tag:blogger.com,1999:blog-1074151567956258470.post3738252995275429089..comments2023-09-28T03:00:38.999-07:00Comments on The Lewy Body Rollercoaster: Showtime and HospiceThe Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1074151567956258470.post-77396650494883900972016-07-11T08:09:00.774-07:002016-07-11T08:09:00.774-07:00Thank you to the Whitworths of Arizona. To answer...Thank you to the Whitworths of Arizona. To answer your question. No there are no hospices that will service my area that has the needed knowledge to care for love one's with Lewy Bodies or understand the issues. They categorize all dementia's into one box and that box is mostly Alzheimer's; and they treat as if my mom has Alzheimer's -- which is contraindicated. I am a nurse and I do the research, I give the nurses and administers the literature, and it is obvious that they do not read it. I have taken care of my Mother for 6 years with this diagnosis. I walk this path alone. Thanks for your kind feedback.Susanhttps://www.blogger.com/profile/06450248821150157975noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-1773605630873605122016-07-10T18:25:00.152-07:002016-07-10T18:25:00.152-07:00So sorry, Susan. What you say about hospice people...So sorry, Susan. What you say about hospice people knowing about Lewy body disorders is too often true. Is this the only hospice service in your area? We have many in our area and so caregivers can usually find one that actually does know something about LB. I hope things work out better for you.The Whitworths of Arizonahttps://www.blogger.com/profile/04887677292107869890noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-33225114703228435852016-07-10T16:35:10.381-07:002016-07-10T16:35:10.381-07:00My Mom is in hospice, and it is NOT a good experie...My Mom is in hospice, and it is NOT a good experience. They give very little support to caregivers. They pay for the medications, but that is about it. Mom has been on hospice for 3 years. She is steadily declining. She has had several different nurses of which NO ONE knew a thing about Lewy Bodies. I have a nurse now, who is PRN and she only has Mom. Support none. There is no hospice in my area that works with Lewy Bodies. They say they do, but when you interview them, they are clueless. Not trying to down your information, but NOT all hospices offer caregivers support.Susanhttps://www.blogger.com/profile/06450248821150157975noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-6874657444953502332016-07-09T17:27:22.387-07:002016-07-09T17:27:22.387-07:00This is a genius post (as are most). It is difficu...This is a genius post (as are most). It is difficult to make that decision, so using this as a "cooling off" period and trial, with the expectation it will be temporary only is sage. You folks are doing great, great things!Lewy.ca Timothy Hudsonhttp://www.lewy.canoreply@blogger.com