Expert: Paula Damgaard - 4/23/2010

Question
My dad has been certified under the mental health act and in care now for over a year. I believe he has DLB although the doctors won't confirm this. In a year my dad has gone from being confused and thinking he was in prison to being aggressive, abusive to nurses, swallowing problems (he nearly died). He is now unable to carry out any toileting without assistance and is double incontinent. I believe he is at stage 6, he no longer recognises any of his family and mutters words that don't make any real sense, he still has halucinations, speaks to invisible people. I love my dad dearly but it tears me apart to see him like this. I only visit twice a week now, always hoping that today he will recognise me but it doesn't happen. He can't walk now without help, is very stiff and today I had to feed him as he couldn't get the spoon to his mouth. My dad was a big strong man, now at the age of 78 I have to hold his hands while I feed him to stop him putting his fingers in his mouth. It is like feeding my children when they were babies. My dad is constantly getting urine infections, probaly every month or so, when will it end, when will he and his family have peace?

Answer
Hi Sandy,

First, tho you may believe your dad has DLB, and he may well, the doctors have no way of confirming this until autopsy.  There is no other way to give you a 100% diagnosis, so if I were you I would make sure that an autopsy was done so that you as a family can know what he had.  In the future this may be a VERY important piece of information for you.  

Second, I am sorry you are having to go through this. I know it is not fun.  You ask when it will be over, when the infections he has outrun the antibiotics you give him to cure them. Everytime you treat an infection, you are giving him quantity of life.  He has no more quality.  Pneumonias and urinary tract infections used to be the "old people's friend" because they would get one of these infections and there weren't the antibiotics we have now, so the infection would just let them die.  Their immune systems are weak now and they can't fight them off.  Dying from an infection is a quiet peaceful way to go.  

If he is not under the care of Hospice I would suggest you call them today to see about having they take over his care.  They will make sure that he received only comfort care and is allowed to go peacefully.  It will be the nicest thing you can do for him.

I hope this helps.  I am sorry I know this is hard.  Having done this with my mom, mother in law, father in law and now my aunt it is very hard.  But allowing them to go peacefully is such a gift.  

Take care Paula