A recent article in USA Today, relates the story of a 64-year old Oregon woman with early onset Alzheimer’s disease, who is now in an assisted living center. She will eventually die from complications of the disease, but the State of Oregon is doing everything it can to make sure that Nora Harris doesn’t die until she has suffered through the disease until her “natural” death.
Nora Harris has a valid advance directive that provides that no artificial nutrition and hydration be provided. But Ms. Harris is being fed regular food by hand. Whenever it is presented to her, she opens her mouth. The courts in Oregon (and probably in all other states) find her reflexive response to be a willful decision to accept nutrition, even when there is no evidence that she is capable of giving informed consent. Ms. Harris’s directive was not specific enough to override what is likely an autonomic response.
This is another sad example of what can happen to many of us if we do not educate ourselves on appropriate measures for ending our own lives before the window of opportunity closes us in forever in a demented state.
In my opinion, it is high time for those of us who are aging to take self-responsibility for accomplishing our own death. I have heard too many stories of tortured and saddened spouses or family members who end up taking methods into their own hands and use a gun on a loved one, and then even take their own life.
The method for self-deliverance is not “rocket science;” it can be learned. Final Exit Network can educate individuals in a proper method for self-deliverance and can even supply an exit guide as a compassionate presence for the individual and family members.
We do not need the help or permission of a physician or the law to carry this out. Ending one’s own life is not against the law. Helping someone to do it is a felony.
What we do need is to overcome existential angst and become realists. If you are born, you die – that is the nature of things. No one escapes!
So then, how do you want to die? What does a dignified death look like to you?
For myself, it is not lying comatose, in diapers, regressing to an infantile developmental state as I saw happen to my mother. Sadly, she never talked about death or even knew she had a choice about how to “get dead.”
I have been educated. I have the means. I know how to carry it out. If/when I get a diagnosis of dementia, the clock starts ticking. I will not let that “window of opportunity” close.
[MODERATOR’S NOTE: The issue of dementia and the right to die is an important topic. What happens when a person becomes unable to manage her or his own death due to dementia? We will explore these and related issues in subsequent posts.]
Should someone (me) contact FEN right away when it is diagnosed? Or wait till symptoms are obvious? My sister had Alzheimer’s for more than 5 years before she was unable to function independently. It took another 5 before it killed her. I have not been diagnosed, but am having some memory issues.
I’m not sure that there is a simple answer to your question. Were I in the situation you ask about, I would get as much medical information as possible from experienced professionals about my condition, especially the expected course of the disease. As I understand Alzheimer’s, early onset takes a faster course than older age Alzheimer’s. Next, I would seek advice from the Alzheimer’s Association (alz.org) and a doctor familiar with the disease about symptoms and stages of the disease. My father lived for 15 years after diagnosis and died at age 94. He was able to reason satisfactorily for at least the first five or six years after onset, but I don’t think you should rely on anecdotes.
Staging the disease will help you know when you may be losing your ability to manage your own self-deliverance. Deciding when your “window of opportunity” is closing may be more art than science. You will not find absolute answers to your questions, but simple cognitive and functional tests may help you decide when it is time.
I would not contact FEN immediately upon diagnosis, but others may have different opinions. I would wait until I am closer to reaching the point that I want to self-deliver. I hope this is helpful and that you can find other helpful information from the resources I mentioned.
This is a great blog! Did I read that it could be sent on my email? That would be excellent. Congrats, Final Exit Network and its creative and dedicated volunteers!