This week I found David Hilfiker’s blog. David is in his late 60s and learned in September 2012 he has Alzheimer’s. In January 2013 he started blogging about his life within Alzheimer’s.
As a former physician, taxi driver, advocate for those with AIDS and a frequent essayist on poverty, justice, the environment, economics, spirituality and politics his perspective is unique and painfully self-aware.
The amount of courage it takes to write something like this is inspiring.
When reading his autobiography a few statements stood out.
[Alzheimer’s is] “A long, progressive mental decline (to the point, for instance, where I don’t recognize my family), [which requires] nursing home care, and early death from complications of the disease.”
Most people worry about the point where you no longer know your family. I have to say my experience is there are a million tough things that happen before that. There are delusions, depression, perceived hearing issues and those who are inflicted have an overwhelming sense that something isn’t right – but can’t articulate it.
“Demented people seem so pitiful.”
Perhaps this is what makes us uncomfortable and unwilling to accept that someone we love has dementia. They do something pitiful, but then a few minutes later do something remarkable. You subconsciously forget the pitiful act and remember only the remarkable act.
“What was going on?
Perhaps I didn’t want to know, but I did ask my wife Marja and several close friends if they had noticed any strange symptoms that might indicate decreasing mental function. They hadn’t, but I asked them to tell me if they did. No one ever said anything.”
It is so hard to acknowledge when someone you love has dementia. You always think it is a normal sign of aging until you realize it isn’t. And once the cognitive ability is gone, it is gone. You can’t get it back.
Alzheimer’s is an epidemic. One in eight older Americans has Alzheimer’s disease. Alzheimer’s disease is the sixth-leading cause of death in the United States. Over 15 million Americans provide unpaid care for a person with Alzheimer’s or other dementias. Payments for care are estimated to be $200 billion in 2012. (Source: Alzheimer's Association: http://www.alz.org/downloads/facts_figures_2012.pdf)
David’s articulation of what it is like within the disease is unique and worth paying attention to.