Expert: Paula Damgaard - 6/28/2006

Question
Hi -
My mother has had Alzheimer's for approximately 10 years.  She is in an Alzheimer's home and is with Hospice also.  She is no longer ambulatory, does not speak except rarely a one word "answer", she is incontinent but she will take a sippy cup to drink and will eat when fed.  She has recently stopped urinating again and we have to decide whether or not to keep her on a catheter but don't know what to do - what are the pros and cons?  We don't want her to be in any discomfort from either the catheter or from not being catheterized.  She has a DNR and we will not take any drastic measures such as using a feeding tube but are stuck on this issue.  Also, they mentioned that her urine is very dark.  Is that significant?  We are never sure if it's ok for us to leave town for vacation or if we should stay close by just in case.  I know there's no easy answer but we are hoping for some insight especially on the catheter issue.  The only other new change is that her hands seem to be tightened up most of the time.  Thank you for your help.

Answer
Paula, (nice name)The question you need to ask yourself is: does she have any quality of life?  She will not have any discomfort from not being catheterized and her kidneys will eventually shutdown, which is also not painful.  The fact that her urine is so dark is probably indicative of an infection, also not a painful thing for her, which would eventually go systemic (throughout her body) and she would die peacefully.  

Ask yourself, if you mom could have seen herself ahead 15 years ago would she have chosen to live this way?  This is a hard hard question no doubt.  But using that as a guideline should help you decide what to do.  

When my mother was put into an asssted living, we as a family decided to stop all of her medications and that if she got any type of illness, it was between her and God.  The only thing we would treat was diarrhea (cause that is yucky for the staff) and she could have Tylenol if she needed it for a headache or an ache.  She got a bronchitis and she died peacefully three days later.  She still knew all of us and was still up walking around doing everything for herself.  But we knew as a family that she would have hated us if we had let her progress any further.  

I hope this helps you decide.  I am sorry you have to make this choice.  As for taking a vacation: what would your mother want you to do?  Your mother as you knew her is no longer there.  You can't do anything for her.  You deserve to take a vacation, this disease is too stressful not to take a respite.  The only really great advice I feel I can give you at this point is to get an autopsy when she does die.  This information could mean a great deal to you and your children if and when (hopefully soon!) they come up with answers about this disease.  People who have a confirmed diagnosis from a first degree relative will be eligible for the treatments that are in development before the general public.  You owe to yourself!

Please let me know how it goes and know that I am thinking about you.  Paula