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She was prescribed Klonopin, and took it the first night. But she didn't like the morning sluggishness. Now she refuses to take it at all. She's been screaming all night. I've been in to wake her three times and she still refuses to take the meds. I tell her she needs it so she can sleep through the night. She says she'll sleep tomorrow. And she probably will. But I don't have that luxury. In addition to caring for her in her home full time, I'm trying to hang onto my work-at-home job.

I tried turning on her bedside lamp. She just got up and went into the den to "sleep" on the sofa. I just put on some soft music out there. Let's see if that helps.

Looks like I'm in for a long night. Any ideas?

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Oh you poor thing! And poor Mom.

My husband has taken Klonopin for REM sleep behavior disorder (RBD) for about a quarter of a century. For us it is a little miracle pill. He has not had to increase the dosage over the years. If he misses a night he has a problem that night and if he takes it the next night there is no problem. I don't remember the very earliest days, but certainly he has had no ongoing side effects. I don't think that one morning of feeling sluggish is proof the med is going to give Mom ongoing side effects.

But I don't need to convince you, do I? Could you discuss the issue with her doctor and perhaps reduce the dose to start with? Switch to a different brand so the pill looks different and tell Mom it is a new improved version?

When my husband developed Lewy Body Dementia he also acquired different and dreadful sleep issues. As you say, this isn't just a problem for the person with the disease -- it is perhaps an even more significant problem for the caregiver. I had friends and relatives staying overnight so I could sleep in another room, I used a respite volunteer so I could take naps. But the bottom line was this was the deal-breaker. Either the problem got solved or I could not keep my husband at home. His sleep doctor and dementia doctor conferred and came up with another drug, and we are now in our 10th year of living with Lewy at home.

All of which is to say, Mom needs to take her Klonopin ... or at least take it long enough to determine whether it will work for her and whether the perceived side effect will go away after a few days. And if she is one of the minority for whom Klonopin is not effective, then another med needs to be tried, until you find one that works.

Please work with her doctor until a solution is found. If you really want to keep her at home with you, solving this problem is essential.
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