Caretaker Gives Account of Caring for a Loved One

[Ed. Note: This is a "diary" written on an internet "blog" by a doctor  under the screen name "Granny Doc"]

There is no definitive test for Alzheimer's short of autopsy, which examines the brain of the deceased for the tell tale plaque that systematically interfers with neural transmission.

There are some behaviorial indicators, but they are neither definitive nor predictive. They are also shared with a wide range of symptoms exhibited by the deteoriating brain of the very elderly.

There are, of course, huge marketing plans for frighteningly expensive drugs that trade on the guilt of care takers, and the faint hope that the spiral descent into madness can be, albeit briefly, halted. Without a very good form of medical insurance they can cost you $800 a month. And what does this buy? There is no guarantee, no promise, no real chance of reversing or truly ameloriating the disease - just slowly, ever slightly, the symptoms.

There is the daily horror of watching someone who was once powerful and very much in control of themselves, and their life, slowly crumble into helplessness and confusion. There are the brief moments when they recognize the absurdity of their behavior and like a two year old throw a tantrum because they don't want to be this new person, but do not know how to stop.

And there is the 24/7 compassion and understanding that you feel, fighting with the anger and resentment at having your own life totally consumed with care for a childlike, whiney, unpleasant individual who will never get better, never improve, never return to the dynamic, funny, vigorous person you once enjoyed so much.

There are the specific behaviors - interestingly, they vary little among sufferers - of endless pacing in circles, repetitive questions that you just answered 90 seconds before, the tuneless humming, bewildered demand for constant attention, resentment that they don't know what is going on, and a frightening attempts to "help" you in way you can not imagine.

There is the wandering that requires your total vigilance and monitoring, the disturbed sleep patterns with nocturnal strolling, and peculair food preferences and refusal to eat that which they have eaten for decades. And, of course, there are the Werther's. Repeatedly getting undressed in the middle of the day. Opening and closing the front door regardless of the external temperature. Sitting at the dining room table for half an hour waiting for something...unknown.

There are community organizations that offer help, or a break from the unceasing strain, but they must be very carefully vetted to eliminate those who are working out their own issues by assuming the virtue of compassion. They can be dangerous, and disruptive to the patient, your household, and your ever more fragile sanity.

There is the inevitable facility that will, in time, house the patient, and you may find one that is both good, and affordable, but will then enter into an internal war. When will the move will take place? Are you just having a bad day? Have you really reached the point where you can no longer cope? Is the cultural acceptance of placing the very ill in total care a reasonable one, or should you try just a little harder to hang on, and keep them with you, at home?

You will question your motives. You will feel genuine guilt and a profound sense of failure. Shouldn't you be able to DO THIS? Shouldn't you remember the agony of raising your own children and remember that these are the people who cared for you when you were difficult, expensive and very hard to get along with? What kind of person are you, anyway?

This is the pattern. And whatever those who have not experienced it offer by way of advise or commentary, this is what you must accomodate, every moment of every day, for some unknown period of time.

Know that your experience is shared. We who have been there understand. And when you are short tempered, out of sorts, and just plain tired to the bone, you have earned the right to feel that way. Don't be to hard on yourself.

And when the day arrives, and it will, when you can no longer deal with the situation, you are more than entitled to say, "Enough". I here by give you permission to throw in the towel when the fight is truly lost.