Between hope and reality lies a dilemma

by mymothersbrain

On March 10 The New York Times ran a story by Nicholas Wade about how researchers can now find the exact cause of disease by decoding a patient’s entire genome. This is cause for great hope. Think of all the possibilities — early detection, possible preventions, cures, etc. Here is the link to the story: http://www.nytimes.com/2010/03/11/health/research/11gene.html

But despite the fact that this is good news, I was reminded of several conversations and a discussion that came up in one particular support group. To know ahead of time if you will develop a disease is tempting; as one friend said “to be forewarned is to be forearmed.” It might mean that you could prepare better financially and emotionally for what is certain to be a trying time.

But there is also this cautionary note: Some people believe that if you want to be tested for a genetic disposition toward developing Alzheimer’s you should be prepared to pay cash for that testing and walk out of that office with all of your records in hand. In other words, leave no trace. Make sure that what you learn is confidential. The reality is that we live in a society in which insurance companies can and will deny medical care based on pre-existing conditions, excess cost, and other less logical reasons. And believe me, I personally don’t have the money to pay for that kind of care on my own. Alzheimer’s care is not cheap. Specialists such as neurologists are expensive, as are the services they provide. Residential care runs into thousands of dollars a month and it goes up every year. My mother-in-law’s state-of-the-art care runs more than $5000 a month and that does not include medications or the hospice care she now receives daily. That’s more than $60,000 a year right now; who knows what that price tag will look like in 10 more years. Fortunately, my mother-in-law has a good pension and long-term-care insurance. Together these funds are paying for her care.

I’m not sure I want to know if I am going to develop Alzheimer’s. After all, anything could happen before I reach the age where the disease would manifest itself, right? I could become sick with something else, or I could die in a car accident. No, I don’t want any of it to happen. I want to live forever! Who doesn’t?

I am not advocating one decision over the other; I don’t know the best answer to this question. Still, I’m curious to know what others out there think: Do you get tested in order to be better prepared for the worst, and hope that no one else finds out so that you will have the medical care you need when that moment arrives? Or do you just move through life hopeful of never having to deal with Alzheimer’s?

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