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Originally Posted by luvyrself
-------Your boyfriend is very lucky that you have training as a nurse. Because of that, you can yourself give him an exceptional level of care. Still, the system can be so frustrating. My partner has serious health conditions (cardiomyopathy, diabetes) and is not proactive with his healthcare, so a lot falls on my shoulders even though we have excellent insurance. For regular folks like me, with no medical training, it is so difficult. Especially since each provider has its own agenda which is often hard to decipher.
Imagine how difficult this is for an older or disabled person with failing health and some degree of dementia. Someone I know worked for a hospital system as a counselor for the elderly with lesser funds. Sadly, with todays healthcare system, I think every patient needs an advocate like you have been for your boyfriend. Wishful thinking unless we speak up, organize, lobby hard, vote, etc. You are doing such a good job. You are a very special person!
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Thank you, luv. I try, and I have the skill set to make a big difference. Hospitals aren't typically dealing with a very debilitated elder who happens to have the advocacy that my guy gets through me. I think it's somewhat pissing them off. I'm not the only nurse with a sick significant other. But most nurses with a sick elderly partner are elderly themselves and not able to do as much of the care as I do. Our situation is unusual, if not unique. My boyfriend is awfully lucky. I won't be that lucky myself. It's much harder to advocate for yourself when you are sick . . . as I have found.
You identify a core issue when you mention provider's agendas. They do have them and there isn't the transparency that we would wish. I'm also coming to suspect that the old-fashioned paternalism that doctors used to be accused of isn't dead. Doctors are not talking with me as one intelligent person to another. It's patronizing. They don't really want to share with me their thinking. I have to discern that as best I can. Instead they send a palliative care nurse to the room to talk around in circles. As you rightly point out, they can get away with a lot when they deal with lay people. I think it intensely annoys them to get as much push back from a person like me. They are just not used to that . . . especially in a VA facility, which traditionally tends to serve a population that is not the most able to be demanding or challenging. Historically, the VA attracted a lot of the down and out of society.
I wish you well in your efforts on behalf of your partner. I truly know how tough it can be. When I worked privately for wealthy families, they would tell me that part of why they kept me around was just to have someone explain things to them. These were often well-educated people of means and with connections. Yet, in a hospital setting, they felt at the mercy of the system.
We need to change things. I agree with you that we will need to do that through political processes. And we just need to be aware of "agendas." Those tend to boil down to matters of money. That doesn't mean that all the players are evil with nefarious intentions. But we need to understand the pressures that even good people are under. We need always to ask, "How is this person being incentivised in their thinking?"