Elizabeth,
Welcome to the LBDA forums I am so sorry for your need, the story you tell I have heard more times than I can count over the years and it is sad. This illness can stay hidden for a long time and all's it could take is a medication or some trama to the body and that's it, it comes out I have actually had people ask me if that was the cause of the illness and of course it isn't but it almost seems like it.

I hope you can find some comfort here with our members because they know what it is like to walk a mile in your shoes. Visit us often and I think you will always find a listening ear !

Mary,
As to your comment about EMS yes they will perform CPR unless you have a special request like DNR order and that would have to be signed by a doctor to. Most people who do not want CPR just won't call for help which I think has to be hard to do. My husband had a DNR order and even in thoses last days I would have bargained with the Devil to save him, its hard and a call I think most of us human beings would find difficult to do.

Also be aware that, at least in some states, you have to have the correct copy of the DNR, and even then, the EMT's may feel obligated to do something. I was the family member with my grandmother's cousin when she died at 101. She was completely lucid and had made her wishes very clear, and we had all the correct paperwork. But because the death was at "home" (her assisted living apartment), FL law required that EMT's be called to certify her. Then the EMT's were insistent that they should revive her because they were getting a heartbeat signal. (She had been dead for maybe half an hour at this point.) Very tense discussion ensued, with me finally convincing them that they were picking up the pacemaker, not an actual heartbeat. They had to see the pacemaker documentation before they would back off. It was already very stressful, and I can only imagine how much worse it would have been for a child or spouse, with a LO whose wishes and situation were less clear-cut.

It's very hard, though, and my heart goes out to you. Both my parents are 96 and now in frail health, and I'm the kid-on-the-spot trying to follow their wishes and manage their care, or abstention from care, as they have asked.

Laurel

Thank you all for the input. It is so nice to be able to speak about this to people that understand. Most people have never heard of LBD.

I believe there is a difference between do not resusitate, and do not treat. However the line can be a little vague at times. My family and I have also decided no more hospitals. I also believe we as care givers need to be non judgemental about our decisions retrospectfully. We are humans trying to give best care under very difficult circumstances.