Posted By: ConnieT never sure what to believe or think - 12-15-2018 01:10 AM
grad school daughter lives at home. she came to me today to say her dad is milking this sickness which she predicted would happen from day 1. She said he could be doing something besides laying in that bed 24/7. It's good to hear another perspective as I don't know what is real and what isn't and I've elluded to that before.

In my head, I'm giving him until we hear that PET scan diagnosis on Thursday to milk it and be helpless. I do not know what the results will be, it could be good news, it could be bad news. I'm about ready to ask his boss to give him some kind of work project. I agree with daughter that he can't get any better just sleeping most of the time and his only exercise is to walk 10 steps to the bathroom.

Any thoughts, experiences on knowing what is real and what is just feeling sorry for oneself. I truly do not know how to interpret what I see day to day.
Posted By: KristenS Re: never sure what to believe or think - 12-15-2018 03:57 AM
At this stage it can be really hard to tell, for anyone. The illness makes you feel like you can barely get out of bed. Depression makes you feel that way too. Add them together and ... you don't want to get out of bed. Add to that a person who prefers to have people cater to his needs, and is maybe facing the first really big scare of his whole life ... that's a lot to untangle. That scan could come back perfectly clear (which would be great!) and he'd still be a sick man. How much he did to himself is moot at this point (from a health perspective, not a mental one). He has to heal, and it will take longer now. But (as you and your daughter know) he's got to do a lot of it himself. Just like you can't lift weights to build someone else's muscles for them, you can't do his swallow exercises either. Nor can you eat the calories, etc.

This is a totally long-shot idea, but since so much of what you describe of his issues is mental ... is it even possible to have him temporarily committed for his own safety? Preferably at the same hospital that deals with his cancer treatments? It might be a good wake-up call. Not the sort of thing I'd normally suggest, but if they can help him get a grip on his depression, and his new health reality, in a setting that can handle his physical needs better than you can ... it might be the eye-opener that he needs. They can do things like that for 24 or 48 hours. (We had a relative who made some very concerning statements once, and he lived out of state, so we had to call for a welfare check. It wasn't pleasant for anyone, but it was a bit of a wake-up for him to at least think about his intentions and his statements ... it hasn't happened again, thankfully.)

I know it's a weird idea, but it may be time for out of the box thinking?
Posted By: ConnieT Re: never sure what to believe or think - 12-16-2018 12:32 AM
my daughter said he needs to go live in long term care for awhile. He's making no progress except to get out of bed once in awhile. . I would say his intellect and personality seem back to normal for the most part...that was questionable at one time. I don't know about depression. He seems the same today as he was 25 yrs ago when he started taking depression meds. This is probably the first time in his life that he can't control much of anything. Kristen, you are correct in all you say.

I will try to be patient until Thursday appts and see what the doctors say. I am used up from this whole thing and of course, no appreciation whatsoever.

thanks for your input. I am just shaking my head not knowing what to think. He is doing 6 boxes of formula a day and some water. I assume he's swallowing applesauce.
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