Sarah's Daughter,
Welcome to the neighborhood! I am really sorry to hear of your mother's challenges and I know how difficult it must be for you and the entire family. She sounds like a very strong-willed and determined lady and I am glad to hear she has endured the chemo and radiation. Those both are very tough on the mind and body, especially radiation to the neck and what it does to the throat and mouth. Be sure and congratulate your mother from all of us who know from experience how tough a road she has already traveled.
Your situation is so difficult because of your mother's age and the "toughness" that people of her generation grew up with. I have a relative that age that has only been to the doctor twice in their life because they didn't want to bother the doctor who already had so many patients that were much worse off. That is just something that one must be sensitive to when we look at what we want to do versus what they want to do. I once read in the Wall Street Journal a full-page ad that started out..."You can lead a horse to water, but you can't manage it do drink." As much as you want to help your mother, in the end, her wishes are the most important.
As difficult as this seems, it is somewhat easier (and more manageable) to sit down and discuss with her exactly what she wants out of this. She is at absolutely the worst part of the treatment from both a physical and a mental perspective. Encourage her or read some posts to her from people who know this from experience or have been by the side of someone going through this. Acknowledge how rough we know it is right now. Get her to communicate what she wants. Obviously, the loopiness of pain meds is a fear everyone has and it sounds like your dad also is worried about it. There are alternatives. The Duragesic patch, for example, is intended to release doses of pain meds over time and you change it every 3 days. My personal experience is that life was much clearer while the pain was controlled quite well. The meds she is on right now are intended to hit quick so she takes it every 4 hours. This would cause her to be in somewhat of a daze all the time. Morphine, oxycontin, etc., make me very loopy and I do not like them for that reason. While on the patch, I could drive, work, reason and generally function fine once the body gets used to the dosage. I upped it until the pain was barely noticeable and as it decreases over 3 days, you can taper off gradually or even keep the patch on more than 3 (5 or so) and it has the same effect of decreasing the dose without withdrawal effects. Studies have shown that few cancer patients experience addiction when the drug is given for intense pain.
I would suggest sitting down with your mother and making a list of everything that is concerning her right now. Try to pick one thing out of the list that will give her the most satisfaction if it dealt with. Stay with it until it is resolved. The list will grow shorter and soon be very small.
Get your mother on some type of home health care. They will send a nurse, aides, etc., have access to doctors directly for pain management and generally bring the care to the home. That is what they are designed to do and especially so far from the doctor, it will work better than running to the doctor 3 hours away.
Break the tasks to do into smaller pieces and it won't seem like such an overwhelming amount of stuff to deal with. Nutrition and hydration are of the utmost importance. Nutrition is needed for the body to heal and dehydration will make all the side effects of chemo and radiation much worse than they need to be.
As far as the tube thing, if she doens't want it, that is pretty much her decision until the doctors have to convince her she will not live without nutrition. There are ways to help without the tube, provided her nutrition is managed properly.
Hang in there. You have a big load on your shoulders trying to help your mother see what is best for her. She is so fortunate to have you helping her and learning all you can to help her more and better. Ask in questions but take only the size bite you can chew comfortably. Take time for yourself so you can be all you want to be for her.
Ed
