Caregiving: a caregiver's translation

When an outing goes well, the caregiver’s craft is unnoticeable. I thought I might invite you behind the curtain to a ‘caregiver’s translation’ of the previous movie and entry about Jubilee Day.

 

“… we headed out early…”

ü     two (2) care facility staff using a lift get Patti up, Depends changed, dressed, and transferred from bed to wheelchair and ready for pick up

ü     me driving our wheelchair accessible van with a ramp transport Patti.

 

“… street fair vendors are always fun for Patti…”

ü     Patti’s wheelchair needs to be pushed “defensively”. In crowds, people often trip over wheelchairs. With arms filled with food or packages, people cannot see a wheelchair.

ü     Because of MS visual impairment,  I need to “describe” the world around Patti to her, clearly and entertainingly.

ü     MS short term memory loss and impaired reasoning confuses many transactions. Though on the other hand, some can be quite amusing.

 

“… enjoyed southern pulled pork barbeque sandwiches …”

ü     MS impairs Patti’s ability to hold a sandwich. I separate the pulled pork from the roll and hand her one forkful at a time to eat.

ü     Because of MS related dysphagia I must monitor her eating to insure she chews and swallows, often verbal cues are required.

 

Patti can never be left unattended which also means the caregiver cannot do anything independent such as visit a bathroom yourself, etc. Fortunately, our daughter accompanied us. Ever tried to carry food and drinks and push a wheelchair at the same time?

 

“… a well deserved and air conditioned afternoon nap …”

ü     I physically transfer Patti from wheelchair to bed to change Depends and clothing. After her nap I reverse the process followed by laundering clothes and bed linens.

ü     While such transfers place both of us at risk, I have to ‘roll the dice’ when away from care facility staff and equipment.

 

No matter how the story is told Patti still HAD a fun time. … Yet as Paul Harvey might say, now you know the rest of the story.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, MS

Jubilee Day " the movie"

Our Jubilee Day outing in “60 seconds” for those who prefer an audio visual experience.

Actually this is the way Patti “sees” our family pictures. Due to her MS visual impairment I need to transfer pictures to DVD to play on mega screen TV … and then, well why not add music?

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis

Caregiving: Jubilee Day Mechanicsburg

Jubilee Day is one of those hard to explain traditions when “more than 60,000 people” descend on Main Street of Mechanicsburg, PA for the “the largest one day street fair in the eastern United States.”

 

Weather always rules Patti’s involvement and today was kind of cooperative. Overnight temps were in the 60’s so we seized the chance and headed out early …

         

Street fair vendors are always fun for Patti because tables are at her level unlike department store counters and merchants and craftspeople give anyone more attention than a salesclerk. Where else but a street fair can you shop for a necklace based on the concept that “I want to find a bright purple necklace.”

           

Before Noon the baking sun had driven temps up into the 80’s. Patti’s cowgirl hat is the perfect sun hat. It keeps her shaded yet is porous enough to allow maximum ventilation and is quite stylin’. We found some grass under a shady tree and enjoyed southern pulled pork barbeque sandwiches and ice cold bottles of root beer. It doesn’t get much better than that.

             

          

Lunch is our usual targeted time to depart because heat begins to take its toll and crowds have already built to shoulder to shoulder humanity. When you are in a wheelchair all crowds mean is a world of butts to look at so it was time to head home for a well deserved and air conditioned afternoon nap.

This 79th Annual Jubilee Day honors Emergency Medical Service providers. Recording artists “Carolina Rain” will close out this year’s street fair with an evening concert on Main Street.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, Jubilee Day, Mechanicsburg, Carolina Rain

Caregiving: summer fun?

Impact of Temperature on Multiple Sclerosis

 

“Heat or high humidity can make many people with MS experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently.

 

For reasons that are not well understood, extremely cold temperatures and changes in temperature can also cause MS symptoms, usually spasticity, to flare.

 

How Can I Keep Myself Comfortable?

    * Avoid extreme temperatures. Extreme temperatures may worsen your MS symptoms.

    * Use air conditioning. If hot and humid conditions worsen your MS, try to stay in cool and dry areas as much as possible. A home air conditioner may be tax-deductible for some people with MS; talk to your doctor.

 

It is important to remember that while climate may worsen the symptoms of MS, climate changes do not produce more actual nerve damage. The adverse effects of temperature and humidity are generally temporary.”

 

WebMD Medical Reference provided in collaboration with the Cleveland Clinic

Tags: Multiple Sclerosis, caregiving

Caregiving: thank you for caring

Sometime yesterday this journal’s hit counter moved past the “this journal has been read 20,000 times” mark. I am overwhelmed.

 

I can still vividly remember the loneliness when spouse caregiving and ‘basically’ single parenting began. Information was slim to none. All I found was “Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong, and spent hours in our local library searching the New England Journal of Medicine, often with Megan sleeping in her stroller.

 

Al Gore discovered the Internet and I stumbled into the Multiple Sclerosis bulletin boards on Prodigy. Is there anyone old enough to remember the Prodigy sign on screen? Or having to use DOS prompts to open Windows?  

           

This 21st Century is an information age second to none. Yet nestled in all that information are real stories of real people, more like a neighborhood than a database. As a caregiver that is what I needed and why I share.

 

… and while pausing to reflect on numbers, I am also grateful for the response to our drifting into You Tube to share our story and information. Driving around for over a year now in our wheelchair accessible van only two families with a member in a wheelchair have had the chance or time in parking lots to ask to see how our van works. Yet through You Tube, in three months, over 1000 have taken the opportunity while viewing “Living with MS: wheelchair van”.

 

Thank you for caring. You all are wonderful 'neighbors'.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, wheelchair van, Prodigy, Maggie Strong

Caregiving: beautiful people do not just happen

A recurring funk that caregivers can fall into is the comparing or contrasting of their lives with peers, friends, or siblings. Fatigue and isolation can lead your mind down some wacky paths. After all caregiving is a parallel universe.

I stumbled upon these insights by psychiatrist and author, Elisabeth Kübler-Ross. For my brothers and sisters in caregiving the next time you slip into a funk, remember “… Beautiful people do not just happen.”

“ … We run after values that, at death, become zero.  At the end of your life, nobody asks you how many degrees you have, or how many mansions you built, or how many Rolls Royces you could afford.  That’s what dying patients teach you. …”

“ … The most beautiful people we have known are those who have known defeat,known suffering, known struggle, known loss, and have found their way out of the depths.  These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen. …” 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Elisabeth Kübler-Ross

Father's Day

Mrs. Sonora Smart Dodd was the driving force behind the establishment of Father’s Day in the US. She wanted to recognize the selflessness her father had shown in raising his children as a single parent.

 

It was her father that made all the parental sacrifices and was, in the eyes of his daughter, a courageous, selfless, and loving man.

 

President Calvin Coolidge first supported the idea of a national Father's Day. President Richard Nixon signed into law National Father’s Day on the 3rd Sunday in June.

 

Somehow it got lost in Hallmark marketing and tie manufacturing.

 

Personally, it's somewhat bittersweet for me. My own father died 10 years ago on Father’s Day weekend.

 

From the heart and for the selflessness and love of fathers everywhere, HAPPY FATHER'S DAY!

 

Caregivingly Yours, Patrick Leer

Tags: Father's Day

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