yellowbow Posted December 29, 2006 Share Posted December 29, 2006 Dr. told nurse ( Hospice ) there is nothing they can do for John. John can't stand him self. I'm haveing a hard time to get him on the pot. He went done on me at 3 in the morning the other morning. Couldn't get him up and had to call hospice and they finelly came. I don't know what to do. He doen't want to go to nursing home, wants to get a nurse but don't have money for that. Than he is worried he can't do anything. Doesn't want to live like that. Can't get any help. Social worker here today and she couldn't help me. What are they here for? Didn't remmber to bring paper for some kind of aid but had paper to get money for them, wanting to know are financial assessment. Sorry to vent but trying to get truck reg. in OK and running into road blocks and wondering if keeping truck running will help. It takes alot to run this truck. I needed to be 3 people today. thanks for reading Hope New Year brings better news for everyone! Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 29, 2006 Share Posted December 29, 2006 There may be something in one of these that may be of some help. Tried for as much info as I could find but you may want to check closed knowing more details. Click on the Link to be redirected to the site. 1) http://www.hospicepatients.org/hospic16.html 2) http://www.patientadvocate.org/resources.php 3) http://www.dss.virginia.gov/community/f ... ectory.cgi 4) http://granteefind.hrsa.gov/searchbypro ... 2&index=29 5) http://www.growthhouse.org/search.htm try these links, You may find something further that will help. I understand how overwhelming this seems at this point in time. If I can help further let me know. This is what we do, Help and support of course. Sending prayers for peace and comfort this morning. Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 29, 2006 Share Posted December 29, 2006 So sorry for all this...I hope hospice comes up with a solution which is as good a solution as possible. Quote Link to comment Share on other sites More sharing options...
Ry Posted December 29, 2006 Share Posted December 29, 2006 The hospice should be there to help when he needs it. Do you have a hospital bed yet? They should provide that. If you have another hospice in the area, feel free to fire that one you have and hire another. All hospices are not created equal- some of the ones affiliated with large hospitals are not as good as the smaller non-profit ones. Call the American Cancer Society in your area, they may have volunteers that can help you, or resources to get things going for you. I am so sorry for what you are going through. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted December 29, 2006 Share Posted December 29, 2006 Sorry I don't have any advice to offer but I wanted you to know that you and John are in my prayers. Hang in there. Trish Quote Link to comment Share on other sites More sharing options...
Linda661 Posted December 29, 2006 Share Posted December 29, 2006 As Ry said, not all hospices are created equal and yours should be providing you more support than they are -- they are supposed to be supporting BOTH of you through this. It's true that hospice is not designed to be there 24/7 for caregiving support -- they do depend on the family to do most of the caregiving. However, they have options that might help you such as: teaching you how to effectively move John to the potty and other things for his comfort and so you don't hurt your own self doing it; telling you exactly what to do and who to contact when John "goes down" unexpectedly and you don't know what to do; providing physical/occupational therapy to preserve what John can do for himself as long as possible; providing equipment such as hospital bed, etc. to make caregiving easier and providing more comfort for John; hospice aides and hospice volunteers should be available to assist with bathing, dressing, grooming, etc. at least 2-3 times a week and give you some time off; and, that social worker should be doing more for you on community resource help and financial assistance resources (that's their job). I don't know what your insurance coverage is, but if your insurance is covering hospice care at all, it should be covering the hospice resources I mentioned here -- these are the basics to hospice support (in my area anyway), not extras. Keep us posted, Linda Quote Link to comment Share on other sites More sharing options...
yellowbow Posted December 30, 2006 Author Share Posted December 30, 2006 Thank you all for answering. They have givening us a bed, pottie, wheel chair,etc. But John can't use some of these things. Now he can't really even slide on the potty. Has to be letfed up and helped down. I can no longer help him up. John is 260 lbs,I am 98lbs. They have told me about some comminity service but have'nt heard anything yet. Were are out in the boonies and Don't have much. They don't even have a male nurse or orderly. They call my insurance co. telling about what is going on and they are trying to do something. But John keeps asking for someone to help him walk. But he can't walk and I just don't have the heart to tell him. I already told him he can't get out of bed. Yea that social worker should help me fill this out. Maybe Tuesday she can help me. I 'm trying to run the truck I don't know if they will think I'm working or not. I have a driver on it, he and fuel take just about all the money. The nurse did tell me the Dr. told her the tumer in to large in his brain. All this is one big nightmare. It has been false hope all along. Or did we expect too much.All John wanted was 2 more years. Thank you all again. Maybe tomorrow will bring better news and something will happen for the good. carol Quote Link to comment Share on other sites More sharing options...
Welthy Posted December 30, 2006 Share Posted December 30, 2006 Carol, No suggestions, just big ((((HUGS)))). I will hold you both in my heart and prayers for something good to come soon to help you. Welthy Quote Link to comment Share on other sites More sharing options...
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