Thank you Marion and Lainy!!!! Biggest virtual hugs to you ever!!!!
Good news...although somewhat sad-Dad says he thinks its time for hospice. It brings me relief to know that there will be capable people helping now, but a hard reality that dad knows its time. We had a great two hour talk this evening-he even told me who he wants me to give tomatoes that he grows to....so sweet that he wants to make sure the people who normally get them still do even after he is gone. Thank you all again (I feel like I keep repeating that line)-it was nice to know I have somewhere to say these things. I hate to burden people...but seeing those of you who are fighting for yourselves-or for your loved ones is truly inspirational.
Thanks all - Dad always had high BP, and when I noticed it going down I called into his primary care physician, to see if we needed to take him off his BP medication. He agreed that we should, as well as another he was on prior to diagnosis, but his BP is still remaining low. I am going over to talk to Dad tomorrow, I am hoping he is to the point now where he will be receptive to hospice. He has started making subtle behavior changes. In addition to becoming more forgetful, and repeating things a lot, he has just in the past day or two become much more affectionate. He has asked for hugs (not like him) and actually said "I love you" today when we spoke. He normally just says "wonderful" when I say I love you....which has always been understood to mean "me too". Hopefully some alone time tomorrow will give me the opportunity to convince him to let me in, and give him the support hospice can provide. I will let you know how it goes!
Thank you all so much again for letting me vent....you are all such a source of comfort.
One detail, his BP is only 100/60, not sure if that is really low or not.
This may have been discussed already in the past, I apologize if so, but my fathers blood pressure is getting lower. Is that normal with the CC or is it more indicative of an infection? He has no fever to speak of. (as background, he is not getting any treatment for his CC, but has not allowed hospice in as of yet). Thank you all in advance, as always, you are all angels!
Thank you Lainy and Clarem - your words bring a lot of comfort. Dad was not receptive to the discussions today, but tomorrow is another day, blessed that we have it, and we will try again. Although I am too old for it, I may have to play the "baby" card with him soon!! I really appreciate your inputs, thank you! I will keep you updated on how we do. Thank you thank you thank you!!!!
We are going to have the hospice talk with him again today. His energy is depleting so quickly now. I hope that he will choose to either have the stent replaced, or at the very least let hospice in. It is such an emotional struggle that I believe that having someone else come in will make it easier on us, and truly him in the long run. I guess without treatment, we can expect the timeline the doctors gave us to be pretty reliable? Seems like he was doing great, and now deteriorating quickly. I am just not sure if that is the CC or the jaundice/bile. Thanks again to everyone, prayers for all suffering, and prayers of thanks to those of you who reach out to others. truly a blessing!
I wish I knew what he was thinking-but I am also trying to be very sensitive to his wishes/needs. He keeps telling me that he is in no pain, but I just cannot imagine that will last. I wonder what kind of infection not getting the stent replaced will cause, and how to know what to look for (outside of a fever, which he has been running low grade off and on). His BP is much lower now, but other than the fatigue and jaundice getting worse, nothing much else noticeable. Just probably being over protective....but not sure that is possible. He does not remember what the oncologist told him as far as timeframes-nor does he want to know. He has always been a bit stubborn-guess he will go out the same way. His nature has carried him far in life, he is truly an amazing man! Thank you all again for posting-any info makes me feel stronger!
Dad was given a prognosis of 4-7 months without treatment, and only 12-16 (ish) with treatment. He is 80 years young, and that was likely part of his decision as well. He has never been to the hospital, and had only had to go to the doctor for preventative meds in the past. He is just not a fan at all. My family and I have tried talking to him on several occassions, he just isn't receptive (yet). We will for sure keep trying. He says he is in no pain. The doctor ordered hospice right away, but he has refused to allow them in thus far. He is not being seen by any doctor at this point, but we have called in to his primary care doctor a few times, and he has sent in prescriptions for anti nausea and prevacid for him. That was when he was having the terrible feeling of fullness to the point of discomfort. He said the medicine helped. I just wonder if anyone has ever NOT replaced a plastic stent before. I know that it seems odd, and I don't want to say Dad has given up, but he is tired. Thank you so much for your replies!!!!!!!
I have been reading through the posts now for a few weeks, trying to piece together as much information as I can. This site is amazing, and it is wonderful to see such caring people sharing support with each other. I am truly sorry for all you have experienced.
My father was diagnosed on February 1st of this year. He initially presented with acute jaundice and itching. After diagnosis, he chose not to pursue any treatments, but he did receive a plastic stent via ECRP, in March. That alleviated the itching and jaundice. Two-three weeks ago he started presenting with jaundice again, but this time no itching. I told him he needs to get his stent replaced, but he is not interested. I spoke with his doctor, and they said they could call in antibiotics if we wanted, but he would need to go in for a blood test first. He does not care to do that either. His jaundice is worse this time than last, but again, no itching.
The fatigue has really gotten to him this time. It is sad to watch, and feel helpless. He says he is not ready to let hospice come in either, and has asked us to respect his decisions. While trying to do that, it is hard not knowing what we need to look out for, or do to make things easier. Overall, Dad is staying in good spirits, although yesterday he was noticably more withdrawn. Any advice, good or bad, is welcome. Hoping he lets hospice in soon, that will take some of the burden off of us, not knowing how to help. Thank you in advance.....you all have already helped tremendously!