This is a story about a son taking care of his father. The father initially had a diagnosis of Parkinson’s Disease. Many years later, the diagnosis changed to multiple system atrophy. (I do wonder if that was the correct diagnosis given the father’s inability to know how to use the bathroom. I’m thinking here of Lewy body dementia.)
The son feels out of his depth. He says:
“Broaching the subject and confessing desperation was like uttering the password to a secret brotherhood of beleaguered, overwhelmed, weary, or sometimes just resigned adult caregivers. But the sect seemed ashamed to be seen.”
The son asks the father to move into an assisted living facility. And, “to no one’s surprise but his own, gave my father more rather than less independence.”
And:
“…I emerged from the whole experience not a little indignant. The medical infrastructure for elder care in America is good, very good. But the cultural infrastructure is all but nonexistent. How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties? … I am now convinced that millions of middle-aged Americans need more help than they are getting, and that the critical step toward solving the problem is a cultural change akin to the one demanded by feminists in the 1960s. … There should be no need for anyone to go through this alone, and no glory in trying.”
Three resources are mentioned:
“Had I looked harder, I might have discovered the Web site of the Family Caregiver Alliance (caregiver.org), which offers a wealth of fact sheets; the National Alliance for Caregiving (caregiving.org), which offers an online tool to help coordinate care; strengthforcaring.com, which offers ‘Share Your Story’ and ‘Meet Other Caregivers’ bulletin boards. To get this stuff, however, you have to go look for it, which means you have to have some idea of what you need, and I didn’t. What I needed was for the experts to find me and tell me what I needed. And, indeed, to explain why I needed it.”
Here’s a link to page 1 of the article:
http://www.theatlantic.com/magazine/archive/2010/03/letting-go-of-my-father/8001/1/