'accessimals' Pennsylvania Farm Show

24 acres under roof, spread throughout 11 buildings the Pennsylvania Farm Show is the largest indoor agricultural event in America and somewhat of an Olympics for physically challenged visitors and caregivers.

Expanded “handicapped parking and access areas” are a plus however there is always a time consuming logjam at the too few elevators necessary to move between buildings if you are not a walker.

Yet we have learned to navigate between buildings through the outside, backstage world of exhibitors and animals. 

No logjams out there and with 50 °F (10 °C) temps in January it was a beautiful day for visiting, like with a guy who mucks out the stalls wearing a t-shirt, “shit happens”. Priceless!

Bent Pine Alpaca Farm caught our attention not only because of their unusual farm vehicle but their story of a small "mom and pop" ambulance and wheelchair van service transitioning to alpaca farming.

There is no condescending treatment or ‘invisibility’ involved with a disability around animals. Goats are always the most interactive and this one had no scrupples about luring Patti closer so he could try and take a bite out of her wheelchair.

Less manipulative than goats, this draft horse, this size of a dinosaur, could not have been gentler in dealing with Patti.

Yet the real lure is the food court! Dairymen’s Association for milkshakes, Mushroom Growers for breaded mushrooms, Livestock Association for lamb stew then Potato Growers for a potato donut for desert and a bag to take back to care facility staff.

Patti’s Multiple Sclerosis symptoms of lack of eye-hand coordination and inability to keep her hand stable enough to hold a spoon of stew necessitates me feeding her. Patti had no qualms about that, she wanted lamb stew! And if I may say so it was the best I ever tasted.

Patrick: Patti! What is that animal next to you?
Patti: I can’t really tell, I think it is an armadillo.
Patrick: An armadillo? Your head is a strange place.

Patti: (dissolving into laughter) Yes it is! And it sure needs a nap.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

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

healthcare the vote heard 'round the world

Is Massachusetts some root for historical change? Revolutionary legend and lore echoes of the "shot heard 'round the world" at Lexington Green. Next week Massachusetts voters cast not only their vote for US Senate but essentially a proxy vote for current US health care reform legislation, as the critical 60th US Senate vote is at stake.

Outside looking in I see a political version of the Mad Hatter’s Tea Party.

On one hand the White House exposes health insurance companies for attack ads:

“A new report today confirms one of Washington’s worst-kept secrets – that big insurance companies are fighting tooth and nail to kill health reform that will wrest power from their hands and give it to American families. …” White House Exposes Health Insurance Companies On Health Care Reform 

Yet, at the same time with the other pocket …

“…the health lobby is riding to the rescue of the Massachusetts liberal … the host committee for the fundraiser includes lobbyists for Pfizer, Merck, Eli Lilly, Novartis, UnitedHealthcare, Blue Cross Blue Shield, Humana and other insurers … lobbyists from America's Health Insurance Plans and Pharmaceutical Research and Manufacturers of America, the major trade groups, were on hand too…” Coakley's Saviors: The health-care industry rides to the Democratic rescue 

Turning down the backstretch the race is neck and neck. Martha Coakley (Democrat) leads with 49 percent over Scott Brown (Republican) at 47 percent and Joe Kennedy (Libertarian).

Lobbyists, big money, and national attention aside, Massachusetts was the first State to not only tackle health care reform but experience living with it. While this is their election for their US Senate seat, who better than the people of Massachusetts to cast the first proxy vote on national health care reform.

------------ 
updated 1/19/2010
Scott Brown (Republican) WINS with 52%, Martha Coakley (Democrat) 47%, and Joe Kennedy (Libertarian) 1%


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

Whac-A-Problem

Long term caregiving for Multiple Sclerosis is too often like playing Whac-A-Mole.

Up pops change!

That change by default affects me as caregiver and medical advocate, when MS level of disability is as high as Patti’s (EDSS score > 8). Frustration is an understatement and depressing is not a manly-man word, so my head is somewhere in between.

Long story short – Patti needs to move from her room in one wing of her care facility to another.

Typing the above paragraph it does seems like a non-issue. However when you have to make decisions for someone else who cannot direct their own care, believe me, nothing is ever a non-issue.

As much as you want to believe you have care under control you never really do whether at home or away.

Up pops change!

Changes in the bigger picture of the business of long term care have eventually rippled down to the simplest.

Back in 2007 the National Commission for Quality Long Term Care observed “a shift among nursing homes towards the delivery of short-term, rehabilitative post-acute care, mostly financed by Medicare.”

While I have been aware of their business transition converting one wing to short-term, rehabilitative care I have been somewhat sticking my head in the sand. On the other hand Patti’s care facility has been busy waiting for and reviewing the optimum best of possible change in room scenarios for Patti.

I should be comfortable that a ‘team’ is not only caring but working to find the best transition.

Patti herself ranged from oblivious to indifferent when we talked about it. Significant topics usually require a couple days of attempted conversations to break through the MS cognitive and memory symptoms.

Grasping for distraction, I found an old picture from 1983 of Patti and I playing whac-a-mole before Multiple Sclerosis.

Yet this is now and it’s back to whac-a-problem.

“If I had a hammer
I'd hammer in the morning
I'd hammer in the evening
All over this land”

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

cluster headaches - fall out

Sorting through an abnormally unruly pile of year end paperwork waiting to be filed, I am forced to remember that 2009 included my longest and worst episode of cluster headaches, 9 weeks in duration with 95 cluster headaches.

“If someone in your home is seriously ill …”, I never really even noticed that line on a late utility bill from that period until recently sorting files.

Was I seriously ill? Are cluster headaches disabling? Debilitating?

Yes, yes, and yes but only during an actual cluster headache and that could mean 15 minutes up to 2 hrs in duration. One would be hard pressed to find a medical professional to declare you seriously ill, disabled, or debilitated for intermittent specific blocks of time.

And of course who except someone who actually has cluster headaches can understand the fall out of the shell shock and sleep deprivation that accumulates between cluster headaches as the episode runs its course.

So how do you answer the question, “If someone in your house is seriously ill…”? Not NOW, but if you come back around 2:30 AM and watch you will see a horror short that will freak you out of your skin.

However that was then and this is now. 2:30 AM will find me asleep!
-----

Curious what the picture is of? Guessed yet? … You are looking at discarded blocks of ice from our backyard bird bath.
-----
For more cluster headache entries:
CLUSTER HEADACHES: BRAIN WRITHING ON A CORKSCREW

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

electronic health records

Remember almost a year ago?

“… the Obama administration plans to spend $19 billion to accelerate the use of computerized medical records in doctors’ offices. Medical experts agree that electronic patient records, when used wisely, can help curb costs and improve care….” How to Make Electronic Medical Records a Reality, The New York Times, Feb 2009

For seven years I have had my yearly physical in the same medical office and my blood work sent to the same lab. For seven years I paid my co-pay at the time of my physical and medical insurance paid for everything else.

Welcome to the era of Electronic Health Records! I got bills! After way too much time wasted on hold and or trying to get through electronic voice prompts, hallelujah! I reached a living human being.

Apparently the foundation of training for the transition to electronic health records is ‘finger pointing’. Little to no training has gone into how to fix anything. Unless of course the plan is for the patient to spend hours on hold or trying to get through electronic voice prompts to figure out the problem and fix it themselves.

It seems electronic records are only as good as the people that have to begrudgingly input data into them, apparently as little as possible or as inaccurately as possible considering the constant interruptions of any physician’s office.

Even Patti got a certified letter containing a bill at her care facility requiring her signature!!! Theoretically an impossible scenario, that is, until the era of electronic health records.

Dear Mr. President … any room in that $19 billion to reimburse “we the patients” hours on hold?

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

teen autism: diagnosis, a hitchhiker's guide

Confusion is never good when it comes to support and help. From the outside looking in, yes, teen autism is beyond confusing.

Teen autism has been around. It just may have been diagnosed differently and certainly treated differently. Yet this is now and this is our time.

Autism (from the greek word meaning “self”) was first used in psychiatry in the early 1900’s as a symptom of schizophrenia.

In 1994, the American Psychiatric Association revised their Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Following this, the number of students aged 6-21 with ‘autistic spectral disorders’ increased by 885% between 1994 and 2006, while during the same period the population of the United States only increased by 14.7% “New Data on Autism Spectrum Disorders (ASDs) from Multiple Communities in the United States.” CDC 2007

Debating semantics of a health problem is a bit like everyone standing around pointing fingers about what to call the hole in the dyke while the little Dutch boy spends the night plugging it with his finger.

At the crest of this growing wave of children are now teens and young adults unable to care for themselves or even communicate. They need dramatically different resources.

Lacking any psychobabble initials after my name I put together an amateur visual aide for myself with types of teen autism and more familiar IQ scores to better understand.

This hitchhiker has only shared living with severe teen autism and moderate/mild mental retardation to the left of the pictured spectrum. That is what teen autism means to me.

Teen autism resources and services are limited and must be mined by families, too often competitively. A parent living with lower functioning teen autism and unable to leave their teen unattended has less time. Is it fair, no!

Then again, who should get the limited resources? That’s playing God time, and way out of my league.

Bottom line there needs to be more help and support and a lot less confusion.

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

pickle drop at Ireland's midnight in Pennsylvania

Sometimes you just get lucky. With “winter mix” forecasted to glaze the evening hours of New Year’s Eve I stumbled across a news item that Dillsburg would be dropping two pickles this year.

Mr. Pickle would be traditionally dropped at Midnight, however Ms. Pickle would be dropped at 7 PM to coincide with Ireland’s midnight celebrations and as an alternative for all those who wish to celebrate earlier.

It seems the original founders of Dillsburg were Irish immigrants.

Yet considering Multiple Sclerosis fatigue this was tailor made, and it gets better. … Ms. Pickle would be dropped “inside” the fire house.

Bring on that winter mix! We headed to an indoor New Year’s Eve pickle drop.

Dillsburg is a small enough town that I could call the home of the pickle drop organizer and ask about accessibility. Her husband’s suggestions for parking and wheelchair access were absolutely perfect!!

Then again maybe it isn’t all about luck. My maternal grandmother was born in Ireland near Kilcully in County Cork. Maybe some Irish DNA at work here? … Athbhliain faoi shéan is faoi mhaise daoibh = Happy New Year’s to you in Irish Gaelic.

It was a hoot! Pickle soup was surprisingly good! We even took a quart to go back for staff at care facility. I boldly tried a chocolate covered pickle, Patti refused. Not bad but not as good as the pickle soup.

Games, activities and a magician entertained while we waited for the countdown to the pickle drop.

The lowering of Ms. Pickle was a classic that is until the rope snapped and Ms. Pickle crashed to the floor.

While I may need psychiatric help to overcome the trauma, Patti on the other hand found this hysterically funny.

All in all, it was a best of possible “living with Multiple Sclerosis” New Year’s Eve. Accessible, weather proof, laugh filled, and Patti was tucked in bed by her preferred bed time of 8:30 PM.

Thank You, Dillsburg!

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

car talk for caregivers

Is it possible to wear caregiving on your sleeve? I am beginning to wonder if it is not some kind of aura.

Our old faithful 2000 Ford Taurus SE Wagon was declared ‘totaled’ on Christmas Eve following a snowy accident the week before. (stranded in the snow)

Ever since living with Multiple Sclerosis entered our lives vehicle needs are different than most people.

Pulling out my measuring tape tends to derail sales pitches. There must be room for a wheelchair or scooter. While yes we have our Dodge Grand Caravan IMS RampVan (wheelchair van), our second car must be able to serve as a back up.

Patti needs the option to pull herself up on the vehicle’s door frame out of her wheelchair, the strength of door and height of vehicle matter. You may be surprised how many vehicles only have a door bottom with the upper part window glass only.

Dealers often were in the ‘inquiring minds’ mode. Some either had a relative or friend caring for an aging parent or special needs child.

They more than knew the ‘statistics’ of US auto accidents after all it is part of why people need to buy cars. 

The ripple effect of those dependent on that ‘statistic’ is a sobering perspective. Every 12 minutes someone dies, every 14 seconds someone is injured in an auto accident – what happens to those at home dependent on that person?

The majority of car accidents occur less than 5 miles from your home. How many home caregivers roll the dice every day, just quickly running out for something?

To me a 20 yr caregiving veteran, that’s life. I was surprised to see non-caregivers give it thought and concern. Of course, they are sales people and who knows how genuine.

Whatever … after days on the internet and days visiting dealers it was time to park a 2008 Kia Rondo V6 LX in the driveway, kind of a station wagon on steroids.

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

care facility calendar

Visits and outings are functions of time to those on the outside of a care facility. They may be perceived quite differently to those who reside in a care facility where time often moves at a different pace.

With New Year’s comes an annual focus on calendars. We use oversized wall calendars, 30” high X 20” wide (76cm high X 51cm wide) both in Patti’s room at her care facility and at home in our kitchen.

The calendar in Patti’s room serves double duty allowing visitors to sign in and staff shifts to get a better picture of Patti’s world. Additionally the wall calendar helps to supplement Patti’s Multiple Sclerosis related memory loss.

More importantly to me is that the wall calendar at home dramatically tracks 'care time'. It is too easy to allow day to day life to swallow up your time. When it is in your face every time you enter the kitchen you are less apt to forget to make time for an outing or a visit.

December was a good example. In spite of three snowstorms, holiday shopping, busier work schedule, stranded away from home for two nights following a car accident, and oodles of time associated with that I was still able to average 4 nights per week of outings with Patti and getting her ready for and into bed at her care facility myself. My usual average is 4.5 nights per week.

Believe me that kitchen wall calendar in my face makes the difference time after time. There are so many days when considering my ‘to do’ schedule that I glance at it and realize I must revise my schedule because I MUST work an outing into ‘this day’ to keep my weekly goal.

In the care facility era it is simply too easy to get distracted, you MUST keep ‘care time’ in your face not just your heart and thoughts.

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

stranded in the snow

Driving home from Washington DC Friday evening (Dec 18) with only the earliest traces of snow beginning to fall, another driver lost control of his car spinning across 4 lanes of traffic ricocheting off a Jersey barricade and ending up crashing onto the front of my car.

Fortunately no one was injured, unfortunately my vehicle was disabled. Towed to the closest hotel I was swallowed by the ‘Blizzard of 2009’ as snow continued to fall for over 24 hrs totaling 22 inches (56 cm).

With daylight I went hiking in zero visibility snowfall in only walking shoes to forage for toiletries, food, and a change of socks and underwear. I discovered a Burger King basically catering to snow plow operators. When is a whopper “haute cuisine”? When it is the only hot meal in 36 hrs.

Stranded you meet people you never would have ever met or shared a warm cup of coffee with. After two nights at a Red Roof Inn I was finally ‘extracted’ Sunday afternoon by Jennifer and Tyler!

Procrastinated shopping and holiday activities are now replaced by insurance related activities and ‘waiting’.

It is oh so easy to be blinded by frustration when there really is so much to be grateful for. Even the driver who crashed into my car called me to apologize and thank me. He had been praying and thanking God for sending me to that moment in time when his car was spinning out of control; so many catastrophic outcomes could have happened.

So far, GEICO representing him could not be trying any harder to make things right. While tempted to declare their gecko as my new BFF, let's see how this plays out, first.

When I finally could spring Patti for an outing from her care facility she was in good spirits and ‘yes, no, maybe’ kind of aware of my odyssey. Multiple Sclerosis memory loss and mental confusion creates its own timeline. Though she was certainly ready to roll decked out in her wheelchair gloves and holiday painted nails.

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

The Care Jacket

The weather outside is frightful but this offer is so delightful.

Join one of the latest pop-culture phenomena!

The Care Jacket™ keeps you totally warm and gives you the freedom to use your hands!

Perfect for:

• Pushing wheelchairs
• Transferring
• Promoting your favorite care products
• And much, much more

Buy one NOW and get this eclectic caregiver collectable, “The Transfer”, Free!

Watch out Snuggie! WE are 44 million strong in the US and growing.

P.S. All pictured products are figments of this author’s imagination, but “one never knows, do one”?

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

wheelchair dance

While visions of sugar-plums dance in everyone’s head this time of year, some special ones work to bring dance, dreams and caring to life.

"One dances in the wheelchair and the other dances near the wheelchair, and spectators marvel at their friendship as well as their moves...."

12 Days of Caring: Girls find the right way to move in wheelchair dance class

"... Katrina Thomas and Kirsten Stewart are 12-year-old best friends from York County who are starting a new dance season in a wheelchair dance class run by Nancy Ehrlich. The class is part of the non-profit PECAN, or Progressive Education of Children in the Arts Network...."

" ... Ehrlich is a lifelong dancer who suffered a spinal injury in 2002. Using her own wheelchair, she started the dance program that is entering its sixth season. ..."

Do not go where the path may lead, go instead where there is no path and leave a trail. -- Ralph Waldo Emerson

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

too busy caregiving for affair with Tiger Woods

Alas, I confess I have never had an affair with Tiger Woods. Though I suspect this entry may get more hits than those simply entitled caregiving, Multiple Sclerosis, or teen Autism.

Thanks to the National Alliance for Caregiving, AARP and MetLife Foundation:

CAREGIVING IN THE USA, 2009 

If the 74 pages do not interest your curiosity they SHOULD and if not now, they WILL.

“More than 3 in 10 US households report that at least one person has served as an unpaid caregiver in the last 12 months, leading to an estimate of 36.5 million households with a caregiver present.”

Even if already a caregiver it gives you an idea how you may be perceived or misperceived.

According to “Caregiving in the USA, 2009”, caregiving lasted on average 4.6 years. Just past my 20th anniversary as a caregiver, obviously I am a horse of a different color. Life long caregiver parents of special needs children who grow up to become special needs adults obviously warrant elite status.

Regardless of distinctions it IS a detailed look into what SHOULD be capturing our attention.

"...the moral test of government is how that government treats those who … are in the shadows of life; the sick, the needy and the handicapped." Hubert H. Humphrey

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

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