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It feels like a waiting game...
Posted: Friday, January 6, 2012 3:08 PM
Joined: 12/15/2011
Posts: 403

Having gone through this with my dad last year and now mom being in stage 7, I feel as if we are playing a waiting game. It's awful. Mom is not walking, incontinent, doesnt recognize anyone and we can hardly understand anything she says. But, she is eating, which makes me feel good because at least she is enjoying the delicious spanish food she always loved and she can hear people talk to her in spanish all the time. Moving her was a good idea. Even though she is far from me now


We also know that this was the same with dad last year at this exact time. He was eating up a storm. He gained weight and his cheeks were rosy. He was bedbound, incontinent with a foley catheter and the same with the speech, we couldnt understand him. Within 4 months, he went from talking, to mumbling, to not opening his eyes and whispering but no clear words. Then one day, actually I remember the exact day, April 7, 2011, I get the call that dad is choking on the puree because he cannot swallow. He never even swallowed water again until he died April 19, 2011.


So now everytime I call and they tell me how good mom is eating, something inside me tells me not to get my hopes up. I know for a fact that any day it will stop.


I liked it better not knowing.   At least sometimes I had hopes. Now I have no hope at all.

Posted: Friday, January 6, 2012 6:58 PM
Joined: 12/20/2011
Posts: 276

Dear Sadinheart i wish there was something i could say or do to help ease this for you, but i know there isnt my mom is stage 6 and my dad has passed away. But please know i send you strength ,peace, and as much hope as possible, in this hopeless disease. Just know im here and hoping the best 4 you and your mom.
Cheryle Gardiner
Posted: Friday, January 6, 2012 7:00 PM
Joined: 11/30/2011
Posts: 529

Sad, the death of hope is perhaps as hard as the death of our LO. Even when we know there's nothing to be done, and that it's only going in one direction, we still cling to hope. That's part of being human.

Will you be able to visit her soon? Please know that you have done the very best you can, and that you are a good daughter. She would be very proud of you, and thankful that you put her well-being ahead of everything else.

Be kind to yourself. I can't imagine what you are going through, but I do keep you in my prayers.
dj okay
Posted: Friday, January 6, 2012 8:55 PM
Joined: 11/29/2011
Posts: 1840

I can only offer a soft, warm hug ((((((((((((((((((()))))))))))))))))))))))
Posted: Saturday, January 7, 2012 5:41 AM
Joined: 12/2/2011
Posts: 726

So sorry SadinHeart -- I'm thinking of you and sending hugs from afar.
Posted: Saturday, January 7, 2012 8:24 AM
Joined: 12/15/2011
Posts: 48

I just want to offer support and sympathy and repeat what others have said -- you´ve taken good care of your mom, found a place where she´s safe and well-cared for and eating well.  That´s as much as anyone can do.  Try to focus on those good things when you can, even though you´re bound to feel sad.  I can´t imagine how hard it must be to lose both parents to this dreadful disease, one right after the other.  Do take care of yourself.  Here´s another hug from afar (((  )))
Johanna C.
Posted: Saturday, January 7, 2012 10:26 AM
Joined: 12/9/2011
Posts: 10739

Dear Sad In Heart:  My heart goes out to you - I understand.  I lost my own dear mother and I remember the last part of that journey so well.


There are no words to take away the sadness, but do know many of us here have walked or are walking a similar path and we are here for you.


You have done a wonderfully loving job of seeing that your mother's care is the best it can be under the circumstances.  Your love, care and kindness come through your words quite clearly.  You are to be commended for the blessing you have been and continue to be for your parents.


Being on the last of the journey and helping our Loved One to pass across that boundary can be a privilege.  They brought us to life and now we are helping them to leave this one in the most loving way possible.


Do know we will be thinking of you, so do keep us posted on how you are doing and how things are going.


With a soft hug from one daughter to another,


Johanna C.