What’s important for families to know and understand?

The families have to figure out how to be supportive of the person.  You can’t spoon-feed when they don’t need to be spoon-fed.  You need to interact with the patient and see what they need you for.  And sometimes, they need you to give them space.  Sometimes the patient is very depressed, and just needs to be depressed.  Because in fact, they’re having a funeral of themselves.  Their prior lives are gone, and they might be able to reinvent them.  But they need space from the family.  They need to not do too much, but inquire and say, “What can I do for you? What is it you want me to do?”  Sometimes it’s giving them space, sometimes it’s making sure that they have the access to the therapy, that they have the access to comfort, the access to the food.  Sometimes they just want to talk, sometimes they don’t want to talk to family, but they want to talk to a professional.  Sometimes they’re not feeling well, and they can make choices about whether they want to take a medication, or live through whatever they’re going through.  Rather than take the medication, they want the choice.  Choices have been taken away from them; you don’t want to force anything upon them.  You want to give them the choices because that’s what they’ve been stripped of even more than of any strength or independence.  They’ve been stripped of their ability to make a choice, because they’ve made choices ever since they were two-years-old of what they want to do, what kind of shoe they want to wear.  They don’t want their life scripted for them.  So, families can’t squeeze too tight, they’ve got to give them enough leeway to allow them to make the choices, to allow them to re-create themselves.