I was in the LW's shoes (for six years while my mother died very slowly from vascular dementia), and I know exactly what you're talking about. Although I was in the fortunate situation of my mom having enough money to pay for caregivers, my experience was very much the same as Betsyj's. Even if you can pay for help, managing care and finances and health issues for an incapacitated adult is a full-time job, and yes, there are many things only you can do. Caregivers (ones vetted by an agency even) stole money, the good ones burned out and moved on, one time I came over (I visited every day to make sure everything was okay) to find that the male caregiver had made my mother up so garishly it frightened me, and the live-in we hired turned out to be a proselytizing Christian with chronic fatigue syndrome. We needed day, evening, night and weekend care, and even so, one time my mom managed to fall when there were three caregivers in her home.

Having her live with me was not an option--I live in a rustic situation with steep draws on either side of me, wood heat, one bathroom for a very small two-story house, etc.; plus she was also extremely narcissistic and I was the "bad" kid whom she never approved of. Nevertheless, I was the one she decided would take care of her when she became unable to take care of herself. My sister was overseas, my brother a ten-hour drive away, and both of them were very busy. Everyone I've ever talked to seems to agree that for whatever reason, this burden almost always ends up falling on one child.

NYCGrrrl, I believe you when you say you're not expecting much and are being considerate about what you're hoping for. My social life pretty much dried up while I cared for my mom, and believe me, I didn't even have the energy to be demanding. I think several things come into play. One, the situation freaks people out. It raises the specter that they themselves might find themselves in a similar situation (either as the impaired one or the caregiver) and the horror of it is more than they can deal with. Two, humans do not seem to be hard-wired for empathy. Until they live through this themselves, no matter how good a person they are, they just cannot imagine how hard it is and how much help is required. Three, I know I was not at my most fun and lively. I was exhausted all the time and near tears. Every time it seemed the situation stabilized, my mother had another stroke and the level of care I'd so doggedly put together was no longer sufficient. People don't mean to be uncaring or insensitive, but they do have their own stuff that they're dealing with, too, and however unconsciously, I think they tend to avoid people who are near the end of their rope. There is the occasional person who thrives on taking care of others, but I think this proclivity may be a gift like a gift for teaching or music or drawing. I don't mean that the rest of us are egocentric clods, but my experience has been that some people just have this gift. But I don't think there are enough of them to go around these days, especially with everyone having to work so hard just to make enough money to get by.

I do feel that social changes have occurred so rapidly in our society that we don't have any systems in place for helping people with this. Other posters who have discussed the financial complexities of obtaining care are correct--lots of people fall through the cracks. People are living longer so there are more people with dementia. We no longer have family situations (except rarely) where there are adults who aren't working outside the home. A lot of churches have changed, too, it seems to me, in terms of what they feel their mission is. I have watched in disgust as my husband's father has slipped further and further into dementia with NO help whatsoever, or even any interest in helping from his former congregation! This is a man who, as a minister, made countless, countless visits to invalids, shut-ins, people in hospitals, people in need, etc. And yes, they are aware of his situation. They're much more interested, it seems, in building a big gymnasium to attract more young members to the congregation.

At any rate, we, as individuals and a society, need to figure out some systems to deal with this soon! Baby boomers are aging and there are a lot of us. We need to figure out how to organize local assistance and networks to help people like the LW who don't have enough resources. We need to figure out how to cultivate more cooperative social circles who can help each other out. This could be us someday, demented and out of it. I have no children to take care of me and I can't expect any member of my family to undertake this burden. I honestly do think we need to start reassessing our attitudes towards euthanasia. And yes, I'm willing to volunteer if I'm no longer able to care for myself. None of us is going to live forever. This is just my personal belief, of course. But I don't want anyone else's health and vitality, nor societal resources, to be used up on me if I end up in the position of needing about twelve people to look after me. (I, like other posters, have also been dealing with lingering, long term health effects of long term caregiving. It takes a physical toll.)

So we should start thinking about it now, before we're too incapacitated to do anything about it. This is a problem that's only going to become more widespread, and we're the only ones who can do anything about it.