You might be a caregiver if …

You might be a caregiver if … menthol is your eau de cologne.

Thanksgiving morning began with rubbing Mineral Ice into my shoulder and upper arm muscles and applying a Ben Gay back patch to my lower back. So too would Thanksgiving end, and the next morning begin.

At Patti’s level of Multiple Sclerosis (EDSS 8+) caregiving is physical caregiving. Ironclad in menthol, perhaps even hallucinating on menthol, I was pumped up and ready for my 20th anniversary as a MS caregiver.

Besides the multiple transfers, clothing and Depend changes, and monitoring dysphagia related choking through dinner, Thanksgiving for Patti was a safe, happy, and family filled holiday.

Interestingly I discovered I could take a picture of those ol' family slides projected on a wall and with a little photo editing we have Patti and her brother both now and then.

'Black Friday' is always a travel day for me to and from New Jersey to visit maternal cousins. While I treasure them all, there is one who though so young has so much to teach about the will to live. Less than a handful of years old, he has survived premature birth, chemotherapy, and liver cancer surgery while living with Infantile Myotonic Muscular Dystrophy.

There may be no 'beaten path' for navigating the holidays, but if you look there is inspiration! ... and there is always eau de menthol.

Caregivingly Yours, Patrick Leer
videos: http://www.youtube.com/daddyleer

flu vaccines Multiple Sclerosis

"The reason why the flu is more difficult and potentially damaging to individuals with MS is three-fold.

First, if individuals with MS get the flu, they must endure the associated aches and pains in addition to their normal MS symptoms.

Second, high fever accompanies the flu, and an elevated temperature may increase MS symptoms, affecting one's overall wellbeing.

And third, the body responds to the flu with an outpouring of gamma interferon, a chemical that increases the risk of an MS exacerbation. For this reason, individuals with MS who catch the flu have a greater chance of experiencing an MS attack within several weeks following their influenza (flu) illness."
Flu Vaccines MSAA The Motivator Fall 2009 

NMSS Flu Vaccines—2009-2010 (11/19/2009) 

While Patti has already been vaccinated for both seasonal flu and H1N1, living with Multiple Sclerosis demands that family and caregivers keep in mind how damaging the flu can be. Double down your bet and get yourselves vaccinated, our daughter and I have done so.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

20th anniversary MS caregiver / Thanksgiving

“It was twenty years ago today,
Sgt. Pepper taught the band to play
They've been going in and out of style
But they're guaranteed to raise a smile.
So may I introduce to you
The act you've known for all these years …”

25 YEARS AGO
Patti had the briefest episode of slurred speech and numbness in her fingers.

“Probable MS?” Patti felt fine, never reoccurred. Damn the torpedoes full speed ahead.

20 YEARS AGO
November 1989 … National Zoo, Washington DC.

Thanksgiving morning, 1989, Patti awoke in a different world unable to walk, barely able to see and talk. Thanksgiving Day would end with her hospitalized with first Multiple Sclerosis exacerbation.

THREE YEARS LATER, 1992,
We were living with Multiple Sclerosis AS A FAMILY. scooter sleigh ride (1:16)


TEN YEARS LATER, 1999

"If you find there the meaning of what happiness is … Then a new life will begin”

FIFTEEN YEARS LATER, 2004

The care facility era dawns

SEVENTEEN YEARS LATER, 2006,

“it poured sweet and clear It was a very good year”

And, as of last Thanksgiving  ... we’re still “guaranteed to raise a smile”

Oh yeah, along the spouse caregiver path there was one hernia surgery and my back is sore more than I admit. My first episode of Cluster Headaches occurred that original year, alas my Achilles Heel.

Yet considering that I did not even have a clue as to how I would get through that first overwhelming Thanksgiving, there really are infinite reasons to give thanks!

Thanksgiving wishes to us all, every one!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

cognitive function multiple sclerosis

“It’s one of the most sensitive topics among people with MS—we’re talking about how MS affects your mind, about cognitive function …”

“Cognitive changes are thought to affect about half of those who have MS ….”

MS and the mind: The latest research on cognitive function 

Reading through the above article in National Multiple Sclerosis Society MOMENTUM magazine, winter ’09-’10, I had mixed feelings. Certainly I was glad to read of 4 pages of current and pending research yet I was baffled as to why the ‘major players’ have been so slow in coming around.

Last winter the Multiple Sclerosis Foundation invited me to write an entry for their MS FOCUS magazine entitled A CAREGIVER’S PERSPECTIVE, MS AND COGNITION
   “…We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often…”

In the NMSS Momentum article under “treating cognitive change” they mention looking at drugs used to treat Alzheimer’s disease. A study of donepezil (Aricept) is recruiting people with all types of MS.

Six years ago Patti’s nurse practitioner suggested trying Aricept. Her neurologist hemmed and hawed about lack of research but acquiesced. Not only has Aricept slowed cognitive progression to the eye of the observer but it has demonstrated through MRIs a slowing of rate of cerebral atrophy.

The frustration with cognitive function is that the person affected is the last to be aware. Family, friends, and medical contacts have to find a way to cross this line. I am not sure that patience is a virtue in fighting this symptom of Multiple Sclerosis.

“Of all the things I've lost, I miss my mind the most” Mark Twain

video: Multiple Sclerosis cognitive challenges (3:23)

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

holiday kitsch

Living with Multiple Sclerosis and spouse caregiving is not always serious. There are smiles and there is laughter.

Martha Stewart, eat your heart out! Give me kitsch and tacky any day!!!

"It's beginning to look a lot like Christmas
Ev'rywhere you go ..."

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

d-i-v-o-r-c-e multiple sclerosis

Men as spouse caregivers seem to be the media piñata of the week, specifically for spouses diagnosed with Multiple Sclerosis or Cancer.

Feelin' Sick, Ladies? Better Hog-Tie Your Man 
“I've read a lot of depressing news about the state of marriage recently, but none more dismal than a new study …”

'In sickness and in health' has different odds for women than for men 
“Many people have assumed that men are less likely than women to stick by a seriously ill spouse. That assumption might not say much for men. Yet it appears to be true. …”

Men leave: Separation and divorce far more common when the wife is the patient 
“A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient …”

Thanksgiving morning will mark my 20th Anniversary as a Multiple Sclerosis spouse caregiver. This past July was our 24th wedding anniversary. In December will begin my 59th year as a male.

I am quite sure I am not the only one.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

caregiver mortality: what if?

Statistics clutter the internet. 30% of caregivers die before those they are caring for. Spouse Caregivers are at 63% greater risk of death than non-caregivers. Family caregivers have been shown to age prematurely, as much as 10 years off a life.

More important … what about the surviving person of need?

Successful caregiving situations are as unique as the people involved. Loss of a caregiver is no statistic it is the unraveling of the fabric of living and caring. 

In our story, we learned you have to plan for the worst. Of course hope, but plan while you can. Talk about when, how, what, why and who will step in.

We began to talk about and develop a ‘best of possible’ plan for Patti. 

Homecare was never an Alamo for Patti. Patti did not want our daughter to have to sacrifice her life as her home caregiver. Past experiments with home care helpers had always ended poorly. Other family or friend options were not 24/7 dependable. 

We began to look at care facility options from independent living communities through nursing homes. 

Assisted living seemed ideal but after visiting we learned it was not an option for Patti’s level of Multiple Sclerosis progression. 

To replace my level of home caregiving necessitated a 24/7 nursing home level facility. 

We kept discovering there was so much to compare and consider. God help families that have to do this under immediate need conditions.

A family caregiver is an economic godsend. Paying to replace their services is astronomical.

Financial and Estate Planning became a MUST. 

Before cognition became an issue of competency we met with a lawyer and Patti assigned me durable general power of attorney. We additionally established secondary people so transition would be seamless should something suddenly happen to me.

Financial planning, special needs trusts, etc are not only critical but can ONLY be done in advance.

No one can predict, but anyone can plan. 

Do you know how your story would unfold, if … ?

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

cluster headaches: physicians change headaches immortal

Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of Cluster Headaches.

During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.

The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.

My first question was “What do you know about cluster headaches?” The answer was so scarily uniformed, the rest of the physical blurred.

To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.

Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.

 

I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!

Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.

Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.

In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.

Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”

Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …

Time to search for another medical guru!

Related entries:

brain writhing on a corkscrew

aka suicide headaches  

cluster headaches - my Achilles Heel 

cluster headaches continued 

cluster headaches June 2005 

cluster headaches December 2004

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

Voting, cognition, and Multiple Sclerosis

Oh, it is never boring voting with Patti. Her Multiple Sclerosis symptoms: legally blind, short term memory loss, cognitive impairment, and inability to modulate her voice volume can turn whispered assistance into … what I call ballot envy. Certainly “What the f#ck is a  prothonotary?” brought chuckles from way too many other voters.

coroner (vote for one)
Patti: “It’s a stupid idea.”
Patrick: “Stupid idea is not a choice, Democrat or Republican”
Patti: “Republican”
Patrick: “Why?”
Patti: (laughing) “They are probably better with dead people.”

Now way too many other voters are enjoying lingering and I am feeling like the straight man in a comedy routine.

Pennsylvania has no State Constitutional disqualification provision for citizens with cognitive or mental disabilities with or without assistance.

Sadly this is not true for citizens in half the United States. You can view your own State Laws Affecting the Voting Rights of People with Mental Disabilities

The National Network for Election Reform reports that beyond legal obstacles too often disabled voters encounter voting challenges, voting tests, and denial of effective assistance.

“Friends and fellow citizens: I stand before you tonight under indictment for the alleged crime of having voted.” Susan B Anthony

Poll workers often deny individuals the right to get assistance from a person of their choice and insist that an election worker(s) must assist the voter - so TRUE and our most uproarious and entertaining election memory. Voting & MS

Patti wants to vote at a polling station like everyone else, no absentee ballot alternative for her.

Pushing Patti toward the door we were surrounded by a dozen last minute campaign pitches and offered handshakes. One candidate simply opened the door for us, remarking “I thought you two might appreciate a hand.” … we thanked him with our two votes for school board.

Whether voting is a right, privilege, or responsibility or whether federal, state, or local it is what we do in spite of obstacles and enjoy!

By the way, Republican won Coroner, and door opener won School Board, so much for political science.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

disability history

History enriches people and nations. Disability also has history! Considering the obstacles, it is an extraordinary history!

It is no metaphor to say that today we are standing on the shoulders of giants.

181 years ago Rev. Gallaudet demonstrated education for all when the US House of Representatives adjourned for an “exhibition of deaf and dumb teachers and pupils”. Reading President John Quincy Adams' memoirs of that day, including questioning of students by Vice President John C. Calhoun on the “differences between power and right” is frankly captivating.

119 years ago consider assistive technology:

101 years ago the sound of a different drummer:

Disability history is told through personal letters, and articles as well as visual history such as photographs and lithographs. Two on-line friendly resources I have found are:

Disability History Museum Library

Museum of disABILITY History

70 years ago was the darkest chapter of disability history. NEVER FORGET Aktion T4: the Nazi extermination of 275,000 disabled adults and children deemed “unfit to live”. Additionally the “Law for the Prevention of Hereditarily Diseased Offspring” forced the sterilization of 360,000 people.

12 years ago the President Franklin Roosevelt Memorial was dedicated in Washington DC amid disability controversy. FDR’s reliance on a wheelchair was not publicized during his life, as there was a stigma of weakness and instability associated with any disability.

8 years ago, an additional statue funded by the National Organization on Disability was placed near the memorial entrance showing FDR seated in a wheelchair much like the one he actually used. … “It has awakened visitor's curiosity to learn more about President Franklin Roosevelt's disability and his great contributions to the country. A great majority of the visitors that come to the Memorial spend considerable time where the statue resides,” writes National Park Service Superintendent Arnold Goldstein.

"If you would understand anything, observe its beginning and its development." Aristotle

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ...