You bring up a very good point. Dana Reeve, wife of the actor Christopher Reeve, who became a quadriplegic after a horse riding accident, wrote and spoke extensively about how to ask for help. Her most important point was - BE SPECFIC. She would make a list of everything with which she needed help. When people would call and say - if you ever need any help, let me know - she would whip out her list and try to match a task with what she knew each person was capable of doing. For example, if it was an older person, she may have asked - what day can you come over and play CD' s and listen to the music with Chris?

If it was a strong, young person, she may have said - what evening this week can you come and help get Chris ready for bed?

Yes, she had money to hire help, but not enough for 24/7 round the clock help for all that needed doing. She relied a lot on volunteer friends and relatives.

So when someone asks what can they do, tell them specifically, including asking for a day and time commitment. That will quickly weed out those who truly want to help and those who don't.

joang

elizabeth* 9/2/14 Looking back, I would say people--including long-time friends and family-- no more want to be involved with a demented person than to fly to the moon. That's just the way it is. Even moving out-of-state to get "help" from family, the "help" was very spotty and dependent on if they had nothing else to do. And trust me, they usually had something else to do, be it children's activities or family getaways. Knowing they were leaving me isolated and stuck with DH never altered one minute of their vacation plans. Or work commitments, which of course you can't really argue with. S-i-l did usually come over and do the PM care in the last maybe three months, after DH was put on Hospice, but if he was working out-of the area or if the family was away, I would take over and do the care, even though exhausted and having trouble with the transfers by that time of night. Also in the last eight weeks or so, DD and s-i-l came over and cleaned the whole house for me. I was still watching the grands after school, and the kids plus DH who were all spilling drinks and food and making a mess were all really messing up the house. I had sold the NY house as you all know, and had purchased two houses in the Heartland--the little house for me and DH, and the big house for DD and her family. The idea was, as I've posted before, I think, that we would band together to get the children and DH cared for within the family, helping each other and keeping our money in our own pockets, instead of giving it to daycare and eldercare agencies, or the government. I would say that all in all it worked out in the end--but I could have used a lot more help than I actually got from the family. They did step up to the plate somewhat more in the last two or three weeks, when DH got extremely agitated and then slipped into a comatose state and then the final coma. They took over the children completely--stuck them in daycare and after school care--so Hospice and I could care for DH, with s-i-l coming over at night. DD even helped me with some bedside care one time at the end. (She is sooooo not the aide type.) But it was iffy…when DH died and I called s-i-l, he said he would call DD and then be right over. Well, he showed up two and a half hours later, and he never called DD. So hey. I think the truth is that if it's your spouse it's your job. Even the Hospice volunteer would give me the whole rundown of her busy schedule and commitments when she was trying to schedule in an hour to sit with DH. I felt like I was interfering with her life, and that she was doing me a huge favor. I actually asked her not to come back, but by that time DH was bad enough that I was not leaving the house for anything, so I never had to say that I felt uncomfortable with her attitude. Looking back now, I think I should have hired a little more help earlier than I did, and done a little more of the enjoyable activities that I gave up to be home all the time with DH (after work.) For instance, I should have paid his NY aide (who was always looking for more hours) to stay with him while I went down to NYC and did the Manhattan thing. I hired aides when I had to attend an out-of-town family funeral and when I had to go to Colorado to help a family member through a surgery, but I think I only hired aides one time so I could go do something fun or interesting (a harper's retreat in New Jersey), and that was a mistake--I should have done it more often . I don't regret buying the house for DD, as had anything happened to disable me, DH would have needed all our resources to care for him, and DD would have ended up with no inheritance. And DH had always made it clear that he wanted her to have a legacy. They both were in law enforcement, and that meant a lot to him. It is kind of freeing--I don't feel any compunction to conserve resources for my daughter's inheritance, as she already got it. She is talking about me setting up something for the grands, but I just laughed at her. She's obviously eyeing what estate I have left, but I'm not a complete idiot, and now I'm going to take care of me. Me. Me. Me. Yeah, and about time. Well, too much information, I suppose, but few people "get" this stuff except the folks on these forums.