? Case in point, about two years ago Patti was taken to an orthopedic specialist except her ‘professional’ facility companion brought someone else’s x-ray.

Calling me on my cell phone while she was still there I was able to talk them through how to find the correct x-ray on line so the appointment could be successfully completed – otherwise the whole trip either would have been wasted or worse.

I even have mine programmed for a specific ring tone for Patti’s care facility so if driving, in a meeting, or in the shower (I can always turn the water off) whatever it does not matter – I answer.

My phone is not even 'smart' it does nothing except send and receive calls. 

Kids! They have a whole new way of thinking.

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