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Should we call hospice?

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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.


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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,


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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.

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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.

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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.


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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,


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((((((((((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.

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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.


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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.

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