My mother, who lives with my father and older sister, has had 16 strokes in the past 2 years. 14 of the strokes were TIA, with the last 2 being Ischemic. She is only 64 years old. Her mobility is extremely limited. We are now facing a complete lack of appetite along with Sundowners. The medical professionals she has, have not been helpful in managing symptoms. I have scheduled her with a Neuropsychiatrist to evaluate her emotional state and perhaps start her on an anti-depressant/anti-anxiety medication. She is up all night stating she is not safe and demanding that they hold her. I have ordered her a weighted blanket to help ease some of her anxiety. Any suggestions would be greatly appreciated.
If she isn't mobile, her appetite could be diminished as she doesn't need as many calories, but if she's refusing any food, perhaps you can try various items, even if they aren't the healthiest options, to get something into her.
If this sun-downing was sudden onset, has anyone checked her for UTI? When I first joined and would read so many suggestions to test for UTI, I was skeptical. Our mother never had true sun-downing, but did develop this OCD behavior every night before bed. Initially once or twice/night a few nights, but eventually it became a nightly marathon of 1-1.5 hours. She would check the door lock, sidelights, dishwasher and LR, over and over again! We had a camera near the front door, so this was observed (she was living alone in her own condo then.) Couldn't tell what she was checking in the kitchen until OB was visiting one time, and he saw her do it. He would try calling her when she would start this, and tell her to go to bed. First time she said she was just going, but it took several more rounds. Second time she told him he got her out of bed (not true!) I told him calling won't work as she doesn't realize she is doing this and wouldn't believe you if you told her! I suggested he just turn the sound off on his phone until later, when she would go to bed.
To the best of my knowledge, she did not do this after we moved her to MC. However, the first UTI came with full-blown sun-downing and the staff could not redirect her or get her to stop! Along with antibiotics, the doc ordered an anti-anxiety, lowest dose, and she only needed it until the UTI resolved. It was just enough to take the "edge" off and keep her calm. She was never doped up. The nice thing about this med (Lorazepam) is it works first time, every time. No need for it to build up in the system or wean off it when not needed.
That said, what worked for her and what others are suggesting for medications or OTCs might not be right for your mother. There can be interactions. There can be times when it doesn't work or makes things worse. You need to work with her doctors (and pharmacist, regarding side-effects and/or interactions) to find the right medication to help calm her.
Working with her, if possible, to slowly adjust her sleep cycle to be more normal could be helpful. Even if she's still anxious or paranoid, it will be easier on your dad and sister to be able to work with her, reassure her, try to redirect her, etc during NORMAL hours and allow them to get necessary sleep!
Much as I try to avoid medications, sometimes it is needed to help. Trying to keep her more "active" during the day, and not allowing long naps might help adjust her sleep-wake cycle. It won't likely happen overnight, but perhaps in small intervals they can make some progress. Meanwhile, I would reach out to her doctors, to see what they might suggest. If some medication works and keeps her calm and helps dad and sis to relax a bit, it would be a win-win!
(BTW, subsequent UTIs for mom have resulted in night-time bed wetting, not sun-downing. UTIs do odd things to elders, esp those with dementia! If possible, make sure they do a culture, not just the dip stick test. Mom also had her first known stroke earlier this month, but still feisty as ever despite the resulting right side weakness, slurring, etc. She hasn't walked on her own in quite some time, mostly because she didn't get enough "exercise", sitting too much and was too weak to stand/walk and gained weight at the same time! She's now 97, finishing up year 4 at MC.)