..Day 65..
The morphine has gone up 2mg/hr (day 63), it's only been water for about past 10 days. Debi, dad stopped eating when it appeared he couldn't hold down food either, that was voluntary on his part although he's had very small nibbles of food since. The doctors just tell me it is the disease progression.. who the heck really knows, the only way you're going to see these things is to thread him through a scanner. It has been 11 days since the urine turned really dark and cloudy. He's been a bit of an anomaly, outlived everyone in the place since we arrived, however, some patients are only in for a few days to recover from some complication then go back for the in-home hospice. His lungs have been clear, BP sometimes up and down, but has been healthier than visitors in the room, no temperature.. Before he got sick he did have sleep apnea where the breathing seems to stop for like 30sec and that still goes on. Overall his fat and muscles on the legs and arms of course without food have deteriorated substantially. I suppose with the slowed metabolism, pain-free starvation is at hand. Lots and lots of sleeping, but he will sit up with the aid of the bed to watch a little tv news, fulfill requests for water or move the bed around, his speech is whisper faint and it is sometime difficult to hear, you have to repeat everything back and wait for the positive nod or agreement to understanding in the eyes. We've all gotten used to putting our head and ear right in front of his mouth to listen clearly for instructions.
Debi, I'm sorry to hear about your experience and maybe from a hospice delivery strategy that may play into treatment differences from in-home versus facility care. Other than overnight there probably isn't more than a 3hr period that passes that some nurse or aid isn't doing something to check on dad, administer meds, check the morphine pump, cleanings, etc.. My understanding is that we'd be doing all that work at home and although I have yet to detail the abscess open wounds those wounds in themselves of such severity precluded any thought of taking dad home. (sometime I may muster the strength to describe his wounds in better detail and what happened but I'm not sure it is an appropriate read here, I think some of the nurses reconsidered career options after treating dad). Debi, were you told what medications were given and the dosage? I gave the nurse a bit of a grilling when the morphine was changed because the last time it was done weeks ago it did seem to tip him over to an unconscious state and the next day the dial was eased back. Each experience is unique and the hospice objective is to keep the patient pain-free, I do see the staff keeping a close eye on checking the patient's reaction to pain, constantly asking if he's feeling any pain. I think there may be more controversy over the sedatives given as I've seen in other web discussions in addition to the morphine alone - to change the mental behavior. Every patient is different but I think that they all have hallucinations, I was told to expect that, and the hospice care should have fully informed you of the drugs given and possible side effects.
On a lighter note since my last posting, we celebrated Christmas in his room, his room is adorned with a Christmas tree, lights across the bookcase and headboard (note - no blinking lights, that would be aggravating to the patient). Opened presents and such and had a nice ham dinner. We made the best of it, what else can we do except be there with him to enjoy the evening and be with family. Overall it all went well. Now my parent's wedding anniversary is in 2 days.
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