Perhaps I can speak to this subject from recent personal experience.
My husband died peacefully at home, under hospice care, on March 3rd of this year. He suffered terribly from symptoms that resembled Parkinson’s, but had many autonomic nervous system failure symptoms as well, that conventional Sinemet, and all the other wonder drugs did little or nothing to alleviate.
He stopped eating and drinking, and with the help of an experienced nurse here in our assisted living building, I worked up my courage to ask for hospice. It was difficult to convince the three doctors involved in his care to sign the papers, because (in my opinion) they refused to accept that the standard meds prescribed were not working, or were causing horrible side effects.
Taking a Parkinson’s patient to the emergency room is asking for a disaster. I learned that the hard way. He begged me not to be taken back to the emergency room, and asked that he never have to go into rehab again, after the the hospital stay, when he never got his meds on time, and was treated by whoever was on-call and knew nothing about how complicated his case was, because of the autonomic nervous system features.
Reading a chart for 3 minutes is not enough - and floor nurses do not understand the importance of timing the meds to the minute, and making sure that they are co-ordinated around the meals.
Anyway, when the last crisis happened, we didn’t take him to the hospital. He didn’t want to eat or drink, and was in severe muscular pain. He was given a very LOW dose of morphine, just enough to take the edge off his pain, and as much liquid as we could get him to drink, and we swabbed his mouth constantly.
He died peacefully, with me holding his hand, and no longer in pain. Hospice was wonderful to us both, and if I get some crappy disease, this is the way I want to go.
I miss him so much. I miss his voice, his mind, his wisdom, and his scent. Words cannot tell the depth of my grief at losing my lover, my best friend, and the father of my children, who was always there for us.
But, I respect the choices others make. There are no simple solutions to the illnesses that eventually end our lives, and we should be able to choose according to our preferences.
At the end of my husband’s life, morphine (again an extremely low dose) was the only thing that helped him with the unremitting pain. Thank God for it, for he was free of the torture.
Thank you for sharing your story and experience with us.
I’m sorry for your recent loss. Your experience is very similar to ours when we lost my MIL 2 years ago. She had Parkinson’s. Her doctor suggested Hospice about 5 months before she passed, not to shorten her life, but because there were additional benefits she received that helped her live longer. The Hospice nurses did daily massages, helped feed her when she could no longer lift a spoon, got her an inflatable air mattress that was on a timer, which inflated different sections in sequence to stop bed sores from forming. She did well for a few months, but at the end, we had been warned she would no longer be able to swallow, and that’s what happened. Her DNR read no feeding tubes, no feeding through IV, so we knew it was time. The nurses showed us how to use the mouth swabs, but we couldn’t even use ice chips for fear she would aspirate and start choking, not even able to cough. They gave her minimal amounts of morphine, as she was unable to swallow, just what little could be dissolved under the tongue, nothing by IV or injection. She was with us another 5 days, before she passed. She slept a lot, but when she was awake, her eyes were clear, and she’d listen to Hubby and me talk to her. Not once did I hear anyone from Hospice suggest she should be given more morphine or other meds to speed the process up.
It saddens me that others have had more traumatic experiences, especially during such trying times in their lives.