Caregivingly Yours, MS Spouse Caregiver

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

Tags: caregiving, carer, spouse caregiver, Consumer Reports, Overdose of Debt, CapitalOne Healthcare Finance, Chase HealthAdvance, Citi Health Card, GE Money CareCredit

Thursday, July 03, 2008

caregiving: "almost" as normal as ice cream on a summer night

Caregiving can sometimes ‘feel’ as normal as ice cream on a summer night. Well, almost …

”Rakestraw's Ice Cream Company Store has been in business for over 100 years. Come here to enjoy 40 flavors of hand-dipped ice cream … Nobody dips the dips like Rakestraw's Dips!!!!” (visitPA.com)

… it occurred to me how much caregiving can be like the Verizon Wireless commercial with the “network” behind the customer.

Obviously we needed to own our wheelchair accessible rampvan to even be there. CVM Dodge service team keeps it working and the PATF loan made it possible.

A call ahead to Patti’s care facility insures that her Depends and clothing are freshly changed and ready for an outing. Multiple staff members are involved.

Multiple Sclerosis related symptoms of dysphagia, mental confusion, and lack of hand coordination require adaptation. A cone is obviously out of the question, and cups are just too challenging to juggle.

I simply pick up a pint of fresh hand packed ice cream and we make the couple minute drive home to enjoy. "Deer Tracks" is Patti's and Megan's favorite flavor. Probably the same as "Moose Tracks" elsewhere depends on whether moose or deer wander through your ice cream.

At home I place a bib on Patti disguised as a chef’s apron. Patti’s lack of hand coordination and dysphagia can create a mess bordering on food fight art. A dear friend, Jean Faul, makes these for Patti.

Of course the table conversation is always priceless …

Megan: “Mom, can you possibly eat ice cream any louder?”

Patti: “I can’t help it if things get stuck.”

Patrick: “What did I just tell you to do?”

Patti: “I don’t know I forget.”

Patrick: “CHEW! Don’t inhale!”

Patti: “‘Oh yeah, you did say that.” (noticing her dish is empty and ours are not) “Where is MY ice cream?

Megan: “You just inhaled it, and very noisily!”

Patti: “Then I want a ciggy. I’m tired and want to go to f#cking bed”.

Patrick: “Can we finish our ice cream?”

Patti: “You eat too slow.”

Caregivingly Yours, J Patrick Leer

Divorced parents battling, a child fights for his life

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, dysphagia, Rakestraw's, deer tracks, ice cream

Wednesday, July 02, 2008

caregiving: "people have real issues with the logistics of life"

Parent caregivers of special needs or chronically ill children, I have long held at the pinnacle of caregiving.

In this morning’s Boston Globe is a story of parent caregiving unraveled. Our US media is only going to report the ‘dramatic’. Who knows how many families succeed daily, but we are not going to read about them.

Yet out of the text of this tragic story leapt Dr. Robert Sege, medical director of the child protection team at Boston Medical Center.

Yes, I would stereotype a Yale University graduate with both a PhD from MIT and a MD from Harvard Medical School as an academic blueblood. Yet, Robert Sege not only “gets it” but “teaches it”.

"people have real issues with the logistics of life - with transportation, with child care. Life doesn't stop just because you have a chronically ill kid."

Caring for an ill child is no easy job, he said.

"Families with healthy kids and working parents are stressed out as a baseline, and add to that going to multiple doctors' appointments, keeping track, being on time, making a child take a medication they may not want, and sometimes with chemo, the child is uncomfortable. All the chronic diseases of childhood are really difficult for families."

Is anyone listening? Families, friends, neighbors what can you do? In this story fingers get pointed and legal claims may one day assign ‘responsibility’.

From a caregiver’s perspective perhaps the finger should point at all those who never lifted a helping hand.

Caregivingly Yours, J Patrick Leer

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

Tags: caregiving, carer, autism, Dr. Robert Sege, Boston Medical Center, leukemia, cancer, Boston Globe

Friday, June 27, 2008

caregiving: the heart of the blogosphere

Sometimes blogging is about 'listening'.

Bea, of AOL Journals, Wanderer ("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

(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