Incontinence may be intellectualized by doctors but from a caregiver’s perspective incontinence trumps.
With progression of Patti’s Multiple Sclerosis she is totally incontinent both for bladder and bowels. Add into the mix a wheel chair, a non-ambulatory patient with cognitive impairment and you have more than a challenge.
I think it is safe to assume that most people have changed a diaper on an infant. An adult’s diaper is the same concept just on a grander scale.
Incontinence also means whenever. Anything and everything else planned has to accommodate the need to change Depends and usually clothing.
Yes, all manufacturers promote their product does not leak. If your faith is based in US advertising, then bless you. However, I will say after a decade of caregiving for incontinence that Kimberly Clark DEPEND® brand leaks less.
Picking Patti up on Saturday for her parent’s holiday party my nose told me something was not right. Patti claimed that she had just been changed and just wanted a cigarette. I wasn’t buying.
Preparing to change her myself I found myself shortly assisted by 5 aides and a lift. I think operating rooms have less people.
Later driving back she experienced more bowel incontinence. Changing alone was not going to be adequate, a shower was needed.
Timing was bad as aides were all busy getting other residents to bed so I charged forward.
First, dead lifting Patti from wheelchair into bed so I could get her clothing and Depend off, then dead lifting her into a shower chair to roll into the shower.
Soiled clothing and bed linen I quickly tossed in hamper Depends and wipes in trash.
Observing me, the LPN put meds on hold and pitched in finding me extra wash cloths and towels, rounding up fresh linens, and making the bed.
After shower I dead lifted Patti back into bed, whipped on new Depend, nightgown, and rolled her regular wheelchair into the shower as it too needed a cleaning.
All's well that ends well, as Patti was falling into sleep as I turned out the light and sloshed out in soaking wet shoes.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, December 28, 2008
Thursday, December 25, 2008
A Christmas letter of One Solitary Life
Christmas can be particularly poignant for caregivers and those they care for. Holidays are benchmarks of the past, present, and future.
Reflecting how life does not always fit into a bombastic Christmas Letter, I remembered sitting in Radio City Music Hall with our daughter a few years ago.
Mesmerized with their Christmas Spectacular I felt like a kid.
Yet the scene I remember the most was their living nativity and experiencing for the first time “One Solitary Life”, a 1926 sermon by Rev. James Allan Francis.
In a sense the first modern Christmas Letter …
"He was born in an obscure village,
A child of a peasant woman.
He grew up in another obscure village
Where he worked
In a carpenter shop until he was thirty.
Then for three years
He was an itinerant preacher.
He never had a family.
Or owned a home.
He never set foot inside a big city.
He never traveled two hundred miles
From the place where he was born.
He never wrote a book or held an office
He did none of the things
That usually accompany greatness.
While he was still a young man, the tide
Of popular opinion turned against thim.
His friends deserted him.
He was turned over to his enemies.
He went through the mockery of a trial.
He was nailed to a cross
Between two thieves.
While he was dying
His executioners gambled for the only
Piece of property he had, his coat.
When he was dead, he was taken down
And laid in a borrowed grave.
Nineteen centuries have come and gone
And today he is still the central figure
For much of the human race.
All the armies that ever marched,
All the navies that ever sailed
And all the parliaments that ever sat
And all the kings that ever reigned
Put together have not affected
The life of man upon this earth
As powerfully as this
One Solitary Life."
While there certainly is nothing wrong with pride in winning a soccer tournament, getting all A's, or even just being able to get out of bed in the morning; try to see the love and care at the core of Christmas.
Wishing you all a safe, family filled, and Merry Christmas!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Reflecting how life does not always fit into a bombastic Christmas Letter, I remembered sitting in Radio City Music Hall with our daughter a few years ago.
Mesmerized with their Christmas Spectacular I felt like a kid.
Yet the scene I remember the most was their living nativity and experiencing for the first time “One Solitary Life”, a 1926 sermon by Rev. James Allan Francis.
In a sense the first modern Christmas Letter …
"He was born in an obscure village,
A child of a peasant woman.
He grew up in another obscure village
Where he worked
In a carpenter shop until he was thirty.
Then for three years
He was an itinerant preacher.
He never had a family.
Or owned a home.
He never set foot inside a big city.
He never traveled two hundred miles
From the place where he was born.
He never wrote a book or held an office
He did none of the things
That usually accompany greatness.
While he was still a young man, the tide
Of popular opinion turned against thim.
His friends deserted him.
He was turned over to his enemies.
He went through the mockery of a trial.
He was nailed to a cross
Between two thieves.
While he was dying
His executioners gambled for the only
Piece of property he had, his coat.
When he was dead, he was taken down
And laid in a borrowed grave.
Nineteen centuries have come and gone
And today he is still the central figure
For much of the human race.
All the armies that ever marched,
All the navies that ever sailed
And all the parliaments that ever sat
And all the kings that ever reigned
Put together have not affected
The life of man upon this earth
As powerfully as this
One Solitary Life."
While there certainly is nothing wrong with pride in winning a soccer tournament, getting all A's, or even just being able to get out of bed in the morning; try to see the love and care at the core of Christmas.
Wishing you all a safe, family filled, and Merry Christmas!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Tuesday, December 23, 2008
caregiving: "Hello! You little brat!"
In a recent study of MS patients, … 62% reported speech and voice impairments. Cognitive problems can be a barrier to communication. … 48% displayed cognitive dysfunction
While pushing Patti through the aisles Christmas shopping, a young girl wearing reindeer antlers and jingle bells was leaping about wishing Hello and Merry Christmas to all ...
… until she was stopped in her tracks by Patti’s, “Hello! You little brat.” Patti was NOT in a bad mood, her MS was preventing her from communicating appropriately.
These are the caregiver moments when I wish I had a big sign “MS Zone” or something. Then again what would that even mean to most people.
Dysarthia, in which the capability to understand, remember words and construct sentences is not lost but the ability to speak clearly becomes affected. Slurred speech, together with impaired mobility, can sometimes lead to accusations of drunkenness or decreased intelligence.
Dysphasia, in which there is a lack of understanding of what is being said and an inability to recall the vocabulary and grammar necessary to build a sentence, hesitant disjointed speech affects confidence and demands patience on the other end.
Disinhibition is one of the rarest behavioural symptoms of MS and linked to MS-related damage in the brain. People experiencing disinhibition may have little or no awareness of others' feelings regarding their actions. Making a hurtful or inappropriate comment is frankly the milder end of a loss of their sense of social rules.
Attempting to defuse the moment by introducing ourselves to the formerly happy child , I hoped that putting names to faces might help Patti.
“Patti, say hi to Laura”
“Hi Laura! You little brat!”
Realizing this was going nowhere, it was easier to offer the child a conspiratorial wink and a whispered aside, “Don’t let her bother you, she’s really the Grinch in disguise.” … Recovering with a giggle she bounced off happily.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
While pushing Patti through the aisles Christmas shopping, a young girl wearing reindeer antlers and jingle bells was leaping about wishing Hello and Merry Christmas to all ...
… until she was stopped in her tracks by Patti’s, “Hello! You little brat.” Patti was NOT in a bad mood, her MS was preventing her from communicating appropriately.
These are the caregiver moments when I wish I had a big sign “MS Zone” or something. Then again what would that even mean to most people.
Dysarthia, in which the capability to understand, remember words and construct sentences is not lost but the ability to speak clearly becomes affected. Slurred speech, together with impaired mobility, can sometimes lead to accusations of drunkenness or decreased intelligence.
Dysphasia, in which there is a lack of understanding of what is being said and an inability to recall the vocabulary and grammar necessary to build a sentence, hesitant disjointed speech affects confidence and demands patience on the other end.
Disinhibition is one of the rarest behavioural symptoms of MS and linked to MS-related damage in the brain. People experiencing disinhibition may have little or no awareness of others' feelings regarding their actions. Making a hurtful or inappropriate comment is frankly the milder end of a loss of their sense of social rules.
Attempting to defuse the moment by introducing ourselves to the formerly happy child , I hoped that putting names to faces might help Patti.
“Patti, say hi to Laura”
“Hi Laura! You little brat!”
Realizing this was going nowhere, it was easier to offer the child a conspiratorial wink and a whispered aside, “Don’t let her bother you, she’s really the Grinch in disguise.” … Recovering with a giggle she bounced off happily.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, December 21, 2008
give us this day ...
A birthday present and an ideal caregiver's home companion!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Saturday, December 20, 2008
caregiving: multiple sclerosis and cognition
Special thanks to the Multiple Sclerosis Foundation for enabling our story to bridge from the blogosphere to print media.
"A Caregiver’s Perspective: MS and Cognition" will appear in their Winter 2009 edition of MSFocus Magazine. Below is an excerpt:
After years of journaling it was fascinating to work with a different medium including submitting copy, editors, revision, and such.
This journal / blog began, in part, four years ago because the challenges of people with progressive and severe MS, their caregivers, and families were invisible to mainstream MS publications.
Thank you, Multiple Sclerosis Foundation for this opportunity.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
"A Caregiver’s Perspective: MS and Cognition" will appear in their Winter 2009 edition of MSFocus Magazine. Below is an excerpt:
"Our then elementary-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network. Homecare agencies cancelled our aides due
to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.
Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid- 90s, cognitive problems associated with MS were simply not mentioned very often..."
After years of journaling it was fascinating to work with a different medium including submitting copy, editors, revision, and such.
This journal / blog began, in part, four years ago because the challenges of people with progressive and severe MS, their caregivers, and families were invisible to mainstream MS publications.
Thank you, Multiple Sclerosis Foundation for this opportunity.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Thursday, December 18, 2008
caregiving: nursing home compare
Today the Centers for Medicare and Medicaid Services (CMS) unveiled their new 5-star rating system for nursing homes and care facilities.
NURSING HOME COMPARE
Exhaustive information has always been available through CMS however, this works much like the more consumer familiar restaurant or lodging 5-star systems.
After checking it out this morning, I must offer applause for user friendliness and simplicity.
However, I also must also caution that searching and deciding on 24/7 care is NEVER simple. Certainly use this new tool as a start.
Then visit, visit, and visit again. Your impressions and what you actually see and feel is far more important than data. Care is always about people.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
NURSING HOME COMPARE
Exhaustive information has always been available through CMS however, this works much like the more consumer familiar restaurant or lodging 5-star systems.
After checking it out this morning, I must offer applause for user friendliness and simplicity.
However, I also must also caution that searching and deciding on 24/7 care is NEVER simple. Certainly use this new tool as a start.
Then visit, visit, and visit again. Your impressions and what you actually see and feel is far more important than data. Care is always about people.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Wednesday, December 17, 2008
caregiving: one third of my life ...
One-third of my life has been spent as a spouse caregiver. I discovered this trivia while playing with a calculator on this last day of my 57th year.
Do I have any pearls of wisdom to offer? Yes, never stop building snowmen!
With 3 inches of snow for an early birthday present it was time to realign the feng shui of kitsch.
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Do I have any pearls of wisdom to offer? Yes, never stop building snowmen!
With 3 inches of snow for an early birthday present it was time to realign the feng shui of kitsch.
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Tuesday, December 09, 2008
caring bells jingle (or maybe, toll)
While we put lights on our tree last night, Jingle All the Way played on ABC’s 25 Days of Christmas.
As any caregiver knows, “we” means I climbed up and down and all around illuminating our 9’ Frazier Fur. The rest of the cast of ‘helpers’ chomped cookies offering encouragement and compliments.
It was impossible not to reflect on a comedic scene from the movie released Thanksgiving weekend 1996 involving Arnold Schwarzenegger and Sinbad battling their way through a Christmas shopping stampede. Filmed with Hollywood craftsmanship, special effects, and stunt people you get comedy.
Twelve Thanksgiving weekends later, in reality, you get tragedy. I read that a cell phone video posted on You Tube shows a police officer crouching by a man lying at the entrance of the Valley Stream,
NY Wal-Mart. Shoppers peer from behind glass doors or stand a few feet away, audio-enhanced chatter captures "They need to shock him," a voice says … another cracks a joke … women laugh.
The coroner ruled Jdimytai Damour, 34 died of suffocation. He could not breathe trampled under the stampede of Christmas bargin shoppers on frugal Friday, black Friday, or whatever.
Valley Stream, NY may not be all that unfamiliar. Snapple Beverage Co., and the drink itself, started there.
Portions of the film “Goodfellas” were filmed in Valley Stream.
Reggae singer, Shaggy, lived and recorded there.
Steve Buscemi - Actor/Director, grew up in Valley Stream
Estimated median house or condo value in 2007: $428,480
Estimated median household income in 2007: $78,829
Sounds more like the fictional Bedford Falls than the kind of town where a life is less valuable than saving a few bucks.
Or is it that we, regardless of where we live have forgotten to care or even what we care about?
What does this entry have to do with caregiving? Everything! One day, EVERYONE will know or love someone who cannot care for themselves. God help us!
As any caregiver knows, “we” means I climbed up and down and all around illuminating our 9’ Frazier Fur. The rest of the cast of ‘helpers’ chomped cookies offering encouragement and compliments.It was impossible not to reflect on a comedic scene from the movie released Thanksgiving weekend 1996 involving Arnold Schwarzenegger and Sinbad battling their way through a Christmas shopping stampede. Filmed with Hollywood craftsmanship, special effects, and stunt people you get comedy.
Twelve Thanksgiving weekends later, in reality, you get tragedy. I read that a cell phone video posted on You Tube shows a police officer crouching by a man lying at the entrance of the Valley Stream,
NY Wal-Mart. Shoppers peer from behind glass doors or stand a few feet away, audio-enhanced chatter captures "They need to shock him," a voice says … another cracks a joke … women laugh.The coroner ruled Jdimytai Damour, 34 died of suffocation. He could not breathe trampled under the stampede of Christmas bargin shoppers on frugal Friday, black Friday, or whatever.
Valley Stream, NY may not be all that unfamiliar. Snapple Beverage Co., and the drink itself, started there.
Portions of the film “Goodfellas” were filmed in Valley Stream.
Reggae singer, Shaggy, lived and recorded there.
Steve Buscemi - Actor/Director, grew up in Valley Stream
Estimated median house or condo value in 2007: $428,480
Estimated median household income in 2007: $78,829
Sounds more like the fictional Bedford Falls than the kind of town where a life is less valuable than saving a few bucks.
Or is it that we, regardless of where we live have forgotten to care or even what we care about?
What does this entry have to do with caregiving? Everything! One day, EVERYONE will know or love someone who cannot care for themselves. God help us!
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Wednesday, December 03, 2008
opening December email ...
Opening December email has been like opening an Advent calendar ...
and finding a wonderful award behind each day.
THANK YOU Julie of Julia's New Journal and Amanda of This is me Hugs for your kind remarks and awards.
OUR story as told in Caregivingly Yours is really a story that writes itself. If I could pass along awards it would be to everyone who takes the time to visit here and share our story. Thank You!
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
and finding a wonderful award behind each day.
THANK YOU Julie of Julia's New Journal and Amanda of This is me Hugs for your kind remarks and awards.
OUR story as told in Caregivingly Yours is really a story that writes itself. If I could pass along awards it would be to everyone who takes the time to visit here and share our story. Thank You!
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Monday, December 01, 2008
health care: ignorance and fear are deadly
The American College of Physicians, is urging its members to offer testing to all patients older than age 13 for HIV, the virus that causes AIDS, as a way to identify people who unknowingly carry the disease and might pass it to others.
“ACP recommends that physicians adopt a routine screening policy for HIV and encourage their patients to get tested, regardless of their risk factors ...”
The college joined at least three other doctors’ groups -- the American Academy of Family Physicians, the American College of Emergency Physicians and the American College of Obstetricians and Gynecologists -- that have endorsed wider testing.
Ignorance and fear are deadly ALL the time, not just on December 1st, World AIDS Day.
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
“ACP recommends that physicians adopt a routine screening policy for HIV and encourage their patients to get tested, regardless of their risk factors ...”
The college joined at least three other doctors’ groups -- the American Academy of Family Physicians, the American College of Emergency Physicians and the American College of Obstetricians and Gynecologists -- that have endorsed wider testing.
Ignorance and fear are deadly ALL the time, not just on December 1st, World AIDS Day.
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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 ...
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.
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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 ...
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 …
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 ...
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 …
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 ...
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 …
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).
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 ...
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.
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
“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 ...
Wednesday, October 29, 2008
Multiple Sclerosis: Once upon a time in a voting booth ...
Patti’s Multiple Sclerosis symptoms require assistance for voting. In Maryland poll workers required her to be accompanied into a voting booth by three poll workers representing Democrats, Republicans, and Independents.
Even as spouse caregiver, I could not assist her because allegedly I might try to influence her vote. “You should have gotten her a mail in ballot.” … Since I would have to read it to her and fill it out for her, how exactly does that prevent me from influencing her vote?? Whatever!
Three little old ladies (3LOL) each had to read a statement for each lever, and then help support Patti to a standing position so she could pull levers herself. It was accessible voting hell!
One memorable year, Dole vs Clinton … well, it all came apart.
While Patti was behind the curtain being tortured by the 3LOL she began to fall grabbing the voting machine for support and tipping it over.
To avoid being crushed, the 3LOL push up against the falling voting machine. Patti looses her grip and drops into her wheel chair. The voting machine, now, begins to tip in the opposite direction
Rushing to save the teetering machine, the 3LOL stampede into a voter behind the curtain of the next machine. With startled shrieks now four bodies, in too little space, are bumping into and jostling two voting machines much like pin balls.
While back on the other side ... (since Patti never remembers to set the brakes on her wheelchair) … when she flops into her chair she rockets out in reverse. Her wheelchair slams into yet another voting machine, rocking it and adding its shocked and squawking occupant to the chorus.
Am I’m watching a Three Stooges movie? Machines are helter skelter, a voter or two are still on the floor, the dozens and dozens of people waiting to vote are laughing so hard that strangers are leaning on each other for support, and poll workers are nearing the stroke threshold.
Unfazed by the chaos, Patti rolls up to the frantically huddled poll workers (vote count tumblers in those machines were probably still spinning) and loudly exclaims, "Excuse me; I don't believe I finished voting."
Here in Pennsylvania, Election Day policy is founded in sanity. Patti can choose anyone she wants to assist her with the touch screen ballot.
Just because it is sane, does not mean it is not entertaining. Try helping someone with short term memory loss vote on long tedious referendum issues, or vote for 6 judges out of a field of 12. Hearing our laughter, voters at other screens must wonder if they have the same ballot.
Ahhh! There is nothing quite as inspiring as democracy in action!
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Even as spouse caregiver, I could not assist her because allegedly I might try to influence her vote. “You should have gotten her a mail in ballot.” … Since I would have to read it to her and fill it out for her, how exactly does that prevent me from influencing her vote?? Whatever!
Three little old ladies (3LOL) each had to read a statement for each lever, and then help support Patti to a standing position so she could pull levers herself. It was accessible voting hell!
One memorable year, Dole vs Clinton … well, it all came apart.
While Patti was behind the curtain being tortured by the 3LOL she began to fall grabbing the voting machine for support and tipping it over.
To avoid being crushed, the 3LOL push up against the falling voting machine. Patti looses her grip and drops into her wheel chair. The voting machine, now, begins to tip in the opposite direction
Rushing to save the teetering machine, the 3LOL stampede into a voter behind the curtain of the next machine. With startled shrieks now four bodies, in too little space, are bumping into and jostling two voting machines much like pin balls.
While back on the other side ... (since Patti never remembers to set the brakes on her wheelchair) … when she flops into her chair she rockets out in reverse. Her wheelchair slams into yet another voting machine, rocking it and adding its shocked and squawking occupant to the chorus.
Am I’m watching a Three Stooges movie? Machines are helter skelter, a voter or two are still on the floor, the dozens and dozens of people waiting to vote are laughing so hard that strangers are leaning on each other for support, and poll workers are nearing the stroke threshold.
Unfazed by the chaos, Patti rolls up to the frantically huddled poll workers (vote count tumblers in those machines were probably still spinning) and loudly exclaims, "Excuse me; I don't believe I finished voting."
Here in Pennsylvania, Election Day policy is founded in sanity. Patti can choose anyone she wants to assist her with the touch screen ballot.
Just because it is sane, does not mean it is not entertaining. Try helping someone with short term memory loss vote on long tedious referendum issues, or vote for 6 judges out of a field of 12. Hearing our laughter, voters at other screens must wonder if they have the same ballot.
Ahhh! There is nothing quite as inspiring as democracy in action!
Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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