July 31, 2016 at 4:48 pm #92588lainyParticipant
Daisy, what a team you and your Mum are!! You will cherish this moment in time and how proud you are of each other. You both traveled this bumpy road with so much love and admiration and dignity. You are going to be OK and I think Mum knows that too. Sending you both so much love.July 31, 2016 at 1:25 am #92587
Daisy….I agree with the others, you have tended to your Mom in the most extraordinary way. She raised a fine daughter.
No one should have to travel the cholangiocarcinoma journey on their own and although the members of this site are not physicians, collectively their wisdom makes them expert in their own rights.
My heart is with you and your Mum,
MarionJuly 30, 2016 at 6:52 am #92586debnorcalModerator
Daisy, what a wonderful gift your mum gave you in sharing her thoughts on the exceptional care you have provided to her. May you treasure this gift always.
DebbieJuly 29, 2016 at 11:55 pm #92585darlaParticipant
I agree with you that you have exceeded her expectations and have done everything you can for your mum. Yes, you will have all these memories of the tender moments you share and knowing that you have done all you could do and then some in a most difficult and trying situation. Dealing with someone with CC has got to be the hardest thing any of us have had to do and know that you are doing a stellar job for and with your mum. We are all right there with you in spirit, by your side to give you the strength to persevere. Keep us updated when you can. We all know & understand what you are going through and truly do care.
DarlaJuly 29, 2016 at 9:16 pm #92584
Thank you wonderful people. Mum has managed to tell me this past week her feelings on my care for her. It warms my heart that I exceeded her expectations and will be a lasting, heartwarming memory for me. I have had the knowledge to be the best carer I can by learning from this forum. You have all educated me and I thank you deeply for this. It’s enabled me to care for Mum in the best possible way and be prepared for every symptom. I’ve been able to ease her mind with knowledge gained in here. You are all wonderful and do wonderful things for people who are going through a torturous, frightening time in their lives. Well, it’s 7.15 am here in Melbourne so I’m getting up and heading off the hospital to sit with my dear Mum and hold her hand while I can xxJuly 29, 2016 at 6:01 pm #92583gavinModerator
Please know that right now my thoughts are with you and your mum as you both go through this. And having been where you are now with my dad years ago I can so tell you that you are doing everything that you can and I know how proud of you your mum is. Thinking of you right now.
GavinJuly 29, 2016 at 4:01 pm #92582darlaParticipant
Daisy my heart and thoughts are with you and your mom.
DarlaJuly 29, 2016 at 2:03 pm #92581lainyParticipant
Dearest Daisy, you are a phenomenal Daughter and doing everything just right. One suggestion is to dampen the towel you are using on Mum with cold water and that really helps the itching. Cannot help on the urinating as the last day they put a diaper on Teddy but all his functions stopped and the diaper stayed clean. Teddy was also on Haldol as he was getting hallucinations from the Morphine. It sounds like Mum is really ready to make this journey now to eternal peace. She is probably smiling to herself at the amazing daughter she has.July 29, 2016 at 11:25 am #92580
Mum is very close to death I feel. She just wants to lie in her bed in the dark with no noise. she has told me a few times now she wants it to end, she wants it to take her or she wants to float away. I told her it’s ok to go, to float away where cancer can’t hurt her anymore.
I use a towel to gently rub her skin where she itches and she gets relief from that. It’s not driving her mad at this stage but that’s probably due to the large doses of morphine and haldol. Mostly she lies quietly with her eyes closed now and her breathing has slowed right down. She is comfortable but wants her long sleep now. I don’t think there is any point bringing someone in now to be honest. She hasn’t eaten for a few days now, is only having the odd sip of water and has no energy at all. I keep her mouth moist with a sponge and lip balm. The only thing I find surprising right now is her urine output. She seems to be passing a good amount. It smells and seems to be brown but given her lack of food and drink, I thought she wouldn’t be urinating anymore. Weird!July 29, 2016 at 5:54 am #92579ranganiParticipant
Daisy I can only echo Marion, could you try and find a way to have the community hospital briefed by the cancer specialists?
The itching is not directly from the tumor, it is a symptom of jaundice caused by the bilirubin build up (which is because the tumor is blocking the bile duct) That is something a physician would be able to explain. Unfortunately there is not fix for this other than a stent or port to release the bilirubin. They might be able to give your a topical ointment which will provide some temporary relief. Very temporary unfortunately but better than nothing if the itching is very bad.
Do you have in your area, a home care hospice service? Who might be willing to visit the hospital and guide them on palliative care?
Take care of yourself too, your mum needs you to be healthy for her
RanganiJuly 29, 2016 at 12:32 am #92578
Daisy….oh my. You followed your Mom’s wishes and are handling it fantastically. Can’t they get in touch with the cancer hospital for advice.
Your Mom’s bilirubin will continue to raise….itching will increase, how will they address they all symptoms?
MarionJuly 28, 2016 at 10:59 pm #92577
thank you so much Rangani, those links were very helpful.
Sadly mum’s doctors and nurses have zero understanding of her cancer. They were discussing her medications yesterday thinking they might have to change them because she is itching. I had to explain it’s her disease causing the itching not the medication but they just looked at me funny. I kind of wish I had put her in the cancer hospital but I know our community hospital is where she wanted to die.July 28, 2016 at 8:54 am #92576ranganiParticipant
My mum is on Haldol however in her case it was prescribed as she was having anxiety attacks. It is primarily an anti psychotic drug which has worked so far to contain her anxiety. For nausea prevention she was started on Domperidone right from beginning of diagnosis. We have been giving it before each meal – a fairly high does i think at 20mg 3 times a day. She is as yet able to take things orally, though minimal quantities, a few sips of liquid and a soup just once a day.
I feel your pain and frustration, I think pinning a notice on her door and perhaps to her bed head if that is practical might be the way to go. It is tough to make decisions, but in all the articles I have read, the advice is to just keep lips and mouth hydrated. The toughest part is accepting, that what we are now providing is end of life care and the focus is on their comfort. I am posting a few links here, hope they help, hope they help you in your discussions with nursing staff
Take care and be strong, Rangani
The first link has a particular section on appetite changes and avoiding food battles.July 28, 2016 at 2:08 am #92575
Daisy….I have learned that Haldol is one medication commonly used in the treatment of nausea and vomiting. Hope it works for your Mum as well.
Palliative care covers coffee ground vomitus and I am positive that the physicians and nurses know how to address it, unlikely for additional article to be of any use. Regarding food intake, one must assume that nothing given by mouth includes food as well.
You are on top of it, Daisy, and your talk with the nursing manager should clear things up for good.
MarionJuly 27, 2016 at 8:11 pm #92574
I have said to her doctor that I don’t want her given anything by mouth apart from sips of iced water.I also said ti to the charge nurse. I am going to see the nurse unit manager tomorrow and instruct her to have no food delivered to her room and see about getting something put above her bed head so visitors don’t feed her. I have visited a number of times now to find people feeding her jello – good intentions but it causes such distress not long after. Mum is left to suffer and I am left to clean it up.
Marion she has been given haldol I think and nothing is given orally anymore, only via a port in her tummy. Morphine and anti nausea meds are given via a driver.
Would you have a link to an article I can print out and show her treating doctor?
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