Expert: Paula Damgaard - 1/27/2008

Question
Hello,  I have been wanting someone to talk to for years.  I know all peple are not the same but Mom is now 74 she has been diagnoised since 02.  She went fast, the meds did nothing at all.  Bottom line, she has been bed fast since Aug 05.  That is when she stopped walking, talking, and begin wearing diapers and a cather.  for a short time she seemed to know us.  Now she lays and stares, never  eye contact and does not even turn toward anyones voice.  I know she has given up, and I do not blame her, she is well feed and watered and never has been ill except for a couple of bladder infections, and the back of her head is literally sitting on the top of her shoulders.  We have done everything to get that down.  sometimes it is hard to give her food and water, you just have to force it down to a safe level.  
she never moves, except for her hands and arms.  she wears false teeth and because she has lost so much weight they do not fit and she clicks them all the time.  My dad is 75 and has help caring for her in the home.  I am the only daughter and I help when I can.  Dad seems to take pride in keeping her going.  I just remember Mom saying to me why do I have to be this way, why can't I just die.  We had hospice for over a year, when they started, they said she would ot last three months, they finally bailed out.  that was over a year and a half ago.  I have begun to think Mom is going to outlive all of us.  I just do not get the staring.  It is just blank, some thing she cannot see.  I do not know she just looks empty,  sometimes she will say yes to my dad of yep.  but mostly what she says is not understandable.  I know you may not have an answer for me, but I wanted to ask you anyway.  I am always searching for someones loved one that does about the same things, but have never been able to find anything about some of my concerns.  By the way she has only had one bedsore.  that was when we was getting her out of bed and in to a lift chair.  that lift chair was awful on her.  it was right on her tail bone.  got her over that and has never had another one.  worst problem we have is with her skin tearing.  sure gets some nasty tears.  I wish we knew how to wash her hair without getting her into the shower, the health care bath woman nearly dropped her and made a nasty bump on her head.  The only time she has been in the hospital is when she forgot how to pee, that was when the cather was placed and has been in since.  hope you write back.  I need some one to talk too.  donna

Answer
Donna, I am sorry it took so long for me to receive this, not sure where it went, but please feel free to talk away.  I am not sure from your letter what exactly your question is?  Have I seen someone last this long: yes.  Is what you are going through "normal": yes.  Her skin is tearing because her ability to "heal" is being lost.  And because she isn't taking in as much as she should be (by no fault of your's or your dad's) she isn't able to produce what she needs.  Her brain operates her entire body and the disease is destroying it.  

My best advice to all of you is to make sure she has an autopsy when she dies so you can have a definitive diagnosis.  It will help you later.  Please feel free to write again.  Paula