Expert: Paula Damgaard - 8/24/2007

Question
My mother is in the final stages of Alzheimer's. She was diagnosed in 2002 with the disease, but has been symptomatic since 1998.  She is in an Azlheimer's assisted living unit. In the past 4 months, she has declined substantially-losing weight, walking ability greatly degraded, incoherent speech, aggression.  She has had recurrent UTI's. Hospice is now involved and they seem to ignore that fact that she is dying.  They run CBC's etc. to see if she is getting enough to eat. They are now putting her on low-dose antibiotics to reduce UTI's.  My mother has a DNR and other specifics for no life extending treatments including antibiotics. Hospice will reply they are trying to minimize suffering.  I don't want my mother to suffer but the antibiotics and other meds they have her on do cause suffering in their own right like geodon and trazodone. I finally told them no when they wanted to refill vitamins. When my mother learned she had the disease she flat out stated-kill me now.  She had seen her sister and friends suffer through all the stages. I'm confused as to what to do. It seems to me hospice is treating her as if she can recover from this disease.  I don't speak up enough because I fear they will think I am uncaring and don't understand the issues.  Can you give me some guidance.  Thank you.

Answer
Ellen, you have the power.  You know your mom's wishes!!  I don't know what kind of Hospice you have there, but I am confused.  I have never heard of a Hospice that does the things you are saying.  Tell them NO that your mom would not want those things.  Tell them that she did not want anything to extend her life and giving her vitamins and antibiotics are things which will extend her life.  Tell them you only want comfort care.  nothing more nothing less.  If they think she is in pain, give her pain relief.  If they think she needs oxygen to make her comfortable, fine, but nothing else!!  

I am sorry you are being put in this situation.  It is totally inhuman for Hospice to do this to you.  Stay strong and know that your mom would be proud of you for doing as she asked.  Good luck and if you need anything else please let me know.  Paula