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