My grandpa sits up all day and especially night off the side of the bed with his arms propped up off his walker. He's exhausted and falls asleep in that position. If I manage to convince him to lay down, I pick his legs up and swing him around to lay down, tuck him in and position the bed to where he's almost sitting, it only takes about 5 minutes for him to swing the covers off and sit at the edge again. He gets up every so often to pace the room (to help him rid of gas, but we fixed his gas problem now so idk if he is just confused and mentally thinks he needs to be sitting and walking all the time). When I tell him he needs to get in bed and sleep he has coined the phrase "one more minute". But he's so stubborn that this one minute becomes 30 mins to even hours. Obviously I get frustrated because I can't leave him in that position all night where if he loses control he could fall, and I would not be able to pick him up, and I can't leave him to go back to sleep on his own as he needs assistance lifting his legs into bed. We told the doctor this but he didn't think much of it and said maybe it was time we put him in a nursing home, which is something my family will never consider doing, culturally. The doctor didn't prescribe anything. We tried melatonin with minimum to no effect. The max length we've been able to get him to sleep is about 2 hours at a time, usually during the day though. I'm assuming it's dementia, but could there be any other reason he just can't stay in bed?
Usually dementia progresses to a point where the person cannot be adequately cared for in a private home by one person. If a care center is not acceptable to your family, an alternative would be to bring some aspects of a care center into the home. Having someone with your grandpa all night would address the fall risks and let family members get needed sleep.
Doctors who dismiss the sleep disturbances drive me nuts! That was the first dementia symptom my husband's neurologist addressed. It might not have been medically the worst symptom for my husband, but I simply could not have kept him home if I couldn't get decent sleep. The neurologist and a sleep psychiatrist consulted and came up with a medication that solved our issue. (I was able to keep hubby home the full 10 years of his dementia.)
I think you need some better medical support, and that you need to acknowledge dementia may beyond what your family can handle without help. Bring in some help.
Nothing to do with memory or awareness, but to do with brain function - it could be something along these lines: for some reason, goodness knows what, his brain is telling him he's got to get moving even when his body can't comply. The poor man must be physically even more exhausted than you are. I dimly remember something about blood pressure being a suspect in this, too - is his under control?
At this point I am completely out of my depth and will shut up. But a neurologist or geripsychiatrist might be willing to investigate and find out more, and possibly offer strategies that will help. Can you get him to one?
I understand the insistence on keeping your grandfather with the family; but I hope this doesn't extend to rejecting all outside care. It isn't practical or reasonable to expect to cope alone with broken nights indefinitely - what about hiring professional support to cover you while you sleep?
Of course, now as her dementia has progressed considerably, she's lost the ability to move her legs that much, so, she doesn't stay on the go that way. Now she actually wants to lay down and take naps during the day. I think that phase has moved to another one.
If yes, then consider putting his mattress on the floor. Then he cannot sit at the edge of the bed. My mom did sort of the same. Except with her she would slide to the floor after sitting on the edge of the bed. Turns out her foot would tap around until it hit air and then would go to the floor and her other foot would follow and then she would sit and eventually she just started sliding to the floor rather than sitting.
Once I moved her mattress to the floor, problem solved. Her foot doesn't drop far when it wanders and even if she does slide she won't be going far. I sleep better and so does she. Yes people give me funny looks if they learn her mattress is on the floor but I say oh well, if they are so concerned about it they can come and stay with her at night in her traditional bed.