Topic: Scared

My husband seems to be on a steady decline. Just in the past month he has lost a total of 15 pounds. Today the doctors office called and his tumor marker went from 665 to 1423 in two weeks. I figured it would climb since he is no longer getting chemo but for it to double in two weeks was a shock.
He is barely eating. I am lucky if he eats one egg in the morning, lunch he might eat a half of a sandwich but lately not even that, today it was 2 pair slices and he had to make himself eat it. Dinner sometimes nothing at all or he eats the helping the size of a jar lid.
He has no energy, sleeps a lot and get dizzy a lot when he walks. He's in a lot of pain. Once in a while I can get him to take his pain meds but he puts up a fight.
I feel helpless!
I feel like he is slipping away fast.
How long can a person go on like this? He is suffering so bad. I dont want to lose him and feel selfish for feeling that way. But at the same time I know he's miserable. He tells me he hopes it's soon. It breaks my heart to hear him say things like that.
He also told me that in 2 months he will be gone. Is it possible that they know how much time they have?
Daily he is explaining to me in how to make sure things get done.  Like how long the house roof is good for and things like that. I set and listen and the whole time all I want to do is cry. I do pretty good at holding it in. I dont like crying in front of him much because then he feels like he has to apologize for being sick and I dont want him to feel like he needs to do that.
The kids are asking more and more questions and I try to answer them the best I can.
He has a doctors appointment friday and his doctor I believe is going to talk to him about hospice. At this point hes not real excited in having them come in. Will hospice wait until he is comfortable in having them come in? Can I call them and let them know he's ready? Not too sure how it all works.
Thank you everyone in listening to me oce again. Sometimes it just feels better to write then to talk about it.
Michele

Re: Scared

Dearest Michele, PLEASE make  sure the ONC calls Hospice when you are there, Friday. The way you describe everything I can just see Teddy. The only thing better was he took the Meds. There is NO reason not to take the meds it can only get worse. I am taking a jab at this but could he possibly think that since he is ready and it sounds like he is, perhaps he thinks any Meds will delay the inevitable. I so hope the ONC can get through to him. You have to do some tough love. Maybe tell him this is NOT how you want to remember him in all this pain. IF you would like to talk let me know and I will send you my number. In the meantime try to think I am standing along side of you giving you strength. I just know he will feel better with Hospice. No one needs to go through what he is as it is senseless.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scared

Hospice can only help. Your husband sounds like he is preparing to cross over. I do wish he would try meds to control pain. Maybe he needs different kind?Hospice does not force anything on your family and is simply there to help. They are it there all the time either. It provide meds, visits, equipment, and support. I highly recommend taking advantage of those things. After revolving door at ERs with my Dad which was so hard on him, it was so nice to have house calls for medical issues. Keep in mind that you can opt back out of hospice any time. Thinking of you, Michelle, your husband and kids at this profound and awful time.

Willow

Re: Scared

Hi Michelle,

This must be incredibly hard for you all.  You are not being selfish - of course you don't want to lose him.  Willow and Lainy are right - hospice can help him  and you.  He can be pain free and also get relief from any other symptoms that could cause him and you any distress.  Supporting you through this is so important.  My sister refused hospice care but with her GP and district nurse we managed at home and once we got her onside with controlling her pain, she relaxed a little.  She didn't realise the pain she was in until it was gone.  Hospice will have many different ways in which they can help.

X

Clare

In the stars now . . . .

Re: Scared

Clare, very good point. The only thing Teddy refused was the Oxygen but I told them to bring it anyway. Sure enough 1 week later I found him using it and he looked up at me and said, boy, this really helps control the pain too. My point is sometimes we just need that strength to overrule the "boss".

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scared

Dear Michele,

I was my mom's primary caregiver for a month until my dad took over, and my heart truly goes out to you.  I cried a lot when I was living with her, but I must say that I haven't been crying as much after I came back to my own life.  You're in the thick of your husband's pain, and I can only imagine how you must feel. 

As a child, I think it would frighten me to talk about dying with my mom.  But she has been making offhand comments about it from time to time, to which I would inevitably respond by saying she should be thinking more positive thoughts!  Reading your post enabled me to see once again her illness from her vantage point -- something I often forget to do.  Thank you for sharing, and please know that my thoughts are with you.

Caroline