Expert: Paula Damgaard - 4/1/2006

Question
My mother formerly diagnosed last May(although we suspected she had signs for 2-3 years before diagnosis) is already in stage 6.   She is completely dependent in all areas,dress, bathing, bathroom, but remarkably can still hold a fork and eat.  Throughout the day, she is either sleeping cat naps, or wandering around the house. She still has brief periods of lucidity. When she lies down, she goes right into the fetal position and lies on her side.  In preparing my family for stage 7, what advice can you give us and is this a period that can last months or years?  She seems to be going down hill fast and is not in good physical health to begin with.

Answer
I am sorry you are all going through this.  In some ways your mom is lucky that is it going faster than usual, when you realize that the typical patient can last 2-20 years from date of diagnosis to death.  This is such an awful disease I think that anyone who goes quickly is lucky.  

As for what she will be like in the last stages: basically she will be more infantile.  Bedridden, diapered, spoonfed, fetal position.  How long she is in this state really depends on her and you.  The fact that she is not in good physical health is a plus on her side, a minus would be how often you take her to the doctor when she gets a sickness.  Used to be pneumonia was the old peoples' friend.  Now with all the high powered antibiotics we have people are living longer.  We are giving people more quantity of life which does not equal quality.  

If you are in favor of giving your mother the best quality of life then you need to express that to her doctors.  This will shorten her lifespan, but decrease her suffering.  Every infection she gets, bhether or not it is pneumonia or bronchitis will weaken her immune system and ultimately her body and therefore decrease her quantity.  But death will be peaceful.  They don't suffer.  That was the decision we made for our mother.  She got a bronchitis and slipped into a coma and died two days later, very peacefully.

I hope this answers your question.  Please feel free to write again.  My thoughts are with you.  Take care of yourself.  Paula