Posts by shadowtinker742

Betty Rodriguez5 said:Hello,
I totally get where you're coming from—I went through this exact thing with my husband recently. Unfortunately, the illness was just too much for him. Basically, the patient needs to be officially registered in the system as a palliative patient, and based on that, they have access to a mobile palliative team (there's one in Chicago, though I'm not sure how it works in other cities); the primary care doctor issues the order. While I was busy getting all that sorted out, my husband passed away. It really would have helped us if they had started coming by, mostly because it saves those constant trips to the ER, and I honestly believe they might spot the signs that the end is nearing—since they deal with this every day—which we definitely didn't catch. Just keep in mind they won't be at your house 24/7. There’s a doctor on that team too, so they can handle IVs for pain management and things like that. My husband used pain patches (Durogesic)—they come in different strengths, prescribed by the doctor, and you just stick them on the skin (you rotate the spot each time) and they last about three days. They worked pretty well for him.
The feeding tube part is also familiar to me. A home health nurse can handle most of that for you. You should ask her to show you how it's done. It’s not rocket science, but unfortunately, you end up having to act as the caregiver, which means 24-hour supervision. For us, the nights were the absolute worst.
Also, a home health nurse can administer an IV if she knows how, but given the fluid in the lungs—since we dealt with that too, including the drain—most people tend to pass on that. They don't want to take the risk in that specific situation. Hospital conditions are just more controlled compared to being at home.
I’d suggest investing in a used medical bed (you can usually find them for $2500-$1167). You can always sell it later, and man, is it worth it.
Regardless, in this day and age, nobody should have to suffer in their final days; medicine has advanced far too much for that.
Anyway, I hope this helps.
Best, Betty Rodriguez5

Thank you for such a detailed response.
I am so sorry you had to go through that.

My grandmother passed away yesterday.

hello,

Does anyone have any insight into how palliative care actually works here in the States?

My grandmother is an oncology patient in the terminal stage of breast cancer—it’s metastasized to her lungs and other organs. She was just discharged from the hospital today after spending a week in pulmonology, where they drained about 7 liters of fluid from her lungs (she’s currently using a drain).
The situation is pretty dire, honestly. She’s in massive pain and moaning constantly... it’s just heartbreaking to watch and listen to. They even brought home an oxygen tank for her.

Her doctor "arranged" for a home health nurse to come by once a day to manage the drain and whatever else she needs, I guess..
On top of all that, she has a colostomy bag from when she beat colon cancer twenty years ago, which needs changing every single day.

We’re all in a bit of a fog right now. Since she lives alone, we're feeling the pressure—luckily my mom (her daughter) lives nearby, so she’s been with her almost all day, but what are we going to do about the nights?

To be honest, I’m not entirely sure what her current treatment plan is. I know she’s been doing chemo all year, but she hasn't had radiation.

What can we do for pain management? Is it possible to get morphine through a local pharmacy?
/we haven't dealt with anything like this in our family before, so we're pretty much flying blind)

Noble thanks to everyone for the helpful advice.