Caregiving: philosophy of caregiving?

Do I have a philosophy of caregiving? No! Philosophers have time to philosophize.

At best I’m guided by an ever evolving kind of “gumbo metaphysics”. I grab snippets from here and there that inspire me and throw them in to simmer. I DO NOT understand more than I will ever understand. Some ideals are inconsistent or even in contradiction if viewed separately. However when simmered together that resulting “gumbo metaphysics” has guided my wandering through the years of spousal caregiving and parenting that resulted from living with Multiple Sclerosis in our family.

I’ll try to make the time to jot down the current recipe in another entry.

CaregivinglyYours.com

Tags: caregiving

Caregiving: PATF

   While reading the Fall/Winter newsletter of the Pennsylvania Assistive Technology Foundation I found myself mouthing this piece of a sentence from an article over and over again.

"... remember that people are unique individuals and that their abilities or disabilities are only attributes, and do not define who they are..."

        The newsletter is available on line at

http://www.patf.us/pdf/PATFNewsletterFall2005

     The PATF Newsletter is not about to crowd out Entertainment Weekly, Cat Fancy, and National Wildlife from our coffee table. <grin>

     I've only recently discovered this wonderful organization. Among their many works, they act as brokers for low interest loans for people and families trying to buy assistive technology, wheelchair accessible vans included. Hey! 6 or 7 year auto loans at 4% interest is a godsend when you are trying to buy one of these things.

Caregiving: CAUTION caregiving can be dangerous ...

When 'Till Death Do Us Part'

Takes on New Meaning

"…The study suggests that diseases that are more disabling are more likely to result in disease and death in the caregiving spouse," Christakis says. Spousal illness might also deprive the partner of emotional, economic or other practical support, or might impose stress on the caregiver that may contribute to the risk of death, the investigators theorize….” 

     The ‘at risk’ nature of caregiving was hammered home to me several years ago when I adjusted some insurance policies. “Spousal Caregiving” was considered more “at risk” behavior than more ballyhooed hazards such as smoking or overweight. The insurance industry had calculated the effect of caregiving on their profit and loss long before medical studies continued to “theorize”. Fortunately, I was not a sky diving caregiver or I would have been uninsurable.

     Personally, I guess I'm "immune" from this study's theorizing because, as I've pointed out before, at Patti's urging "in sickness and in health, till death do us part" was excluded from our wedding vows - just in case. ........... Now, our 17 year old daughter would jump all over this as only prooooving her point du jour, "you never listen!" <grin>

Caregiving: level of disability

     A numerical level of disability is necessary for communication within the medical profession. Multiple Sclerosis complicates labeling because physical and cognitive symptoms may progress differently in each person.   

     Neurologists use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s score is 8.25.

     Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are evaluated on the Barthel Index of ADL on a scale from 0 to 20, with 20 being “independent”. Patti’s score is 2.

    Periodically I feel it is appropriate to numerically identify the level of Patti’s MS progression and to numerically identify her dependence on others for 90% of the activities of daily living. 

     Not everyone with MS may have the same level of disability nor may ever progress to the same “numbers”.

     However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)

Caregiving: weekend van shopping

     Continuing our accessible van shopping through the Presidents’ Day Weekend, it is interesting to learn that the following vehicles cost the same as a wheel chair accessible 2005 Dodge Grand Caravan:

 

‘04 Jaguar XJ8   -or-   ‘04 BMW 325Ci Convertible

 

      Makes you feel first class. <grin>

Caregiving: van shopping

     Patti and I tried out Dodge Grand Caravans with VMI Northstar conversions, today. We felt like Stone Age people suddenly encountering the modern world.      

     With the push of button the van kneels, door slides open, and ramp slides out from in the floor of the van! Simply roll Patti in, her wheel chair easily and safely anchors into a choice of locations. Push another button and the ramp retracts into the floor, door closes, and off you go. Seating even configures to hold a variety of combinations of wheelchairs and/or seated people.

     Struggling in the parking lot to get Patti in and out of our Ford Taurus Wagon with a transfer board and folding and unfolding her wheelchair were a dramatic contrast.     

     The sticker price however leaves me wanting to join Tevye in a duet of, “If I were a rich man …” Powerball Jackpot is worth 365 Million this Saturday, who knows?

Caregiving: Medicaid changes

        Impact of the Deficit Reduction 

Act of 2005 on You

     Click on blue headline from Caregiver’s Home Companion, for a brief article of how this Act “will make major changes to Medicaid law” and ”… who is affected by these changes”.

     The impact of this legislation is worth noting for anyone; however, especially those with a chronic illness or disability.

Caregiving: remove popcorn before ...

      Viewing the “The Pink Panther” movie could be hazardously funny to anyone with symptoms of dysphagia. Caregivers should remove popcorn before the movie begins. 

     Twice I had to help Patti through coughing/choking episodes brought on by hysterical laughter. Finally, with popcorn under my seat, we enjoyed a hilarious Monday evening at the movies.    

     Besides the mega screen for visual impairment the film fit so many of Patti's MS related cognitive and attention symptoms like a glove. Physical comedy with bursts of mad cap zaniness, and 90 minutes in length. ... Not the kind of review you read in any mainstream publication. <grin>

Lincoln's Birthday Nor'easter

Caregiving: making snow balls

NOR’EASTER! The crème de le crème of winter!    

     Chatting with neighbors while shoveling snow … playing and making snow angels … picking up Patti and driving back roads with tree branches bent low with snow ... warming up in front of a fire … a winter afternoon nap … family time for conversation and memories.

     Making snow balls for Patti and letting her throw at me. <grin>  

Caregiving: journal benchmark

     For number buffs TEN is “… the paradigm of creation. The decad contains all numbers and therefore all things and possibilities…”

     While I am not a numerology fan, I certainly can appreciate coincidence. Sometime during the hours of February the 10th the counter on this AOL Journal crossed the 10,000 mark since its creation on April 24, 2004.

     I am running out of synonyms for overwhelmed to end an overwhelming week of gratitude and awe.

Caregiving: Special Olympics

     Friday I was pleasantly surprised and recognized with this watch by the Prince George’s County Special Olympics. As a deejay entertainer I’ve had the pleasure to be associated with this organization for countless years.      

     Whether it is a Christmas party for elementary age students, a Valentine luncheon dance for high school age athletes or the Games themselves to entertain these young people is to be ‘blessed three fold’.

     Maybe because I also have the eyes of a Multiple Sclerosis caregiver spouse and a parent I believe I see that behind every one of these young people is a family surviving overwhelming daily obstacles.

     Entertainment is simply a diversion for anyone.  Except when these unique celebrations occur, then to me it kind of becomes a quest.

Caregiving: thank you again, Australia

I must express our thanks and sense of wonder whenever I read the latest issue of:

Carer News in the North - Winter 2005

Newsletter of the Commonwealth Carer Respite Center

An Australian Government Initiative      

“… This is the personal ‘blog’ (online diary) of ‘DaddyLeer’ in the US, who tells the story of his experiences caring for his wife who has had MS for 19 years. The journal chronicles a “transitional year from home caregiving to the care facility era”.

    Thank you all for again for highlighting "CaregivinglyYours". To share our story with 'friends' so far from home will always seem larger than life.

     Reading your newsletters I’m always left inspired (and a touch envious <grin>) by the efforts, funding of programs and support of “carers” (caregivers as we call ourselves in the US) by the people and Government of Australia.

Caregivng: enduring frustration

     Caregiving is frustrating more often than it is ever a win or a loss. Under pressure distinctions blur between behavior associated with chronic illness/disability and anything else. 

     Plans with time tables can be one way tickets to caregiver psychoanalysis. More often than not, I end up empathizing with Wile E. Coyote's endless quest to try but never succeed.

                           

    Telling our story, I notice I tend to share the highlights. Monotonous entries of exasperation would be dull; however, enduring frustration may be the bottom line to caregiving. 

Caregiving: flight of steps

Reading an entry from another journal, My Journey With MS: Stress, I was struck by this line: 

     “ It is frightening not to be able to navigate a stair case when you used to be able to ice skate”

Christina’s entry reminded me...

      I guess it was about 6 years ago, I returned home to find a head sized crater in the drywall at the bottom of our stair case and a smaller indentation in the drywall on the landing where our stairway turned 90 degrees half way down.

     Patti could only offer that she thought maybe she fell down the stairs but couldn’t really remember. I found no cuts or bumps nor was she complaining of pain. I’m not Sherlock Holmes but there was enough drywall evidence in her hair and clothing that a deduction was elementary.

     We remodeled again, creating a bedroom on the bottom floor for Patti before eventually moving to a one floor home. 

     Depending on variables like your own home, homes you visit, Multiple Sclerosis progression, or symptoms ... a stair case could become more than a flight of steps.     

Caregiving: black & gold schedule

The Super Bowl has become such a part of Americana it even impacts care facility daily schedules as evidenced by Patti's Friday’s schedule:

Friday, February 3

Super Bowl Team Shirt Day

08:30 Breakfast ... 09:45 Exercise ... 10:00 Cookies and juice ... 10:15  Games and activities ... 12:00 Lunch ... 14:15 Super Bowl Talk Group ... 15:00 Juice Cart ... 17:30 Dinner ... 18:45 Movie.

     Obviously residents were not investing in fan mania merchandising but "colors" were what was important. Steelers' Black & Gold was everywhere. After all this is Pennsylvania.

Caregiving: scootering at Wal-Mart Park

     Why let a February night coop you up? Scootering at Wal-Mart Park provided a wacky Wednesday night outing! <grin>

     Their complimentary scooters maneuver like a tank, but they do make cool beeping sounds when going in reverse. Cruising through the artificial flower section you can even get a park atmosphere.

      Patti "loves" scootering. Her MS symptoms require an attendant or companion to make it possible. With acres and acres of paths she had a blast rumbling through Wal-Mart Park. Why wait till Spring?

     Good times can happen making the best of what is available to you.    

     (Pictures were taken with my camera phone.)