butterfly effect MS parenting

Almost 20 years ago, a fellow pre-school parent introduced herself and asked if I could help her understand living with Multiple Sclerosis as a family. She was a psychologist treating a 35 yr old patient and felt her patient’s childhood and teen years raised in a family decades earlier with a parent with MS could be a factor in her patient’s adult mental health challenges. There were no professional resources on this topic.

So it seemed providential while preparing this second part to the butterfly effect entry to read in the Washington Post,  A parent’s multiple sclerosis can take heavy toll on children 

“As a teacher, Levenson came across other children who had parents with MS and who reminded her of herself at that age. She said they were “battling feelings of isolation, embarrassment and anxiety, and the overwhelming sense that no one else understands.”

The butterfly effect of a Multiple Sclerosis diagnosis impacts more than caregiving, before all else - children.

“MS can be a very frightening thing for anyone to deal with in the family but especially for children …

… it can be physically demanding on a child if a parent is unable to walk properly and has to use a wheelchair ...

… If a parent can’t feed themselves very well the child maybe brought in to help … embarrassing and almost a role reversal really with the child becoming the parent and the parent becoming the child ...

... Cognitive problems in a parent can be very frightening. If a parent isn’t able to think properly or plan ahead … he or she can behave in a way which … does not appear to be in the best interest of the child ...

... There are many, many emotional stresses upon children. There are positive gains for children of MS and all the research shows that it isn’t necessarily a bad experience at all in the long term. Just as many, if not more, children are coming out of this experience having benefited from it in a strange way than there are actually who have been hurt by it in some way.” MS and Children (2008) from the Multiple Sclerosis International Foundation

related - butterfly effect MS caregiving 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

caregiver or carer

Alas! the barrier of a common language. In North America, we are “caregivers”, everywhere else in the English speaking world we are “carers”.

Communicating between or with similar caregivers / carers should be helpful. Yet, secondary labels such as family, spousal, sandwich, elder, parent, child, and informal often confound rather than clarify.

Giving care is dynamic and often unique in needs. We become defined by our circumstances.

‘Juggling’ is the only phrase I have ever found to describe balancing caregiving for my wife with progressive Multiple Sclerosis while basically single parenting and raising our daughter – which has occupied 21 years of my life.

In the beginning a person struggling for independence following a life altering diagnosis or disability may bristle at unsolicited though well intended offers or labels of a family member or friend as their carer / caregiver.

On the other end of the spectrum, when progression evolves to the care facility era are you still a caregiver / carer?

When some of us become legally empowered to make decisions for another, it’s odd that neither the word guardian nor advocate involves the root word ‘care’.

Regardless of labels or situation I believe we share some common denominators.

The carer / caregiver chooses to step forward as sentinel. There is no lengthy deliberation over how to care, how to spend money on care, and the future of care.

I believe we can all agree that we are the ‘hands on’ family or friends of an individual who needs help with his or her activities of daily living.

I believe most of us feel we are alone.

We have no secret handshake. There will be no gold watch, no retirement plan. We cannot even agree on what we are called.

Most important, we’ve chosen to turn from ordinary people to something different.

Tonight, Patti and I sat sipping hot chocolate while snow flurries danced around us. While Patti’s memory of the moment melted with the snow, I couldn’t help but reflect perhaps we caregivers / carers are like snowflakes and no two are the same.

                                                          

Special thanks to Elder Depot Caregiver's Corner for

Great Big List of Caregiver Blogs

by Patrick Leer

BLOGS:

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

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

teen autism: soon it will be again

Sharing a home with teen autism and repeatedly hearing phrases such as “soon it will be again” never ceased to intrigue me. Communication challenged or insight?

Early in July, J & T returned to Massachusetts after almost two years here in Pennsylvania. … Soon it will be again?

Immediate needs of individual caregiving swallowed the idealism of two long term caregivers as mainstays for each other.

Living with teen autism is above all about autism, 24 hours a day, 7 days a week.

States herald programs and services. Reality is a picture painted by funding or lack thereof. Services and programs are as necessary as air to breathing.

One summer in Pennsylvania rippled for months through both their lives. With only half a day, three days a week of summer school special education contrasted with full day, 5 days a week in Massachusetts routine cracked. For Tyler that meant anxiety surged. For Jennifer as a single parent school hours are the ‘the work day’; a loss of the majority of income for even a couple months impacts everything.

More significant is what may or may not be available when Tyler turns 21, only 3 years away.

Less now is not likely to become more later. As a parent you do whatever it takes for your child.

Back when Tyler was diagnosed with autism the prevalence was 1 per 384 children. NIH recently used the prevalence of one in every 91 children.

We are only seeing the tip of the iceberg of autism thrusting up into adult age and the quest for adult services.

As dependent adults what will they do, where will they go?  Can you even imagine how poignant those questions are for a parent?

These are extraordinary parents who have nurtured their younger child time after time beyond what they were told their child would never do.

Parenting a teen as most know it is about nurturing independence. 

Parenting teen autism is about preparing to grow old with autism.

“Soon it will be again.” 

Caregivingly Yours, Patrick Leer 

videos: http://www.youtube.com/daddyleer 

Father's Day: to memories and beyond

Ah yes, Father’s Day. Hard to forget Father’s Day weekend 13 years ago. Watching, holding, sharing my own father’s dying hours of pancreatic cancer through the longest night. The time of angels jumbled with a lifetime of memories.  

Multiple Sclerosis turned our family dynamics and roles topsy turvey. Never have found the proper father label. Caregiving and parenting had to coexist. Certainly won’t figure it out today.

An 11^th hour change in our daughter’s work schedule changes family plans. How many times has that happened in my own life? Odd to be the receiver instead of the changer.

Though dependent Patti is still a daughter and needs to share her own Dad’s Father’s Day celebration. Securing her into our wheelchair accessible van, she remarks “Why are the birds making so much f#cking noise?” Several MS symptoms involved here but I admit I enjoy a laugh at her perspective on the day.

By default we end up splitting the day between MS time and well family time as we have sooo many times before. Patti returns to a desired and deserved nap.

Later our daughter offers to take and treat me to Toy Story 3 since when she was a kid I took her to the first Toy Story.

Reminiscing, MS took Patti out of the physical side of parenting that was cruel. Yet the world I stepped into was beyond cool.

Learning to play with Barbies. Learning to ice skate in my 40’s to keep up with our daughter. Being the only Dad in ‘Mom and Me’ classes for gym, swimming, and dance. Playing board games like “Pretty Pretty Princess”. ‘N Sync, Spice Girls, Pokemon …

Then it is circle of life time. When I took Megan to see the original Toy Story I paid adult and she was a discounted child ticket. As our daughter pays for Toy Story 3 tickets she pays adult and I am the discounted senior citizen ticket. … I will NOT go quietly!

Challenging and barely defeating Megan in an air hockey game in the arcade I order a large Buzz Blast drink from the concession stand. To infinity, and beyond!

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Multiple Sclerosis parenting nature vs nurture

With Mother’s Day approaching what family with a parent with Multiple Sclerosis has not reflected at one time or another on MS and genetics?

“An incredibly important negative” on the role of genetics in the nature vs nurture and Multiple Sclerosis debate may not be the most conventional Mother’s Day gift but “Thank You”” to Nature (international weekly journal of science) and its recently published study of identical twins with the same genetic risks for developing Multiple Sclerosis, yet one does and one does not. 

“genetic factors seem to have been insufficient to cause disease on their own … although both twins had the same predisposition for the disease one was exposed to the perfect combination of environmental triggers”

What triggers? Well, The Multiple Sclerosis Resource Center of Essex, UK offers one of the most extensive collections of articles on environmental (nurture) factors, 

Environmental Factors And MS Research including studies related to smoking, gender, vitamin D, geography, climate, MS population clusters, Persian Gulf War, barium, and medical employment.

In our two decades of living with Multiple Sclerosis as a family, theories about causes ebb and flow. You cannot get too worked up about any one study or alleged breakthrough.

Yet as parents … genetics is one boogeyman you can never quite banish back under the bed. “An incredibly important negative” IS welcome any time.

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

Inauguration, MS, and caregiving, Oh My!

Raising a child while living with Multiple Sclerosis, you always kind of wonder even worry about what affect it all may have on their future.

While the world watched Barack Obama become the 44th President of the United States. Two of us watched and felt the weight of anxiety lift for there at the center of the world stage stood Michelle (Robinson) Obama, raised by a parent with Multiple Sclerosis.

ONLY a caregiving family would even have noticed much less discussed how former Vice President Dick Cheney and family dealt with what appeared to be your everyday workhorse Everest Jennings Folding Wheelchair with surprising skill.

In this politically diverse household with two Democrats, one Republican, and one Independent it is interesting that only the Republican and Independent voted FOR Obama for President.

“… why a man whose father less than sixty years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath.”

Raised in neighboring Maryland, I believe it was more like 45 years ago when de jure segregation ceased to be. Had President Obama been born in either Maryland or Virginia his parents could have been imprisoned for up to 10 years under miscegenation laws not repealed until 1967.

“… with remembrance, of who we are and how far we have traveled”

From a wheelchair Patti has witnessed two Clinton, two Bush, and today’s Obama inaugural.

"...we did not turn back nor did we falter; and with eyes fixed on the horizon and God's grace upon us, we carried forth …”

Picking her up to view the Inauguration I had to bait the hook with lunch and a trip to Walmart. “Walmart! I like that part, they have good shit!”

Certainly not the kind of ad Walmart could use, but you get Patti’s drift. In our universe we move forward by pushing.


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

juggling through time

Juggling spouse caregiving and parenting was about making sure I made the time.

Recently reading an article about children’s television, a new report singled out only eight programs that have "exemplary" educational content.

Memory smiled as I found ‘Beakman’s World’ still listed and this picture from 12 years ago …

Do not get me wrong, I can also still name the colors of the Power Rangers, rattle off a couple dozen Pokeman, and know who Littlefoot, Cera, and Duckie are. NONE of which are on the list of ‘exemplary’ educational content …

... yet often shared time together trumps on the parallel tracks of parenting and spouse caregiving.

Caregivingly Yours, Patrick Leer

website: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...