Tuesday, August 23, 2011

About Bob

President Obama-Health Care Bill
Health Care needs to be viewed as a right and not a luxury. I am making this statement because some guy (will call him Bob) recently made that outrageous statement.

Bob went on to say that people don't have health insurance because they are lazy, deadbeats, etc.

It is hard to imagine what planet Bob comes from and what size blinders he is wearing. Those blinders must be the super-dooper-size that obliterate the most glaring facts of today's economy.  For instance, at what point did Bob decide not to make the correlation that people who have lost their jobs, their homes and have no paychecks coming in are not going to be able to afford health insurance premiums and deductibles?

I am delighted that Bob's job provides for his health insurance and he is able to pay the premiums and deductibles for his family. However, I submit to Bob and those like him that once your employer gives you the boot, you and those like you, will be the first ones to start screaming for your "right to health coverage", especially if your spouse or child is diagnosed with something that is progressive and requires constant medical monitoring to minimize the effects of the disease, prolonged their life and give them the best quality of life available.

Perhaps there are some issues with Nationalized Health Insurance and we could choose the best available model of all the ones utilized throughout every industrialized Nation and make the necessary adjustments to suit our needs, but the fact remains that what we have in place now is far worse than Nationalized Health Insurance or doing absolutely nothing.

AFRAID OF CHANGE?

Perhaps we can ease these people's fears by slowly and carefully explaining that change is inevitable. Change will happen both through action or inaction.

Through Action, we have more control over the outcome, through inaction, we have none. Life around us will continue to move no matter how still we are. Our bodies will continue to age even if we remain still. Change will happen and we can choose to be a part of the process or a by-standard who has things happen to them. We can play victim and complain and do nothing, or we can refuse to be ignored in favor of the "haves" and stop being the "have nots" and move into action and change what does not work.

After all, we have been passive all this time, but it does not mean we are insane and will continue to do things the same way expecting a different result. Of course not!, we are not Bob.

HEALTH INSURANCE
They have ridden the ride and they are fighting to stay on top. On top of billions of dollars wasted and ripped off from the tax payers.

For people like Bob, what he does not understand is that his insurance premiums and deductibles are nothing compared to the BILLIONS these insurance companies over charge Medicare for everything. It is government money, therefore it is free money.

No Bob, it is not, it is your hard earned taxes going these companies you seem to idolize. When a wheelchair that can be obtained for $500 is charged as $4,000 to Medicare, Bob... YOU are paying for it.

Maybe if we explain it this way, you will get on board and understand why so many of us are bucking for change to stop the fraud and institute FAIRNESS.

Medicare was overcharged by a hospital for 5 units of chemotherapy per patient when they only did one per patient. It is a 5 to 1 profit ratio and whoever devised it was a crook, a thief and ANTI-AMERICAN. There! I said it Bob, deal with it and you can read all about it here.

Hospitals are not the only ones of course, everyone gets a piece of the pie as long as they are not the consumer. Those who supply much needed medical equipment are called vendors. They vend their wares to you and they bill our current NATIONALIZED HEALTH INSURANCE known as MEDICARE..... Oh yes, the middle man!

Even someone as unconcerned about business practices as the Bush administration is actually raising eyebrows high enough to make them stop and take notice of these middle men. Below is an excerpt of the article and the full article can be read here.

Dr. Louis W. Sullivan, the Secretary of Health and Human Services, said Friday that the Government, for the first time, would set national standards for suppliers of medical equipment, requiring them to be more attentive to consumers' complaints and to repair or replace any defective items sold to Medicare beneficiaries

Not only do they overcharge but they have no problem leaving defective supplies with consumers who have, until now, little to no recourse because one hand does not know what the other one is doing.

So Bob, in closing I have the obligation to inform you that your health insurance premiums are way too high for what you and your family are getting, your deductibles are arbitrary and you will find out how much your loyalty to these companies really means as soon as they decide that covering you and yours is just not good for their bottom line.

At that time, you will be complaining and demanding FAIRNESS and REFORM along side with everyone else.

It is appalling that people have such little ability to step out of their comfort zone and put themselves in other people's shoes. When many voices are raised in discontent, it basically means that things are not working the way they should and need to be fixed.

That requires action on all of our parts.

A new Administration is coming and not only do they need to stay on course, they need to be reminded why they were elected. Casting a vote was the first step, staying engaged for the next 4 yrs is good for the country and is good for us.

PEACE to all.

Written on Tuesday, January 6, 2009

Saturday, August 20, 2011

RACISM


The racists among us have found a solid base in the unholy alliance the GOP has made with the Tea Party.  Congressmen and Senators who have been bred on the tit of racist rhetoric don't bother to think twice about being politically correct and perhaps are using this opportunity to allow their true selves to be known to their own strange base.

Racism in the remarks made about President Obama are blatantly obvious to most of us, but those who utter those words feign indignation and claim to be victimized.  Me thinks, they protest too much.

Below are recent comments made by Senator Coburn as reported by Politico.  Some people will automatically see the "code" and racism because they have lived it and suffered through it, while others will gloss over it because they have heard it all their lives and it has become acceptable rhetoric they simply file away without much thought.  Coburn comments about president Obama has accused him of taking advantages of federal programs in order to receive his education.

Colburn also use code words to indicate "welfare" by using the word "dependency" - Which is something every white racists understands because they associate African-American and most minorities with being total dependency on welfare and social services.  Jonathan Capehart wrote an extensive article on the Washington Post from his perspective as an African-American and a human being.


Racism is alive and well in America and President Obama has become the "whipping boy" (like that?, me neither) in which to focus all the racial hatred and stereotypes that permeate the lives of anyone who has ever been referred to as "a person of color" (I hate this one with a passion) 

It is not just blatant Rush Limbaugh, it is every person that talks like them, acts like them and feign innocence after the fact.  We see them and hear them daily on television and radio, but some of us, actually have to endure their existence at work and in our own neighborhoods.

Public figures take a false position of being offended and maligned by those who call them up on their words.  It is THEIR WORDS, but calling them out offends them.  The other tactic is to claim their words were taken out of context and misrepresented by the "liberal media" (if you are a liberal, you want to find this "liberal media" as much as I do) 

Types of racists
  • The Arrogant - These are the ones who fully believe their race is superior to all others.  Any dilution of their "blood-line" is akin to a sin and if you go to their websites, they lament the decline of the Aryan race and spew hatred against minorities for reproducing faster than they can. These people still exist, they were out of the public realm for a while but very active in their own enclaves across the country.  Make no mistake, they have found an open forum among Tea Party groups and have been identified at Tea Party demonstrations.

  • The Clueless - These are the ones who don't even know they are racist.  They know they don't have any friends or acquaintances that are "of color" but consider that a natural state of affairs, because where they live and work, there aren't any of "those people." - When they hear a racist joke, they laugh and don't think ill of themselves.  The stereotypes about minorities have been etched into their brain and no amount of reason will ever erase these notions. These are the people who are offended by being called a racist and demand to know why black people can use the "N" word and they can't. - Cry me a river, build a bridge and get over it, this is an entitlement, they don't get. Period. -
  • The Users - These people are racists to the core, but they also suffer from a bad case of prejudice.  They not only hate minorities but they hate anyone who does not match them in power and wealth.  Therefore, if you are white middle-class or poor, they look down at you with the same disdain as any minority.  The difference here is that this group is very adept at using the other two groups mentioned above for their own purposes. 
Surely you can think of other categories, but those are mine.  I have had enough dealings to recognize those three and I have had enough.

In the category of The Users I find the puppet masters.  These are the ones that feed the talking points to the Rush Limbaugh's of the world and Bill O'Reilly's.  It does not matter what their name is, all that matters is that they deliver the message.  They all read the same talking points and saturate the airwaves with hatred of "Others" and the Arrogant and Clueless feel vindicated and reassured that everyone thinks and feels as they do.  The Arrogant and the Clueless are easily swayed to part with their hard-earned money to assure protection from the hordes of minorities swarming the land and meaning them harm.

The Arrogant buy AK-47s, military fatigues and survival rations.  They know, they just know, that someone is coming for their women, their land and their food.  They must be prepared for these upcoming events.  The billion dollar industry that feeds on their paranoia continues to laugh all the way to the bank.  

The Arrogant crowd are tired of being on edge and can't wait to instigate a horrific confrontation in which they will feel vindicated.  They taunt by bringing their weapons to public places and use intimidation techniques to provoke "others" - specially if they are white, but liberal, or elitist democrats who betrayed their race by supporting an "Other" into the White House.  (Thank you! from the bottom of our hearts, you wonderful WHITE people)

It is the Clueless and The Arrogant that are so uncomfortable with a half-white president that are willing to vote against their own best interest just to make sure the nightmare goes away.

It is obvious that they have a much lower-tolerance point than those of us who endured eight horrible George W. Bush years.  We have called these people, ignorant, stupid, uninformed, hateful... and of course, my labels above don't help the matters any.  What we rarely call them is insecure and frightened. This is not meant to elicit sympathy, but to make it clear that people who feel threatened (albeit in their own minds), are the first ones to "lock and load" and keep a finger on the trigger.

CODE? - NO, JUST BLATANT

Congressman Doug Lamborn (R-CO) - "Being associated with President Obama would be similar to touching a Tar Baby"

Rush Limbaugh - Too long of a list, but here are 10 from News One.

The Washington Post reports on Tea Party protesters spitting at Congressman Emmanuel Clever (D-MO), racial epithets and slurs against Representative Barney Frank (D-Mass).  One gay, one black. Surely a coincidence and besides, we have already forgotten this, right?

President Jimmy Carter stated clearly that the attacks on President Obama are racists.  It is obvious that for anyone living in the South and familiar with the KKK and all their other bastard organizations, there is no doubt on what is behind the Tea Party and The GOP when they use words and commentary that most decent human beings find reprehensible, for President's Jimmy Carter complete statement read the CNN article: Carter again cites racism as factor in Obama's treatment 

Congresswoman Lynn Jenkins (R-KS) - Extolling the virtues of Eric Cantor and Paul Ryan as "The Great White Hope." - We forgot about this too, right?

I could go on, but there is not enough space in a blog entry, especially when there is more to write about. 

THE GOP 

The GOP can't do anything about the damage the Tea Party has done to their brand.  The Users needed a base and an established party; the two came together like peanut butter and jelly.

The latest discussion on Tea Party sites is how they are using the GOP to their own ends and will get rid of the entire lot with each passing election.  The only uniting thing between the two is the fact that they both want President Obama out of office, but once they have achieved that, the next people to go, according to the Tea Party sites, are the establishment GOP. 

DO NOT expect a back link from me to those disgusting sites - Google the key concept and you'll find it easily.  You can go to You Tube and find David Duke and his connection to the Tea Party - Google, The Council of Conservative Citizens (The Users) and their minions (The Arrogant): Rebels With A Cause.  There are more of these organizations throughout the country and many of their members belong to several groups who share similar fears and a bad case of untested ideology.  Most of them call themselves "Patriots" and you won't find a single minority among their rank and file.  Feel free to read more at The Southern Poverty Law Center.

Visit The Southern Poverty Law Center and find your state in the map and see where these groups are in your state.  You may be surprised by the sheer number in so-called "liberal" states.

These people are not only an insult to all white people but to humanity at large.  No one explains it better than Cenk Uygur  by dissecting the language used against Supreme Court Justice Sotomayor by Pat Buchannan.  What category described above do you think he falls into?  Just curious about your thoughts and impressions.



In case you missed this long video of Pat Buchannan and Rachel Maddow before WE, the People, elected President Barack Obama, notice how racially charged this long verbal battle is and how entrenched Buchannan is in his rhetoric  - Watch and tell me what has changed in the past 3 years.  Has it gotten more blatant? Less? or is the media continually throwing more fuel into the fire that should have been extinguished through refusal and education?




PEACE to all - We need it. 

Related Post: President Obama - 2012  Professor Cornell West and President Obama
Politicians Gone Wild: Ron Paul



Thursday, August 18, 2011

President Obama 2012

Supreme Court Justice Sotomayor
President Obama inherited a mess of global proportions thanks to the dismal administration of George W. Bush and his embedded corporate cronies.  President Bush declared war on Iraq after the Al Qaeda attacks on September 11, 2001 and this opened the flood gates to massive rape and pillage of another country by American corporations and the deaths and permanent injuries of thousands of American soldiers.

Wall Street had a field day creating unsustainable financial articles that moved paper and electronic transactions the way the wind moves sand.  There was barely any consistency of direction and location, the idea was to move volumes, inflate the worth of goods and create instruments that investors would assume were solid financial investments.

Just like drug-addicted parents, the kids pay the heaviest price and shoulder the massive burden of a dysfunctional family.  In this case, the Middle Class in the United States of America payed with blood and treasure and we are still paying for the reckless behavior of those who hold the keys to America's wealth.

We have seen it all, the good, the bad, the ugly and the unbelievable.

The unbelievable includes the hypocrisy of an elected Congress that almost caused the financial default of America because their political ideology trumps the welfare of the country.  Making President Obama a "One time president" has been their goal from the beginning.

The blatant attacks on Unions, teachers, policemen and firefighters all around the country have left many speechless and propelled recall elections and demonstrations by the working people, the poor and unemployed.  The goal here, from my perspective is two-fold: dismantle "the base" that supports the President and enrich the coffers of corporations in one fell-swoop.

As Democrats, we find unbelievable how the media manages to drown everything positive President Obama has accomplished and continues to hammer the message of corporations and the Right Wing on how every ill that afflicts our country must be blamed on President Obama.  

Many on the Left are buying this rubbish and playing a game in which the rules are set by someone else.  The divisive technique is meant to fracture the base as much as possible and put the corporate puppets in entrenched positions in key government sets at both the local and federal level.  

President Obama can only do so much with the cards he was dealt and the opposition he continues to face from Congress.  When Congress was composed of Democrats, many failed to acknowledge (and to this day, this is true), the obstructionism of the GOP and the stupid rule of reaching consensus with 61 votes - Which the Democratic Congress failed to get time and again.

We forget, and we must remember, President Obama's accomplishments:
  • Don't ask, don't tell (bye-bye) and thank you President Obama
  • Signed the Mathew Sheppard Hate Act.
  • Stimulus money to stabilize the economy and prevent a total collapse of the banking industry.  Most people's 401K have rebounded since they became 101K under George W. Bush
  • Saved the auto industry - Jobs saved, created, loan paid back.
  • Appointed the first Hispanic woman to the Supreme Court
  • Updated the military by restructuring how we fight in a cyber-world.
  • Tracking stimulus spending through Recovery.gov
  • The SCHIP program covers 4 million more CHILDREN (thank you President Obama)
  • Effectively responded to Haiti Earthquake and National disasters.
  • Improved the benefits for Veterans, increased quality & efficiency in Military hospitals.
  • Donated the $1.4 million dollars from his Nobel Peace Prize to Non-profits.
  • Provided tax-credit to first-time homeowners.
  • Partnered with banks to reduce the principal of homeowner's whose houses are worth less than what is owed on them - thank Wall Street Banksters for this and Thank President Obama for not having MORE foreclosures than what we already have.
  • Granted regulatory powers to the FDA re: Tobacco products - This reverses George W. Bush policy. (One of the many reversals from the previous administration)
  • Cuban families have more freedom now to travel to Cuba and see their families.
  • Reduced and froze salaries of White House aides.
  • Lowered the cost of prescriptions drugs for seniors on Medicare.
  • Negotiated a deal in which the US will be able to track tax evaders who use Swiss banks.
  • Stabilized the banks WITHOUT federalizing them - Which was the ONLY solution viewed by many "in the know"
  • Bye-Bye F-22 and other obsolete weapons the military is forced to purchase and don't use.  Tax payer's dollars saved in the billions.
  • Embryonic cell research restrictions removed - Bye-bye Bush stupid policy.
  • Funding medical research and development (see above)
  • Passed the Lilly Ledbetter Act - Equal pay for Equal Work (Women and their families rejoice)
  • Has restored a better view of Americans in the world - Your college kids do not have to pretend they are Canadian when traveling abroad.
  • One bullet took care of Somali pirates. (How is this for decisiveness?)
  • One Navy Seal team killed Osama Bin Laden. (Good-bye Bush Excuses)
President Obama in Minnesota - 2011
There are a ton of things this president has done that are swept under the rug as if it did not matter and I surmise that no one is that forgetful, but certainly we can become spoiled by expecting the right things to be done ... yesterday.  For pages filled with legislative achievements, don't trust me and go to the source: The White House. 

In the meantime, let's give credit where credit is due and start balancing the negative nonsense with the facts and see who comes out on top.  I wager it would the Middle-Class, the poor, the under-served and President Obama.

Keep in mind that the reason President Obama does not act unilaterally and behaves like a dictator-in-chief is because, unlike his predecessor, he takes Democracy and our Constitution seriously.  

This is one man that as a constitutional professor and lawyer, KNOWS the constitution and upholds it - unlike all the fake patriots who invoke it when it suits them and conveniently forget what it all means when it clashes with their warped ideology.

Thank you Mr. President for your leadership, patience, and thoughtfulness.  Most of all, thank you for keeping your cool as the rest of us lose ours and struggle to starve the beast devouring our Democracy and stalling our progress.


Next post: Racism

Wednesday, August 17, 2011

The Naked Doctor

The naked truth is that we have a for-profit health care system that is not effective for the vast majority of the population it is designed to serve.

Doctors are human beings and don't deserve the status of god-like image accorded to them through the centuries.  There is no mystery, they go to school, they accrue ridiculous debt and graduate into an abysmal system of paperwork and insurance premiums to cover malpractice.

After their internship, they either go into private practice or work for an HMO or hospital.  While working for an HMO or Hospital they may have less paperwork to deal with and less people in the office to manage, which gives them more time with the patients.  This is a wonderful theory that does not pan out most of the time since they have to seek approval for procedures, testing and medically needed equipment from their higher-ups just like a doctor in private practice is at the mercy for approval by each patient's insurance. 

The medical field is a for-profit system in the United States that does not work to deliver effective treatments, preventative care and respond quickly to minimize health declines at the onset of an illness.  Much time is wasted awaiting for approvals and responses.  The out-of-pocket expenses make patients reluctant to seek care until things get worse for them and they have no other alternative.

We all know how broken this system is and how ineffective it is.  Until we manage to get a health care system that covers everyone in the country - just like they do in France and other industrialized countries - we are going to have to manage what we have a little better. 

General Practitioners 

You are a rare breed in most states.  Others with your medical credentials get trained in specialties, not because that is their calling, but because that is where the money is.  A sad state of affairs dictated by insurance company reimbursements.

If you are still a family physician, please do not set  your patients up for more pain and failure because you are getting a kick-back from ancillary services.  Your patients trust you to direct them toward what is best for them, not your bottom-line. (Yes, it is illegal to do so, but it is done - Patients are not always aware and reporting them creates legal hassles a patient has no energy or time for)

Surgeons 

The Naked Truth:  You are not GOD. You do make mistakes, you do have fights with your spouse, you do have affairs, you do come in with a hangover and you are human.  So please, do not treat your patients as if they were parts of a machine that needs to be fixed.  Their pain is real, their fears are real and you need to know what is in place to take care of them for months or years on end after you have done your 3 or 4 hour job.

Change things a bit and coordinate your work with social services, a patient advocate and for God's Sake! LISTEN to your patients about their concerns post-op.  Your job is not done with the last suture.

Specialists 

The Naked Truth: Most of you are arrogant, self-centered bastards. Period. 

Some of you may be the salt of the Earth and we have a hard time finding you.  The fact is that the vast majority of you treat everyone as if they are beneath you.  You talk down to patients and it never occurs to you to inquire about their difficulties outside of your office.

There is a reason why they may not be able to have the treatments and therapies you want to charge them for; it cost money they don't have and many of them have already gone that route while you were still in medical school, as recommended by someone who was just like you.  They know it is just a ploy to part the insurance company and the patient from their money.

Your owning a piece, or all, of the physical therapy business next door, does not entitle you so soak the patient's insurance company for all  you can get and put the patient to unnecessary routines that are costly and time consuming.  It is their lives and their time, not yours.

Pain Management

The Naked Truth: Some of you are very good, but some of you are nothing more than legalized drug dealers. 

Your patients are walking around like zombies, you are not doing a good job.  Pumping more medication atop of more medication is a bad protocol that destroys the patient's mind and internal organs and you have no idea, or care, what this is doing to their family life.

Your job is to make sure the source of the pain is addressed properly and use medications to enhance the patient's quality of life and keep them engaged in their lives, jobs, and with their loved ones instead of sitting in a drug-induce stupor for what can amount to decades.  

To all doctors:

Do not keep your patient waiting longer because the pharmaceutical representative showed up and you must talk to him first.  This should be a wake up call for you as to what your priorities are and a wake up call to those in the waiting room.

Do not send your patient to a physical therapist, acupuncturist, or pain management specialist until you are SURE that whatever is causing the pain is not broken or torn.  The patient's injuries will only get worse through manipulation and pressure.  You waste their time, their spouse's time and disrupt their lives even further than they need to be.

When a patient finally comes to your office, they are not doing it as a means of socialization, as a matter of fact, you are not a thought on their mind when they feel well or are completely healthy.  Patients are coming to see you out of desperation and want to be "fixed" so they can go back to normal.

Take the time to get to know your patient.  It is pathetic that the nurses in your office know more about them and their difficulties than you do.  It is not their job, it is yours.

Be honest.  Tell them the truth.  Don't waste their time, and above all else, treat them with respect.  They are not customer, they are patients and no one wants to be a patient.


P.S.  Many reading this post will state that their doctors are wonderful. To that all I have to say is: Good for you, and may you continue to prosper in health - Many across the country will find this post resonates with them based on the quality of services available in their states or cities.  Health care is not equal across the board and it certainly needs a major overhaul for the benefit of all.


Related Articles: The Naked Patient   The Naked Spouse



Image: renjith krishnan / FreeDigitalPhotos.net






Tuesday, August 16, 2011

The Naked Spouse

Do you know what a spousal caregiver is? No? - I have something to share with you, most spousal caregivers are not aware of the terminology either and if they hear it, they think it means something for someone else.  Not them. 

Also, take your time reading because this post is not meant to be condensed into a bumper sticker slogan.  You deserve more than 750 words if you are new to this and a heck of a lot more if you have been at this for decades.  Relax and read, you are in good company. 

Are all caregivers the same? 

Yes, and No - everyone has a set of dynamics that are completely different.  The sandwich generation that is raising kids, working, and taking care of elderly parents who suffer from mobility or cognitive issues, deals with a situation that is different from someone whose elderly parent has been diagnosed with cancer and must undergo treatments.  

There are caregivers who take care of a sibling who suffers from a brain injury or developmental disabilities.  There are caregivers who take care of adult children with varying degrees of autism, mental retardation, mental illness or physical disabilities.

There are more resources available to these groups that is not available to spouses: Support groups, home health caregivers, and residential assistance or group homes are some of the resources available, as well as Medicare, and financial resources that are not tied to anyone's income or resources.  

Another big issue is respite care.  This is not available to spousal caregivers because no one seems to think they need it.

Aside from the above mentioned, caregivers across all platforms spend countless hours worrying and doing on behalf of others.  Dealing with bureaucrats and fighting for the rights of their loved ones.

What is a Spousal Caregiver? 

When  you first get married you may utter the words "for better or for worse, in sickness and in health" and you move on.  You are young, you are a beautiful couple and everyone loves you.

They can't help themselves, love is contagious and you two remind the older ones of their younger years and how deeply they still feel for one another.  The younger set envisions making that trip down the isle and be as happy as you two seem to be.  Life is beautiful, you are beautiful and you love your life. 

The Naked Truth 

A tragic accident turns your world upside down.  The urgency of the situation is so dire that your entire being jumps into hyperactive mode.  You speak for her to the doctors, you research treatments, medications, surgical procedures and alternative medicine.  

You adjust the way your home is setup, so he/she can move about comfortably.  You get a chair for the shower and you don't think twice when you have to wipe her behind or wash his private parts.  Why? because "someone" has to and you are "someone." 

Not only that, but remember those little words you uttered on your wedding day?  - EVERYONE will hold you to them, and I mean EVERYONE.  Including yourself.  We have been programmed that "he is your husband, it is your responsibility" and "she is your wife, it is your duty." - When your spouse becomes physically dependent on you to be able to carry on with his/her portion of life, YOU ARE A SPOUSAL CAREGIVER.  - No, I am not shouting, I just want to get your attention because you are too bombarded by all she/he needs to pay attention to anything else.  And pay attention you must if you are in this "Until death do us part" not "until the divorce papers dry up."

YOUR NEW LIFE

Forget about all the plans you made because now it is the time to really know what "one day at a time means" - You live for today and hope for a better tomorrow.  You will know a level of exhaustion for which you had no frame of reference or training.  

You are living life for two people, or more, if you have children.  Everyone's needs are YOUR responsibility and personal time is something you will have to carve out and insist upon if you are going to retain a sense of humor, a smile, and a quality of life you find acceptable.

Spousal caregivers become cape crusaders who advocate furiously on behalf of treatments for their spouses. Fight with insurance company, lawyers and Medicare.  They protect their spouses from the nasty comments from the extended family and forget that they too, are getting older, will have medical issues of their own and that stress can kill.  - Don't worry, it does get better.  Just not right away.

Spousal caregivers forget to eat, can't sleep and spend hours at night fantasizing of things going "back to normal."  Why at night? - Because that is the only time when no one is asking anything of them and their brains rage furiously through the "to do lists" and how to maintain the same lifestyle they embarked on by doing "more" and "better."

No, you are not Superman or Superwoman, you are a human being doing it all without any help and relentless demands on your time and energies.  You do it gladly because you love them.  Period, end of sentence.  

That is the only reason anyone would ever endure decades on end without relief - If you don't love them and you are still doing it, I surmise you are just insane or an bona fide angel vying for sainthood. 

OKAY, I JUST BECAME A SPOUSAL CAREGIVER - WHAT ABOUT EXTENDED FAMILY? 

Are you nuts? - Well, maybe not.  You may be one of those whose entire extended family rallies around and pitches in regularly.   You may have the in-laws from Heaven who compete for Halos with your own side of the family.  If that is your situation, stop reading unless you want to know how truly fortunate and blessed you are, and how different life is for others in similar situations.

The most common issues:
  • Extended family are the first ones to tell you it is your job because you married them.
  • Your extended family will either tell you to dump your spouse or expect you to do everything as it always was, because THEY DON'T LIKE CHANGE. - After the initial shock of something "bad" happening, they go back to their lives.  
  • If your spouse is in a wheelchair, must use crutches, suffers from chronic pain or mobility issues, you will still get the bedroom at the top of the stairs during the holiday celebrations and annual gatherings, because "that is the way things have always been" - How is she going to make it up those stairs? - that is your problem Superman!
  • Is your darling husband on a restricted diet because half of his intestines have been cut out through several surgical procedures? - You are guaranteed a relative who thinks it is all in his head and he should make the effort to not be such a Prima Donna.
There are other things that will drive you up a wall:

Insisting that you drive hours so they can visit with their son/daughter at someone's birthday celebration and refusing to understand  what is so darn difficult about you spending hours sweating bullets getting them, their medications and equipment ready.  What is several hours of driving, getting them settled, and then doing it all in reverse a few hours later?

They know full well that she is in a wheelchair but won't even bother putting up a temporary wheelchair ramp and are miffed you can't manage the few steps up to their house or that the wheelchair does not fit through the home interior doors. - somehow, you are to blame.

She has MS and Chron's disease and the medications are making her a zombie who can sleep 23 hours a day and someone, yes, someone will say:

"Have you tried Ju-Ju beans from the African Coast? I heard they cured someone's cancer in Brazil." - the first few times of "have you tried...?" will generate a complete explanation on your part of all  you have done for her/him, what doctors you have seen, how many therapies you have tried and a collection of all the medications she is on, what they are for, how often she must take them and what the side effects are.

After a couple of years of doing this, you become monosyllabic and grunt a lot.

"Have you tried ________" - Uhm, yes.
"Have you thought of seeing____" Uhm.. done it.
"Holistic medicine works and will cure ________.  A friend of a friend in my sister-in-law's prayer group was blind and now she can see." -  Uhm... that's great.

You may also stop answering the phone or passing it quickly to your spouse so they can deal with their own side of the family.  

Your spouse will tough out their condition in front of others and you will get a reputation for making a mountain out of a mole hill.  This behavior is typical of someone who is dealing with a chronic and permanent condition.  Learn to deal with it, because it could take decades to change. 

More so, if the person we are talking about is a man.  Showing weakness is a sin to them, being viewed as "less than a man" hurts them more than the pain they endure on a consistent basis.  They will be funny, agreeable, charming, pleasant and do more in the presence of "company" than they will once they are home.

This last part is going to drive you nuts and you will want to strangle them until one day you realize what is happening and you let it go permanently.

What happened? - At first you will be baffled, you might even argue about it, you will be resentful and then you realize: Your spouse is spending physical capital reserves they can't afford in order to fit in with the rest of the population - Home is where they are safe, you make them feel safe - and this is where they collapse into their disability. - Let it go, let him have his "normal" moments and learn to roll with it and enjoy those times too.

Would you like to know what else is going to drive you nuts? - Whenever they are in the company of others, someone will pull you aside, give you a quizzical look that indicates "you have been lying, explain yourself" and say: "She looks really good!" 

My Stock Answers:

"Yes, he does.  He is having a "good day" - That's it, no further explanation required.

Refrain from saying: 
  • He/she is disabled not dead. (actually this is pretty good, I have used it, but the look you get may be more than you can bear)
  • He/she looks good after I spent 5 hours getting them ready to go out the door. (they don't get it, so don't waste your time)
  • It is an act and she won't last another hour. (This serves to demoralize your spouse, don't do it)
  • You are a moron. I have explained it all before and your are too stupid, thickheaded or ignorant to want to understand anything that has been said to you about her condition for the past five years. (If this is your mother-in-law, hold your tongue, no matter what you do, it is never good enough for her baby)
  • Shut the hell up and leave me alone. (see above)
  • You think this is easy? You have her come and live with you for one year. (don't say it, it won't happen)
  • F** U & your entire clan. (only if your spouse agrees with you and she/he says it first)
At some point you may say to yourself that you are done and you will only handle what is really important.  This is the time when you have fully grown into your own as a spousal caregiver and as a new person, even if sometimes you look in the mirror and wave to your old self or don't recognize the reflection. 

This is the part when it all gets better (if you want it to be)
  • Schedule time that is just for you.  If you think this is selfish, so be it.  No doctor or nurse is on duty 24/7/365 - you should not be either.
  • If your spouse is bedridden, you need respite from someone.  If there is nothing available in your area and you can't afford quality home-health aides, you need to TRAIN a relative for a week and take them up on their offers of "If there is anything I can do..." and allow them to take care of your spouse for two weeks.  
  • You need to LEAVE town.  Don't stick around the house or you'll be catering to your "helper" as well.  Take your kids on an active vacation because they are NOT disabled and neither are you.
  • Research every social program in your community, State and Federal government available to your wife/husband and USE IT.  Your wife/husband wants to be just that, not your patient in perpetuity.  You do too.  Let others do what they get paid to do and make your life less stressful. 

Spousal Caregivers Are NOT Saints

You are a human being, not a martyr, so don't fall into the trap of putting life on hold in perpetuity on behalf of the disability.  Keep communication frank and open with your spouse and make a pact that the disability will be given the amount of attention it deserves and not an ounce more.  The rest of your life belongs to the two of you. (or more, if you have kids).

When someone says: "I don't know how you do it" - You say: "It's just life and everyone needs to adapt" - You don't have to explain anything.

When someone offers to help you out... LET THEM.

When someone says: "you do too much for her, you should take care of yourself" - You say: "What would you suggest and how can you help me do that?" - They either help you, or shut the hell up.  Either way, you win.
The Attention Getter 
You may have a spouse that loves the attention and milks it for all it is worth.  Let them. There is nothing you can do about it in front of company, but there is a lot you can resolve by going together to counseling and forcing her/him to see you as a human being - not as a clinical aid.

WARNING 
If you had a lousy marriage before the disability, it is unlikely your marriage will last long after diagnosis.  Guilt trips, blame and problems that were there prior to the diagnosis will be magnified and compounded.  Do you want to get out? - Think it through and if that is your final conclusion, go right ahead.

What? Leave? Divorce? Separate? - Yes, you can.
Get the hell out. 

Make the decision that you are either into this with both feet or you are out.  Getting out will save everyone a lot of grief and allow her/him to live a life without resentment on your part.  It is not cruel to admit you can't do it, it is perfectly fine and honest.  NOT EVERYONE is cut out for this lifestyle for decades on end.

At the onset of a chronic illness or disability, most marriages end in divorce within a year.  Period.  This is true of disabilities that will go on for decades and the couple is fairly young.

Disability and chronic illnesses are not the domain of old people, a car crash in your early twenties will put you both in the driver's seat of uncharted medical waters that is too much to handle. 

You may want children, a "normal" life, social activities, friends, vacations and most of all, no stress.  It is okay to get out.  really, it is.

Marriage is not meant to be indenture servitude and should be a strong relationship in which both partners benefit and thrive.  Many couples will continue to thrive because their relationships were healthy and strong prior to the condition, not because it got that way after diagnosis.

Consequences

You will be called every name in the book by your out-laws and your ex-wife or ex-husband because you promised "in sickness and in health" and you bailed out.  But after the sting wears off and you have a normal life, you will be just fine.

No one understands that "for sickness and in health" was easy to achieve in the Middle ages where men died of infected wounds in a matter of months and women died at child birth.  In this day and age, a sickness or chronic illness can last 50 years or more with a continuous roller coaster of declines and continuous crisis.

Benefits of getting out:
  • You won't be financially and personally responsible for all her medical care.
  • You get to have a life that is not tied down to his moods, medications and declining health issues.
  • You get to take care of you.
  • He will qualify for more medical services and in-home health care than if you are married.
  • She will have relatives willing to help out that you won't see when  you are married.
  • He can get married to someone who knows him in this new way and has no previous expectations.
Stay and Shut the Hell Up (or not) 

Everyone will expect you to stay and not complain (after all, it is YOUR lot in life).  Complaining to them is like talking to a wall because in their mind, your job is to make sure your spouse is doing fine. 

Remember: everyone sees the wheelchair but no one sees the person pushing it.

Grit your teeth when you go out on her "good days" and some JERK parks his car in the handicapped stall, or parks his car in the striped section next to the handicapped space.  - They don't care or understand that the striped section is designed to get disabled people out of the vehicle safely. 

Expect your sense of humor to become warped and surprised that both you and your spouse enjoy it.  No one else gets it, but neither one of you cares.

Be amazed at how normal your life really is because  you have adapted to the "good days" and "bad days" beautifully.

Your kids are well adjusted, intelligent, caring, loving and empathetic.  The teenage years are not a pain in the behind, but a source of sorrow at how fast they have grown and what great people they have turned out to be while you were semi-watching.

Your parents and siblings finally "get it"

One day someone ask you: "How are you doing?" and you become mute.

Expect the medical community to ignore  you completely until there are instructions on how to care for  your spouse at home for the rest of her life.  At that point, they will, depending on the severity of the situation, insist that you take classes on caring for someone with her/his condition.

A spousal caregiver once said: NO! if it is illegal for me to do it for a total stranger, I should not be expected to do it for my husband.  - She was threatened with being reported to social services and in the end, she prevailed and her husband got the in-home health care he needed and she was free to be what she wanted to be; His Wife.

There is a huge difference between medical conditions.  Some of us are "luckier" by comparison since our spouses can lead a more "normal" life, but others are bedridden and the "healthy" spouse is working to bring home the bacon and maintain the health insurance he/she so desperately needs.  

Fears abound: 
  • "What if the house catches fire?" how will she get out?
  • "What if he falls and lies there for hours?"
  • "How to get her meds on time?" "His food?"
Methods used: 
  • Cell phone with programmed buttons.
  • Laptop by their bed.
  • Medication alarm and dispenser.
  • Checking in throughout the day.
  • Hourly caregiver a few times a week (this is the subject of another long blog - sorry)
If you are new to understanding what a spousal caregiver is, I want you to get your feet wet and join a great forum.  You don't have to post, just sign up and read.  You will realize that, as their motto says: "You are not alone." The Well Spouse Association can help you cope, develop skills and offer support and resources you may not find in your current location. There are tons of forums dedicated to the illness and the patient.  This forum is just for you.

Learn early on from other people's experiences and draw a line of what others should be doing for your ill spouse because you married them to enjoy life together and weather the storms as they come, but you did not sign up to be treated like the hired help by the medical community.

Next Blog Post: The Naked Doctor
Related Post: The Naked Patient


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Monday, August 15, 2011

The Naked Patient

This article is first in a series that will address patients, caregivers and the medical community.

From my point of view, the most important aspect of medicine is the patient, so this series of articles will address our loved ones first.  If you have been a patient for a long time, you are familiar with most of what will be stated here, but if you have just entered the twilight zone of medical nightmares, you are in uncharted waters and there is a code of silence meant to keep you suffering in silence in perpetuity.  No, it is not all in your head, it is real and it must end.

This article is long and you should read it because there are no shortcuts to understanding what it is like to be a patient for the rest of your life, even if you think that your situation is temporary (a common misconception perpetuated by the medical profession and EVERYONE around you.  Hope and denial go hand-in-hand with lack of information about medical conditions)

Patients - The Naked Truth

It is high-time you become empowered and understand the reality of your illnesses and the status of the medical community.  First of all, understand that very few medical professionals are on your side.  You are nothing more than a dollar sign that pays for their medical malpractice insurance, their golf games at the country club and a better quality of life you will ever have.  You also pay for their staggering medical school student loans and make up for those gazillions of hours they spent sleep-deprived through their internships.

You need to know:
  • Your medical condition's name and all the research done about it.  
  • What works for most and what does not for others.
  • Go to forums for people who suffer from your condition. Use the websites that ask for donations and research to get better educated, but for YOUR condition, read what others have undergone and what they are still going through.  This will help you avoid falling into the same patterns of neglect and medical abuse.
  • Know your symptoms.
  • Be aware of your pain levels.
  • Know your medications - Names, used for, prescribed by, frequency of use, how they affect you - what you find intolerable - how effective are they.
  • State clearly who can speak on your behalf and who else they should communicate with on your behalf.  It is important that your loved one(s) can interact for you when you are unable to do so and that they can ask questions that you may not have thought of asking. - Put it in writing and make DAMN sure it is in your chart and your husband or wife has a copy in his/her wallet.
Take a printed sheet of paper with all the items stated above and made sure the doctor has a copy and another copy goes into your medical file.  Keep one in your wallet at all times and add or minus any prescriptions ordered for you and by whom. 

Have you been in a work accident? Is the pain in your back killing you? Do you live with CHRONIC PAIN? 

DEMAND

You must demand they do FLEX X-Rays for your back.  A regular x-ray will not show if there are hairline fractures in the bones that make up your spinal column.  They ALWAYS save the FLEX X-rays for the very end of your insurance coverage.  You know why, right?

Let me tell  you something YOU need to know - If you have broken bones or torn muscles, there is no amount of physical therapy, acupuncture, massage therapy, aqua therapy, icing or cooling or voodoo magic that will r-e-p-a-i-r anything that is broken.  

The only solution is a GREAT surgeon with loads of experience and success rate and physical therapy after the surgery that could last for months to get you as functional as you can possibly be under the circumstances.

You need to know this because these people will have you jump through hoops to milk your insurance company and your savings account.  If you are new to this game, you may have some reservations and be incredulous because after policemen and firemen, we have been taught to have a great deal of respect for anyone in the medical field.  It is assumed that they are the experts and know what is best for you.


No, they don't know better.  They know money, they know the pharmaceutical representatives and the perks they get for prescribing stuff you may not need or is three times more expensive than a prescription that will work better for you.  

What perks? One of our doctors got an-all-expenses paid trip for him and his family to the Bahamas for "attending" a one-day seminar.  Yeah! they don't get a t-shirt or coffee mug,  They get big ticket items, and in many cases, a healthy reimbursement the patient knows nothing about.
  • Your medical insurance pays for all those shenanigans and the vast majority of surgical specialists own a piece of the action in physical therapy clinics.  It is their bread and butter before, during and after surgery.  You are the meal ticket baby! 
  • Your out-of-pocket expenses will mount quickly no matter how good your insurance coverage - private or Medicare - claims to be.
  • You will be enduring pain you don't have to endure - Think about it; you are suffering from pain from something that is broken and now you will endure additional pain from exercising and aggravating the site of injury by putting additional strain on broken bones.  The massage therapist will be putting additional strain on your body by pressing on parts that should not be touched.  Your acupuncturist will be wasting your time and money. - All these people will get paid by your insurance and the deductible comes out of your pocket.  In the meantime, the real problem has not been addressed once, and you continue to be in excruciating pain while they tell you: IT IS ALL IN YOUR HEAD.
  • Your pain management doctor will administer anything and everything to "take the edge off" from the pain.  He/she will inject you, prescribe and manage the amount of drugs entering your system to alleviate your pain.  However, your mind, your brain, your cognitive ability and other internal organs will be affected.  Some of those medications will be used on a prolonged basis and they are known to be destructive to the heart and the liver or the kidneys.  - Do you need this? NO, you don't.  What you need is for the problem to be addressed correctly and all these intermediary steps skipped completely.
  • YOU will not be the same person you used to be.  How your pain and condition treats you will affect your immediate family and change the roles everyone was used to performing.
  • IT IS NOT YOUR FAULT - you did not cause this (whatever your condition is) and you don't mean to make anyone's lives difficult, but it will be a challenge because things have changed.
  • DEPRESSION will happen if you live with constant pain.  BE AWARE, let people know how you feel and treat this SYMPTOM of your condition accordingly.  Do not let it fester and ruined your life and that of those around you.  Sometime, medications cause lethargy and depression.  Be AWARE of this as well.
  • COMMUNICATE clearly with your support system (your wife, husband, children or partner) and LISTEN to them as well.  They know how medications affect you in ways you don't see or notice.  Your judgment may be impaired for a while and it is okay to allow someone else to do what is best in the best way they can handle it (it may not be YOUR way)
CHRONIC PAIN

Chronic pain sucks and it sucks big time.  NO ONE understands what it is like to be in pain 24/7 and still attempt to function like you did before your body was attacked by a permanently disabling condition.  You do.  Only you know to which extent you are able to handle the pain and how far you can go on in your daily activities.  Proper pain management will only be achieved if you are clear on your medical condition, its causes and your level of tolerance and acceptance.

PAIN LEVELS

Level of pain 9 to 10 = The pain is unbearable and you are suicidal.  YES, it is THAT severe and people have killed themselves in order to stop the pain.  IF YOU ARE HERE, GET MEDICAL HELP IMMEDIATELY.
Level of pain 7 to 8  = You are too close to 9 and you can barely move.  Going to the kitchen for a glass of water is an ordeal and you rather go thirsty. It hurts to breathe. IF YOU ARE HERE, GET MEDICAL HELP IMMEDIATELY.
Level of pain 5 to 6 = If you DON'T move too much, too quickly or attempt to do more than what is absolutely necessary, you can do self-care on your own, but it takes you all day to motivate yourself.
Level of pain 3 to 4 = You are more functional but you hurt a lot.  You have become used to overcompensating with other body parts to make up for the one(s) that hurt.  You lean on one side of your body more, you walk less, you use implements to assist you in getting through the day. 
Level of pain 1 to 2 = The pain is more of an annoyance than anything else. You are able to function more normally than most people in the higher range, but you know that something is NOT right with you.  You can control the pain with medication and even some physical therapy that targets and strengths your muscles. 

SPEAK UP!!! 

You have to get out of the mind set that doctors are mind readers.  They also don't spend enough time with you to get to know you and take the totality of your life and lifestyle into consideration.

The medical profession has become a lousy health care delivery system that resembles a factory assembly line no matter how elegantly appointed their offices are.  If you have the feeling they could careless what happens to you after you have left their office, go with your gut feeling.  They really don't care.  You are just one of the many bills they submit for payment and if your insurance does not reimburses them at a high rate, they'll drop you like a hot potato.
  • Speak up and don't let anyone minimize your situation.  If you feel pain, don't tell them you are sore.  Tell them the truth and repeat it often until they get it through their heads.
  • Show up with all your questions printed on a sheet of paper and do not allow them to rush you out because "your time is up" - Write their answers under the questions and make sure you repeat their answers back to them with any concerns generated from their answers.  If they are vague, ask them to clarify their answers.  If you get the feeling they don't know what they are talking about or could careless about your concerns, it is time to get a SECOND opinion.  By the way, THIRD opinions are even better.
  • Ask them to repeat what you just said to them and address the issue(s) you want to have taken care of and to describe the protocol to get you back to work, on your feet, back to what you consider normal or the new "normal" 
If there is a new "normal", you want to know what that means to you and how it is going to affect your daily life.  You want to know all the facts ahead of time and talk to people who have been through the same thing you are going through.
  • Do NOT let anyone tell you that "it should not hurt" "I know someone who is doing just fine after having the same thing happen to them" "You'll be playing golf in no time" "It is all in your head" or a variation of platitudes that are designed to make you doubt yourself and keep your mouth shut by suffering in silence. 
YOU don't have to suffer in silence.  As a matter of fact, you should be as vocal as possible and shout it from the rooftops because that is the only way you will get the QUALITY OF CARE you need and deserve.  Millions of people are suffering in silence because they have become accustomed to this dysfunctional health care system that is not designed or geared towards the benefit of the patients.

If you need to express your concerns and no one is listening, ask to speak with a patient advocate.  If that does not work, take your written concerns to the hospital administrator or mail it directly to your doctor.  If that does not work, take all your documentation to a malpractice attorney because at this point, you have done all you could to get your issues resolved.  I am sorry, but sometimes, this is the only way they hear you - It is, after all, a FOR PROFIT BUSINESS - and money talks.


There is something repugnant about the way patients are treated in this country and how miserable their personal lives become after a surgery or chronic condition.  

Americans are forced to go back to work when they should be on permanent disability with a team of medical professionals ensuring their quality of life is the best they can have.  After all, QUALITY OF CARE = QUALITY OF LIFE whether we like it or not.  

Americans are forced to endure pain they don't have to endure and worst of all, if they are married, their spouses are automatically expected to shoulder the burden only medical professionals should handle.


Next article: Spousal Caregivers: The Naked Spouse  Related Article: The Naked Doctor




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