Expert: Paula Damgaard - 7/3/2006

Question
I am to the point that I really do not know what to do.  My mother has had AD for at least 15 years. She lived with me for 6 motnhs and then to assisted living for 6 months. The home called me Tuesday sayng she had not eaten for 4 days (her roomate says 6 days)and they took her to the hospital.  No one there called to tell me she was not eating until they took her to the hospital. Her body started to shut down and she had renal failure. Despite the DNR orders they hydrated her and gave her blood (anemia).  Her renal functons are now normal and her anemia has greatly been helped with the blood. She is refusing to eat more that 3-4 bites daily. I would guess she is in late stage 6 of AD. (Seems like she has been in this state for about 3-4 years) She has limited mental acuity however does have times of clairy, leaving people who are only around her for short periods of time to think she is better off mentally than she really is.She rocognizes me, but not most others. She has called me mother, sister and has mentioned my deceased father as "or Daddy." She makes sense about 10% of the time and talks crazy the rest of the time.I know she would not want to be alive like this. The hospital does have her DNR orders and they even asked me for them. What I am questioning is the fact that they seem to have brought her around, and are acting like it is too early not to do all they can.  I would hate to loose mother but what I see of her qualtiy of life is a quality of life that I know she would not want.  I have made it clear I do not want a stommach tube but they are round about making me feel like they should do all of this and that it is not time yet to DNR, even though they have not said that.The DNR mentions a time line stating that if it appears she would not live for 6 months, to not keep her alive by artificial means.  When does one dertermine when this time line begins?  How long can a person exist when only eating a bite of food per meal and less? At first I wanted them to do everything to keep her alive, but now I feel positive that it is not the right thing to do considering her wishes. Does not eating qualify for Hospice? There is a great Hospice 5 minutes from my house and that would seem to me to be the right thing to do however I don't want to jump the gun, nor do I want to see her in a state I know she would not like to be in.  I am very confused about where the DNR orders should start.

Answer
Dear Phyllis, I am not sure what hospital your poor mother was brought to, but they are way out of line.  Unfortunately, one must also have an order for "no Hospitals"  otherwise the home can bring her to hospital.  But the hospital should be listening to you.  

I think you should call Hospice as soon as you finish reading this letter and have your mom placed there as soon as they have a bed.  If you are really looking for quality of life, then Hospice is the best place for both of you now.  Eating has nothing to do with qualifying for Hospice.

I hope this works for you.  I am sorry you are going throught this.  It is an awful time and I feel for you.  Having lost my mother to Alzheimer's I know your pain, and understand the desire to make sure you are doing the right thing.  But believe me you are doing the right thing.  This disease robs people of their dignity.  Please don't prolong hers any longer.  Know I am thinking of you.  Paula