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Mom died August 10th
Posted: Wednesday, September 6, 2017 12:40 PM
Joined: 9/6/2017
Posts: 2

I really don't know what to say.  The emotions that I feel from watching my mom pass from this disease was horrible.  I had to make decisions that I'm unsure of.  Did I cause this by making the decision not to put her on a feeding tube.  By telling them to put her on comfort care.  They said that she wasn't eating good, when she did get food in her mouth she would just hold it there. Did i do this to her?  I can't understand how a perfectly healthy body dies.  That was my struggle. I miss her so much.  She had Alzheimer's for 16 years.  Everybody told me it was time to let her go.
Posted: Wednesday, September 6, 2017 2:56 PM
Joined: 9/2/2015
Posts: 103

I'm very sorry for your loss.  You did not cause this.  Alzheimer's did this.  Her body was healthy but her brain was not.  You did not do anything wrong.  You took care of your mom.  Just because modern medicine can prolong life with things like feeding tubes that doesn't mean that it is the right thing to do. 

My mother also had dementia (probably Alzheimer's) and was very physically fit in general.  But she was extremely resistant to medical intervention.  She would not take oral medication.  She did not want to see the doctor.  She did not want to be in a hospital (I had to take her to the ER a month or so before her death)...she tried to pull out the iv, she would not stay in the bed.  She too stopped eating and drinking. It was just her time and she went on her terms.  She would have hated a feeding tube or to be tied to a bed or to live the remaining part of her life from a wheel chair or bed.

Posted: Wednesday, September 6, 2017 8:00 PM
Joined: 6/8/2017
Posts: 105

My mom passed away on Aug. 12th. My mom was in the hospital and put on hospice care and even though I know there was nothing I could do to help her, I still was looking back and trying to figure out what I could have done differently.   I have been talking with a hospice counselor to help me get through all of this. The disease is terrible.  

My thoughts are with you.  

Posted: Wednesday, September 6, 2017 11:24 PM
Joined: 5/2/2014
Posts: 761

I am so sorry for the loss of your mom. Like tangocastillo stated, you did not do this to her, the disease did this. It is very normal to second guess our decisions but please don't. As hard as it is to accept, you did the right thing. I truly believe that when the body starts to shut down because the brain is no longer telling it what to do, then we need to let nature take it's course. When my mother could no longer stand, I brought in hospice. My mom too quit eating and drinking and it was her way of going on her own terms. She did not want any extreme medical procedures done to sustain her life. These were her wishes long ago and I respected them. It wasn't easy as the selfish part of me wanted her to live but it really isn't living when your quality of life is gone. I pray that you can find some peace during this difficult time and try to take care of yourself. Just know that your mom knows you loved her and she is smiling down on you. Cherish the precious memories. Sending soft hugs,
Posted: Thursday, September 7, 2017 11:08 AM
Joined: 12/4/2011
Posts: 18481

soft hugs to both of you from me too.

The question "what could I have done" seems to haunt us for a long time but regarding the feeding tube? I have heard many stories about complications that I would only say yes to a short period of time for recovery. Something like that. 

Posted: Thursday, September 7, 2017 9:10 PM
Joined: 5/30/2014
Posts: 555

Lifelong96 - Let me PLEASE reassure you that you did the absolute right thing by NOT placing your mom on a feeding tube!  My dad authorized a feeding tube for my Down Syndrome sister, 10 years ago, before she developed Alzheimer's symptoms & while she was under my care in my home.  She passed away in May, 10 years & 4 days after getting her feeding tube.  She had more pain & suffering from that feeding tube than anything else.  I learned way more about feeding tubes than I'd ever wanted to learn.  The infections they can cause are absolutely horrible.  As well, they really make it high risk for aspiration pneumonia, which also is very painful.  I've become a strong advocate AGAINST feeding tube, unless the doctor can state with absolute certainty it is to be only for a short period of time.  I just saw my sister suffer way too much from that tube.  My prayers are with you as grieve the loss of your mother.  Just know that as you made each decision for her with love in your heart, they were the best decisions you could make.  May God give you peace & comfort today - and in the days to come.
Posted: Wednesday, December 20, 2017 2:03 PM
Joined: 9/6/2017
Posts: 2

Thank you all so much for responding to my post.  I am still struggling with so many things.  I think most of all the holidays are coming up and i won't have to go and shop for mama this Christmas.  I feel so lost.  I loss the man i was seeing for 10 years in May and then mama in August.  i am overwhelmed with grief.  to watch my mom die that way was not easy.  i still can't get those images out of my head.