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

Caregiving: cognitive turning point

Cognitive impairment is the turning point in home caregiving. When reasoning and thinking abilities become faulty the other side of that coin is ‘at risk’. Caring is now faced with custodial accountability for another person … Safety demands you cross this Rubicon. 

 

One exercise that a neurologist might charge you to administer and analyze is the “animals in a minute test”, asking a patient to name as many animals as possible in 60 seconds. Able minded people “should” be able to name at least 13 animals.

 

While Patti enjoys herself in this You Tube video it does take her twice that time and the assistance of blatant coaching and hints to successfully name the animals.

Failing to name 13 animals in 60 seconds “could be” an indication of fronto-temporal lobe dementia. That’s a moot point here because in Patti’s specific course of progression of Multiple Sclerosis her frontal lobe and associated functions was an early victim.

 

MS has ‘invisible symptoms’, this is just about trying to capture and share one of them that most impacts caregiving … and have some fun while living with MS. Laughter is a treatment, even though not FDA certified. 

 

I want to acknowledge Tammy of Blogger journal The Daily Warrior for reminding me of this particular test and Megan and Jennifer for their 'consultations' and support with this video production.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, cognitive impairment, You Tube

Caregiving: the ONLY true sign of Spring

In these first days of Spring, artists of every medium bury us in the ‘signs of Spring’. 

 

As a chocolate predator there is ONLY one true sign of Spring, hollow chocolate bunny rabbits.

         

Patti’s MS impairs her from ripping off the head in proper fashion. Photos of her hollow chocolate bunny rabbit mutilation would have been too graphic. <grin> However among us chocolate predators, who cares about style points?

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, hollow chocolate bunny rabbits

Caregiving: ... from National MS Society

Hi, I hope you are doing well. My name is Annie Hammel and I work for the National MS Society. I’m writing because you have a very popular blog that discusses life with MS. I wanted to forward on some exciting and useful news that we hope you can help us spread. 

The National MS Society has been chosen as one of nine global charities to be part of Microsoft's new "i'm" initiative!

Every time a customer has a conversation using i'm, Microsoft shares a portion of the program's advertising revenue with one of the nine non-profits in the campaign. Microsoft will make a minimum $100,000 guaranteed donation to each of these organizations during the first year of the program, with no cap on how much the organizations can earn!

Customers can participate in and learn more about the i'm Initiative by joining at http://im.live.com  and downloading the latest version of Windows Live Messenger.

If you feel it is appropriate, we would really appreciate it if you would please share this with your readers. We would love to get the word out about this generous program Microsoft has included us in. Not only is it raising funds for the MS movement, it is bringing worldwide awareness to this disease.

Best,Annie Hammel

Tags: caregiving, Multiple Sclerosis, National MS Society, Microsoft Live Messenger

Caregiving Metaphysics Religion/Faith

WHY? … As a caregiver the more you ask WHY you realize any answers are not of this world. No shrub, flaming or otherwise, has ever spoken with me and neither preaching nor proselytizing is my calling. This is only about trying to live with “why”.

“Care” is rooted in the “Golden Rule” universal to ALL religions. Do to others as you would have them do to you. I’ve met caregivers from all theologies and those who practice no traditional denomination. In 22 years I’ve observed no advantage or disadvantage to any particular religion in regards to caregiving.

Religion and faith are not the same. Faith is belief beyond known fact. Faith in something greater than myself is critical to caregiving.

I suspect many caregivers feel like they were on that proverbial road to Damascus with a world of different plans in life when suddenly “redirected”.

Patti believes what I am matters, so at the risk of sectarian violence I will again briefly pull back a curtain. My maternal grandmother was an immigrant from Ireland and my bedrock is Irish Catholic.

What’s the difference from Roman Catholic? In a nutshell, one is pragmatic the other dogmatic. Sprinkled with Druid DNA, Irish Catholic is more embracing of the natural world than our Roman cousins. <grin>

People have shared with us that, “The Lord works in mysterious ways” enough times over the 22 years since Patti was diagnosed with Multiple Sclerosis to probably qualify for an entry in the Guinness Book of Records. … PLEASE think of a more creative way to express that thought.

Those ‘mysterious ways’ challenge faith. As the caregiver, watching Patti decline (and over a three year period burying my father, mother, and only brother) I’ve certainly had, have, and will have contentious streaks in my relationship with God, fortunately always staying just beyond the ‘smite with lighting bolt’ threshold. … I admire those with rock solid faith.

For me, T. S. Eliot captured it best in his poem "Ash Wednesday":

“…Suffer us not to mock ourselves with falsehood

Teach us to care and not to care

Teach us to sit still

Even among these rocks,

Our peace in His will…”

CaregivinglyYours.com

Tags: caregiving, Multiple Sclerosis, Irish Catholic, T. S. Eliot

Caregiving: a robin in the snow

Enjoying Friday morning’s coffee I watched a robin hop through the falling snow. Could there be any thing more beautiful than a blanket of fresh fallen snow against a door?

Budding spring gardens hide in embarrassment at the majesty of snow on a branch.

Believe it or not only the 3rd snow storm of the entire Winter and all have come between Valentine’s Day and St. Patrick’s Day. So much for weather forecasting Ground Hogs and an early Spring. <grin> 

Happy St. Patrick's Day to all from South Central Pennsylvania with 10" of magic to welcome the morn'.

Tags: Caregiving, St. Patrick's Day, snow, Northeast snowstorm

Caregiving: wheelchair accessible van

Our wheelchair accessible van entered our lives only a year ago even though Patti has been using a wheelchair and/or scooter for at least 15 years.

 

I refer to it often enough so I thought it was time to show those unfamiliar with such a machine how it works (in under two minutes <grin>). Click video to play.

Tags: caregiving, Multiple Sclerosis, wheelchair accessible van

Caregiving: Scooter-cize

Patti’s RASCAL SCOOTER is a wonderful pace vehicle for my own exercise. With warming temps and the new daylight savings time we’ve been able to work close to 2 miles into each late afternoon.

Get your motor runnin'

Head out on the highway

As long as I can find isolated enough roads or wide enough paths to accommodate the wide drifts of her MS visually impaired driving she’s not only fine but LOVES the freedom of scootering. Scootering also has a noticeable overall positive effect on Patti’s MS symptoms in general even though it is short term.

Racin' with the wind

And the feelin' that I'm under

When I walk on my own I loose the additional health benefits of a consistent faster pace. At top speeds of 5 mph she sets a brisk pace for me from ‘power walking’ to jogging to keep up with her.

Two weeks ago I underwent a Nuclear Cardiac Stress Test which I passed with flying colors. (even got a smiley face on the follow up note from my nurse practitioner <grin>)

Why the test? During my Cluster Headache episodes I take Imitrex more frequently than any published tested levels. Imitrex at far lower dosages has been known to induce heart attacks. I smoke and 22 years of stress as a spouse caregiver takes a toll.  

I made it the distance on the ‘treadmill from hell’ and my heart glowed just fine with all the radioactive isotopes flowing through my blood. … At least I know I’m not the Tin Man, I saw that I had a heart.

Caregiving is exhausting but regular exercise can never be underestimated.

Time is unavailable to caregivers but it can be found creatively such as keeping up with a wild woman on an electric scooter for a couple miles. <grin>

Tags: caregiving, Multiple Sclerosis, Rascal Scooter, Imitrex, Stress Test, Cluster Headaches

Caregiving: family outing

Multiple Sclerosis may shape circumstances. MS does not ‘define’ family. Living with MS as a family, Patti is totally dependent on others, as she has been for much of the last 10 years. 

 

Sunday was a typical ‘family day’ centered on a movie theatre outing.  The mega screens and the right movie choice can negate her MS symptoms of visual impairment and cognitive and attention span challenges for an hour or two. Simultaneously a movie is entertainment for the rest of the family.

 

Wildcards always loom such as MS related Dysphagia triggering choking or emesis, and/or the absence of bladder and bowel control. Newbies may balk at these wildcards, with time you learn to live with them, be prepared, and hedge your bets. If a psycho astronaut can drive a thousand miles in a pair of Depends, then Depends can get Patti through a two hour movie.

 

Choosing “300” this past weekend was a surprise. I can’t remember the last time that Patti, myself, and our daughter (home for spring break) all agreed on amovie choice. <grin> 

 

As often happens when we arrive at a popular movie, the designated companion seats adjacent to wheelchair cutouts were all occupied and embarrassed patrons sheepishly begin to play a game of getting up and milling about while waiting to see which seats we actually take before racing to grab the remaining seats like musical chairs. <grin>

 

“300” was enjoyed by all and uninterrupted by MS symptoms. While it could not have been a better outing, plans to visit for dinner afterwards were torpedoed by loss of bowel control in route and we reversed course home for changing and clean up.

 

Lacking the lifts and multiple personnel of a care facility this is easier said than done. However, it CAN be done. 

 

You get past it and adapt. MS may shape the day but it cannot define family, only the family can do that.

 

Not unlike the “300” some CHOOSE to define and guard their own Thermopylae.

Tags: caregiving, Multiple Sclerosis, family, 300, Thermopylae.

Caregiving: MS Awareness Week (alternative 4)

             

Oversimplified, yes, but the above piece of electrical cord has been our family’s ‘quick and easy’ MS teaching aid for years. 

Tags: caregiving, Multiple Sclerosis, MS Awareness Week, myelin

Caregiving: finally SNOW

            

Tags: caregiving, snow, totem pole, St. Patrick's Day