Heartbreak: Now We Can Die

Shortly before my retirement as Program Director at Down Home Ranch I received a phone call from a woman who had a brother with Down syndrome.  Her brother had lived with their mom all his life, but she had not seen him in 16 years because her mother had shunned her after an argument.

 A few weeks before her phone call to me she had been contacted by a social worker about her brother.  During a welfare check requested by a relative, the police had discovered their mother dead in her bed, her bewildered son having lived with the dead body for at least four days.  Their mom had always told him never to answer the telephone or the door, so he hadn’t.  He had just managed as best he could.  He did not understand what had happened, and was anxious and confused.

 The police contacted social services, who contacted the sister, who agreed to come get her brother.  Amazingly, he still remembered her as if they’d seen each other the week before, and could stay with her and her husband for a while, but it was a strain and she didn’t know where to turn next.  And so we talked for about an hour. 

 This case is an extreme example of a very widespread problem.  Approximately one million intellectually or developmentally disabled adults continue to live with and rely on their aging parents.  Many of these parents have not made workable plans for their children after they are gone, and it’s easy to ask why, but unless you have navigated the labyrinth of our disability care system and its legal ramifications it’s easy to overestimate the average person’s ability to do that while caring for a very dependent person 24/7. 

 So parents sit tight and hope for the best, although they are not unaware of the inevitable.  I recall in the early days of Down Home Ranch several parents remarking to us, “Thank God for the Ranch.  Now we can die.” 

 This is heartbreaking, and we’ve witnessed it first hand:  One of the early clients at the Ranch became one of our true favorites of all time.  Tall, loud, and opinionated, Mary [not her real name] was a character.  “Mary stories” became favorites; you could never quite predict what Mary would do but you always sort of looked forward to it, as when she officiously co-opted a seat next to Bishop McCarthy reserved for Jerry during a ceremony to bless a new building at the Ranch.

 Tragically, Mary unexpectedly died in her sleep at the age of 31.  At the funeral, her blustery, take-command father (whom she much resembled) came to us.  With tears streaming down his face, he said, “You know, I have prayed since Mary was a little girl that she would die before us, and my prayer was answered.”

 Could sadder words ever be uttered by a parent about the child of his heart?  I don’t think so.  Children are meant to survive their parents, and most do.

 And this is what Point Rider is all about.

Point Rider, child of Down Home Ranch, exists, among other reasons, to help make it possible for aging parents to face their mortality with the comfort of knowing their child will be cared for.