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Bostonmoe

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Posts: 1
Reply with quote  #1 

I need some help in understanding.  My 83 yr old mom died at my home last week.  She had been diagnosed over 7 years ago with LBD and we had been caring for her in the house.  She hadn't been in the hospital in over 4 years.  On the day she died I noticed she was breathing hard and that her stomach was a little distended.  For an unknown reason I thought she was constipated.  She died in her sleep the next morning -- probably because her heart gave out.  The corner said it was arthrosclerotic cardiovascular disease -- which is probably a BS# cause of death because no autopsy was needed or wanted.  I guess I need to understand why I didn't react sooner and bring her to the hospital and get her put on a ventilator to stabilize her oxygen level.  I can't get past the fact that if I had done this she would have been alive today.  I would appreciate some thoughts from other people who have been dealing with LBT and who understand.  I realize that blame won’t change anything but I still can’t get paste the fact that after all these years of caring for that I didn’t take her to the ER.

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Champion

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Posts: 6
Reply with quote  #2 
Hello , first of all please can I say that I'm very sorry for your loss.
I worked with people with Dementia for many years and as a carer it is an incredibley challenging illness to manage and care for. I'm not going to platitude you and say things like , don't feel guilty because you will and because there's no mileage in telling you not to. What I will say is that you were not meciically qualified to see what might have been wrong in this case. You were however qualified to care for her, love her, keep her at home, enable her to be with you and her family. So, I'm pretty sure you made some amazing choices in that time to ensure her comfort and feeling of wellbeing. You are not going to know that if you had made a different choice if things would have been different, but what did happen is that your mum died peacefully, not on machines and with dignity. Preserving dignity even in death is the gift you gave her.
You have done an amazing and wonderful job in caring for your mum and she would be proud of you. Best wishes. Heather
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Gina B

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Posts: 1
Reply with quote  #3 
I would like to commend you for being able to care for your mom that many years in your home. You were able to care for her so she did not have to go into a nursing home where her health would decline faster. That is what is happening to my mom now. No one knows that much about Lewy Body Dementia and how to deal with the terrible decease. They have very bad behavior and the doctors just drug them so the nurses do not have to deal with it. It takes a lot out of the family being frustrated that the doctors and nurses do not know how to deal with it.

What Heather says is how I feel. You were the one that was qualified to take care of your mom because you gave her a good life by living at home with loved ones and not in a nursing home. People with LBD do not live that long from what I learned in my support group. The time your mom had left, you gave her so much love by caring for her. You should not feel any guilt. Your mom went peacefully and she did not have to struggle with her decease.

Take care,

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Gina B
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