Hello everyone. I’m new to this forum, but not LBD. My mother was diagnosed almost 3 years ago and my father and I have done pretty well acclimating to all the different and sudden changes of this horrible disease. We’ve found a way to cope with Capgras Syndrome, her wanting to continually go home (even though we are home), the delusions and hallucinations, and her degenerating physicality. What we’re struggling with now is her constant fight to stay awake. The past two weeks she has fought sleep and said she was not tired before hitting her head on the kitchen table and entertaining us with her snoring. Either my dad or myself will finally get her to agree to go lay down, but as soon as we get her tucked in, she refuses to put her head down on her pillow. Eventually, her head will fall to the pillow, but then she jerks awake and climbs out of bed.

I’m exhausted. Dad’s exhausted. My poor mother is beyond exhausted. Any ideas or advice would be greatly appreciated!

Kate

Welcome to the forum! My husband had the same issues and his neuro tried several medications including sedatives and antidepressants and nothing helped. Only Seroquel saved the day [or, should I say, night]. Presumably, the delusions and hallucinations were interrupting his sleep and he would want to get up almost as soon as he was in bed. Even when he slept it was not for more than a few hours, then he was up and wanting breakfast at 2AM. Both of us were suffering from sleep deprivation for at least three years.

I'm impressed you've been able to deal with the delusions and hallucinations! Excessive daytime sleepiness should be no problem for you!

Have you consulted Dr. Brad Boeve's "Continuum" paper? You will find it on lbda.org. He has a chart that lists each symptom of DLB and gives recommended medications.

Have you tried Provigil (or Nuvigil) to keep your mother awake during the day? Are you using anything sedating to try to get her to sleep at night?

Kate, does your mom see a doctor who specializes in dementia or who is very knowledgable about LBD? Have you discussed the sleeping issues with him or her?

For me, sleep issues were going to prevent me from keeping my husband at home. We had to get those settled before anything else could happen. Two sleep-deprived zombies living together was not a healthy situation! Hubby takes 3 meds to address the sleep problems and life is good. (Or as good as it can be with Lewy as a permanent boarder.) Don't give up hope. There are ways to deal with this! See your doctor or get a referal to a sleep specialist.

Thank you all so much for the information and advice - I sincerely appreciate it!

We were finally able to get mom to sleep tonight! Right after dinner, she brightened up some and told me she was tired. I told her that I thought she was too and asked if she would like to go sleep in her wonderful, comfortable, warm bed with her soft blankets. I have no clue as to how or why this worked tonight, but it worked and she’s now snoring in bed instead of at the kitchen table! Success!

Unfortunately, mom only sees her GP at this point in time. I’m not quite sure how to go about finding a doctor who specializes in dementia. My father is a retired doctor and I think he believes that if we find her someone, they will want to put her away for massive amounts of testing and never let her come home.

Most of the time I think my dad and I are able to handle the ups and downs through our tag-team approach. I’ve read and heard about so many drugs that help, but then read that you’re not supposed to give them to people with dementia. Recently, we’ve been giving my mom Risperadol twice a day. We had to cut back the dosage somewhat because she stopped remembering how to do the simplest of things (i.e. eat a hotdog, how to use her inhaler, etc).

All I want to do is the very best by my mom. I want to help with the delusions, hallucinations, paranoia, excessive sleepiness, etc in the most gentle way possible that doesn’t leave her drugged out of her mind. So it looks like I’ll be on the lookout for someone that can help us help her.

Willow, my husband nearly died from Risperdal [risperidone] two years ago. It's usually not recommended for Lewy or Parkinson's, as it can cause neuroleptic malignant syndrome. There are several articles you can find on the subject.

Glad your mom got some sleep!

Risperdal can work for some (with supposed LBD).

Does your father have some cognitive issues going on as well? I'm surprised at his opinions since he's an MD himself.

You can find a dementia specialist by calling the nearest Alzheimer's Association chapter (alz.org).

Kate, they didn't put my husband away for weeks of testing, and in fact finding good medical providers is what has enabled me to keep him home, safely. When I first heard the probable diagnosis of LBD, I looked it up. Oh dear. The things that might help the physical problems make the cognitive problems worse, and things that help with cognition intensify the physical problems. It was very discouraging. I was not hopeful at all at the first visit to the neurologist, but he was confident that at least some of the symptoms could be addressed, and improve the quality of our lives. As I said, the first symptom I desperately needed addressed was sleep issues, so that is where we started. Not everyone responds as dramatically to drug therapy as my husband does, but I think everyone deserves a good shot at it. There aren't any instant sure-thing answers, but I think the best place to start would be an evaluation by someone who specializes in dementia care.

Good luck to all three of you!

Kate, I agree with everyone else. Your best bet is to find a doctor who understands LBD if that is the correct diagnosis.
It is amazing what the right meds might be able to do. It gave us back so much of our life together.
You are in my prayers.
Take care,
Pat