My husband's oral cancer has come back again (6 times in 20 years) and he is dying. I am losing my mind as he loses his - confusion-delirium-aggression...I have him in a hospice program, but they are not helping much. They just keep giving him more/stronger drugs and only show up once a week for a half hour. I am all alone taking care of him 24/7 and am scared/depressed/angry/exhausted. I need someone to talk to, but no one I know understands. Is anybody out there?

Dear PJ, We are here and will listen to you, hold your hand, talk on the phone - whatever we can do to help you get through this. There are several here right now, including me, who have been in your shoes or are walking this path right now. It is so hard, what you are having to go through. What I can tell you is that most of us have been able to find the strength to meet this head on because we were helping someone we love. I am sorry to hear that your Hospice is not as supportive as you need. Are you TELLING them you need more help? You should not have 24\7 responsibility of a dying husband! And the more medication he is on - the more supervision he will need. Do you have any family who can help? [guess not if you are in this situation] PJ, my husband died at home- it was my promise to him- and I will talk to you about anything you want to talk about. If you will send me a private message with your phone #, I will call you. I know you are exhausted, scared, etc. etc. But the thing now is to get through this. So let us help. Amy

Thanks for answering - I am doing better today because Paul is having a good day - guess this is what they mean by good days/bad days - he is almost his old self. I called and demanded the nurse come out - she came yesterday and we had a long talk. She convinced Paul that he needed to put the Fentenyl patch back on and he has not shown any side effects. Guess this is the good/bad news part - the horrible weekend was not the drugs, so the cancer must have mets to his brain. When he was Dx this time they doctor told him - "don't worry, it's a slow growing cancer". Maybe to him, but it's damn fast to us! No, I have no family and his is still on the East coast so there is no one here to help. Funny, last year we found out he has an aortic aneurysm and I wandered through the days worried it would rupture - now I'm not so sure it would be a bad thing. (Boy, does alot of guilt go with saying that!) The hospice has decided they need to send a home health aide and volunteer once a week from now on, so maybe that will help. They also (finally) mentioned they have a 5 day respite program where he can go in the hospital and I can recover - now I just have to work up my nerve to talk it over with Paul. He will not be happy. Again, thanks for listening. If you don't mind I'd like to write to you occasionally - let me know if it's okay. My phone #=405-701-0199. Jennifer

Jennifer - I am so sorry to hear about your husband. Although my husband is well, I was the primary caregiver for my Mom who had pancreatic cancer. She also wanted to be at home and we had a great HOSPICE program. I know how hard this is for you. There are resources; the forum, the American Cancer Society, your place or worship; neighbors. Sometimes people just do not know how to help and you need to be specific with your requests. Some people may not be comfortable around your husband but could help with errands or household chores. Make sure (if you have not already) that you talk with the social worker / counselor at the hospice; learn about the stages that terminal patients go through. Learn about the grief process. Ask for help. I wish you well and will keep you in my prayers. Tina

Jennifer-I hope you will visit this site often as there are some many wonderful people here who are willing to help. We were also told that the cancer was slow moving but so far that hasn't been the case. I know my husband would balk at the respite care but they have to be told that you need a break. You can't effectively take care of him if you are stressed out. Tell him that this is to help you-not that you are trying to get "rid" of him. This sure has been a long road for you and you deserve and must get some kind of a break.

Sue

Thanks, Sue. I have already gotten helpful responses from 3 people and a phone call that helped. Unfortunately, Paul had a bad day today - a serious 4AM fall ending with a huge lump/abrasion on his forehead that the hospice nurse didn't even mention. (Good huh?)I needed to go buy a shower seat/hand-held shower/new bathmat etc etc etc and had the hospice send a home aid to sit with Paul - he was so angry about this "stranger" bothering him that we had a big fight that required an hour long discussion to resolve. So, how can I bring up respite now? Maybe in a few weeks. Thanks for your care. Jennifer

I know, we have spoken about it a few times, but he is so confused and beligerent it becomes a exhausting prospect to have the long talks necessary. I told him today that I am doing the best I can but this time I cannot fix it - I cannot make him better. We had alot of angry words and alot of good words. Maybe tomorrow will be a good day I hope....Jennifer

Jennifer- there will be good days [hours] and bad days [hours] from now on- and you will be on one continuous roller coaster. So get in the mind set to hang on because that's what you have to do. [Remember that removing yourself to a quiet place and counting to 1000- maybe with a stiff drink in your hand- will help!] Amy

Jennifer-Does your husband have any friends or relatives that could talk to him? Maybe even someone from Hospice? I don't know if this is possible because of his hesitation with other people. Take care of yourself-if you get too stressed out it will take a toll on YOUR health.

Sue

Have never walked in your shoes but I have big shoulders if they are ever needed. With hospice and other organizations, each state seems to be different in how they operate and what they provide, but I am a firm believer of being the noisy wheel until the needs have been met and problems have been resolved. If you need more help than you are getting - make noise and make it often. If one place will not listen talk to another ... Speak with you local hospitals and seek their advice on where to turn for help, ask your local church for help in finding the care hubby needs so you can rest etc ... Also many don't think to contact your insurance company but many times they have an excellent chain of resources they can offer to you ,... may wish to check on it...

Main thing is don't wait until you too are a patient before you get the help you and he need. I have heard it said often that manytimes being the caregiver can be as hard or harder than being the patient. Take care of YOu hon and seek out your friends for support let them know you need them even if they do not understand. You need support and friendship ... you need to laugh ... you need a hug ... but no one will give what you need unless you let them know it is needed... reach out hon.

I wish you the very best through this time and you will be in my thoughts and prayers. Please holler if I can ever do more and feel free to email me anytime if you need to borrow my ear or shoulder ...

Rita