For 21 years of my life, I didn't have a caretaker. I am completely dependent on another, and for 21 years that another was my mom. Affording a caretaker is indeed a financial struggle, but it wasn't impossible for my family. The real reason why we took so long to find one, is one that I think many disabled people might relate to: as someone who never outgrew the childhood need for basic care, I was often interpreted as a half human being with no real need for independence or boundaries from family.
Now, there are two things you need to know about my family. The first one is that they are very close to each other, and the family unity is highly valued. That includes Sunday barbecues, vacationing together, lots of birthday parties and many other Norman Rockwell style activities. The second thing is that all of my family's values and orientations are completely opposed to mine. Most adults in this situation would probably keep their distance and just skip family reunions, but some disabled adults don't get to choose what they want to do on a Saturday night.
That would all be okay if I at least felt like I could actually BE in these family reunions, but another consequence of being seen as an over aged infant is that it turns out you're not seen at all, not heard at all, specially when your words don't fit with whatever the real grownups are saying. And now that I've been lucky enough to leave my family bubble a little bit, I got to realize that this image holds true not only in my family, but almost everywhere I go to, so I guess it pretty much sucks no matter what.