Is confused about when to wake up part of the condition?

My father-in-law has CBS and it is getting more often than he doesn’t know when is time to wake up.

An year ago, we put clocks with big numbers and the time projected on the ceiling to help him know the time. It came clear very easily that he couldn’t understand that 2am was too early to wake up.

I put a go clock (children’s clock) that turn different colour at day time but after a little while, he even forgotten to look at it and he called us many nights between 2-4am to help him to get ready for breakfast.

Last night was tough… he went to bed at 9pm, woke up at 11pm, 12am and 2am, all the times ready to get out and have breakfast… and this morning his door was opened, showing that after 2am he woke up again and opened the door without calling us.

It doesn’t matter how many times we ask him to stay in bed until we came for him, his stubbornness (due to the condition on top of his own personality) doesn’t allow him to follow what we ask him.

It is very worrying that he attempts so many times to stand up as he usually fall when he is alone.

And at 8am my daughter my daughter woke up and he was tired and continue sleeping 😂

As you can imagine, we’re completely destroyed with so much broken sleep…. It’s was dreaming with the bell ringing again!

Is this part of the condition? Does anybody knows why or experience similar situations?

What can we do to help him to stay in bed all night long?

[Hidden]

Mom had PSP and would try to stand up and walk... then fall. She honestly forgot she couldn't walk. This happened a lot when she first woke up but also throughout the day. With mom it was a 'PSP brain thing' not stubbornness. Mom had an alarm pad by her bed, this might help. Sending hugs... Granni B

[Fairygirl13]

Hi, my Dad recently started night time waking, the care givers could not understand why he was repeatedly pressing the call bell over and over. He cannot speak any longer and communicates with a thumbs up. It took me a little while of working out, but it turned out he thought it was breakfast time and didn't know why he was not being got up, but he still felt tired and did want to be asleep. Now when he wakes up, the carers remind him it is still time to be asleep but put his tv on low and he watches that for a while until he falls asleep.He does sleep a lot during the day but this is regardless of whether he wakes in the night.

His consultant said if it remained problematic we could look at a mild sleeping tablet but so far we have not needed to.

We also have sensor mat with an alarm, this might be helpful as Granni B mentions.

Sending love,

Sarah

[easterncedar]

It’s very hard, maybe the hardest thing, about caring for someone with this sort of disease, that the person can’t understand or adapt to the world anymore, and no explanation, however often repeated, can help. It’s not their fault, and they are not being stubborn. The memory just isn’t there.

Lack of sleep for the carers is ALSO the hardest thing!

My guy could get at most 4 hours of sleep in a row at night from sleeping or anti anxiety medications. Lorazepam was good for just that much. We never did better.

The night walking was frequently disastrous.

As every patient has unique reactions to meds, I hope you and his doctor can find something that might help.

It’s a bleak comfort, but this phase won’t last forever. I wish you well with this terribly difficult time.