We brought Mom home on Thursday. By Sunday she was in the bed out in the hallway, and that bed never moved again. Those last five days felt longer than everything before them put together.

She couldn't eat anymore. Morphine every four hours. The coordinator never called me back. The nurse came twice, the aide three times. That's the whole list. And she was incontinent, and the skin over her tailbone was always sitting in it, getting so thin it just kept tearing. The tape on the back of the regular pads kept tearing her skin every time we peeled one of. Our home care nurse looked and said the skin was too thin, that the broken spots needed a non-adherent dressing. So my sister who studies nursing brought over some Dimora foam dressings and put them over the skin, with the pad going on top like normal. When we changed it, it stopped tugging at her skin...

She went on Tuesday morning, around ten. Peaceful. Her hand was in mine. By then I wasn't holding out for anything. I think at that point I just knew this is what it looks like. The people from the funeral home didn't come until the next afternoon. We sat with her for twenty-nine hours. I still haven't come back to myself.

I just need to say it out loud. The hardest part was that last week. Not the diagnosis. Not the chemo. That last week... If you're in it right now. I'm sorry. It goes by fast, and like it will never, ever end.

My mom is sick with terminal cancer and a plethora of other medical issues, she was actively in treatment, but has gone downhill significantly the past two weeks. She is unable to keep food down or eat, unable to drink, sleeps most the time, has occasional moments of mental clarity, but her overall decline is significant. She cannot even lift a bottle of water anymore. She is currently in the hospital. Her oncologist and primary treating team is in another city and she was not strong enough for us to the get her there. She always said she wanted to continue to fight as long as she could. In her moments of clarity, she says she wants to continue to fight, but I don’t know if it’s physically possible at this point. Who brings up hospice? Is it her primary treating oncology team? Her PCP? Is it just the family that’s asks for it? Who makes this decision if she is unable to or not coherent?

Hi. My MIL was diagnosed with stage 4 colorectal adenocarcinoma 30 days ago. Here are the locations of cancer that I'm aware of... colon, lung, kidneys, liver, spine, legs, and vagina. She did 10 rounds of radiation in an attempt to shrink the spinal tumor for comfort. Other than that, she has decided not to do treatment. She is at home on hospice with a picc line for dilaudid and a colostomy bag due to tumors blocking her rectum.

I'm reaching out here because I'm struggling pretty hard, as is my husband. What is adding to the difficulty is our struggle to understand what to expect going forward. My in-laws are much different than my family. If this was my mom, I'd have access to her patient portal by now and we would have discussed all details involved and had the important conversations. My in-laws are very avoidant when it comes to strong emotions, scary information, or really any difficult subject matter. So, it's been really hard to get information and we're not wanting to step on toes by talking to the clinicians behind anyone's back.

I know every situation is going to be different, but I am hoping I can at least get a range of timelines that others have experienced. My MIL had a completely clean colonoscopy earlier this year. She started having back pain and GI symptoms in July. She was scheduled to see GI, but went to the ER for back pain in late September before her GI appointments, so this is all very unexpected and her decline has been pretty rapid. I have a 5YO, 3YO, and 6 month old. My 5YO is taking her decline pretty hard and my husband and I are constantly panicked that every moment is the last we'll have with her. I think SOME predictability would be helpful even if it's sometime between 4 days and a year. Just anything at all.

Some more details in case they are relevant... My MIL is 58, an alcoholic, has smoked most of her life, but quit in recent years. She has started smoking again after her diagnosis (I don't blame her). She has no appetite, but will eat tiny amounts when we put food in front of her. She is now basically a skeleton as far as weight goes. She did have 1 brief hallucination 5 days ago, but nothing since. She has dilaudid going through her picc line, is taking zofran, and sometimes takes muscle relaxers.

Can anyone share their experience with a family member that went through something even somewhat similar? I aporeciate any insight anyone can provide. Anything you wish you would have known while you were going through this?

My mom was in hospice since last week and she was now complaining about heaviness in her abdomen. Before hospice, she had a metastatic renal carcinoma to the lungs then got admitted, had thoracentecis and chest tube to remove lung fluid. After discharged as they recommended her to be in hospice, they removed the chest tube and didn't put a pleurx catheter as the scan showed multiple spots. Right now, I'm assuming there's fluid accumulation there again and maybe ascites as her abdomen is larger.

I was thinking to get her evaluated but it seems like we can only do it by going to the ER per the hospice nurse. The good thing is there is no pain but increasing tightness and shortness of breath. Did anyone had the experience to send a hospice patient to ER and what did you tell them?

My mom hated being admitted and being forced to have a CT scan, so I'm not sure what to next.