Reply to Lessons learning from supporting a terminally ill parent

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[quote=Anonymous][quote=Anonymous][quote=Anonymous]Thank you for this. And I'm sorry for your loss.

I would add one more thing--if your LO is hospitalized, you need to physically be there when the doctors are doing rounds. They will not call you when they are in the room, even if you leave a phone for them with a number. [/quote]

So true!! This was impossible to do during covid but being in the hospital in the morning is critical. I find that if I’m there between 8 and 11 i will catch rounds, follow-on discussions about tests or specialists, and sometimes will be able to help connect the dots between people.  (A technician comes in to schedule a procedure but might not have enough info to know that multiple things are happening and they need to be in a specific order for instance.  Or a nurse might not have had the chance to hear the attending physician wonder about possible concerns or symptoms and if you can flesh things out for the nurse then they can pay closer attention to things in question.)

Another good time to be at the hospital is for shift change at night.  For many of the same reasons above - meeting the overnight staff helps you if you want to call and check on someone overnight, and you can provide that more nuanced/detailed information about a patient which might not be fully captured in chart notes. Even just “my mom really loves a cup of tea before bed if that’s possible?” Can be helpful for everyone. But sometimes it’s also things like taking the nurse aside to say “Just a heads up that Dad will have a much easier time taking his meds if you give him apple or tomato juice instead of water to take them.”  Little th8ngs like that help the nurses, help the patient, and also let you know you’re making a difference.  [/quote]

PP back to add a few more things.

Be aware that VA now has a law that caregivers have to be allowed in with the patient. If there is another pandemic (or this starts getting really bad again), you might not ba allowed to leave, but you can be with your LO.

I found being there from 7-6 the first few days was really important. There are doctors coming in at odd times, and tests happening, and decisions being made about course of action. Sometimes they rounded super early. Other times they were delayed by an emergency and didn’t come around until the afternoon. And often one doctor dealing with one system (like the heart) won’t know what another doctor (like kidneys) are doing. We even had a situation where the “electrical” cardiologist and “plumber” cardiologist had 2 different plans.

Once things are better known and there is a course of action, you can just be there in the morning. And keep an eye on weekends, especially if your LO is checked in over the weekend. Testing is harder to get and inexperienced staff are on. [/quote]

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