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 Sleepless nights 
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Joined: Thu Jun 01, 2017 2:28 am
Posts: 4
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Post Sleepless nights
Hi everyone,
I am the primary caregiver for my mother who has LBD. She's 87. She was in a nursing home(my brothers doing) and I fought them in court and got her out of that horrible place. She now resides permanently with me. I left my job, my home and everything to move back to take care of her. It's really hard but you only have one mom and they deserve to be cared for properly- especially with LBD. Trust me- it's hard. Over the course of about 5 years now I have become extremely versed in Lewy body , symptoms of illnesses related to and just about everything Lewy body has to throw at us. Until now ! So my question is --- What can you safely give to help with sleep ? I'm pulling my hair out and haven't slept in over 6 months. My mother obviously not sleeping either. She currently only takes Excelon 4.5 mg 2x a day. Also take 600 mg Ibuprofin as needed for leg pains. So many of you will say not to give her second dose of excelon later in day. Well, if I don't she hallucinates and cries and carries on most of the night. And when I do give her 2nd dose it seems to keep her up really late also. So I am not sure what to do at this point. Her dr is clueless so I have to tell him. I was considering lowest possible dose of Temazapam as needed. Not every night !!! I've tried Melatonin and did nothing. She's in later stage as sleeps most day and needs assistance with everything. I've tried keeping her up during day but doesn't work. So any advice on a sleep aid ( safe for LBD) would be deeply appreciated. Many thanks !!!


Thu Jun 01, 2017 2:53 am
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Joined: Mon Apr 03, 2017 8:13 pm
Posts: 43
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Post Re: Sleepless nights
Lauramiami wrote:
So my question is --- What can you safely give to help with sleep ? I'm pulling my hair out and haven't slept in over 6 months.



My husband with LBD also has REM sleep disorder - and his actions during sleep are dangerous. The doctor (reluctantly) prescribed Clonazepam 0.5mg so that he will sleep well. Her (the doc) point was that sleeping meds can be dangerous, but sometimes it is worth the risk to see if a bigger problem can be solved. Not everyone is sensitive to everything. As they say, "go low and go slow." Blessings.

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jjKing, caregiver


Sat Jun 03, 2017 10:04 pm
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Joined: Thu Jun 01, 2017 2:28 am
Posts: 4
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Post Re: Sleepless nights
Thank you JamieKing for your advice. Her Dr prescribed Tremazapam 15mg. Going to take slow. This is a long, tough road for those of us caring for LBD loved ones . It's just nice knowing there's somewhere I can go to share my frustrations and gain a little more insight .Wishing you the best and again- thank you!


Sun Jun 04, 2017 2:02 am
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Joined: Wed Aug 02, 2017 1:22 am
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Post Re: Sleepless nights
Hey, you said it right Laura. It is indeed a long tough road for those of us caring for LBD. But it is nice knowing that I can share my feelings and get more wisdom from all you guys. My father with LBD also has the sleep disorder. Both I and my father had sleepless nights then. Our doctor also prescribed him Clonazepam 0.5mg and now he sleeps well. The main problem I am facing now is his dental care. As self-directed brushing and flossing is not being done well by him, I now brush at the same time as my father so that he could imitate what I am doing. Recently he had his tooth fixed from one of the general dental services in Ottawa. He had tooth decay in more than 2 of his teeth. Is he having dental problems due to the side effects of the medication he is taking now?
Does your mother have any dental problems?


Thu Aug 03, 2017 12:31 am
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