Tuesday, November 25, 2008

caregiving: Thanksgiving is not a Norman Rockwell painting

In 1621 the Wampanoag signed an alliance which gave the English permission to use about 12,000 acres of land for Plymouth Plantation.

54 years later the Wampanoags were nearly exterminated in war with the colonists. Surviving male captives were sold to slave traders. Their families, women and children, were used as slaves in the New England colonies.


Thanksgiving eve 1989 Patti (totally able bodied) and I spent the night playing with our then 18 month daughter, taking turns with the butterball turkey on the tot slide.

In the morning Patti awoke unable to walk, see, and barely able to talk from Multiple Sclerosis, spending the remainder of the holiday weekend hospitalized.

On Thanksgiving 2001, I stood on the streets of a resurgent New York City.

Too full of parental pride as my daughter marched by in the Macy's Parade to even notice how cold it was.

On Thanksgiving 2007, I looked across the table into the smiling eyes of my youngest cousin. Premature birth, infantile myotonic muscular dystrophy, liver cancer, and months of chemotherapy and successful surgery had challenged his less than two years of life to sit at that table.


Thanksgiving memories are not Norman Rockwell paintings but rather benchmarks of the life we are given and what we choose to make of it.

Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Friday, November 21, 2008

National Family Caregiver's Month ... sleepless in Alaska

Caregivers do not come packaged on shelves, nor are care environments cookie cutter patterns.

While I am thrilled this morning with the first snow here in Pennsylvania, another caregiver up in Alaska wakes to a different view.

from Sandra of
Family C.A.R.E.


"I am so tired and overstressed right now I can barely even express it. I'm tired, but I can't keep the house warm for my dad and sleep at the same time because right now our primary heat source is a fireplace. I can't go to sleep and leave an open flame going in the fireplace, and if I let the fire burn out then the house will get down to near freezing levels by morning. This all causes a significant lack of sleep, and that lack of sleep is producing stress and disorientation like you would not believe."


Caregivingly Yours, Patrick Leer
website:
http://caregivinglyyours.com/
videos:
http://www.youtube.com/daddyleer
musings:
Patrick Ponders ...

let it snow ...


Caregivingly Yours, Patrick Leer
website:
http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Monday, November 17, 2008

careGIVING: The Smell of Christmas

'Tis the season when the 'giving' part of caregiving begins to occupy the thoughts of family and friends.


Endoresement by demand prompts this entry. Recently the staff at Patti’s care facility has been bugging me to find some of “that potpourri” that we use in Patti’s room.

Previously in an entry entitled “gift shop suggestions” I mentioned that we stockpile a Christmas potpourri to use throughout the year. Let’s face it; a care facility has unique challenges. If Patti’s room is a year round oasis for all then this potpourri is a winning product.

Each year when we go to buy our Christmas tree at a local nursery we find it in their Christmas shop.

So after some recent Internet research …. Eureka!
You can order
Aromatique “The Smell Of Christmas” on line or click on their retail locator to find a shop near you.

I even learned that you can buy refresher oil to keep “The Smell of Christmas” potpourri maximized year round. Unaware we have just been replacing, this will save some money … thanks!

Besides the fact that the product absolutely transforms even the most challenged environment I was impressed to learn that Aromatique, Inc is a home grown American success story. Patti Upton created “The Smell of Christmas” at home mixing together some local botanicals and fragranced them with oils and spices. Her larger than life story began with placing some in a friend’s gift shop in Arkansas in 1982 and today leads the decorative fragrance industry.

MORE impressive to me is the “smell of success”. Patti Upton’s commitment to sharing her success has contributed millions to the University of Arkansas for Medical Science and the Nature Conservancy among others.

This is Patrick Leer and I endorse this entry.



Caregivingly Yours, Patrick Leer
website:
http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Sunday, November 16, 2008

juggling through time

Juggling spouse caregiving and parenting was about making sure I made the time.

Recently reading an article about children’s television, a new report singled out only eight programs that have "exemplary" educational content.

Memory smiled as I found ‘Beakman’s World’ still listed and this picture from 12 years ago …


Do not get me wrong, I can also still name the colors of the Power Rangers, rattle off a couple dozen Pokeman, and know who Littlefoot, Cera, and Duckie are. NONE of which are on the list of ‘exemplary’ educational content …


... yet often shared time together trumps on the parallel tracks of parenting and spouse caregiving.


Caregivingly Yours, Patrick Leer

caregiving: a good time to talk about back ups

For our games and amusements we count on the 'back up'. In sports, a back up player can make or break a season. In theatre, an understudy may save a performance. … Yet who backs up a family caregiver?

Family Caregiver Month is a good time to talk about back ups, whether for the short term or the long term.

It does not have to be a catastrophic injury to take out a family caregiver. The flu, wrenched back, or dental surgery can negate their effectiveness. Who steps up?

Do excuses greet requests for help? “Oh! I wish you had given me some notice! I already have made plans.” … (How insensitive of me not to schedule my injuries.)

On the other side of the coin, family caregivers tend to store everything in their head? People cannot step in when they are unsure. A brief concise notebook of medications, medical information, names and phone numbers should be easy to find.

When family caregiving includes in its foundation the twin delusions of invincible and immortal more than one person will always be at risk.


Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Thursday, November 13, 2008

National Family Caregiver's Month ... a roar of frustration

An essential truth of National Family Caregiver’s Month is that a twist of fate is all that separates a non-caregiver from a caregiver.

Sometimes a comment to Caregivingly Yours roars with such frustration and passion that it demands its own entry.


fantaz009 has left a new comment on your post "caregiving: wwwmedicaregov/caregivers/"
:


excerpts …


“… a few years ago my wife (45) suffered a car accident … Surgery was necessary… and then another surgery … which left her totally disabled … extensive physical
therapy and years of retraining to walk and recovery are in store …”

…my wife a Dental Assistant for 12 years has been handed down without retirement and I owning my own business at the time … was forced to sell and take plenty less than it's net worth, to not only provide for
raising my two teen aged daughters yet total around the clock attention to my wife.

… Each of us have made major sacrifices in our lives … fnding ourselves and our daughters at one time totally broke and homeless, losing our house for lack of payment, kicked to the streets like dogs …

… The disability check my wife now receives, is less than $700 a month. We have verily lived on only that now for 5 years.

… any compensation, for my time in caregiving for my wife? … never offered anymore than food assistance.

We can't even afford a car. So are dependent on our daughter for transportation …

… in my trade. I've tried to re- enter but at my age, I'm stopped at the door with looks …

I provide all the care but we get no giving. I feel that even now I'm wasting my time writing this, because I have very little faith in a bureaucracy that never gives answers, only questions my validity while suppressing the problem..."


All reposting to my comment, can be sent to my email address fantaz009@hotmail.com thank you for your time, comments, and concerns. Stacy Bowen

Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Sunday, November 09, 2008

Riding the StairLIFT Inclinator / Multiple Sclerosis

‘Wall walking’ was certainly a phase in Patti’s Multiple Sclerosis but ‘wall climbing’ was a new one for us, as Patti glided up and down the wall on a StairLIFT SC Inclinator. (30 second video)



In order to attend a wedding reception at the Civic Club of Harrisburg, Patti had to debut on this unusual, to us, accessible technology.

While Stair Lifts may be functional they are not designed for non-ambulatory persons …

  • Four (4) dead lift transfers were involved on my part as spouse caregiver to and from Inclinator to her wheelchair, complicated by StairLIFT and wheelchair of different heights. (Typing this entry my back is reminding me of the adventure.)



  • A team of three to four people were needed for successful use. Transferring, operating key controls at top of stairs, physically carrying wheelchair up another set of stairs, and someone to walk along with her to minimize any cognitive complications while in motion.

However, catering staff could not have been more helpful and sensitive … and the bottom line is that it worked.

Attending Patti’s closest friend’s daughter’s reception was what the evening was about …

… and coincidently it was also Patti’s parents’ 56th wedding anniversary.

Interestingly, the Inclinator Co. of America, manufacturers of the StairLIFT has been based in Harrisburg, PA since 1923 when C.C. Crispen, after visiting a sick friend confined to the second floor during recuperation, created a seat that could climb stairs.

While Patti might ride the StairLIFT Inclinator on You Tube, according to the Inclinator Company of America Charles Laughton beat her to the big screen riding a StairLIFT Inclinator in “Witness For The Prosecution” (1957).


Courtesy of the library of the Disability History Museum click on this thumbnail to view a 1933 advertisement for this Pennsylvania invention and accessibility challenges 75 years ago.







Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Wednesday, November 05, 2008

living with Multiple Sclerosis to the White House

Living with Multiple Sclerosis as a family Frasier Robinson’s children never knew him without his disabilities from Multiple Sclerosis or his ‘struggles’ with progression even to get to work much less work everyday and hold a family together. Frasier Robinson died in 1990.

“I am constantly trying to make sure that I am making him proud -- what would my father think of the choices that I've made, how I've lived my life, what careers I chose, what man I married." Michelle (Robinson) Obama

Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos:
http://www.youtube.com/daddyleer
musings:
Patrick Ponders ...

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