Friday, June 27, 2008

caregiving: the heart of the blogosphere

Sometimes blogging is about 'listening'.

 

Bea, of AOL JournalsWanderer ("until a more suitable name presents itself")

 

Comment from bgilmore725 6/25/08 10:01 PM 

"So does Patti remember from one PT session to the next? Or does she rediscover it for the first time each time she goes, kind of like the movie "50 First Dates?" …

 

Absolutely! However while enjoying a Gelati in our van I asked her …

 

Patrick: “So, Patti, did you have physical therapy today?”

 

Patti: “Yes … I mean no … I can’t remember. Who the f#ck cares? … I hate that sh#t! … Oooo! It’s Jackson”

 

Hearing Jackson Browne on the radio she refocused her attention to listening. Not 'allowed' to change stations, I looked around the van for something to beat myself unconscious. Finding nothing I resorted to miming beating myself unconscious. Patti looks at me like moi has the cognitive impairment and informs me, “You need to be slapped!”  <grin>

 

In another part of the blogosphere, an integral part of long term caregiving … the long walk afterwards.

 

Leigh of AOL Journals, I Was Thinking...

 

Comment from mleighin21st 6/19/08 7:50 AM 

“...  Never forget that the caregiver NEEDS your support, too!  It took me years to heal....”

 

Frances of AOL Journals, Holliday's Holliday

shared in an email:

 

 “… It was the hardest job I ever loved.”

 

Caregiving is NEVER without the decision making that you hope never to make …

 

Recently, Sue of AOL Journals, A day in my life.... admitted her Mom to a care facility. Her entries at this point are priceless as not only will so many one day face exactly where she is at, but they transcend ‘entries’, they are words of the heart.

 

Sue has long been in my pantheon of caregivers and literally is unforgettable ...

                   

... this weeping willow in my back yard was only a 6’ nursery tree until Sue shared in her journal an irrigation trick from the Oklahoma prairie.

 

Not unlike this tree there is a lot of heart in the blogosphere to help anyone grow. I, for one, thank you all for sharing.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Thursday, June 26, 2008

caregiving: You Tube and caregiving

20 months ago this journal was chugging along sharing the journey of caregiving and living with Multiple Sclerosis. 

 

Then a special education teacher planted a seed and pushed me to be more as a communicator. Jackie of AOL Journals, Life in Bama nudged me toward You Tube.

                                   

Yesterday Caregivingly Yours videos on You Tube crossed the 40,000 viewer mark, running circles around this original journal views in half the time.

 

These are not videos of pop culture but rather a hidden or private view of life, caregiving. Some have been the first of their kind and it has been a pleasure to watch the ripples of others sharing their lives. 

 

More outstanding to me has been the world wide views. Backtracking links I have found Caregivingly Yours videos embedded in journals and sites written in French, German, Dutch, Danish, Swedish, Turkish, Bulgarian, Portuguese, Italian, Spanish, Japanese, Chinese, and languages that have stumped Google translator. Plus our English speaking cousins in Canada, Ireland, Scotland, England, Australia, and New Zealand.

 

You Tube demographics of world wide video views of Caregivingly Yours videos paints a picture quite different than the You Tube stereotype, not youth but an aging population: 

It is impossible not to wonder about the appeal of video communication vs written. Maybe it is the visuals of seeing real people with real challenges? Maybe the 21st Century simply demands multi-media communication?

 

Whatever! A special education teacher, AOL journal writer, caregiver emeritus, and most of all a friend in Alabama gets the “muse” credit for this benchmark.

 

To paraphrase Boston’s Brahmin, Henry Brooke Adams (only seems appropriate for a ‘Bama Woman) “A teacher affects eternity, she can never tell where her influence stops.” … Thanks, Jackie! Y’all take care now!

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")


 

Wednesday, June 25, 2008

caregiving: hijacked by a physical therapist

Is nothing sacred? On the way out of Patti’s care facility, we were hijacked by a physical therapist.

 

While I found this fascinating, to Patti it may as well have been fingernails on a chalkboard. I learned that Patti is not exactly a cooperative patient. <grin> The therapist reported that Patti voices her opinions quite ‘colorfully’ and usually rolls out half way through her scheduled sessions.

 

What physical therapy is trying to do is relax and stretch her leg muscles. She does not fully extend them which in turn complicates transfers to and from wheelchair and bed, etc.

 

Fortunately, I was able to keep Patti amused for a complete session. Patti’s short term memory loss, mental confusion, and lack of attention undoubtedly complicate any therapist’s plans.

 

To me the physical therapy room was somewhat like a play room with the coolest toys in town. To those who need physical therapy there may as well be an arch over the door emblazoned “no pain no gain”.

                   

Later sharing the experience with our daughter, she remarked “isn’t physical therapy kind of ahh … like waste of time with Mom?”  … Megan’s brief observation is the acquired wisdom of a life time of living with Multiple Sclerosis. Megan has ONLY known Patti in a wheelchair.

 

While physical therapy and MS is debated, there is also the boundary of ‘need’ vs ‘want’.

 

There is merit to Megan’s observation especially in consideration of Patti’s progression and level of MS. On the other hand, private medical insurance, Medicare and Medicaid have formulas permitting “X” amount of PT for “Y” type conditions. Medical professionals obviously make use of those formulas to address acute concerns, for example, Patti’s recent bout of falls from out of her wheelchair.

 

Does it do any good? MS in general is about a short circuiting of communication between brain and body. Who knows?

 

Patti certainly has her opinion after over 2 decades of living with MS and it is NOT as politely delivered as in the jargon of a 20 year old, where it is “kind of ahh … like waste of time.”

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tuesday, June 24, 2008

caregiving: in search of a definition

What’s in a name bemused Shakespeare. Yet caregivers face identity confusion every day on top of everything else.

 

caregiver   (kâr'gĭv'ər)  noun (US, Canadian usage) - or - carer (kâr'ər) noun (UK, NZ, Australian usage) - caregiving adj. & n.

 

“Someone whose life is in some way restricted by the need to be responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age.” Baroness Pitkeathley, “It's my Duty Isn't it?” … God Save the Queen! By George, she’s got it!

 

Boston College’s Sloan Work and Family Research Network offers this ivory tower definition: “…To qualify as a caregiver, a woman had to assist the parent with at least one personal or instrumental activity of daily living (e.g., bathing, meal preparation) or provide supervision to the parent.” … Being a guy I would not want to risk pointing out the inherent sexism in this definition to the allegedly liberal people of Massachusetts. <grin>

 

“A universally accepted definition of caregiving does not currently exist. Some define caregiving as a direct, hands-on experience. Others consider organizing paperwork or paying bills to be caregiving. Many families now find themselves providing some type of services to other family members or loved ones those goes beyond a normal filial responsibility. Whatever the definition, being a caregiver impacts your life!” … A fair and well put answer by elderissues.com though I am still looking up “normal filial responsibility”.

 

Then there is the US Department of Health and Human Services, “A generic term referring to a person, either paid or voluntary, who helps an older person with the activities of daily living, health care, financial matters, guidance, companionship and social interaction.  A caregiver can provide more than one aspect of care.  Most often the term refers to a family member or friend who aids the older person.” … Now it makes sense, Patti is younger than me and by their definition “caregiver” means taking care of an “older person”!

 

Before I pull out my hair, maybe it is simply about 'birds of a feather' ...

                    

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Saturday, June 21, 2008

caregiving: 50 communication tips and techniques for caregivers

                             

RNCentral.com, in the person of Fiona King, asked me to share this recent addition to their nursing library: 

 

50 Communication Tips and Techniques for Caregivers

 

Whether you're a professional nurse or taking care of a loved one, you're bound to run into communication challenges as a caregiver. Some of the issues caregivers deal with include talking to care providers, managing memory loss, and avoiding power struggles. ..."

 

Click on either the RNCentral logo or the blue headline to read the article from their website.

 

Whether just beginning or a veteran caregiver, this is an excellent collection of tips and techniques.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Thursday, June 19, 2008

caregiving: Jubilee Day 2008 outing

Creating time to laugh IS caregiving!

 

Join us for a 3 minute version (from a wheelchair perspective) of today’s Jubilee Day™, the “largest one day street fair on the East Coast.”

              

If you have problems playing video through this journal you can view directly on You Tube at:

http://www.youtube.com/watch?v=dg-wwNOWiSI

 

 

P.S. Uploading this video I noticed that Caregivingly Yours videos on You Tube have been viewed 39,000+ times since the first was uploaded 20 months ago. Thank you ALL for sharing the journey of caregiving and living with Multiple Sclerosis.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tuesday, June 17, 2008

caregiving: "The Spiritual Journey of Family Caregiving"

Like many caregivers, I have discovered NO cookie cutter formula for caregiving. I have learned (2004 Transitional Year to Care Facility Era) that answers and solutions are both as elusive and abundant as the love, creativity and resources of people thrust into caregiving roles.  

 

Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center + artist + author + healer + spiritual counselor = Sheryl Karas.  

 

An excerpt from Sheryl's journal:

         

Deciding to Use a Nursing Home

 

“… I once had a caregiver tell me that she had given up her career to take care of her mother and that in the course of caregiving she had become a virtual prisoner in her house. Her mother could not be left alone and the daughter could not find the paid help she needed. ... There were very few workable options left but the caregiver hung on and on until the day she was diagnosed with a serious illness. …

 

All her life the mother had told her daughter “I’ll kill myself if you put me in a nursing home,” but within a few weeks she adjusted and eventually came to like her new caregivers and friends. My job shifted to consoling the caregiver for not doing it sooner.

 

The most loving option is to  do what people need, not necessarily what they think they want. Keep in mind that placement is not the end of your caregiving career. The family caregiver can and should play an important role in providing the emotional, spiritual, and advocacy support …”

 

As Sheryl shared in a recent email to me, “Most people came to me seeking practical assistance but -- almost without exception -- eventually the conversation would turn to emotional and spiritual issues coming up along the way.” 

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Monday, June 16, 2008

caregiving: ch-ch-changes

“Ch-ch-ch-ch-Changes

(Turn and face the strain)

Ch-ch-Changes

Just gonna have to be a different man”

David Bowie “Changes”

 

A 40 yr old parent caregiver of a special needs child challenges himself against people half his age for a better job. Everything and anything to ‘provide’ for a family that will need more.

 

A 50+ yr old single parent caregiver of a special needs child prepares to uproot their lives and move 400+ miles for a chance for a better home.

 

“I watch the ripples change their size

... But still the days seem the same

 

Ch-ch-ch-ch-Changes

(Turn and face the strain)

Ch-ch-Changes

Pretty soon you're gonna get a little older”

 

A 70+ yr caregiver takes a respite trip, suffers a seizure … diagnosis brain cancer. At home wait a 90+ yr old Mom, and a spouse challenged with diabetes and more.

 

An 80+ yr old caregiver fighting against all odds to keep her spouse with Alzheimer’s at home in spite of her own emphysema now fights her own diagnosis of lung cancer.

 

“Time may change me

But I can't trace time”

 

All four of these caregivers are real people, in fact family, an in-law, and a close friend. Father’s Day 2008 involved contact or conversations. 11 years ago on Father’s Day weekend, my own father died of pancreatic cancer after almost 10 years as my Mother’s caregiver. This is my 18th Father's Day juggling the hats of basically single parent and MS spouse caregiver. 

 

In my world there just seems to be some caregiving vortex around Father’s Day. I am always left humbled and in awe.

 

“I said that time may change me

But I can't trace time”

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tuesday, June 10, 2008

caregiving: drawing on walls

           

In spite of evolution it all still comes down to drawing on walls. An oversized monthly wall calendar (20" X 30") hanging in our kitchen has been a key to juggling spouse caregiving (Multiple Sclerosis) and basically single parenting through the last 18 and a half years.

 

Since the advent of the care facility era frankly it has become MORE critical.

 

Caregiving is about time. When home caregiving surrounds you it is time itself. In the 24/7 care facility stage it is soooo easy to let other responsibilities or even a breath of fresh air distract you.

 

“Self help” and “self organization” gurus might call this an organizational tool. For me, every time I walk into or out of the kitchen it prods, pushes, pesters, and haunts me to “look” at the time I have committed to outings or visits with Patti.

 

My goal has always been to have Patti home or take her for an outing and then later personally prepare and tuck her into bed at her care facility at least 4.5 evenings per week. There are weeks this can be as challenging is not more so than homecare used to be. These are the weeks my wall calendar seems to bark at me like some drill sergeant over my morning cup of coffee.

 

Bottom line is that it is all about making sure the care facility era does not become a time of drift, but rather the age of team work. You must stay in the fight.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Monday, June 09, 2008

caregiving: falling out of a wheelchair

Sitting in a wheelchair should have a certain safe and secure connotation. Patti on the other hand has a knack for falling right out of a wheelchair when unattended.

 

Sunday morning to the blare of a Dixieland band (my designated ring tone for incoming calls from Patti’s care facility) I was alerted to a fall by Patti.

 

Patti was discovered on the floor of her room less than 10 minutes after having been changed, dressed, and seated in her wheelchair in front of her TV. Her wheelchair was upright but across the room.

 

Patti could offer no clue as to how she ended up on the floor.

 

Patti had no complaints of pain or injury and an examination revealed only a bad bruise on one knee.

 

Why the fall? That answer is part MS related symptoms of ataxia, mental confusion and part mystery since this only happens when unattended. Patti’s MS short term memory loss erases the only eye witness report.

 

Ataxia (uh-tak-see-uh) = loss of the ability to coordinate muscular movement.

 

In an earlier entry, Is MS fatal? I referenced Patti’s neurologist warning us 20 years ago that falls and choking were the most ‘at risk’ threats to living with MS.

 

 

This has now been two falling episodes and one choking in just a couple weeks while in 24/7 attended care.

 

Previously it has been about a year since her last fall. Yet that is exactly what makes MS caregiving so tricky. Multiple Sclerosis is about the short circuiting of the brain’s communication with the body, therefore history or patterns are deceiving as formulas for treatment plans.

 

A conventional seat belt is useless on Patti. She constantly fidgets with the latch. When driving in our van I frequently have to stop to reattach her seat belt. Restraints are a possibility but always the last resort. 

 

When picking Patti up for our outing I asked her about her fall. She claimed she was fine, could not remember anything, and “what can I say, I’m a klutz.” 

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Sunday, June 08, 2008

caregiving: "Here's a cold truth ..."

I confess to jumping up and making noises more appropriate in a stadium than in front of a PC after reading the following article from the Washington Post by author Michael L. Millenson.

 

Want Universal Health Care?

The Operative Word Is 'Care.'

 

“ … Here's a cold truth: Despite much media hand-wringing on the subject, most of us give about as much thought to those who lack health coverage as we do to soybean subsidies. The major obstacle to change? Those of us with insurance simply don't care very much about those without it. …”

 

Specifically with Multiple Sclerosis, treatments in recent years involve maintenance medications. When Patti was trying Avonex for example the cash price would have been over $1,000 a month for 4 weekly injections. Far, far less when purchased through her prescription plan.

 

If you were uninsured or underinsured you were locked out of such a treatment option.

 

Or suppose you or your spouse’s health care prescription benefits change? Divorce, disability, unemployment or death can and will change your family medical benefits?

 

Whether patient or caregiver you may as well be playing Russian roulette with the economics of healthcare each and every day.

 

How do you continue expensive maintenance medication? Safety nets such as Medicare and Medicaid rarely cover the “designer” medications.

 

What if anything is known about the effects of abruptly having to abandon a treatment because your family health care situation changed?

 

"One paycheck from poverty/One illness or injury from misery," is this really the best we can do as a national heath care policy?

 

“… It has been nearly a century since Theodore Roosevelt, a Republican running unsuccessfully on the Bull Moose Party ticket, boldly became the first presidential candidate to promise universal health coverage. That was in 1912. Nearly a century later, we're still waiting for a leader …”

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

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

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

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