I think my husband is in stage 6 ........he needs help to shower, shave, brush teeth, dress, getting into and out of bed or a chair and needs help at times eating. The last month he has wanted to go to bed as early as 5 PM. I usually try to keep him up until at least 6 PM. My question: Is this a normal happening with dementia/alzheimer?
Don't know about 5pm...but otherwise, that looks normal from here. We are in aspects of 6, but not quite so far along. Still, Jeff has been going to bed quite early for the last year or so. Often 7, and at least by 8.
I usually start getting my wife (stage 6) into bed around 8 or 8:15. If she stays up later while I am watching TV she falls asleep and then I have a fight getting her to bed. She doesn't ask to go to bed, but just falls asleep where ever she is.
My Dh is stage 6 and doesn't sleep much. He has said he was tired about 8 some nights but when I say I'd help him get ready for bed but that I was going to stay up he changes his mind. I would rather he sleep during the night - although he is up and down most of the night and may sleep in until 9 or 10.
Sandra, yes, we are also in stage 6, and I start getting dh ready for bed between 7 and 7:30. He no longer suggests it himself, but usually does not protest. Sometimes I have to get in bed with him, so I turn on the tv and he is asleep in a few moments. I find if I wait till aftr 8 to start the bedtime routine he is overtired and I have more of a struggle. He sleeps at least 12 hours, usually until I get him up. He needs help with every step of dressing and undressing, I have to shave him and start brushing his teeth, then he will take over but brush mostly all in one place. He usually can eat on his own, needs help sometimes with cutting food and sometimes it takes him a while to get started but he will usually eat everything that is put before him and sometimes raid the fridge intbetween. I put his pills in one hand and his water glass in the other, and then he will usually take the pills without protest.
Sandra, my DW is early stage 7, she goes to bed on her own just after she eats. 5:00 to 6:30 and sleeps until 8 or 9 AM. In saying she goes on her own I mean just disappears and when I check she is usually fully dressed , sometimes with her shoes still on. As we say learn to pick your battles. She sometimes sleeps for more than a day and once about a month ago was 40 hours. I wrote a post regarding this called good night Marilyn. I am happy to report that she now bathes every Monday with the help of our PSW so she gets fresh clothes also. This is fantastic since we sometimes went a month between. I have opted to forego the anti phsyc drugs after she was on them for 2 months last year,(almost killed her) she is 58 and fighting as hard as she can but knows she is loosing. She is strong willed and very hard to control, but as long as she fights I will support her.
Very late stage 6. There is no routine. She stayed up almost 60 hours once straight. She has gotten up from a reasonable nights sleep, gone to sleep on the couch all day, and then went to bed and slept through the night there too. Usually I pick my battles and let her fall asleep anywhere between 9 and 11 pm. When she wakes up from that run I put her to bed and the morning might start at 3:30 or she might still be sleeping at 10 am.
When I tried to routine this I had to fight her to go to bed and then fight her to stay in bed (not literally). I was a wreck. She kept getting up. Also she has flooded the bathroom and tries to overflow the sink.
Now that I let her set the pace she is usually either sitting on her bed often dressed, in the bathroom playing, or downstairs sitting on the couch. I sleep unless I hear a very odd noise. I took everything away that can be flushed down a toilet. I leave 10 sheets or so of toilet paper. All towels, tissues, small objects, and the same from the adjoining rooms is gone.
She's usually cheerful now in the morning and apparently for some strange reason respects my closed door. If she does open it I say that's not nice going into other peoples rooms and waking them up and she leaves.
When I contained her and tried to force a routine she was never dressed, never cheerful, and never ever came downstairs by herself - plus I didn't sleep. This is so much better for both of us.
Wolf, Your DW is slightly ahead of my DH in progression. We've recently added Seroquel XR150 to try to help with the significant sundowning and hopefully going to bed more easily. The med has helped trremendously with the agitation and resulting tension of the sundowning, but the settling in and getting to sleep isn't happening. How are you managing the initial balance between her going to bed and you being able to do the same? Them getting up while we're asleep is a separate matter. I was generally able to head for bed once DH had settled for the night, but now he isn't settling until way late, and he does things--(the kind needing monitoring). As you've indicated this is a challenging issue.
I just put her to bed 5 minutes ago. As you can see it's 3:00am. She falls asleep somewhere after dinner so I stretch dinner towards 7pm and watch some TV (wheel of fortune and jeopardy which her mother watched and are old friends). She's going to sleep 8 times out of 10 within an hour or so of when we're done. It's a big wingchair and she sleeps in the most uncomfortable positions.
Before I got out of the box I would try and encourage her to stay awake longer or get her to bed then. She would get dressed again and get up. Back to bed. Up and dressed. Back to bed. etc.
Since I've just let her sleep and try and let her get 4 hours in and then move her up to bed - she has stayed in bed and gradually gone to sleep. At first 80% of the time - now dependably. Once she's had a cycle in the wingchair or she moves to the couch if she wants - I walk her upstairs, get her to go, and try and change her into pj's. If that's not working I take off her pants and socks and tuck her in.
The second part of going out of the box was psychological and about me. I was averaging 4 hours or so for about a year. I was on pins and needles about stuff. Got up to check every noise. Worried about her falling. Got up when I heard her in the morning to try and get her back to bed.
The second part is that I realized I had to let go. One night I lay there and it crossed my mind to think of myself as sleeping over as a guest (not hard since I moved to the other bedroom just a few months ago). In other words when I hear noises in the morning it's just the host getting up early and I get to roll over and sleep some more. I had to let go, relax, and allow myself to sleep.
The last part was setting the upstairs up for the night which I'm about to do when I sign off. That's empty the trash bin into my secret bin so she can't flush the day's tissues down the toilet. Do a sweep to make sure nothing flushable is out. And go to bed with the tissue box and toilet roll (the roller pin for the holder is long gone anyways). Then I leave my door open a crack for when the cat comes in.
It's 3 am but I will easily get 6+ hours sleep and I've become so good at relaxing that when I wake up at 8 or 9 and I can hear her, I just roll over and sleep until 11 or even noon if I need to catch up. Once in a while it doesn't work and it won't work for too long - but it is certainly working now.
I know that's a lot of detail. By looking for real things that work, taking steps to help make that happen, and then coming to that myself - it has changed my life for now which gets me into better shape for the next horrors in this Dante's Infernal. Maybe more Fellini on a really bad day with grainy black and white film where the projector keeps popping and wheezing and it's just melodramatic line after melodramatic line overacted ad nauseum until you literally want to retch your spleen out.
See what you've got there is a male. You know, half your weight and negotiative and supportive by nature. What I have on my hands is a woman. You know, twice my weight and full of the need to be tough and ornery. Women face different problems. They just do. Wait I may have that wrong.
My dh wants to go to bed starting at 4:30 every afternoon. I stall by making dinner later and asking for help doing nonsense jobs. I'm happy to get him to stay up until 7PM. By time we do all his nightly things it is 7:30. Tuck him in and he is out of bed all evening until I go to bed. Just wants me to know where he is. some times he out of bed a dozen or more times. I may think I'll have an hour to myself, but it is just a delusion of mine. He is stage 6 also.