April 30, 2009 at 6:54 pm #16375marjoParticipant
Good to hear from you, LD. Yes, do stay with us. This site is so helpful.
Natasha: I am sorry you are going through all this…..first your dad and now your mother. You don’t speak of any brothers and sisters than can help you? My mom passed away about 3 years ago. They never put a catheter in her, so we had diapers the whole time. Also, she didn’t have any BM problems. It’s been 3 weeks since your last post. How are you doing?April 9, 2009 at 5:19 pm #16374darlaParticipant
I am so glad that you replied to Marjo. After reading your post I too began to wonder. My husband has been gone for 7 months & I also have gotten a lot from this site. This is truely a monster of a cancer to deal with. I don’t think anything else can compare to what those of us who have dealt with it have gone through. I like you know that I did the best I could with the circumstances we were given and that our husbands are in a better place & no longer in pain, but it is still hard to accept and go on. We all miss him so much and I am still so sad & lonely. It just rips your world apart to watch someone you love be taken away from you so swiftly by this horrible disease. I will now be keeping you in my thoughts and prayers along with everyone else on this site who has been touched by this awful type of cancer. I hope that things are going OK for you as I too know what it is like & how hard it is to go on.
DarlaApril 9, 2009 at 4:26 pm #16373ldParticipant
I keep checking into this site since my husband past over 18 months ago. It is helpful to me to read the experiences of others and is helping me realize that we did the best we could for my husband. I have had many questions and they are gradually being answered and my mind put at ease. This is a horrendous form of cancer and I wouldn’t wish it upon my worst enemy. We all miss him terribly but are greatful to know that he is now in a far better place and no longer suffering. I thank all who share on this site for the help they have given me and I keep everyone here in my thoughts and prayers because I know what they are experiencing.
LDApril 9, 2009 at 9:47 am #16372roma35Member
Natasha, I am so sorry for your loss of your father and then pain and suffering your mom is enduring with CC. I truly don’t think I could endure so much sadness and stress at one time, you are an amazing person. I am kind of baffled by the treatment of your mother at the hospital. Have they done ultrasounds on your moms abdomen to see if there is a bowel obstruction? Are they giving her laxatives of any kind? has a suppository been suggested? Your mom needs relief now. Also, what kind of pain therapy do they have your mom on? Is she wearing a patch of any kind, morphine? It seems at this point the goal should be to get the pain controlled.
You are an incredible daughter, and I am sure your mom is so grateful for your loving support. I pray for strength for you and the pain to be relieved for your mother.
BarbaraApril 9, 2009 at 3:48 am #16371marjoParticipant
LD: I think you might have gotten lost with the other posts somehow. I am so sorry. We are still here for you. I hope you come back. My Mom passed away 3 years ago and I find this site informative and helpful. Helps me to better understand the disease and that what I did was the best I could do. No regrets for my part. Just sorry as heck to lose a loved one.April 8, 2009 at 6:24 pm #16370marionsModerator
Natasha….I am hoping and wishing for your Mom to be relieved of her pain today. Natasha, have you spoken with the attending physician? Have they ever treated an GI cancer patient? You might want to mention to either, the nurses, or physician, or both, that you are a member of Cholangiocarcinoma Foundation website therefore, the treatment your Mom is receiving is being observed by people from all over the world. The members on this site have first-hand experience with the progression of this cancer and are behind you, all the way.
My heart is with you,
MarionApril 8, 2009 at 2:24 pm #16369
its going from bad to worse. my mom hasnt had a bm for over a week and hasnt peed for 3 days. i keep asking what to do, and just today the nurse told me they could drain the pee and why didnt i say something sooner. i have never seen any one suffer as much as my mom is right now, begging to be relieved of her pee. i wish one of the nurses would ask if shes peed since i keep telling everyone here that shes continuously in pain and even the morphine and added pain killers arent working. I’m so angry and feel so bad that she could have been relieved earlier. they’re putting in a cathater right now, and I had to leave and come right because i canniot withsatnd seeing someone suffer to such a great degree and feel there is nothing to be done.
glad this forum is here once again, i feel like i will crack one of these days.April 5, 2009 at 4:06 am #16368tiapattyMember
You are very strong and a very good daughter. I honestly don’t know how I would handle what you are going through, to lose a parent while you are caring for the other parent who is terminally ill is beyond what anyone should have to suffer. I pray for your strength to keep going.
I would ask the doctor for an honest assessment of how long she can continue in her condition. Also, can she be moved to a hospice facility? In the States, typically they would not keep a patient who is nearing the end in the hospital, not sure if there is a different protocol in Canada. In the hospice setting, there are services offered that may not be available in the hospital to help your mother and you and your family prepare for her death.
PattyApril 5, 2009 at 2:40 am #16367
since my last post, my Dad passed away. todays was the comemorative 40 days we practice in the greek orthodox religion.
my mom is going this week or next at most. i was strong thru my fathers death which was totally unexpected but now, i feel weak and emotionally drained. i arranged for mom to go home over last weekend and she was so greatful. since we’ve been back to the hospital, i hardly recognize her. she became constipated and has internal hemeroids which are killing her. pardon the pun. its been since dec 28 2008 we’ve been in the hospital and its finally comming to an end. my heart is breaking and i want her to go at the same time. its so hard to witness someone you love dying and suffering so much. she cries and cant move around and spends an hour at a time going to the washroom trying to relieve herself. its true that when the bowel movements stop and the peeing slows down its only days before dying right? i feel exhausted and nervous like i cant take it anymore, and the i look at the fight my mom has put up and think shes the most courages person in the world. it seems the more you care for someone the more grief you feel when they go. i dont think i’ll feel guilty. i’ve quit my job and spend midnight till 7pm there every week day.
Any insights as to how many days after the bowel movements stop? she sleeps with her mouth open and her eyes half open and turned slightly back.
i know theres not much else to do, but it feels good to rant like this! thank you everyone whos reading.
i believe in not standing in front of nature takling its course and respect the dying process. i am shocked by my fathers death but understand he could not witness this anymore. and i pray for my mom, Mary, and everyone who goes thru challenging times for strength and guidance and love.
My mom is preparing her trip home and i am proud to have assited her in this last leg of her journey. i am afraid, but somehow feel courage and strength in between the seams that are ripping apart.
blessings to you all and thanks agin.
anastasiaFebruary 27, 2009 at 4:19 am #16366asher47Participant
I had to say hello and send warm thoughts from Thunder Bay Ontario! Where abouts do you live in Canada? I am so sorry to hear about your mother’s current situation. 40 days in the hospital just seems cruel to me! I really hope the doctor’s are doing all they can for her. I understand what you mean about not wanting to rock the boat over talking about death. It has been very difficult for me to talk to my father about his impending death also because we have never been all that close, so talking about death was the last thing I wanted to do. But I am so thankful I talked about it with him. We didn’t talk about it that much, but what I found helped was writing him a letter. I found I could better explain myself through writing. I don’t know if that is an option for you? Anyways, this is a very special time for you and your mother to share as painful, and frustrating and difficult it is. She must really love you for the constant support. You and your mom are in my prayers!
AshleaFebruary 14, 2009 at 1:46 pm #16365darlaParticipant
Everything Joyce has stated is so true. I too am so sorry you & your family must go through this along with myself & everyone else here who has or is going through this painful situation. Try to stay strong & know that we are all here for you when you need us. I will keep you, your Mom & your family in my thoughts & prayers.
DarlaFebruary 14, 2009 at 5:29 am #16364jmoneypennyMember
So sorry to hear about your mother and how she’s worsening. Being in the hospital so long can be dehumanizing and must bring her spirits down even more. I was in a similar situation with my mother, but I can’t really tell you when the end will come, since it’s so different for everyone. Just know that your being there is an immense comfort to her and she loves you for it.
As for not talking about death, I can tell you that I’m one person who regrets not talking about it more fully with my mother (she really wasn’t comfortable with the subject, and I guess I wasn’t, either). There are so many things left unsaid between us, so many regrets. That said, I think I can say with certainty, that even if you DID talk about every aspect of death with your mom for 3 weeks straight, you will still have regrets after she has died. It’s a terrible part of the grief process: though we rationally know that we did all we could, our minds keep going over what we should have done differently, what we should have said or should not have said. I’m just telling you this to prepare you so you don’t feel as guilty – but you probably will feel guilt. So if you think your mother would be upset by your bringing up the subject, try to bring it up gently, and if she refuses to talk about it, then just honor her wishes. That’s all you can do – it’s her choice and if you let her know that you are open to anything she wishes, then you’ve done the ultimate good for her. Everyone copes differently, and some people just don’t want to make plans for/talk about the end.
I grieve for you in this painful situation. All my love and hope going out to you and your mother and your family. You can always come here for a bit of support if you need a shoulder to lean on.
Joyce MFebruary 14, 2009 at 4:49 am #16363
Thank you for reading my post and responding. It means so much to hear back from people who understand. I’m in Canada and thankfully our tax dollars are paying for moms medical sponges and things like that. My mom has since had 2 infections and a couple of painful procedures with the drain. On a bad day she asks to be put out of her misery and says this is not a life worth living. She’s in the hospital over 40 days now. I spent the first 20 with her, then her sisiter took over for another 20 and I’m back again. It’s harder this time. She had a high fever today and has lost lots of weight and for the first time, was extreamly exhausted the whole day. I wonder when she will leave us. I wish there was something I could say to her to bring some kind of peace to her. Shes so fragile and child like and so sweet. She doesn’t want to bother the nurses even when she’s not well. She’s always concerned about our well being and has appologized many times to my brother and father and my self for putting us through this. Does any one have any idea if the exhaustion and fever are signs of the end? I feel like I want to talk about how she feels about dying, but can’t bring myself to it. Has any one regretted not asking those questions?
My heart truely goes out to any one who has experienced the overwhelming feelings and helplessness and loss that comes with terminal sickness.January 19, 2009 at 2:49 am #16362rankMember
My dad had a drain and it wasn’t so bad. Just had to watch it when he was in bed and moved. Mom had to sponge bathe him during that time too. But he relieved a lot of his discomfort so it was worth it.January 11, 2009 at 12:11 am #16361tiapattyMember
My mom ended up with a total of 3 drains, they require some care, hopefully they have shown you what to do. There is also info online:
My mom hated the bags but I do believe they helped her avoid the severe vomiting that many report in the end.
I have some leftover drain and gauze sponges if you want me to send them to you, I offered them before but nobody responded. Feel free to e-mail me and I will gladly give you my phone# if you have more questions about the drains.
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