Janet,
For some reason I didn't get your last message, but I am glad to hear from you. I am sorry to hear that your mom is not doing very well, either. The Perifisone did the same to my mother. It made her vomit more than the chemo ever did. It also gave her severe diarrea. When she was taking it, I kept nausea pills and Immodium in her system constantly during dosage times. The nurse had told me to give her Immodium after every loose bowel movement - and the diarrea was pretty severe, so I would dose her with Immodium one hour after the Perifisone to try and prevent it. When the nurse first put mom on the Perifisone she said that it caused some diarrea and usually only people with digestive cancers would have nausea, so I should be prepared for it. I had no idea, though, that the side effects would be so extremely severe. My mother was also very weak, but she was already in a weakened state as it was. Now she it seems she is just wasting away, and I, too, am having an extremely hard time dealing with that (even though I keep telling those that ask that I am doing "okay"). I do not like to hear that your mom is not doing well, but it is good to have someone that can relate to this emotional rollercoaster. When mom first came home, she could go to the bathroom with my assistance. Then she had to use a bedside potty, now she is on a catheter :(. She is still not eating. I am lucky if I can get her to take 5-6 bites a day of soft food or soup. I have tried everything, even baby food. I think that food just doesn't taste good to her anymore. The nurses come almost every day now (either the RN or Aide)- it's nice to have someone here to help but it also makes me wonder the same thing that you are wondering. Does this mean she's close? I try not to live in denial: hospice was created for the sole purpose of just helping those that are dying- stay comfortable until their time comes, they even have a chaplin that comes to visit (they don't treat the illness-just the side effects), but I cant help to try very hard to hold onto some iota of hope for a miracle.
The vomiting and diarrea your mom has, I believe, are caused primarily by the perifisone, not the cancer- because my mom doesn't get sick to her stomach anymore, and only sometimes has bouts of diarrea, usually after a day or so of confusion/delerium. That is the scariest part, is when she becomes confused - it's so hard to keep a strong front while you watch your mother (mine was so independent and always took care of others) falling apart, but I have managed to keep it together when I'm in here presence and do what the nurses say to do: remind her of the date-etc, talk calmly and remember that even though she is confused, she can still hear me. I continue to tell her daily that I love her, and I even climbed up into her "hospital" bed to lay beside her and hug her the other day. The last few days she has been very clear headed, and that is one of the few things I find I am thankful for. I do think, though, that she has given up. I also think she is very tired of just being in that bed, doing nothing. She has no interest in TV or reading anymore and because I no longer have any sort of social life- I have nothing interesting to really talk to her about except the local news which I'm sure she could care less about. I know your stress, and I am there with you, if not in person, then in spirit.
Mom wasn't on the Perifisone long enough to find out whether it did any good. The doctor said it takes at least three months of treatment to tell anything. Also, when mom was taking the Perifisone she became very dehydrated. Watch for that: you can tell by pressing the skin on her forearms (like a very light pinch), if she is dehydrated the skin will stay kinda stuck together and very slowly go back down: if she is not dehydrated it will just "bounce back". I would suggest some pedialyte either way: IF you can get her to drink any (the nurse said adding a tsp of powdered jello helps with the taste).
One of the stressful and frustrating things is that even the doctor won't know how your mother is really doing until she can have the scan done. I pray that yours makes it through the entire treatment (unlike my mom); At least long enough to see positive results.
Another thing is that the hospice nurse tells me that if my mother won't eat, just try not to worry about it (she didn't say this aloud: but I know she means that basically I should just keep her comfortable until her time comes). It's hard not to try and encourage her, though. It's to the point that if she eats more than three bites at a time, I actually feel elation (I know: it sounds crazy) It doesn't feel natural not try to get her to eat as much as I can get her to take. I feel so helpless! I'm sure you feel the same.
It sounds like that unlike you, I have my father here at the home with us; but he was raised like a lot of older men- not to express emotion, so the house stays pretty tense, and neither of us sleep very well. As a matter of fact, I find myself dozing off sitting up sometimes and that is something I have never done, unless I was sick myself. My brother and his wife come by weekly to visit and help by bringing sheets and needed items. My sister-n-law went through this with her mother and has helped me personally by telling me what to expect and has taught me some things about being a "caretaker", but it is still surreal to me most times and I always feel like I'm not doing enough.
The hospice staff gave me an informative booklet on what to expect, when to expect it, and has great tips on dealing with all the emotions: mine, mom's, dad's, but I still don't think I'm dealing well emotionally or physically, my appetite is suffering a bit too. The fact that your doctor hasn't put your mom on hospice gives me hope that she has a chance. But I also know that sometimes physicians will wait too long and that doesn't help you or her emotionally, physically or financially.
I wonder too, about your mom's weight-if she is as underweight as my mom is then it may be doing more harm than good (but keep in mind I am certainly no expert in these matters). I've seen how miserable that medication can make a person. Does your mother still do things she enjoys? Does she seem withdrawn?
I would like to at least offer some information that I have acquired since they have put mom into hospice care.
I am going to give you a link so you can decide whether hospice is something that you think your mother needs.
It is my true hope that she doesn't need it, that she will soon be cured and this will be just a bad memory for you both. Hospice can be a depressing step, but I really think this link may be useful and will help you make more informative decisions, especially since I've heard your concern about her continual sleeping and loss of appetite.
http://cis.nci.nih.gov/fact/8_15.htm
Sorry that this has become such a long message, but, as I said, it helps to have someone to "talk to" that is going through the same things that I am experiencing. I do wish you the best in that the medication does for your mother what it couldn't do for mine because of her weakened state. Please, keep in touch.