Dementia Not Consistently Considered as Cause of Death
Both of my parents' death certificates cited the cause of death as organic brain disease, which basically means dementia. They each had dementia, though each of them suffered from a significantly different type.
Dad's was dramatic. It was the result of surgery that was supposed to prevent the mental decline he would eventually suffer as a result of a World War II brain injury. Something went wrong in the surgery, and he came out of that surgery totally demented.
Mom's dementia was a more general type, which included memory loss and declining ability to make sense of things, but she did not have Alzheimer's disease or vascular dementia.
When I looked at the certificates, I was a bit surprised to find organic brain disease listed as cause of death. I was aware at the time that Alzheimer's was considered terminal, as the body slowly weakens and "forgets" how to function. But I didn't consider that my parents would die from their dementia - especially my mother.
Washingtonpost.com recently ran a news article titled, "Dementia Often Missed as Cause of Death." My first thought was, "No kidding!" But I wasn't sure that it mattered a whole lot. When my parents died, they died. Mom was wasting away and in horrible pain from arthritis and cancer. Dad was slowly wasting away from the effects of his ten years of mental hell. When I saw organic brain disease on their death certificates, I thought, "Well, they have to put something down." And that was that.
This article opened my eyes. I've personally been asked (and I've seen the question asked on Our Alzheimer's) how Alzheimer's causes death. It is confusing to most people. Dementia affects the mind, right? How can people die from that, and why is it important that people consider this as a cause of death?
The article's main point is that when people don't understand that dementia itself causes death, they aren't prepared to make thoughtful end-of-life decisions. The article further discusses how the person's gradual deterioration affects body and mind. As in cancer or other diseases, the body gets too weak to survive, and often develops pneumonia or another infection.
Years ago, pneumonia was often referred to as "the old person's friend." The idea was that you have to die from something, and as life got more and more difficult and the person was faced with pain and misery, pneumonia would spare them a worse fate.
I've long thought about that. My mother-in-law suffered from dementia. I now wonder if she had Alzheimer's, as paranoia and delusions were a large part of her early symptoms. However, when she moved to the nursing home, she greatly improved. I saw her daily, and she seemed to feel safe and cared for, so the paranoia nearly disappeared, and I didn't see her having delusions as she the caregivers saw to it that she had a social life. She made friends and even played the piano again.
Then, she developed pneumonia. It was a tough case and the doctor didn't think she'd make it, but they started a series of five powerful antibiotic shots, telling us grimly that if these didn't work, my mother-in-law would die. The shots worked and she lived. Sort of. She never got back to where she had been. Her dementia was much worse and she was unhappy. She was frail. She was unhappy.
Quite frankly, her time to die was likely when she had pneumonia. All intentions were good when it came to making her well. However, I can't help but think that all we accomplished was giving her two extra, miserable years. Her dementia grew worse, her body weakened, and she finally was able to die.
Had we known the future, and known that dementia was a terminal disease that would eventually take her if the pneumonia didn't, we maybe would have said that the extra potent shots were overload. Regular treatment hadn't worked. I'm not sure we even had much choice, but I can't help but wonder what was really right.
This very situation is why doctors are saying that people need to know that dementia is terminal. If a family knows that, then they maybe would take a second look at prolonging a life, thus sentencing the person they love to more misery, until the dementia takes their life. At the very least, they would have more information to work with.
Making decisions about life and death will always be wrenching. I write often about knowing what the person would want under these circumstances, should they occur. But we don't always have the luxury of knowing ahead what choices we'll be faced with. The best we can do is educate ourselves. And learning more about dementia as a terminal disease, in and of itself, is a good first step. I intend to learn more.