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Hi everyone,


I’ve posted here before about my Papa. He’s now 91 and still lives alone, which is a battle of will. He is now almost completely blind and very hard of hearing (doesn’t like his expensive hearing aides). He is so extremely bored that he sleeps on and off during the day. Or he will go to bed at 6pm. Sometimes he sleeps through the night. But, other times he’s up at 2am, confused if it’s 2am or 2pm. Same thing with the naps.


Sometimes, he won’t recognize his surroundings when he wakes. Advice says to keep him stimulated during the day so he doesn’t sleep, but how? He’s blind, deaf, and can barely walk. He can’t see the TV and can only listen to it on volume 80. I’m out of ideas, anyone out there have any?

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We have been struggling with our family member, 54 years old EOAD. Wants to sleep all morning, and up all night. was hallucinating at nights with things coming out of the shadows. Was only getting 4-5 hours total sleep time in daily, Tried EVERYTHING the DR told us too. NOTHING helped until this weekend.

I read about a facility in NY that provides Nightcare services, works like a daycare, but only at night. The participants excel under these conditions.
We tried it out this weekend here at home, let him stay up all night and do whatever he wanted all night, sleep in as much as he wished. He got 9 hrs total sleep Sat and Sun nights. Has made an incredible change in attitude, cognition, and character. No more "shadow creatures" coming out to attack him at night!! This afternoon he is like his old self about 3 years ago, WOW!!!

We have made the decision here at our home that we won't force our sleep schedule on him, rather cater his schedule to meet his new sleeping cycle.
We are sitting down as we speak figuring out what that means for our family, but daycare is definitely getting dropped as he just doesn't get the sleep he needs by attending their program. Everyone needs to sleep, and we need to make sure he gets the sleep when he needs it.

In your case I would think about what his "normal sleep cycle" is, make sure that he is able to sleep those hours that he wants too, and schedule activities around those times to keep him active while awake. If the TV bothers you at night like it does us, we are setting up remote speakers next to his pillows on the wall to allow our loved one to watch TV without keeping the whole house awake. We are also thinking about having someone come in and spend a few hours every night with him during his awake period so we can be rested as well.
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Lymie61 Dec 11, 2018
Good for you figuring that out! Something I was going to suggest before seeing that you figured it out is make sure he is drinking enough water during the day/night. Mom starts getting visitors (we are so fortunate she isn't afraid of them) when she hasn't had enough water.
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My mom get's into this sometimes too, cycles of not knowing if it's morning or evening, it was becoming a real problem because she would take the wrong pills. We solved that with a new pill dispenser and really unless she has an appointment it doesn't really matter if she has oatmeal for breakfast or dinner so I haven't been as aware of whether or not it's been happening lately. One thing I did try that worked for a while was putting her phone on a 24hr clock, that way she knew it was afternoon/evening if the time was double digits when she checked. She uses her cell phone to check the time most of the time. Also make sure he is drinking enough water throughput the day, this makes a huge difference in my moms cognitive state and might help the sleep cycle.

All that said I'm not sure how to get around the boredom thing without trips to the community center or adult care center daily or every few days, it's an ongoing problem with my mom as well but she has now stopped all of her out of the house activities (that aren't with one of us) by choice and I worry about this a lot. There was a recent study done that concluded isolation is as harmful to your health as smoking, mom was so pissed at me for telling her about it! Lol My point being there is only so much we can do and mom anyway is happier isolated, I don't get it and her speech gets much worse but we are in touch with her several times a day and she does have tenants she sees here and there so it's a battle not worth fighting at this point for us. I do think it contributes to her time confusion though. Oh and she likes to listen to her radio but gets much better sleep when she turns it and the lights off at night, she has a habit of not doing that and it makes for a bad nights sleep. Mom is also deaf in one ear, has been most of her life and has maybe 50% in the other, doesn't like to wear her hearing aid either. My brother got her set up with some headphones and earbuds for watching tv with him and for watching things on the ipad which she enjoys and that works really well for her, you might give something like that a try.
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BeckyT Dec 11, 2018
Lymie61, I like that idea of changing the phone to military time. That would help Papa too. I know there’s only so much we can do to help, but seeing him depressed because he can’t do anything breaks my heart (and he’s on 2 antidepressants). Papa speech suffers too, as does his memory and strength. We force water on him all the time lol.
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This sounds like beginning Of Dementia with Lewey Bodies. Or what is referred to as LBD. If your dad hasn’t been evaluated recently, a neurologist can help.
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BeckyT Dec 11, 2018
AT1234, it may well be. We’ve noticed a little more confusion than normal, and some oddball ideas. He is just dealing with his family doctor. Papa just wants him to get him through his end of life issues - so no specialists, just med adjustments for comfort and safety. But I will let his doctor know. Thanks.
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Tonaki Tinnitus Protocol / Hi Becky! I am so sorry to hear of you + your Dad’s struggles! I recommend a very easy solution to confusion, Parkinson’s and mood: Just give your Dad 1 tablespoon of virgin coconut oil with each meal: breakfast, lunch, and dinner. That’s it! This REALLY feeds the brain. For even better results: mix 3 cups of extra virgin coconut oil (melt it in a pot of warm water) with 4 cups MCT oil, then store in the frig for use. Give 3 times a day. For the rationale behind this, see Mary T Newport MD’s book: The Coconut Oil + Low Carb Solution for Alzheimer’s and Parkinson’s. For your Dad’s hearing try the Tonaki Tinnitus Protocol. It REALLY worked for me. I realize this is for Tinnitus, not deafness, but I am hoping some of the same principles apply, like repairing auditory nerves. Worth a try. Best wishes to you both-
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SusieSmith Dec 11, 2018
I am the caregiver for my mother-n-law. I tried the coconut oil with my mother-n-law for a year. It did nothing but add calories which she didn't need.
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As far as being almost deaf, my dad was really helped by getting him big wireless headphones that work with the TV. He loves them, now he can watch TV and hear it. He also wear hearing aids.
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EmilySue Dec 17, 2018
My mother couldn't handle the headphones, but she loved the wireless tv speaker we got for her on Amazon. It is like a very simple radio, that she set next to her chair with only a big on/off and volume dial. Before, she used to blast the tv unbearably!
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Becky: Why is he not in an NH? Classification of "Almost Completely Blind" came from the COB, did it? That alone is a danger living solo. He could fall and hit his head.
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BeckyT Dec 11, 2018
I know, preaching to the choir. He insists on staying home and currently has enough of his faculties to make that decision - even though we all know he should be in a NH. Stubborn old fart :)
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I appreciate everyone’s help. You’ve given me a few ideas to try. It’s a struggle. All we can do is keep him safe and see how this all plays out. We secretly hope he’ll fall and have to go to Rehab, then he’ll be in the NH for good.
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Sleep problems is unfortunately part of PD. Talk to his neurologist about adjusting his carbidopa/levadopa. We added one at bedtime so that my husband has some in his system when he wakes up in the middle of the night.
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