Expert: Paula Damgaard - 4/8/2010

Question
Hello Paula, My mother is 83 years old.  She was diagnosed with Alzheimer in 2000 or so I believe.  It has been a long 10 years.  She is in late stages now.  She is in a nursing home, but she is no longer eating, or drinking or taking her medicines.  The nursing home staff are still trying to feed her, but she holds the food in her mouth and doesn't swallow it.  I have 4 brothers and 1 sister.  My mother is in a different state than I am.  My two brothers that are with her have been trying to make the decision to change her care to Hospice.  I think it would be the best thing for her so she could go peacefully.  I can only imagine the torment it must be for her.  She can no longer talk, well she can say a few words, but mostly it is gibberish, she still has some facial recognition.  Five of us kids think that Hospice is the best thing, but one my brother, is having a very hard time making the decision.  He can't understand, why she won't eat.  He goes there and tries to make her eat.  He just can't let go. I don't think he really understands what is going on, and that this is a natural, but painful, progression of the disease.  How can I help him understand that it is time to let her go?

Answer
Hi Karen, you are right this is a a long progressive disease.  Not really painful, fortunately those sensors are destroyed by the disease early on.  However, The 5 of you are right, and actually Hospice should have been called in long ago.  Unlike with cancer, Alzheimer's patients don't need a "six month to die" timeline.  Hospice knows that this is a progressive disease and the end point is death.  

In order to explain it to your brother the disease goes like this: they start as an adult, and the disease marches through their brains chewing up everything so that the end they are back to an infant state.  As with a newborn, they have no idea who their mother is or are they aware of anything around them.  So his idea that your mom, still "knows" you and is aware of you being there is wrong.  Now the only reason for keeping her alive is purely selfish.  He is totally doing this for himself.  She is not aware of any of her surroundings or the people in them.  In my opinion that is cruel and unusual treatment.  Ask him, if you could take mom back 20 years and show her how she would look today, would she want this?  I doubt not.  

It is not easy letting go, but truly you lost your mother 10 years ago.  Now all you have is a body.  

I hope he listens. Sometimes I also think that patients stop eating because they have had enough.  Tell him he needs  to respect that decision for her.

I hope this helps.  I am truly sorry for what you are going through.  It is not easy when one person doesn't get it.  Hoping this helps.  Keep me posted.  Paula