My first real job,  one summer during high school, was as a dietary aide in an Alzheimer’s Nursing Home in my home town.  To be honest I have no true recollection of how I came into this job, but there are a few things I remember vividly about the experience.

     1.) No one should ever puree beans and hot dogs, and if they do, they should never expect any type of thank you for serving it to another human being.
     2.) The name – Nursing “home” is a misnomer, for most of the people living here, this would in no way ever be considered home.  Naming such facilities: Inevitable Conclusions, The Building of Death, or Where we go to Drool, however, equates to poor marketing.
     3.) Resenting growing old is as natural as growing old itself, once our elderly reach a certain point in their aging process where quality of life is quickly diminishing by their own perception – what may be natural is highly resented.  George Carlin once spoke about how the aging process is backwards, he wasn’t wrong.  The happiest people I knew there had long past forgotten most of the lives they had lived, they had lost awareness that they were indeed in a nursing home, they had re-entered an increasingly child like state of ignorance.

At 16, I had only a fraction of the understanding of what always made me uncomfortable there as I do now, but I knew this was no place I ever wanted to reside, no place I ever wanted my parents to reside.  Now at 37, I stand behind that thought with an entirely different frame of reference.  Even as I recognize that fact however, I understand why such places are necessary (in theory) and why, though I’d like to promise never to reduce my parent’s lives to such conditions, the reality is, it’s not always avoidable.

I understand why we made decisions years ago to finally stop caring for my grandfather at home.  I know why we moved my grandmother into assisted living.  I understand the thousands of patients and families I’ve encountered through the years who struggle against caregiver fatigue and great emotional exhaustion that comes with caring for an aging loved one at home.  I’ve watched my mother’s mother as she struggles through the end of her life, courageous and stubborn and strong, I watch the fear in my mother’s eyes as she considers the possibilities and dangers of leaving her mother where she chooses to be, in her home, alone.

We choose facilities for our aging loved ones for many reasons, foremost among these is safety.  It terrifies us as children, grandchildren, as medical professionals, to leave these vulnerable and increasingly frail people we care about and for in potentially dangerous situations.  Often, instead, we move them from their independent lives, their long time homes, their comfort, into facilities where they can receive help with the tasks that are becoming increasingly difficult for them with age.  Places where they can be watched so they don’t fall, where their medications are tracked and controlled so they don’t confuse them or forget them.    We choose safety and assistance for them, often over what they would choose as comfort, dignity and familiarity for themselves.    I’m not sure it’s fair at any juncture to blame people for wanting to make sure their elderly loved ones are safe, but the costs that we cannot calculate are the very costs that make it an often unbearable decision for the aging to leave their homes and sacrifice autonomy to facility living.

Quite often we impose our own values and wishes upon our loved ones….to what end?  Of course I’m not advocating we neglect them, but at what juncture does the sacrifice of the values they see as essential to quality of life and dignity outweigh the longevity that may be gained by increased safety?

Our family has, to this point, made the decision in coordination with my grandmother, that her ability to stay in her own home, prepare her own food, dress as she desires, feel control and autonomy over these years, these factors outweigh the value of the safety that could be gained from moving her.  She falls, every time she falls we hold our breath and hope that it isn’t the time she breaks her hip or hits her head and never wakes up to hit her lifeline.

We are the lucky ones however, her and my grandfather planned and saved and with her current benefits she is able to stay in her home, our family has been able to modify the house to better accommodate her needs and safety, she lives in a community with an amazing rescue crew who helps her up when she falls and understands that she usually chooses not to go to the hospital.   My mother drives the 2 hours to visit her often, we hire people to come help her with bathing and cleaning, we arrange her pills and take her to doctors visits.  This is where the factor of resources, time and money, sadly, has to come in to play.  Not everyone can make these accommodations to keep their loved ones at home, we don’t all have the time or the proximity or the money for visits, help or home care.  It is an unfortunate and difficult reality which makes nursing homes and assisted living vital to our elderly.

The world has never been, nor will it likely be, a perfect place.  We all imagine our golden years in relative health, happiness and autonomy.  I doubt any of us envision happily, a future slowly wasting away in a nursing home, refusing our pureed franks and beans and longing for the freedom of what life once was.  The fact is however, it remains quite likely, that this is where a good number of us will end up, if we don’t push to change the system.  We’ve come a long way from poor houses of squalor and suffering, but we have further to go.

The bottom line is we continue to run nursing homes, assisted living facilities and hospitals as businesses.  Our measurements for the success of these facilities are rarely happiness and resident sense of self, but rather safety and profit measures.   It’s a functional system – but no one ever aimed for simply functional as the description of their quality of life.  Maybe a little outside the box is in order.  Maybe nursing homes shouldn’t be as much like medical facilities as they are like summer camps.   Maybe we should mix metamucil in chocolate ice cream and write “allowed to aspirate her favorite food” orders.  Maybe we should consider that the stripping away of choice in the name of safety often strips away happiness and life.  Maybe we should come to understand, that longevity, that quantity isn’t the end all be all, that quality is far more important.  Maybe we should understand that death is far less terrifying than living without choice, happiness and quality.