Is life worth living if you can’t eat?

My mom loves to eat.  It’s what keeps her going.  She has her favorites – onions, mushrooms, nuts, lox and bagels, and pretty much anything that’s spicy.  Most of her day is spent sleeping, chewing and pooping.  It can take her hours to finish a meal.  What we take for granted – chewing and swallowing – no longer come easily to her.  By the time she finishes breakfast, we’re starting to get ready for dinner.

The doctors are now recommending that my mom be fed through a feeding tube.  The Parkinson’s has taken the use of the muscle that distinguishes when food is going down the wrong pipe.  A healthy person has a flap that helps prevent food from going down to our lungs.  My mom has loss use of that flap, so food is going into her lungs, causing her to cough and to draw liquids and solids into her respiratory tract.

My dad is sad, mad, frustrated, scared, “We need to get a second opinion!…Who are these doctors anyway!  They don’t know what they’re doing!”

He can’t stand the thought of mommy regressing. Of course the thought of taking away one of her main reasons for living – the joy of eating – is devastating.

Exhausted from the tests, and the lack of proper levels of oxygen, my mom slept a good part of the day, which gave me time to listen with compassion to my father’s negative thoughts, and to contemplate how I would break the news to my mom when she was ready.  If I were my mom I would probably just choose to keep chewing and run the risk of choking and an infection of my lungs.  I mean who wants to keep living with tubes?  But she deserves to hear the news, to sit with it, and to think about what works for her.  The reality is no one can speak for another, and circumstances change – until you’re actually there, one can’t really say what one would want.  We think we know, but we don’t.

She had told me years ago, when she still could talk, that she never wants to be fed through a tube.   But times change, and then she didn’t have a great grand baby boy coming to visit from NYC, and a granddaughter who has the most contagious giggle visiting from alaska, and a grandson who hits home runs and pitches no run games, and another grandson who can sink a 20 ft. putt.

I sat there watching her sleep with the oxygen tubes up her nose, and listened to the beep of the heart monitor.  I held my dad’s hand and listened to the silence of his emotional pain and let the tears flow down my face.

 

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