Caregivingly Yours, MS Spouse Caregiver

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, AOL Journals, Caregivingly Yours, Wanderer, I Was Thinking..., Holliday's Holliday, A day in my life...., blogoshere

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

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, You Tube, AOL Journals, Life in Bama, Caregivingly Yours, Alabama, War Eagles

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

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

Tags: caregiving, spouse caregiver, Multiple Sclerosis, care facility, physical therapy

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

50 Communication Tips and Techniques for Caregivers

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

Tags: caregiving, spouse caregiver, carer, Baroness Pitkeathley, Sloan Work and Family Research Network, elderissues.com, US Department of Health and Human Services

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:

“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

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

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

Tags: caregiving, spouse caregiver, Multiple Sclerosis, RNCentral.com, communication

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:

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

Deciding to Use a Nursing Home

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

Tags: caregiving, spouse caregiver, Multiple Sclerosis, wheelchair, Jubilee Day, Mechanicsburg, Pennsylvania

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:

“… 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

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

Tags: caregiving, spouse caregiver, Del Mar Caregiver Resource Center, Alzheimer's Association, Caregivingly Yours, The Spiritual Journey of Caregiving, nursing home, care facility

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")

Tags: caregiving, spouse caregiver, caregiver, Father's Day

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

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

Tags: caregiving, spouse caregiver, Multiple Sclerosis, wall calendar, care facility

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