honeybee Posted January 24, 2008 Share Posted January 24, 2008 Hi all. I've been lurking for a long time and thought now was the time to post. My mother was diagnosed with limited small cell in March 2006. It went into remission then came back stronger. Second line treatment didn't work, so doctors tried third. Now it's back and dr. recommended hospice. Mom stays at my house at night and goes home in the morning (she lives across the street). She shouldn't be alone because she has been passing out but she is so stuborn! Can anyone tell me what to expect from hospice or what questions to ask? Any help would be greatly apreciated. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 24, 2008 Share Posted January 24, 2008 I am so sorry to hear this news. WIsh I could do more but I can give you a good link to help a little. I never had Hospice experience but many here have and will be along soon to give you more personal info and thoughts. If you click on the Link this will take you to National hospice and Palliative care home page. It sthe best I can do right now: http://www.nhpco.org/templates/1/homepage.cfm Prayers and Thoughts go out to myou and Mom and the Family at this very difficult time. HAve faith and tell mom you love her every chance you get.. Quote Link to comment Share on other sites More sharing options...
Muriel Posted January 24, 2008 Share Posted January 24, 2008 I haven't had a hospice experience, I can't really help you. I do want you to know that I'm sorry that the disease has progressed so fast. Muriel Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 24, 2008 Share Posted January 24, 2008 Honeybee I have no hospice experience either but wanted to welcome you. I am sorry you are going through this. As Randy said, there are people here who have hospice experience and I am sure they will be happy to offer you some great advice. Warmly Christine Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 25, 2008 Share Posted January 25, 2008 Hey We need saome Hospice advice here and I know that we have it!!!!!! Quote Link to comment Share on other sites More sharing options...
honeybee Posted January 26, 2008 Author Share Posted January 26, 2008 Please...Anyone!!! Quote Link to comment Share on other sites More sharing options...
jennifer s Posted January 26, 2008 Share Posted January 26, 2008 Hi there, I live in victoria, canada and our hopsice is a 2 fold programm, you can either go "into" Hospice located in our local hospital. Or you can get the hospice nurses, counsellors ,etc to follow you at home.They also provide 120 hours a month home help,for nights, peronal care , etc, if you need medical advice, one calls the nurse she comes over and is in contact with the hospice doctor right away. they have a drug bag they can access to help with pain, nausea, and what else. I have been registered for a while, but have not had to use them yet luckily. I hope this helps, although it might be very different in the states I wish you and your family the best Jennifer Quote Link to comment Share on other sites More sharing options...
wendyr Posted January 26, 2008 Share Posted January 26, 2008 Welcome Honeybee and I am truly sorry that your mother's disease has progressed to this point. My mother had squamous nsclc and in January, 1995 she was referred to Hospice by her onc. At that point she was living alone and coping quite well. I was there when they came out to do an initial assessment. They offered medical appliances such as wheelchair, hospital bed, oxygen and narcotics, none of which she needed at the time. They also offered to sign her up for Meals on Wheels which she also did not need. Her principal contact was her nurse who co-ordinated all her care and liased with her doctor. She had a home health aid come in twice weekly to help her bathe, wash her hair and change her bed sheets. She had a mental health counselor who came by every couple of weeks or so and a 'friendly visitor' volunteer who would stop by for a visit or run errands for her. As her condition deteriorated her nurse came by more frequently and ordered the pain meds and monitored their effectiveness. During the last week of her life her nurse came by daily and was always available in that I could call her with questions etc. I was told that in any emergency they were available 24/7 and not to hesitate to call them. I was also told that when she passed I was not to call 911, I was to call them and they would come out and 'pronounce her' My mother passed in May, 1995 and over the course of those months she came to need the oxygen, the wheelchair and the bed all of which were delivered and set up. Not all Hospices are the same as some here will tell you, but my experience with them was wonderful. Some people here have had a less than satisfying initial experience with their first Hospice and so I guess I'm saying that if you don't feel completely comfortable with them, do look around your community and do not hesitate to hire another one. If it ever gets to the point where my husband needs Hospice, and I hope it's not for a very long time, I would have no problem bringing them in, and I would bring them in early in order to get comfortable with all the 'players' Hope this helps answer some of your questions, please feel free to send me a PM or email if I can answer any more questions. God Bless wendyr Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 26, 2008 Share Posted January 26, 2008 I don't have any first-hand experience with hospice, but a quick Google search brought up these two sites (in addition to the one Randy gave you) that may be helpful: http://www.hospicenet.org/index.html http://www.hospicefoundation.org/default.asp You don't say where you're located, but there should be government offices or nonprofit organizations in or near your city which you could call for advice. Your mom's doctor or his staff would be another place to check, also a social worker at the hospital where your mom has received treatment. From what I hear, some hospice programs are wonderful, others not so responsive. Talk to people near your home for specific recommendations. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
sally88 Posted January 26, 2008 Share Posted January 26, 2008 We only had Hospice for 3 weeks for my Mom, and they were great. We could call them at anytime. They had 3 nurses and we met all 3. One of nurse came out at 1am on a sunday and she lived about 50 miles from us and after she took care of Mom (Mom was ok we just panic and called them) she sat with us for a few hours just talking to us. They offer to bath Mom and everything else but we took care of all moms care Mom had great support from all the family and friends. A few weeks after we lost Mom my sister-in-law got me to go to a basketball ball to watch my nephew play and to get my mind off of everything. As soon as I sat down there was Carrie the nurse(her son was on one other team) there to give me a hug and asking about Dad and the rest of the family. Within 3 weeks they were like family friends. They are there to make sure that there is no pain. Mom got to where she would not talk to us, and they explain that was part of the process, that she was pushing us away thinking that it would be easier on us as the end was near, and that not to let it hurt our feeling. We are gald that we got Hospice for Mom. We had the choice of Hospice or a long term place the Doctor told us they could see that Mom had wonderful support and that he could see that we could care for Mom at home but He would not let her suffer and that Hospice would be able to get the pain med. to her at anytime she has out or need more. And each time a Nurse would come for a check up on Mom we had to show how much pain med Mom had. I had to sign a form that I would make sure no one got in to Mom pain Med. I sure other on here will tell you how Hospice for was them. I found the site Dec. 2006 and I was on here reading everything the people here are great.Mom has been gone since Nov 10 and I still come back here checking on everone. The thing I learn about Lung Cancer here let me know what to ask the Doctors about. I just wish I had got Mom to switch dr. sooner. (sorry this is a long post) Quote Link to comment Share on other sites More sharing options...
Ry Posted January 26, 2008 Share Posted January 26, 2008 Honeybee- You've been given some great first hand advice regarding hospice-- let me just add a couple of things. Not all hospices are wonderful-- some are a branch of large hospital systems and you don't get the caring attention as you would from a smaller non-profit hospice. Before you choose a hospice try to think of someone you know that used one in your area and get a recommendation. Try to avoid just picking one or taking the one the hospital recommends. Hospice likes to get involved as soon as possible, even before you may need to them to come in - they need to get prepared by visiting with you and your mom etc. Let us know how it works out and I am so sorry it has become time for hospice to come in. Rochelle Quote Link to comment Share on other sites More sharing options...
honeybee Posted January 26, 2008 Author Share Posted January 26, 2008 Thank you for the advice. Ill let you know how everything turns out! Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted January 26, 2008 Share Posted January 26, 2008 This is the best site that I have found regarding Hospice: www.hospicepatients.org There's alot of good info here. Laura Quote Link to comment Share on other sites More sharing options...
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