Joelswife Posted January 28, 2006 Share Posted January 28, 2006 Joel told me today that he doesn't feel he can be left alone. He can barely walk, he didn't eat, he has a draining hole in his neck from tumor, pressure sores on his butt and foot, on a liquid only diet, now has to use Depends and has extreme extreme fatigue. We are due for results of CT on Wed but I have a bad bad feeling. I believe our onc was trying to prepare us also. Joel is absolutely miserable and I can't remember the last time he smiled. Today is the first time also he has said no matter what, no more chemo. Should I take family leave? Is this temporary? Is this the end? Do we call hospice? Even though I haven't posted lately, I read the posts every day and have frankly had to double up on the prozac. So far we've been taking it a day at a time but it feels like we need to make some decisions. Thanks for listening. Pam Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 28, 2006 Share Posted January 28, 2006 Pam - I am PMing you as well. There is no harm in calling hospice...it doesn't change anything except that you will add people to your support team and have access to so many things to make Joel and you more comfortable (from equipment to medication)-- I would say "YES" to calling them. Making the call doesn't mean it is all over....if you are stopping aggressive treatment (i.e. chemo) -- get the hospice help. Is it the end? Only God know that...but I can tell you our hospice care was fantastic. We called them as soon as my mom stopped chemo...she had a tough time the day we signed up, and then was so relieved. I am so sorry that Joel is having such a tough time, you all are in my prayers. I know how difficult this decision is as we made it about a month ago. Love always, Holly Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted January 28, 2006 Share Posted January 28, 2006 Wow, I just read Joel's profile and this man has been through alot, as you know I am sure. I have no words of advice about hospice. You are such a loving and supportive wife, kudos to you both.. Quote Link to comment Share on other sites More sharing options...
Ry Posted January 28, 2006 Share Posted January 28, 2006 Your doctor should tell you at the Wed. appointment if its time for hospice. If Joel doesn't want any more treatment, it most likely is time. If you decide not to start hospice, at least get home health care to help with his pressure sores and care. Quote Link to comment Share on other sites More sharing options...
kamataca Posted January 28, 2006 Share Posted January 28, 2006 I don't have any answers for you, but I sure am sorry that you have to walk this road right now. Just know that you aren't alone. Please keep us posted. You are in my prayers! Kelly Quote Link to comment Share on other sites More sharing options...
Don M Posted January 28, 2006 Share Posted January 28, 2006 You and Joel have my prayers as you go through this difficult part of the journey. I think it is a good idea to talk to the doctor about it as Mrs Ry suggested. Don M Quote Link to comment Share on other sites More sharing options...
paddy Posted January 28, 2006 Share Posted January 28, 2006 Pam, All I can say is this, listen to Joel and hear what he is saying. If you have a "gut feeling" as you say, act upon on it. My heart goes out to you, and you and Joel will be in my thoughts and prayers. Paddy Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted January 28, 2006 Share Posted January 28, 2006 Hi Pam, I agree with Holly, it cant hurt to call in Hospice. If he improves, yu can always cancel them and you will have help in the meantime and hopefully they will make Joel more comfortable....\ Janet Quote Link to comment Share on other sites More sharing options...
dchurchi Posted January 29, 2006 Share Posted January 29, 2006 Pam, Sorry about the way Joel is feeling I would call hospice, especially since Joel appears to be reseptive to having help. This would also take some of the burden off you and you can just be with him and love him. As for family leave, maybe it is best to take it now so you can spend as much time with Joel as possible. What does you "heart" tell you to do? My prayers are with you. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted January 29, 2006 Share Posted January 29, 2006 Hi Pam, Please call it would help you so much too. They are wonderful to talk too and such a comfort to have around. I am sorry that Joel is reclining. I wish I could do something to help. Please know that we are here for you and you are never alone. Prayers sent out to Joel for healing. Maryanne Quote Link to comment Share on other sites More sharing options...
Linda661 Posted January 30, 2006 Share Posted January 30, 2006 While I am really new here, I do have some very limited experience with hospice in dealing with my dad. First of all, calling hospice doesn't mean it's the end as some have already said -- in my experience, hospice does have the advantage of being able to diagnose & dispense meds/extra support needs immediately as they tend to Joel's condition on their routine visits. That helped us: personally going through the doctor hoops on an out-patient basis is really, really tough....particulary if things look day-to-day on Joel's support needs right now. They can be cancelled at any time as well. Go with your instincts on the family leave issue. I really think we all develop a 6th sense of some sort with our family members going through this -- at least I have noticed some definite markers of things my parents have said in both of their circumstances that I just somehow know what I should pursue.....I haven't been wrong yet and neither will you. Hope this helps, Linda Quote Link to comment Share on other sites More sharing options...
Ann Posted January 30, 2006 Share Posted January 30, 2006 ((((((((((Pam & Joel)))))))))) So sorry to hear that Joel is going through a rough time right now. Pam, this is such a hard call to make. If Joel does not want any more treatment, then I definitely would call Hospice. This doesn't mean that he can't go back on treatment if he begins to feel better and he and his oncologist want to resume chemo. I know that the word Hospice can be very frightening for us , as we usually associate it with the end and nothing more that can be done. That way of thinking has changed. The Hospice group I used for Dennis was absolutely wonderful! They were as much help to me as they were for Dennis. It meant so much to have someone there that could explain to me what was happening and control Dennis's pain. If you don't want to wait until Wednesday, call your doctor and fill him in. My doctor even made the call to Hospice for me. As for time off work, I would say "take it." This will make you feel better, knowing you are close by Joel's side. I'm keeping you both in my prayers. Quote Link to comment Share on other sites More sharing options...
bunny Posted January 30, 2006 Share Posted January 30, 2006 I just have nothing helpful to add, and I hate that. I do hope and pray you get some answers that bring peace and comfort to both of you. you've been so concientous, you'll know the right thing. xoxo amie Quote Link to comment Share on other sites More sharing options...
Patkid Posted January 30, 2006 Share Posted January 30, 2006 Our experience w/ hospice was very positive. They supported but did not try to take over or overwhelm. They made themselves available to us and we decided what we wanted/needed. We did not have very long w/ them, but I am grateful they were there. Prayers for you and Joel. P Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted January 30, 2006 Share Posted January 30, 2006 I agree with Paddy. Listen to him. he is trying to tell you something that you don't want to hear. When we were in hospice with mom and dad. the hospice nurse told me "Sometimes they know and don't know how to tell us" I would take the family leave. This is when he needs you the most. Not only for him, but so he will know you will be ok as well. Quote Link to comment Share on other sites More sharing options...
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