Wednesday, September 8, 2010

who sets the parameters?

Quality of life

Quality of life is a frequently used phrase but have you ever tried to define it?
To put parameters on it?
I googled it and a variety of things popped up but very little could lay it out for me "What is quality of life?"
I did find this:

"The definition of quality of life is different for everyone. The main thing that determines quality of life is our ability to enjoy all that life has to offer."

Great Grandma Ella and baby Cohen

So that makes me wonder...Does "quality of life" change as our lives change or does it remain the same?
Held to the same standards?
The same parameters?
That is what I have been pondering all day really.

I sit here tonight defining what is quality of life to me, but isn't that really only my definition, based on my life, my experiences, my losses, my values, so as you sit there reading this with your own experiences-values I bet our definitions vary to some degree.

So whose to say my definition is any better or more valid than yours?

Which leads me to my next thought, that as we grow as individuals, as we experience life are we not always then changing and modifying, changing the parameters on our own definition of quality of life based on where we've been and where we're headed?

Great Grandma Ella meeting Kadence Ella for the 1st time!

I do believe that no matter our circumstances there will be similarities, factors, that weigh into quality of life but again how are they measured? By my standards or yours?  Things like purpose, optimism and life satisfaction. spiritual, physical comfort, safety, and social connections. These are all factors that would play into our quality of life right?

This is a question that is asked by many parents I meet through my work....this is a question that they too must struggle to understand? If a child will never { walk ~ talk ~ see ~ hear} we all jump to the conclusion that it will diminish their "quality of life" because we can {walk ~talk ~ see ~ hear} but if a child knows not what it is like to see then I ask how does this diminish their quality of life? Because quality of life is determined by the person based on their experiences right? Do they not set their own parameters on quality of their life? Can they not be happy? (Because I have met some VERY happy kids, who would probably not fit your definition of "quality of life." Can they not be safe? Can they not be satisfied?  Maybe not to "your" definition of happy, but what makes mine/your definition better, more valid?
This question about quality of life has been a resounding theme through out my "Career" life....I was the social worker in a nursing home, where quality of life is always in the forefront always being questioned, to hospice, where again quality of life is the essence, to my work now.......but now it is in my life as we as a family consider the thought.....

What is quality of life for Grandma Ella, who wages the war against Alzheimer's?
I think some would say already that she has none.
That her quality of life has already slipped away.

But I cannot
will not
bring myself to believe that
or find that to be true.
If you and I are ever changing our own definitions, our own parameters, then one would have to assume that the definition changes through out our lives.
Not just when it's convenient and pleasant to do so.

I will agree that her quality of life has changed.
But I beg the question,
what makes the new parameters of her quality of life any less important? 
I don't think "we" get to judge that.
I don't think we get to say her new definition of quality of life is any less important, because it is still hers.
This is still her life.
Her story.

Kadence and I stopped this morning on a round about trip to work. 
Did she call me by name?  Nah, she didn't
Did she recognize me? No. She didn't. 
Was she able to dialogue back and forth? No. Words are hard. 
Will she remember we were there 5 minutes after we were gone? No. She won't. 

Did she smile when I talked about playing baseball? You bet ya.
Did she laugh when a silly little girl was jumping up and down? Oh she did! 
Did she beam with pride as a beautiful little girl climbed in her lap? Absolutely. 

"The definition of quality of life is different for everyone. The main thing that determines quality of life is our ability to enjoy all that life has to offer."

Do I think that she enjoyed everything that her life could offer her in that moment?
Her current "quality of life?" 
Without any doubt in my heart.
So all those other things,
things outside my control,
the battle against Alzheimer's,
that doesn't define what I can do to help her create new parameters.
A new definition.
A different "quality of life."
It's still her life.


Kim said...

Awesome! I'm crying my eyes out.

Tiffany said...

Wonderful post, Jen. I always think that no matter what we're going through in life, God has placed us in that moment. And, if we weren't supposed to be going through it, He wouldn't have us there. He still has a purprose for Grandma Ella, and that's the beautiful part of life. So, what is her purpose? We may never know. But, I guarantee you that she knows.

The Preister's said...

Jen, what a great post!!

I think our criteria for quality changes...the things that were important to me at 16 certainly are top on my list now. so, I have think that at 45, 60, 75 my list will be forever changing! I would hope the core of the list will remain the same (in no particular order!) happiness, family, God, friends, health, and memories!

I can easily say that experiences change our expectation of quality of life...doesnt make them better or worse, just different - right?!

Thanks for the haev such a gift!!!