Wednesday, February 06, 2013
My mother has been diagnosed with two syndromes, both causes of dementia.
One is called cerebral amyloid angiopathy. I'd never heard of it. Thank God for the internet. It is progressive, caused by the same amyloid proteins that cause alzheimer's, but in a different pattern. Her MRI shows little blood bursts all over the outer third of her brain. This is the cause of her short term memory loss. It also explains why she sometimes feels pain that has no physical cause,or has bouts of vomiting. She can't read and know what she read. She can't remember how use the microwave or a cordless phone. She'll say the same thing over and over. She can't remember anything anyone tells her. We can expect seizures and strokes sometime in the future, next week, next month, next year, who knows? But when they start they will continue.
The other problem is Korsakoff's syndrome, caused by years of drinking. The primary symptom of this is the loss of accurate long term memory. She makes up stories about her past.....and believes them. She has rewritten everything that ever happened to her, and invented a lot of things that didn't, and believes them all to be true. It's called confabulation, a word I've always thought to imply an intent to deceive. She isn't trying to deceive anyone. According to her she has lived the most fascinating life with herself as the heroine in many events that never happened. She drinks far more than she says, but it isn't denial, she believes it, and she no longer has the mental ability to look at empty bottle of wine and know that one glass of wine a day doesn't add up to even 1/5 of the volume of empties she puts out to recycle every week. We have explained in ways my little grandkids would understand. She simply can't.
I guess that's the benefit of dementia: she doesn't know she has it. There is nothing wrong with an 85 year old living in a fantasy world, I guess. It's just sad. She still knows who we are all, just not the lives we have lived.
Her doctor has asked that we three kids decide if we want a "Do Not Resuscitate" order, and I think we do. Obviously if she falls and breaks a bone, sure, we do whatever we can. But when the seizures and strokes begin, there is nothing to go back to, so what is the point of all available medical intervention. They need to know in advance, before the tubes get hooked up.
It's a terrible choice to have to make when she is still moving around just fine, if slowly. But we have to be realistic about the future. It's hard, and I feel like I'm holding my breath each day. The CAA is not her fault, the drinking is, but there is nothing any of us can do about any of it.
I can accept it hard or accept it easy, but accept it I must. Doing nothing can take as much effort as doing something. Now I know why some religions light candles. At least THAT is doing SOMETHING.