Caregiving: ABC News 'Be Seen, Be Heard'

While this email I received doesn’t really apply to ‘our story’, I thought I would pass it along to any one interested …

------------------------------------

Dear Caregivingly Yours,

 

We're contacting you to let you know of an exciting opportunity!

 

ABC News wants to know about your family, friends & loved ones. We want to hear your care giving stories-- from the difficulties and  challenges you face caring for your elderly loved ones--to ways you've managed to make it all work.

 

Get your videos in by June 22nd and you may have your story shown on ABC's special series "Role Reversal: Your Aging Parents and You!"

 

It's easy! Here's HOW:

 

Click here to directly send a VIDEO:

http://abcnews.go.com/US/BeSeenBeHeard/story?id=3279347

 

ABC News is specifically requesting 15-45 second video comments or photos.

 

HOW TO SUBMIT VIDEOS:

 

1) Via cell phone

     Record a 15-45 second clip and email it to:

seenandheard@abcnews.go.com

 

2)  Via the web:

http://abcnews.go.com/US/BeSeenBeHeard/story?id=3279347

 

NOTE: Deadline for submissions is Friday, June 22nd @ midnight EDT.

 

We look forward to hearing from you & Thanks again for your participation!

-        "Be Seen, Be Heard" Team

---------------------

 

Caregivingly Yours, Patrick Leer

Tags: Caregiving, ABC News, Be Seen Be Heard

Caregiving: an adventure

Under black skies and with severe thunderstorm warnings, I headed out Wednesday evening to pick Patti up from her care facility and bring her home for dinner and some family time with our daughter.

 

Turning on the radio in our van the warnings droned on about 60 mph wind gusts, yada yada yada. Noticing that our flag pole was looking more like a limbo pole I did get out and lower the flag before driving off.

 

Arriving near the care facility I had to juke around a couple side roads to get around emergency vehicles blocking the main road. Once at the care facility I discovered it darkened. Even the automatic front doors had to be pulled apart by hand. Rumor had it that a tree had blown down across the power lines knocking out power and closing the road.

 

It was rather strange walking through the building illuminated only in emergency lighting. However, Patti was headed out! She may have been the only resident to have a warm dinner. <grin>

 

Later when we returned the power company had everything back to normal and roads were reopened, only the buzzing of chain saws as human beavers gnawed on the fallen tree were evidence that anything had ever been wrong. ... Unless, of course, you asked the staff. It had been a 'long' shift for them.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, thunderstorms, care facility

Caregiving: it's finally correct

Just today, June 13th, I received the first correct and updated balance due for Patti’s prescription costs. Last month in an entry “Caregiving: war with bureaucracy” I shared our 2007 version of our annual brawl over prescription plan coverage. 

 

What if someone in need did not have an advocate that could devote 500 uncompensated hours since the year began to just war with bureaucracy? 

 

In addition to the time, what if a family could not plunge $2,500 into savings or debt hoping and praying it all got settled?

 

What if you could not handle the stress?

 

I find it horribly wrong that people who are unable to defend themselves are preyed upon by our US healthcare insurance system.

 

I am indebted to those few people who have the character to know right and wrong and work to make it right.  

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, prescription plans, healthcare

Truck Takes Man in Wheelchair on Wild Ride

Truck Takes Man in Wheelchair on Wild Ride - AOL News

PAW PAW, Mich. (June 8) - A 21-year-old man got the ride of a lifetime when his electric wheelchair became lodged in the grille of a semitrailer and was pushed down a highway for several miles at about 50 mph. ...

Caregiving: ... day care better?

Alzheimer's Quickly Gets Worse in Nursing Homes;

 Day Care Better

Alzheimer's and nursing homes are not a particularly good combination. That's the conclusion of research showing that Alzheimer's patients decline much more rapidly in nursing homes than in a community setting. The finding is sure to tug at caregivers, who often are pressed to place loved ones in homes because of the 24/7 stress of dealing with Alzheimer's ravages. … The Caregiver's Hotline

Patti has Multiple Sclerosis though deterioration of her cognitive abilities certainly qualifies many of her related symptoms under dementia. However the labeling and coding of symptoms is the busy work of medical insurance companies. From a caregiver’s perspective if it looks like a duck, waddles like a duck, and sounds like a duck … well, it’s probably a duck. 

The above article does open the door on something we have certainly stumbled upon which is the importance of maintaining involvement and outings even after the dawn of the 24/7 care facility era.

Just looking at the last 30 days on average I have Patti out or at home 4.5 days/evenings a week. On average an outing lasts 4 - 5 hours.

 

Unattended home care is unsafe for Patti and with her progression to near total loss of ability to participate in her own Activities of Daily Living even attended outings are physically demanding and require constant vigilance.

 

Certainly some behaviors are more challenging than others to work with when out. For example just last night at a grocery store while turning into an aisle and encountering side by side carts blocking the aisle, my soft spoken “Hello, could one of you please move your cart” was more than adequate to create access. Yet Patti decided to add “Move it, bitch!” with much too much volume, snapping heads around and leaving shoppers a bit stunned. … Such dementia like symptoms are unpredictable and beyond control. Plus I’m sometimes left with spontaneous and creative damage control.

 

Caregiving moves to a different level with the 24/7 care facility era. For the past three years I’ve intuitively felt continued involvement with the world outside is critical. Studies like the above are interesting because they seem to touch the thought that while 24/7 care facilities provide the safety needed the environment itself may accelerate progression. Families may be able to neutralize that to a degree or slow progression by remaining actively involved and getting 'out' and engaged in life.

 

Definitely easier said than done, in our case “on average 4.5 afternoons/evenings a week” is so much easier to type than to do.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, multiple sclerosis

Caregiving: driving to and from home

Sometime ago I read a journal / photo entry about the first couple miles that you travel to and from your home, and how that may affect you.

It certainly seemed like a fun way to share our little slice of South Central Pennsylvania.               

0.2 mile - end of our residential street …

              

0.5 mile – yes, a bison ranch …

              

1.0 mile – railroad crossing ...

              

1.5 mile – horse farm (white egret not always guaranteed)

              

2.0 mile – more horse farm …

              

Now, do the above two miles affect my mind set as I drive away or return? I admit it is a good question. 

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Pennsylvania, bison, horse farm, railroad crossing

Caregiving Metaphysics FAMILY

They were children of the “Roaring 20’s”, then teenagers of the “Depression”. They were 19 when the Japanese attacked Pearl Harbor and World War II ushered them into adulthood. My Mom was a Jersey girl. My Dad was a city boy born and raised in Washington DC. ... 10 years ago, they died within 4 months of each other.

Do your parents or family have anything to do with your sense to “care” or to be a caregiver? The talking heads of psychobabble will certainly charge you money or sell you books to answer such questions.

My Mom was a career RN specializing in psychiatric nursing. My Dad’s career was in the “US intelligence community” retiring as Director of Security for the National Security Agency in 1981. As their first born, they were a loving and interesting team experimenting with parenting.

Retirement years didn’t quite play out as planned. My Mom suffered a stroke (a 1% - 3% chance) in intensive care while recovering from coratid artery surgery to reduce her stroke risk. Rehabilitation did buy her several more years before her abilities and health declined. My father became her home caregiver.

(The beginning of my own spousal home caregiving journey preceded this by a couple years.)

Even though diagnosed with pancreatic cancer almost a half year prior to my Mom’s death, my Dad concealed his death sentence for as long as he could. Praying that he be allowed to live just enough longer than my Mom so that she would not be left alone.

Parents transfer values in a zillion indirect ways than they ever do in well intentioned “talks”.

Two years later my younger brother and only sibling died.

Those were challenging years by themselves. Yet caregiving is a trump card it prevails over anything else that happens.

Juggling spouse caregiving as Patti declined physically and mentally from MS and ‘basically’ single parenting our daughter through the Elementary School years kept me focused on ‘the living’.

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, Multiple Sclerosis, family, RN, NSA, National Security Agency, pancreatic cancer, coratid artery surgery, James E Leer, Elizabeth Leer

Caregiving: war with bureaucracy

Prescription plan coverage and the war of attrition with bureaucracy have occupied too many entries in this journal. The sad reality is that this is the reality of living with MS for us. 

 

2007 has rewritten all the record books for my time involved in this yearly exercise. Yes it is uncountable, uncompensated hours every day of every week. Endless frustration looms day after day. As out of pocket prescription debt grows into the thousands it begins to take the air out of each morning’s first breath.

 

Every year some tiny change in prescription plan insurance creates a collapsing domino effect through Patti’s private plan and it takes X amount of time to get it all restored. In 2007 because there was a change in prescription plan carrier it took over 4 months to get it fixed, the all time record.

 

I am grateful beyond words that we even have prescription coverage. I never want that gratitude to be lost in the frustration of bureaucratic bungling. Too many people have no coverage.

 

It just leaves you increasingly uneasy. Living with MS or any chronic illness is expensive. When you do communicate with the bureaucracy of health care insurance it is because you are in need of help, debt and or pain fuels frustration.

 

Instead you are greeted by electronic voice answering systems requiring you to choose from this menu or that and do you want Spanish or English, then repeating this greeting in electronic Spanish.

 

Please “say” your account number … “I’m sorry that answer did not compute, please return to the original menu and begin again.”

 

When you do finally get through to a live person they need to “review your file, please hold.”

 

For over 4 months, War with Bureaucracy has consumed (or put ‘on hold’) too much of my life …

 

Caregivingly Yours (Caregivingly El Tuyo), Patrick Leer

Tags: caregiving, Multiple Sclerosis, prescription plans

Caregiving: scootering through dandelion clocks

With a streak of dry Spring days the flood retention field behind our house had transformed to a fairy land of dandelion clocks. 

         

Our neighborhood has walking paths carved throughout including green space and traversing the flood retention field which are also excellent for scootering.

         

Patrick: “Patti, you cannot see more than a few feet ahead. Doesn’t charging ahead at 5 MPH bother you?”

Patti: “No, it’s fun. What does it matter?”

 

A navigational trick I have developed is to have Patti follow my voice. Some days I find myself in an impish mood.

 

Patrick: (prancing and chanting in munchkin pitch) “Follow the black stone road, follow the black stone road”.

Patti: (laughing and cursing) “You are one sick mother f*cker!”

 

Hearing such language, I switched my singing navigational cues to “Ding Dong the Witch is Dead” only to hear the scooter behind me accelerating along with more alternating laughter and gutter-mouth threats to run down munchkins. Is nothing sacred?

         

While this was a fun outing on a magnificent Spring late afternoon and Patti always “feels” better after scootering, two Multiple Sclerosis symptoms were also demonstrated.

 

Charging forward unable to see is why unattended scootering ended in the first place over a decade ago. Patti was driving off curbs, flipping her scooter, etc. Deterioration of her thinking and reasoning abilities prevents her from thinking through consequences or risks.

 

In recent years “inappropriate language” has progressively occupied a larger percentage of Patti’s daily vocabulary. It is a weird symptom and unquestionably can impact public situations. For Scrabble players and or fans of neurology this has its roots in symptoms of ‘emotional lability’ and ‘pseudobulbar affect’.

 

However, they are only ‘symptoms’ not Patti. Caregivers, family, and friends have to remember that and adapt any situation for anyone in need of care to make the best of possible times.

 

Dandelion clocks tell time in ‘fairy time’ and it’s always different for every person. Maybe that’s because everyone chooses to do something different with the time we are given.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerois, dandelion clocks

Caregiving: "inadequate caregiving preparation"

“…The findings are significant because inadequate caregiving preparation can result in decisions or actions made in a crisis mode…”

 

Women Expect to Care for Aging Parents

but Seldom Prepare

 

Click on blue headline above to open the article from Caregiver’s Home Companion.

Tags: caregiving

Caregiving: how MS works

I am continually struck by the potential of You Tube or other Internet video broadcast portals to communicate. For years we have used our “wire” below to offer a 50 words or less crash course in Multiple Sclerosis. Recently I found the following two minute animation on You Tube explaining MS. If interested in how MS works, it is worth the two minutes of your time. 

Click our You Tube Channel Caregivingly Yours for easy access to all eight of our ‘living with MS: …’ videos.

 

Caregivingly Yours, Patrick Leer

Tags: Multiple Sclerosis, caregiving

Caregiving: Spring cleaning anxieties

        

Worries about the future, second guesses of the past, and anxieties of the moment can and do come together like some perfect mind storm. On such rare, caregiving days the weight of all around me simply crashes.

 

Caregivers rarely have the safety net of anyone caring for them. If and when I do find a hand reaching out to me it may as well be an alien encounter. What is this? What do I do with it? Hesitation is not about ‘not wanting’ help but trying to ‘remember’ trust.

 

Digging one self out of the rubble of a crashed day is too much time lost inside my own head in the muck of a depressing mind swamp. What I wouldn’t give for a rejuvenating meal of sunny side up Phoenix eggs!

 

When others who cannot care for themselves depend on you, you must get it together and somehow you do. Emotional debris and unfinished thinking gets pushed into that ‘closet’. Leaning your weight against it you manage to shut it again.

 

Standing outside on trash collection eve, I admire the plies of results from the industrious Spring cleaning of neighbors with more ‘normal’ lives. … What I need is a twilight zone where there is Spring cleaning for a closet shoved full of two decades of caregiving anxieties.

 

Caregivingly Yours, Patrick Leer

 

P.S. Cartoon image copied from art and imagination of Berkeley Breathed without permission. Yes, another anxiety but it fit so perfectly.

Tags: caregiving

Caregiving: MS Walk 2007, Camp Hill, PA

The MS WALK is undoubtedly the most recognizable Multiple Sclerosis event around the US. It probably means as many different things to people as the people involved. 

 

I thought I would try to capture how Patti sees the MS Walk day …  

If You Tube is not your thing. You can view the video on Google Video at :

http://video.google.com/videoplay?docid=-439557456057132769

One advantage to Google Video is that by clicking on the pull down arrow at the bottom of the screen you can view the video at a variety of size choices including full screen.

No matter how anyone looks at it the annual MS Walk raises millions and millions of dollars for a disease that dramatically affects the lives of way too many people. Our story is just one family living with MS.

 

We would like to thank all those who pushed wheelchairs, walked, volunteered and contributed. Thank You!

 

Caregivingly Yours, Patrick Leer 

Tags: caregiving, Multiple Sclerosis, MS Walk, Camp Hill PA

Caregiving: parent caregivers

How do I describe a parent’s smile that can communicate love more effectively than words yet mask at the same time the years of exhaustion and mountains of worries? …

 

While this journal and associated emails have enabled me to “meet” so many fellow caregivers, I am always humbled by the lives and stories of parent caregivers caring for children with special needs whether physical or mental or both.

 

More than parents, more than caregivers they are unending sculptors of love and dignity. … Wearied that you may never get it right because there's always so much more to be done, yet struggling forward trying with everything you have.

 

Boundaries of time are abstract to most people. Statistically caregivers, in general, are increasingly outlived by the people they care for. Lack of immortality is a distant cloud on the horizon no matter how beautiful the day. You do not have to be a rocket scientist to do the math of anxiety for parent caregivers.

 

Many battle against a disease with a shortened life expectancy. The lonely sleepwalk through time after the loss of a child before one is ready to carry on again is unfathomable.

 

Tomorrow should be untold. Glimpses into a future demand extraordinary courage, vigilance, and tenderness.

 

Too many children ‘fall through the cracks’ of societal safety nets for any variety of reasons. The network of teachers and programs of support is even more critical than for adults, and unquestionably as bureaucratically maddening to access and maintain.

 

Unexpectedly this journal has also introduced me to the stories and lives of people working in that support network. While bringing care, education, and respite time to these amazing families, I am sure it is not a job they can just close the door on at closing time.

 

I was honored recently to share a meal with a parent caregiver and a child diagnosed with autism.  …  How do I describe a parent’s smile that can communicate love more effectively than words yet mask at the same time the years of exhaustion and mountains of worries?  …  It transcends parenting and caregiving, it redefines love.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, parent caregivers

 

caregiving

Caregiving: family communication

Like families across the nation the stories from Virginia Tech rippled through our day, though just a bit uniquely like everything about living with MS as a family.

 

I had awakened to a picture message on my cell phone from Megan of snow piled on her dorm room window ledge. Jealous? Oh yes! As I was looking at drenching rain.

 

As news broke my thoughts turned to our own daughter at college and Patti in 24/7 care. How were they feeling? Shouldn’t families relate at a time like this?

 

Megan is a freshman in college; what was going through her head? Patti is challenged with MS related memory and cognitive issues; what could she comprehend? What fears or worries might her confusion cause?

 

Glancing at Megan’s class schedule (which is the background on my computer’s desktop screen) I called her at the first break in her classes. She was totally unaware of the unfolding news on another college campus. Though as we spoke text messages on her cell and IM’s on her lap top were beginning to pop up. … How “old” of me to call! <grin> This is a generation of text messaging and IMing.

 

Patti on the other hand can never remember where Megan attends college. I worried she might possibly think it was Virginia Tech, as I have family in that part of Virginia. Patti however never associated her own self as a parent of a college student during the coverage.

 

Trying to talk about it with her was disconnected and detached as are most conversations because of MS related memory and cognition and reasoning loss. Jumping from information to higher or deeper or emotional connections and discussions is a door that simply does not swing both ways.

 

Her sense of smell communicates with the brain just fine. Patti smelling the chicken pot pie heating up in the kitchen abruptly rolled away from ‘our’ conversation toward the kitchen table. <grin>

 

To old to text message and too good a cook <grin> … living with MS as a family I rediscover daily that life’s questions and answers chase each other in the wind.

 

Caregivingly Yours, Patrick Leer 

Tags: caregiving, multiple sclerosis, Virginia Tech

Caregiving: school shootings

I remember Kent State. I was enrolled at the University of Maryland when news of the tragic shootings at Kent State rippled through the campus.

 

I remember Columbine. I was a parent of an 11 year old student when the shootings half way across the country at Columbine High School numbed the nation.

 

I will remember Virginia Tech. Today my daughter is a freshman in college. While she does not attend Virginia Tech, I have dear friends with a student enrolled there only 6 hrs away. Fortunately he called home to say he was OK, just as the news was first breaking.

 

Every time this happens I can only imagine the nightmare of families not knowing and somehow waiting through the longest day of their lives. For some it will end unimaginably tragic.

 

Caregiving has taught me to take nothing for granted but I still want to believe that there should be sanctuaries of safety and growth.

 

In just a few days, on April 19th it will be 232 years since the “shot heard around the world” echoed through history from Lexington Green and gave birth to this Nation.   …   No where in the world should shots be echoing from schools.

Tags: caregiving, parenting, Virginia Tech, Lexington Green

Caregiving: “Kudo to spouses of caregivers!”

Anyone who presumes to write knows that there are times that someone else takes it to another level. Sue of AOL Journal “A Day In My Life” wrote an entry

               “Kudo to spouses of caregivers!”

that took the topic of my previous entry to another dimension. It is a poignant and powerful read about caregiving. 

 

As a caregiver Sue has the unique vision and feelings of an extraordinary woman who cares for both her husband and mother.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving

Caregiving: time for caring

In any given day there is the unknown variable (X) of time devoted to caring. Beyond actual time there is time needed for intangibles from ‘thinking about’ caring to emotions. 

 

Obviously that “X” amount of time varies with every family situation and every illness and level of progression. Yet regardless there is “X” amount of time each day devoted to caring that must displace other “mainstream” family time. It is challenging to avoid the cycle of doing less. 

 

Yet in 2007 two families living with the daily emotional and practical challenges of health and ‘caring’ have chosen to aspire to the White House.

 

Elizabeth Edwards has a diagnosis of Cancer. Her spouse John is a candidate for the Democratic Party nomination for President in 2008.

 

Ann Romney has a diagnosis of Multiple Sclerosis. Her spouse Mitt is a candidate for the Republican Party nomination for President in 2008.

 

Their personal courage is inspiring.

 

As for party politics - “No Comment! This is not a political journal.

 

As a caregiver, kudos to ‘caring’ families pursuing dreams.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, Elizabeth Edwards, Ann Romney

caregiving: Happy Easter

Hopping down the bunny trail ...

    

                                        Happy Easter Day

Tags: caregiving, Easter

Caregiving: thank you

I want to take a moment to say thank you.

 

PHILIPS LIFELINE on their Internet web site for caregivers, links “Caregivingly Yours,” as one of their “blogs we like”.

 

COMMONWEALTH CARER RESPITE CENTRE of Melbourne, Australia shares this journal in their Internet Resources for Carers.

(Journal note: In the US we use “caregiver”, in Australia and the UK, they use “carer”.)

 

Pennsylvania Assistive Technology Foundation (PATF) shares our story and video on their personal stories page, "PATF Accessible Vehicle Loan Helps Family Travel Safely in the Community".

 

from Coca-Cola …

“…You posted a video, "Living with MS: scooter sleigh ride," to the YouTube/Coca-Cola Holiday Wishcast in December of 2006, and we shared it with the world on our global site, www.coca-cola.com. In fact, because we liked it so much, of the 750 videos we received, it was one of the few videos which we ran the most. …”

 

Three years ago, this month, I experimented with posting my first entry ever on line. Six months ago I experimented with my first You Tube video (actually a photo slide show to music).

 

It is the individual readers and viewers that I most want to thank. You make it possible to take caregiving and living with MS out of the shadows.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, Philips Lifeline, PATF, Coca Cola, Commonwealth Carer Respite Center

Caregiving Metaphysics SKILLS

Modern science can extend life but not ‘quality of life’. “Everyone will know or love someone who can no longer take care of themselves,” observes author Maggie Strong.

Caregiving does not come with a book of instructions. No experience is required. … So what skills are helpful?

CLAIRVOYANCE would be ideal but rare.

In my opinion, the quintessential skill is intangible - will you CHOOSE to be a caregiver? Not rhetorical or love, but the real choice each and every minute of every day of every month of every year to commit to an indifference to your own existence.

Everyone should know basic life saving skills. Focus in particular on “how to” when someone is in a wheelchair. Include the whole family in classes.

Know your limitations. Hurting yourself is catastrophic. In email associated with the three years of this journal, it is us ‘guys’ who time after time fumble this skill. <grin> You cannot take care of anyone if you do not take care of yourself first.

Most specific skills you will acquire as you need them. Each situation and progression is unique.

Learn and use medical jargon. Do not ‘dumb down’ your language. Communicate as a medical professional.

Practice and perfect writing skills. Record medication times, your observations, symptoms, etc. Use the 24 hr clock, medical terminology, and above all be precise and concise.

Become a living ‘medical history’. Customize and perfect your medical record keeping skills. You will often encounter a new doctor. Over time I’ve scanned all records into our PC and copied to CD or DVD which I carry to any appointment. I just pull the disc out of my ‘man purse’ to display any record on a physician’s PC.

If the person you care for chooses an Alternative Medicine treatment then licensed medical professionals will avoid you like the plague. Your ingenuity will be taxed to support their choice.

Harmoniously you must juggle caregiving, homemaking, parenting, several inches of paperwork, income and more. ‘Multi-tasking’ is an understatement. “Juggling” is to attempt magic.

LAUGHTER is a necessity for both of you. Find or create ... just use it!

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: caregiving, multiple sclerosis, Maggie Strong