Medical Directives

If we did one thing right, it was talking to my mom about her wishes regarding end of life medical care. She was very clear about her desires. HOWEVER, that being said, it is not easy to call the shots when it comes to end of life decisions. In our case, my mom had made it clear before the Alzheimer's was ever evident that she did not want us to go to extremes to preserve her life if she had brain damage. She didn't want her life preserved if she were going to be in a severely impaired mental state.  That is easy to say when you are considering something like a car accident that leaves you in a vegetative state in a hospital room sustained by life support machines. Declining mental abilities is a different, difficult to define beast. How far down the Alzheimer road do you go before you reach "severely impaired"? What is "letting a person go" and what is euthanasia?

Along the road to end stage Alzheimer's, there are stages where people are still leading semi-productive, happy lives.

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

The first time that we addressed very specific questions regarding my mom's medical care was after a seizure that put her in the hospital. After 24 hours of her being minimally responsive, the palliative care nurse came to talk to us about how we wished to proceed. The questions were more than the simple "DNR" that you hear about. Some of the questions were:

• Do you want CPR given
• Do you want antibiotics given
• Do you want IVs given
• Do you want a feeding tube

The antibiotics question was particularly difficult for me. I knew that people, in the end, are often taken out by pneumonia even though it can be treated with an antibiotic. But a UTI can also eventually take someone out, as well, and it certainly can be easily treated with an antibiotic. Why was it easier for me to accept pneumonia than something else? It became a time of soul searching and value questioning. It was a time of answering very personal questions.

In addition to assuaging my own concerns, I was also very conscious of making sure that my siblings were on board with the decisions. Even though it wasn't necessary legally to have everyone concur with the directive I was going to sign, I wanted to be in agreement with my siblings. After all, our relationships would continue after Mom's death, and I felt harmony in the end of life decisions would lead to harmony after Mom's death.

My mom recovered, somewhat, from the seizure, and as Alzheimer's has taken her from us more and more some of the angst involved in end of life decisions has lessened, but the burden of making those decisions remains. You are making those decisions for someone you love, and despite my mom being a shell of the person she was, she is still my mom. Watching this mean disease hurts. Contemplating her death hurts, too.