Hello Im new here

Peggy, I am sorry what you are going through. We just lost my Mom to CC last month. She was on home hospice at my sister’s house, and my sister is a home hospice nurse. So she dealt with many of the same things you are feeling. When to take the “nurse hat” off and put on the “daughter hat.” I agree with what others have said. Though my mother never had jandice or other blockage issues, that seems like an easy and fairly non-invasive palliative measure. But the “quality vs. quantity” decisions are always hard.

Bazel – did your Mom have dementia when your father was battling CC? My father has vascular dementia, I guess you’d call it the middle stages. He has great long term memory, short term not great at all. Lately he’s “forgetting” more about personal hygiene, to eat 3 meals, etc. All through my mother’s time on hospice he kept forgetting why she was at my sister’s house and kept asking when he could take her home, when would she start feeling better, etc. It was torture to tell him almost daily that Mom has cancer and won’t be able to come home. Now we’re trying to talk him in to moving in with me and/or my sister. He is aware of his dementia and memory loss, and is able to verbalize how difficult that is for him. He has always been very independent and extremely intelligent, as his doctor said that kind of person makes it even more difficult to deal with losing their independence.

My dad had a stent to relieve jaundice through ERCP with minimal anaesthetic – I’d really consider that because if it works it can help so much. Jaundice can be so debilitating, itchy and make you feel awful.

I feel for you, dealing with CC on top of your mother’s dementia. I’m interested in why you hate the idea of morphine – my friend, who’s a palliative care nurse, says that it is utterly indispensible. I understand it can cause hallucinations but my grandmother’s passing was eased greatly by morphine. I don’t believe there are many other drugs which could have done this (she was on huge doses of morphine for at least a week).

I hope that you find some answers and keep your mother as peaceful as possible.
Kate

Peggy, I’m new here also. I went through CC last year and was thinking about the jaundice your mother has. Not long before I had surgery, I was fluorescent yellow and itched list crazy. I had an ERCP done and the doctor doing it inserted stents, and lo and behold, a week or so later my color was normal and the itching went completely away. I’. not sure this is an option for your mother, but I thought I would share my experience. If this is considered, it should only be done at a major teaching hospital, as most smaller hospitals don’t do enough to ever get really good at it.

Good luck in caring for your mom.

Hello Peggy and another warm welcome. My dad had cc and passed almost 3 years ago now. I was his medical advocate and was by his side through his cc journey. My mom has dementia (Frontal Temporal and PPA). If I can draw some assumptions based on both experiences and offer some thoughts, here they are:

My mom is in the middle stages of her disease and no longer understands the concept of most medical care and treatment. She just wants the doctor to fix her. We are dealing with a new L1 compression fracture and she just doesn’t understand things like going to get an MRI or why she see’s a doctor and they “do” nothing to help her. She absolutely would not understand going through treatements, even minimally, for cc. There is some oral chem (Xeloda) and that could be an option , but you still have to watch blood counts to make sure it is safe for chemo and even that could be too much. For my mom pain would be the greatest concern. And as others have said, I would turn to Hospice to help manage this. The other rambling thought I have is that each person reacts differently to chemo and the side effects can be very confusing and challenging to manage. While it appears your family is sharing the caregiving responsibility, the challenges that can come with cc can test the most dedicated caregiver, coupled with dementia and I would suggest looking (before you NEED) for a care facility in case the need arises. If your mom can understand the treatements and the need to go through them, then this may sway your overall plan.

Sorry, a bit of a ramble but hopefully of some value.

Bz

Dear Peggy…..Welcome to our site. It appears that your Mom has been diagnosed recently and not much has been discussed regarding her status of this disease. I understand your concern of treatment vs. quality of life however, certain treatments may lead to just that; a better quality of life. I suppose it depends on the type of intervention chosen. You are speaking of jaundice. Generally, stents are used for biliary drainage, which in turn eliminate the itching associated with biliary obstruction and that in itself improves quality of life. Resections are another issue. Your Mom being elderly in addition to suffering from dementia certainly puts a different spin on the situation.
Pain is another issue and it can be addressed if and when it happens. I think that with time things will fall in place for you, but I do understand your concerns. Your appointment with the physicians will shed more light on the situation but, do not anticipate the most horrible of outcomes, because, it simply is not always the case.
I am hoping for others to chime in and share their experiences with you.
All my best wishes,
Marion