Texanjana, I’m a caretaker advocate as well and can empathize with your frustrations. Caring for someone with a chronic illness is time consuming and emotionally draining and that’s on top of the emotions that naturally come when someone who you love has an ongoing health issue. It’s just not easy.

My concern with an outside party would be that you wouldn’t be in the loop as much as you might need to be. One thing I’ve learned along our journey, and I’m sorry if this sounds arrogant because it’s not meant to but I don’t trust that someone unrelated is going to manage my husband’s care with the tenacity and attention to detail that I do. I can’t put a number on the times I’ve caught something that wasn’t right or suggested something that really should have been an included part of the care; and would have been missed otherwise. And when it comes to the billing portion, it’s a nightmare. I run into issues all the time.

When I got to the point that I needed some relief, I started bringing my DH into the loop more and showing him how to navigate through it all. He’s from a different country and had never had to deal with anything like this before, so it was a slow process, but with a pretty rewarding result for both of us.

Is there anyway that your son can become more involved?

Is his disease backed by an organization? I'm not sure how to ask that question actually, but for example - my mom has Alzheimers and the Alzhemiers organization was great for information. So, if that is the case for you son - could you ask them or perhaps they can refer you to someone?

Do you have a family lawyer who can suggest someone.

I sure wish the Alzheimers organization had someone available to do the very thing you are asking because what you are going through, I know, is exhausting and you wonder if you are doing enough or doing the right thing. I sincerely wish you good luck.

Insurance companies can really be ruthless. I have never hired an advocate from a patient perspective but I have from a doctor perspective. I was able to recoup payments and get services approved that I would never have had I not hired someone to help me. I think in the case of a patient advocate it could be even more beneficial to have someone on your team because you might not be as well versed at looking out for some of the nonsense that they try to pull or who to complain to when they are doing something really shady.

Blfenton - I have a parent with Alzheimers and ITA. It has definitely been trial and error over the past several years, especially in the beginning.

Thanks for your insights and ideas. He has a serious mental illness-schizophrenia, and is not able to take on this role for himself right now. Maybe in the future he can, but this mental illness causes serious memory and cognitive deficits in addition to the other symptoms. So heartbreaking to see our once outgoing, brilliant son reduced and disabled by this horrible brain disorder. On the plus side, he has been back on meds since December and we are seeing some big improvements.

DH's brother has the same illness (definitely genetic), and my 94 yo FIL is still acting as his advocate. I don't want to be doing this if I live to be 94. DS2 does have a case manager at the area mental illness agency but so far she has not really been much help.

Thanks for these ideas: I am a member of NAMI and attend their support groups, so I am going to see if anyone in those groups has used an advocate. I will also ask our attorney. He set up the special needs trust for DS2 and I think he might know of someone.

Texas, I’m so sorry. That’s such a hard spot to be in for everyone involved. Your comment about fighting with insurance companies makes a lot more sense now. I really hope you’re able to find a resource that can offer some relief.