mindhug, my heart goes out to you. It seems as though your instincts are telling you to be very cautious, and with good reason. The extreme prejudice, misunderstanding, stigmatization and to put it nicely, “ignorance” displayed by many people, especially medical professionals, has scarred me as much as the TBI itself did, and I understand your desire to remain outside of the power of an institutionalized environment. You sum it up perfectly: “due to ego-protection and fear of misunderstanding and re-traumatization.”
Because it is so traumatizing and re-traumatizing to have to deal with the insufferable misconceptions and bias that seems ever-present about TBI. Breathe and be still, but please know that you have people who can relate and understand, so while you may feel alone, you’re not the only one with such fears and feelings.
Since your parents are insisting that you go to a board and care or a psychiatric hospital, what are your thoughts about finding another place to live? It’s so scary, but there are some places that can actually be okay. If given a choice, board and care seems like a much less restrictive type of place to go to.
My 89 year-old father in Florida has Parkinson’s Disease and Dementia, and wound up getting declared “incompetent” and permanently involuntarily institutionalized because he refused to even consider a board and care home when he was losing his ability to live independently. That was done to him through an abusive Probate Guardianship procedure on Florida by a greedy “Professional Guardian” who wanted his money. She got his money and he paid dearly. It can happen even in my state of California. It’s so scary what people can get away with.
From my own personal experience, I have realized that having a diagnoses of “depression” is not something I want to have in my medical records moving forward. I wish I could delete it completely. I’ve even thought about changing my identity and finding a way to lose it, but I don’t know how I’d do that and still get my benefits. It’s just too easy for people to abuse and misuse a psych diagnosis and hold it against a person. I SUPPORT YOU IN AVOIDING A PSYCH HOSPITAL AT ALL COSTS. Maybe there is a proper role for Psych Hospitalization, but not as a proxy, or replacement, for housing.
If your parents need a break, can they get some help from an entity like Respite, or any distant family or friends? TBI can be so hard on our families, and it’s such a challenge, but if you can come up with a plan to address their concerns, it may be worthwhile.
I feel that too often psych hospitals do more harm than good, and it’s so scary that so few medical “professionals” have an adequate ability to make good judgments about TBI vs. mental illness. I’m so scared of it that I’ve been tapering off an antidepressant medication and am just going to tell my doctors that I have no depression, rather than allow the stigma and potential for abuse to continue. I admit that I cannot trust my big HMO physicians at all: they’ve made too many serious mistakes.
It has felt so very de-humanizing to have to face the abuse that the medical profession can hand out. Please keep us posted, and good for you for knowing what works and what doesn’t!