WISDOM

The hospice nurse and I met “Nicholas” today.  He is thirty years old and has suffered from Cerebral Palsy his entire life.  He was diagnosed at nine months of age.  He is only sixty-nine pounds and gets his nutrition through a feeding tube.  Nicholas was discharged home from the hospital today.  He has several infections that the typical medication techniques are no longer working. 

Nicholas’s parents, “Sid” and "Norene”, are totally devoted to their son.  They have no other children and have the ability to give their son all that he needs.  They have attendant care through the county and state which helps them get much needed respite. 

Nicholas has been in a recent decline to where he is becoming a bit weaker and sleeping more.  The antibiotic treatment no longer is working.  Our hospice medical director believes Nicholas may only have a few weeks to live.  His parents have very strong spiritual beliefs along with an excellent support network of family and friends. 

Seeing Nicholas for the first time, I immediately saw his beautiful heart; along with a wise old soul.  I truly believe he knows the answers to what it is all about.  He is non-verbal, but when one speaks to him, he so truly and deeply listens.  When we were filling out a Physician’s Order for Life Sustaining Treatment (POLST) form; Sid and Norene would ask their son each of the questions that the form asks.  Nicholas was agreeable to having no extraordinary treatment.  With that option there are two choices of treatment; Selective Treatment or Comfort Care.  Hospice is Comfort Care although we do treat for symptom control and comfort.  Nicholas strongly chose Comfort Care; using his communication technique.  That strong answer told me that he is right where he needs to be.  Hospice’s goal is always to follow the patient’s wishes.  There is no right or wrong answers when it comes to these difficult choices.  I truly believe that Nicholas is one of the most insightful and strongest one around. 

WISDOM

He has lived with Cerebral Palsy his entire life

as was diagnosed weeks before his first birthday.

His parents loved him that much more,

knowing how special his life could be.

 

They surrounded their life around his care.

They gathered plentiful help to keep him strong;

caregivers, therapists, doctors and aides.

Their son thrived under such amazing support.

 

He understands English, but is unable to talk.

He will listen, though, so carefully to your words.

He communicates so clearly with his eyes;

shifting them left for “yes” and right for “no”.

 

He is thirty years old and oh, so very small.

He is under seventy pounds;

but I immediately saw his heart and his depth.

He is truly an amazing, wise old soul.

 

There are no logical answers to

“Why does he have to suffer so?”

We spoke about he being a teacher

as he is educating us all on how to live.

 

There was a poster in his bedroom.

It so describes what keeps him strong.

I believe it is his motto; his driving force;

where boldly displayed it simply states;

         “Never, never quit.”