My Mom was diagnosed 3 years ago with LBD, she actually does pretty well on most issues, the few areas we have a problem is bathing and boredom, the most difficult problem is the sleep issue though. She usually goes to bed about 8:30PM, she gets Trazodone and 75mg of Seroquel and a couple of sprays of Melatonin, the Seroquel helps a little bit, and I think it has a somewhat good effect as far as calmness goes in the daytime. My Mom and my Mom's twin live with my husband and I, my Mom's Sister keeps an eye on her when my husband and I have to work, we're self employed so we have split hours, and also work at home the rest of the time. We have a baby monitor and most of the time my Mom's sleep is restless, also about 2, 3 and 4AM she starts going into my Aunt's room to see if she's awake, this is obviously causing a problem because my Aunt's sleep gets interrupted, she tells her to go back to bed. My Mom has a fear of being alone and the hallucinations seem to trigger the fear in the middle of the night.  we've tried anti-depressants in the past and nothing worked. We can deal with everything else but the sleep issue has proven very difficult for us. We have to see the Neurologist on Mon. so I'm hoping I could go there with some suggestions. Thanks for any help you can provide.

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Just an update, the Neurologist feels she's stable and would like to keep the meds the same right now. Something interesting though, and I know because of LBD nothing ever stays the same, but she's slept through the night the past couple of nights, we gave her a piece of raisin bread right before bed. I have to wonder if maybe her waking up at 2, 3, 4 in the morning is due to hunger? we'll keep doing it and see if that helps.
Helpful Answer (1)

Hi, and thank you for responding.

Yes, the Trazodone and Seroquel are only given at night, and will definitely talk to the Neurologist about increasing the dosage unless he has other ideas.

As far as the restlessness goes, it's just what I hear on the monitor, sounds like groaning, sometimes garbled talking in her sleep, also my Mom has COPD, a mild form of it, but my Mom was always a mouth open sleeper, I don't know if she's kicking her legs or punching, but I think I would hear some of those sounds on the monitor and I don't hear them.

The Seroquel at some point should help with the hallucinations, so I've been told. At least now the hallucinations aren't violent like they were in the beginning, but they're really a distraction. When I make dinner and call her down she gets mad because I didn't call all the girls down, also she thinks the TV is talking to her directly, at times that's fine but at other times she goes running from the room because she doesn't have her hair done or makeup on.

I know I need to have a sense of humor about some of these behaviors she exhibits, and I actually have a very good sense of humor, but this is so different, this is my Mom, and I have a difficult time accepting her different behaviors, and I'm having a hard time not being able to see things as she sees them, and realizing that what I consider helpful doesn't help her at all because her mind isn't working the way it did 10 years ago, even 5 years ago.

I wish there was some kid of adult day care center around here where I could leave her there for a few hours and she could experience being out with other people, something she always loved doing, but since she walked out of the house and she was missing for a couple of hours last Aug. our house has become Ft. Knox, she has the ankle bracelet on in case she did get out, but I feel bad that she just can't go for a walk when she wants, and that she has no ability to understand why she just can't take a walk.

Sorry for rambling.
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Are both the Trazodone and the Seroquel given only at night? Since you feel the Seroquel is helpful I think I'd ask about increasing the dose.

When you say that Mom's sleep is restless, does she by any chance look like she is acting out her dreams? Are her legs pumping as if she were running, does she punch or kick? There are different treatments for this behavior. Ask the doctor about REM Sleep Behavior Disorder. If it sounds like Mom has that (very common in LBD) perhaps that can be treated.

Sleep is disturbed in many kinds of dementia. LBD seems particularly hard-hit in this regard. Sleeping through the night is not only healthful for Mom, but it is important for the rest of the household, too.

A new drug is being investigated (I think it is in trial now) that should help LBD and Parkinson's patients with hallucinations. Wouldn't that be great?

Good luck with the appointment on Monday!
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