I left a message on this site Monday (I believe). One thing has been bothering me since my mother passed away Monday. A few weeks ago, I posted a question about how I could tell if she was in pain and should I contact hospice. (She constantly said she did not feel good--she felt terrible.) When I visited my mom on Sunday, she was agitated and grinding her teeth and asking me to help her and wanting to go home. I am repeating myself from my earlier post, but I have another question. I asked the nurse how she was doing, and he told me she had not been eating and was only being spoon fed liquids. This was a change, and I asked for hospice immediately. On Monday, the NH facility called me and said hospice was being set up. As soon as I hung up the phone, my mother's nurse called me and said to come immediately that she was having difficulty breathing and turning colors.
When I arrived just minutes later, she was laying in her bed with her mouth open and very dark circles around her eyes. Her mouth was kind of moving slightly like a fish out of water dying -- the way their mouths move. She was staring out into space, unresponsive. The nurse was waiting next to the bed and checking her pulse and heart rate continuously. She had a DNR order, but I just feel so bad that I wasn't there. One of the aids had walked in and found her like that around 2:00 and she died at 2:15. I keep wondering how long she was like that alone and was she aware and did she suffer. I asked the nurse what had gone wrong. Was it her heart, was it her lungs, was it her brain and the Alzheimer's? They said there was no way to know. I cannot get this out of my mind that I or someone should have realized this was happening and death was so close and we could have had her on morphine like my dad was on when he died. I told my brother she did not suffer, but I don't know. This is just eating me up inside.

Hi Julia,
First let me tell you how sorry I am for your Mom's death. I lost my Mom in January from AD and know exactly how you feel. My post is under the Caregivers Forum for May 2, 2008, the title is My Story. If you read it you will see that I also have a great deal of guilt over my Mom. I don't believe your Mom was in any pain. And I know my Mom would not want me to feel guilty about any of the choices I made. It has taken me several month's to get to this point and let me tell you there are still days..... But I bet your Mom would not want you to feel badly either. We both did the best we could and I know for a fact that if that ever happens to me,I would not want my daughter's to feel guilty about anything. My Mom knew she was loved and so did yours. They are now at peace and free from this awful disease.
I hold on to the good days and times we shared. I try to not go to the moments of her death, but to remember all the wonderful ones that where her life. Every time I think of the day she passed, I try to remember something fun we did. My dear 86 year old Dad had a hard time not remembering the way she looked when she died, but we found a nice picture of her in a happier time and it does help.He keeps it by his bed. I miss her terribly and always will but I was blessed to have her.
I didn't tell my brother any details about my Mom's death either, he would have a hard time with it.
Blessings.
Marcia

Marcia,
Thank you for replying. I went back to May 2, 2008 and read your story. I'm sorry also for the loss of your mother. Thank you for taking the time to help ease this burden.
Take care of yourself!!
Julia

Dear Julia, so very sorry for your loss. I'm sorry the nurse didn't give you any answers. I don't have any either, but I do understand how your thoughts are making you feel like they are eating you up inside.
My mom was on life support for 3 horrible weeks. The doctors kept asking me daily if I wanted to sign a DNR. They said it would be the "kind thing" to do for my mom. I just couldn't do it at first. I was selfish and just wanted my mommy to stay with me.
However, after 3 weeks at the hospital and watching her in such a horrible condition, I stopped thinking about myself and signed the DNR. That very day she died. Coincidence? Not sure. I shared all this because I was being eaten up by guilt. I thought that by signing the DNR I gave the doctors permission to kill her. Extreme? Yes. Did they do something? Don't know.

I realized that it didn't matter if I had the details...it wouldn't bring my mom back.
There are some things we will never know for sure and perhaps we are better off not knowing. This may not be how you feel, but I know those thoughts will only cause you more pain than you already have.
In your previous post you said the nurse saw no signs that your mom was in pain nor struggling in any way. You mention that when you got there she was not responsive and staring into space and that she was moving her mouth. What you saw was her body, but perhaps her spirit was already in transition and she was talking and greeting deceased loved ones. Just a thought.
I hope you find some comfort knowing that she went to the home she was so desiring.
God Bless.

Hi Julia,
Just wanted to write a quick note. The agitation that you describe and the breathing at the end are all part of the dying process. Even though I was there, I couldn't help my Mom at that point. We only had hospice for a day, but they gave us a sheet on the signs of dying. My Mom too experience those, it was hard to see her that way. I agree with Steph, her soul was already leaving her body and she was on her way to a better place.
Blessings,
Marcia

Thanks so much to both of you. I talk to my husband about this, but his parents died suddenly, and he does not understand. Listening to your stories gives me another perspective from someone who has been in my shoes and knows the feelings I am struggling wtih. Thank you so much.

The first memorial service for my mom will be this evening in Tennessee, and I believe she is going to approve. We will have a graveside servvice in Indiana Saturday morning which I hope will be just as simple and a celebration of who she was.

Again, thanks so much. It helped me so much to read your posts!!!

Julia