Expert: Mary Gordon - 12/19/2009

Question
Hi, first of all thank you for taking the time to answer my question.  6 years ago my mother was diagnosed with Lewey Body Disease a form of Dementia.  She deteriorated rapidly loosing her ability to communicate, walk and caring for herself.  Thanks to my father and family caring we had been able to keep her at home on a daily routine.  My much patience and love we were able to feed her with little to no problem.  Lately, all her food is in the form of puree, but she was eating very well.  Few days ago, it has been a battle to feed her, she refuses to open her mouth and today we noticed that one of her eyes is not quite open and she sleeps most of the time.  She falls asleep during feeding time and it is becoming very difficult to wake her up.  I don't think my father would like to tube feed her but when do we decide it is enough.  I never thought I would pray to God to take my Mom with him.  Are all her symptoms pointing to the end?  Please him me some advise.
God Bless  

Answer
Hi Missy, I'm resending this because I looked at the answer and the ends of the lines are all chopped off, so I wasn't sure if you were able to read it all. The site must be having a problem. I've never seen this happen before. So, I'll reformat the lines and try again.

First step should be to find out if there has been something going on medically. She may have had a stroke.
Even a minor infection can really impact her alertness at this stage.

Here are a couple of good articles that discuss the issues around feeding tubes and dementia patients that I think you should read.

http://www.aafp.org/afp/2002/0415/p1605.html

http://www.ualberta.ca/~loewen/Medicine/GIM%20Residents%20Core%20Reading/ANOREXI...
%20dementia%20editorial.pdf

http://comfortcarechoices.com/articles/Feeding_Tubes.pdf

I think your heart is telling you it is time to give serious consideration for hospice - in most places, hospice services are available to
keep your mom at home with your father if that is the family desire. There are also free standing hospices that your mother will
likely also qualify for, if the thought of dealing with the final months at home is too difficult for all of you.  Hospice care can be
wonderfully kind and supportive - not just for your mother, but for the whole family. I can hear your distress over the situation -
I know you won't regret calling them in - your situation is exactly what they do best at - to help the whole family.  Many families
wait until it's very late, and don't get the full benefit of the supports and services the programs offer.

Your father should speak to her doctor right away about hospice - quite often, something can be arranged within a matter of days,
even if it is the holiday season.  Opting for hospice means the goal is to keep her as comfortable and content, as loved and cared
for with the best quality of life and the most dignity. They will also help look after your father and make the journey less stressful.
I know this is very hard on all of you.

Here are some links to information about hospice care.

http://www.nhpco.org/templates/1/homepage.cfm

http://www.gilbertguide.com/articles/hospice-palliative-care-wheres-the-common-g...

http://www.americanhospice.org/index.php?option=com_content&task=view&id=16&Item...

I'm thinking of you. Don't struggle with this alone when good supports are available. She must have been a wonderful woman to
be so cherished and loved.

Mary