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Wednesday, September 14, 2011

 At my last job in a nursing home I finally filed a complaint with the State because every time it rained the roof in the entire facility leaked to the point that it was an unmanageable hazard causing slip and fall injuries.  It was an old hospital and they did not want to buy a new roof. Within a month they sold the place to another company that was already building a new facility (so they say).  I sought Whistleblower Protection from State and Federal laws but the attorney said they were useless laws and charged me $250 for the privilege of knowing that.  So I got out of there before they could do anything to me further. They loudly proclaimed their high principles of problem solving and ethics through it all.  Every facility I am aware of operates with similar strategy. I am so angry.  Even if a genuinely good person is in charge it is the System that defeats anything good they can do.  We cannot blame individuals when it is a systemic problem.


Over 30 years I remember virtually everyone I have cared for and yet there is not one person, place or moment that characterizes them all except May.  She died within 24 hours of admission and we never spoke, except with the eyes.  May had end stage nerve and muscle wasting disease that left her mind intact but her body immobile and in pain.  Her boyfriend brought her in after taking care of her at home, but he was wasted on some kind of drug, maybe her pain medication feeling he needed it more than her. We ordered morphine and got her settled and she finally relaxed.  She was gone by morning.


May reminded me of Mary, another woman with a similar disease.  Mary's husband Harold came to visit drunk.  She could just point to a letter board similar to an Ouija board and spell out words and phrases with her right hand and then use her eyes to indicate if we were correct.  Mary was a refined woman but very patient with me because I was an 18 year old boy trying to be a man; sensitive but having a lot to learn. Mary taught me how to communicate without words using the eyes.


These women are the core of understanding the meaning of what I have done for 30 years.  Whether imprisoned by hearing loss, loss of sight or mobility, failing bodies and minds or simply being alone the challenge was the same:  to reach into another's soul and touch them, to stay out of the way, and have the good sense to know the difference.  Can I honestly say I fell in love with the woman that quietly said, 'I'm tired of being old?' These were largely rhetorical questions without an answer.


The men and women of this generation were far superior to me.  I could only stand by and watch them die.  Oh, I did the necessary things like I was paid to do, trained to do, but they were the ones patiently trying to teach me.  I will spend the rest of my life trying to decipher their encrypted message because I am trapped here too.  Imprisoned by the ignorance of believing I understand what my eyes have seen, what I have heard, and experienced.  That it can all be regulated and catalogued in journals of medicine.


Is it not ironic primary caregivers struggle to stay alive while money movers make millions, even billions tax free, moving money from here to there and acquiring the power and influence to change the world, but will not lift a finger unless they can make more money doing it? Ironic because I have taken care of them in their final hours and they would give me it all had I the power to give them more life.  I have turned down a fortune because in their grief they wanted to pay me money for an hour of genuine kindness that in reality they could not afford.  If you must ask how much it is worth you cannot afford it. Sincere kindness is priceless so I don't charge for it.


It is not my intent to humiliate the achievements and status of professionals and others fallen upon hard times due to aging and disease because no one deserves these indignities.  Indeed, I delight in restoring dignity to every human in need of it regardless of cause.  I do not wish such suffering upon my worst enemy.  Bill wanted one more hour. The cancer was sudden, painful, and terminal. Being sidetracked into a cozy hospice in the country is hardly comforting when given less than six months to live just when retirement promised the rewards earned from a life of hard work and sacrifice.  Bill had spirituality and strong beliefs but it seemed to make matters worse because he cried every day begging God for answers to the Why? questions.  His family was always there.  I had no wisdom to offer, only genuine kindness. And they seemed to appreciate that exquisitely. We were all passengers on the same run away train.


These 30 years as a caregiver were never about Us and Them, we the young and restless and they the sick and dying.  We the caregivers went home to our own hell and most of us are now dead and dying as well.  Even those that got rich and stood in the spotlight for a day eventually were marginalized as the world moved on to The Next Big Thing.  I turned down the big cash reward from Bill's life insurance after he passed though the family urged it upon me secretly saying I earned it somehow.  That is the true value of genuine kindness.  I hope in my final hour some young punk like me finds it in his or her heart to return the favor.


Relating these stories I realize they are not about me. The copyright belongs to the people whose lives I had the genuine privilege of entering.  After 30 years though, forgive me for intruding with what I have learned and interpreted.  I will try to eclipse the experience only briefly but it was a shared experience.  I was a participant observer in a caring relationship, not a detached clinician. Often this relationship included crossing personal boundaries to give voice to people who had lost their voice.  To be an empath, as it were, and courageously enter the thoughts and feelings of people for the purpose of protecting their interests.  Not imagining myself to be a savior, patronizing in a showy display of stilted affections, but carefully spending time with people and listening.


Humor is essential.  Humor walks the fine line, often the straight edge razor, between tasteless, offensive, and unmentionable realities and the funniest things in the world.  It made the most awful predicaments tolerable.  Most things that were funny rarely left the room or facility because you have to be there.  Trying to explain why something was hilarious does not usually work so you keep it to yourself. Sometimes it simply was at the expense of someone you care deeply about and sometimes it crossed the line and became cynical and sarcastic.  The humor enriched the humanity of the experience but discretion prevents me from furnishing examples.  I can only refer to it in generalities.  I wish I could share it.


The healthcare system has enormous flaws, still, any system contains people with good intentions that sincerely want to help people. There are benefactors giving large gifts that have the place named after them as a memorial.  I believe every one should have something set aside for the mass of unknown caregivers providing the real cheap labor that constitutes a far greater gift than brick and mortar. Most will say, I could never do what you are doing there.  Caregivers do not benefit from a plaque in their honor.  Caregivers benefit from the same thing patients and residents do:  genuine kindness.  Take care of the caregivers because one day they will be all you have left in the world.


There is no faster way to take the fun out of something than making a job out of it.  I dare say taking care of people is fun until the over regulated regulators took over.  There are more offices and titles in any given facility to push papers around than there are nurses, aides, and patients or residents. And for good reason.  There are more laws and regulations to comply with than there is paper to push around.


While most of the other support staff stick around the vast majority of aides working on the floor at any given time have been there six months or less and receive the lion's share of blame when things go wrong.  And things do go wrong.  No one group of people contains all goodness and mercy remaining on earth, nor all that is wrong, so it is safe to assume much blame is undeserved and even more is a systems problem rather than personnel.  Over 30 years I have witnessed the truth of this statement.  Although there are exceptions, most men and women seeking work in healthcare actually care and these individuals as a group serve to protect us from the ones that do not care, and the exceptions or predators.  Regulations cannot enforce caring attitudes nor create a caring atmosphere.  People do.


As a consequence, these caring people are subjected to what I call the law of escalating demands whereby they are mandated by law to uphold standards on demand with unpredictable and unstable resources that continuously call upon their instinct to care more, do more, and go above and beyond, endlessly. Many times aides are turned against each other and manipulated with gossip and propaganda that repeats over and over until it becomes considered indisputable truth.  Turn over rates increase as some are wise enough to leave on the first day sensing the toxic atmosphere.  It is carved in stone that no more aides will be provided than what is absolutely necessary. There are facilities with aides working alone, at times with faulty or no equipment, with very high care levels and numbers, exhausted. Again, whether the exception or the rule, regulators and regulations do not stop the oppressive environments if the system allows it.


The rewards are still there in the warm appreciation of patients and residents.  Even a little fun.  People do care because the entire system continues without collapse solely upon the dwindling resource of sheer numbers of truly caring people.  It is heartbreaking that these caring and loving men and women are so oppressed by a system that covers them like concrete and kidnaps them as human shields to justify business as usual.  This takes it's toll creating a depressing and debilitating post traumatic stress called burn out and makes the profession the top injury producing job around.  Healthcare should be the hub of taking care of people indisputably.


It is redundant, and depressing, to continue.  I suffer from burn out for these reasons and more.  Although pursuing a Nursing degree I have stopped and accepted work in other non medical fields.  From time to time I enjoy taking care of people in their homes one on one part time.  I draw sustenance from the warm appreciation clients offer, which serves to keep me connected with what I care about most.  I am not strong enough to change the system but I can prevent the system from changing me.


The story of May, Mary, and Bill is true as are the experiences I have had.  I have watched men and women draw their final breath when there was simply nothing to be done.  Death is an invisible enemy that extinguishes the flame of life every hour of every day silently leaving us to dispose of the body as gently as possible.  At least the Hospice model accepts this eventuality gracefully.  Still, there is no good way to die, no proper way to say goodbye.  Death has not devalued life.  Quite the opposite, it can be a celebration of their lives.


I confess it wears on me though, this business of life and death every day.  Perhaps death is welcome when the quality of life ceases to be satisfactory and pain sets in.  It is in this sense a friend.  And yet it remains an enemy because dying is a process that sets in with a mind of it's own that can neither be expedited nor delayed long.  My job in a local nursing home was in response to my mother's Alzheimer's dementia progressing to the point that Assisted Living may not be able to keep her.  Suddenly, Mom's Congestive Heart Failure ended the progression Sunday morning, December 4, 2005 with a massive heart attack.  I was grateful because we lost Mom in pieces over the course of years and had thoroughly grieved the loss. Still, when we spread her ashes at the farm in the Spring the feeling of loss remains over the years since. It is almost entirely selfish but I miss my Mom.  She was my inspiration to do this.