End of Life Care(ing)

End of Life

“He died”.  The words shook me to the core though I knew it was going to happen.  “He” was an elderly man who was in hospice after having a stroke and being hospitalized.  He had Alzheimer’s and a family and friends who loved him.

In the past few weeks, I spent many hours on the phone with Bill (name is changed) who was his primary caretaker.  I suggested Bill for the job when an out of town colleague asked if I knew anyone who could care for her uncle.  Bill is a professional person who studied and worked as an occupational therapist.  Bill is smart, caring and has a gentle soul and someone I would completely trust to take this role as caretaker seriously.  He became a wonderful advocate, protector and friend.  He was happy, and became close friends with his client and the family he served.   Bill often thanked me for this position of trust.  It was I who should be thanking Bill for being the person I knew he would be.

Getting the call that his client has died meant a sad ending to a few years that Bill showed appreciation for but at the end, he shared the turmoil that he, and the family were going through.

His client, who was not in a position to make decisions for himself, had someone who would make the decisions for him.  But neither she, nor Bill knew what his client wanted at the end of his life.

The people in the hospital, and then in hospice held back food and water.  Bill would often tell me that he was frustrated and couldn’t believe that this was OK.  If this is what his client wanted, no one would be in a position to react, but no one knew if this was OK.  Depriving a patient of food and water and keeping him heavily sedated may seem to some as the most humane way to allow a person to die.  It didn’t feel right to Bill.  Each day he would tell me that he was going to learn the wishes of all his family and share his wishes with them.  This way, there would be no questions and the turmoil and energy that this family, including Bill is feeling in making these decisions, could be better spent on loving each other and grieving the loss.  What a gift we can give each other.

Too see a Living Will go to NY Living Will

More detailed information is here from the NY State Attorney General Health Bureau