Thank you for this post. I require 24/7 uninterrupted nursing for total care with all ADLs and complex medical tasks.
Being this dependent on other people is inherently difficult emotionally and logistically, I cannot of course deny that.
But I think I could make peace with it pretty easily if the appropriate care were actually available. My experience descending through the whole spectrum of care needs from 'nothing' to '22 hrs aide care a week' and so on has always been the same in that regard.
The bad part is relying on systems and people who are consistently inconsistent, incompetent, negligent, and often abusive. I think I could live quite a happy life in my situation if my caregivers had the relevant skills and approach. I am working towards that.
You're so right that even with other disabled people, mentioning caregivers can lead balloon the whole conversation. Especially when your needs are high. It feels like when you mention it, it becomes the totality of how others see you. I am not immune to this: before I became bedbound and needed this level of care, the facts of my friend's similar situation dominated my mental image of him.
I think it is unfortunately quite a natural human response to frame your understanding of someone around what feel to you like the most pressing and salient facts of their existence. "My friend who loves riding bikes," "my cousin with the shaved head," "my friend who is bedbound and needs 24/7 care."
I will say I have learned an enormous amount from this situation. Insight into human behavior and interaction first and foremost. I went straight from the level of disability that severely isolates you to the level where I am unable to be alone 24/7. It was not a pleasant learning curve, but what I have gained is applicable to many different areas of life.
