Guest guest Posted June 29, 2011 Report Share Posted June 29, 2011 Hi ,  This is probably one of the worst times for families in dealing with this disease. I'm a hospice nurse. Every patient is different, but I have seen patients last for 2-3 weeks with no food or water. I would ask for the sponge swabs for her mouth. You can place them in tea, water, kool aid (for taste), but this helps. Even though she won't drink, it will help keep her mouth from being so dry. For the most part, Until she has the death rattle, it will be a while. As far as 'reserving her fluids,' I'm not quite sure what the nurse you spoke with meant by that. She isn't having any output because she isn't having any intake. Praying for her and you during this time.  , daughter of Ralph,82 y/o with LBD x 2 years that I know of, possibly 5 or 6. To: lbdcaregivers Sent: Wednesday, June 29, 2011 8:57 AM Subject: My Sister - Update  Since probably 6/11, my sister hasn't hardly eaten or drank anything. Her kidneys did not work at all this past Sunday. The Hospice nurses said her body is reserving it since she isn't drinking anything or eating. It takes two or three people to get her to the bathroom and by the time we get her to the bathroom she will become unresponsive. Once she lays back down she will come back around. She yells out in pain when we have to move her, even though she is on the Duragesic patch. Her bottom looks awful. The Hospic nurses says her vitals are good. I've asked them if they think we are nearing the end, and they don't think so, but how much longer can she go without eating or drinking. She will occasionally drink a little, but not much and she becomes very agitated when we try to get her to eat or drink. They said they have only seen one other patient that was diagnosed with LBD. He was a man and became very aggressive. She hasn't but she is so weak I don't think she could raise a hand, although she does get verbally aggressive. Can anyone give me some input. I believe LBD is so unknown even to the medical profession that they really don't know what to expect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2011 Report Share Posted June 29, 2011 , I think it is likely that your sister's body is shutting down and is in the middle of a very natural dying process. I don't believe that any knowledge of LBD is necessary for hospice to do its job in making sure that your sister's passing is painfree and peaceful, and that the family is supported. You may benefit from this youtube video I posted about here: http://forum.psp.org/viewtopic.php?p=47297# It addresses head-on the issue of " starving to death. " If you intend to donate your sister's brain such that the diagnosis can be confirmed and the tissue can be used for medical research, I encourage you to make those arrangements now. Less than 35% of the time does a clinical LBD diagnosis get confirmed upon brain autopsy; less than 25% of the time if it's LBD mixed with AD. I volunteer my services to help families make these arrangements. They should be made as much in advance as possible. Best wishes, Robin > > > Since probably 6/11, my sister hasn't hardly eaten or drank anything. Her kidneys did not work at all this past Sunday. The Hospice nurses said her body is reserving it since she isn't drinking anything or eating. It takes two or three people to get her to the bathroom and by the time we get her to the bathroom she will become unresponsive. Once she lays back down she will come back around. She yells out in pain when we have to move her, even though she is on the Duragesic patch. Her bottom looks awful. The Hospic nurses says her vitals are good. > > I've asked them if they think we are nearing the end, and they don't think so, but how much longer can she go without eating or drinking. She will occasionally drink a little, but not much and she becomes very agitated when we try to get her to eat or drink. > > They said they have only seen one other patient that was diagnosed with LBD. He was a man and became very aggressive. She hasn't but she is so weak I don't think she could raise a hand, although she does get verbally aggressive. > > Can anyone give me some input. I believe LBD is so unknown even to the medical profession that they really don't know what to expect. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2011 Report Share Posted June 29, 2011 , thank you. Today at lunch she said she was hungry and did eat a little tomato soup and drank a little bit of a chocolate shake. So that was encouraging My Sister - Update Since probably 6/11, my sister hasn't hardly eaten or drank anything. Her kidneys did not work at all this past Sunday. The Hospice nurses said her body is reserving it since she isn't drinking anything or eating. It takes two or three people to get her to the bathroom and by the time we get her to the bathroom she will become unresponsive. Once she lays back down she will come back around. She yells out in pain when we have to move her, even though she is on the Duragesic patch. Her bottom looks awful. The Hospic nurses says her vitals are good. I've asked them if they think we are nearing the end, and they don't think so, but how much longer can she go without eating or drinking. She will occasionally drink a little, but not much and she becomes very agitated when we try to get her to eat or drink. They said they have only seen one other patient that was diagnosed with LBD. He was a man and became very aggressive. She hasn't but she is so weak I don't think she could raise a hand, although she does get verbally aggressive. Can anyone give me some input. I believe LBD is so unknown even to the medical profession that they really don't know what to expect. Quote Link to comment Share on other sites More sharing options...
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