Constant Motion
My DW has moved from sundowners to near constant motion. The last two months have really been something. I'm not sure she had more than 5 hours sleep most nights, sometimes going over 24 hours without sleep and no loss in movement energy. Earlier she was much more agitated and then it shifted to general aimless wandering.
She has just gone on Seroquel and it is fascinating watching how much her dementia wants her in constant motion. The first night she got 25mg, she hadn't slept in 24 hours, she feel asleep in 15 minutes and was knocked out all night. Same for several days after, though it would take 1/2 hour to fall asleep. The last couple of days, it's taken 4 hours for her to go to sleep. I have watched her falling asleep, then jerk back awake and try to get up to go do something…for hours on end. It looks just awful and is more tiring for me, as now she's both wanting to wander and a big ole fall risk. The Seroquel makes her very unsteady.
For those with a spouse on Seqoquel…how high is his or her dosage? I just want her to have some damn peace. Honestly, me too.
Comments
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Can’t help with sequel or any drug information my DH isn’t on anything except high blood pressure and Asprin. I’m confused at what stage he is at but it is interesting that he has got to the wandering stage and constant movement. He will wake up from a day or night sleep and get up straight away and hover then wander around and around. He will not sit down unless I sit with him. I’m exhausted it was 3.00am this morning and he wants me up to keep him company. His aphasia is so bad I can barely understand anything he says and sometimes he makes just jibberish sounds. He tries to dress himself but I have to reorganise his clothes, I shower with him, shave him, push his food into his spoon, hold his hand and lead him very slowly through a shopping centre, hold his hand so he doesn’t have a fall. Surprisingly he is still continent. Where do we go from here it seems it’s a long way to the bottom?
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My DH is on Seroquel and quite a high dosage 300 mg.,a day, given three times a day 100 mg each. He is 7c and has lost weight but still weighs 200 lbs. we have went through so many stages of not sleeping through the night. His sleep during the night for the most part for the last 2 years has been very fragmented. I have tried to introduce other medication in addition to the Seroquel, but the side effects have always been an issue. I do give him melatonin in addition to the Seroquel before bedtime. Started with 3 mg of melatonin and have increased it to 6mg just the last couple of weeks. Unfortunately there are always changes with the disease at this stage that make it difficult for anything to be consistent. Lately we have had issues of constipation/diarrhea, fluid retention, needing a dialectic, start of full incontinence, and more difficulty in walking and understanding words, so have to physically show him what I need him to do. Just such a roller coaster ride. So trying to work on the other issues and then see if sleep issues improve again. I have Hospice in board and so happy to have their input.
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Cindy, I have no input about Seroquel but I have seen the constant wandering that you describe in two residents at my DH MC. One has stopped and seems much more calm. The other wanders aimlessly all day long and it is heartbreaking to watch. I'm so sorry you and your DW are having to go through this. Sending big hugs.
Brenda
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Thank you so much, Kat. I forgot about melatonin and may try adding that in. And, I did just get Hospice on board, so I'm calling today to see about adjusting the Seroquel dosage.
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Oh, Biggles. I hear you. It does seem a long way down still. We can hang in there together!
I read Tam Cumming dbat a few times a week these days. Based on what you're describing, it's Stage 6 on that chart.
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Dh was put on Seroquel for insomnia. Currently on 50 mn three times a day. However it did not stop the 24 wake cycles he was having. We added trazodone (currently at 150mg each night) and zoloft. As he is now in hospice we also give 2 mg Ativan at bedtime. It is a lot of meds, but there is finally sleep, and he is much better when he gets sleep
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This topic always scares me as I’ve gone through month after month of my DH waking up and yelling every few hours. He can’t get out of bed as he never recovered from a stroke 18 months ago, so the wandering is not a problem. But the screaming at the top of his lungs was. He takes 50mg of Seroquel at night along with Hydroxyzine 10 mg and a THC/CBN gummy that combo has kept him sleeping through the night.
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25 mg of Seroquel 2 or 3 times a day is the starting dose. Most patients with significant agitation require significantly more. 50 to 100 mg 3 times a day is fairly common.
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Cindy, I posted a few weeks ago about how my DW is on her feet, walking, vocalizing, touching everything in sight from the minute she wakes up until I finally get her down at around 7 or 8. I’m meeting with hospice tomorrow to have it out with them as I do not think they grasp what is happening. My wife is on 50mg of Seroquel 3 times a day for a total of 150. Her agitation levels range from high, medium, and low. Whenever she sits or tries to lay down she immediately pops back up. My helper clocked her steps at 3 miles in 4 hours. Lorazepam was a bust. Worked for the first couple days then she just kept on walking with her eyes basically closed. But I am very concerned about changing meds just for the same reasons others have expressed. I don’t know what I don’t know. Now, as for sleep I highly recommend 30mg temazepam. Talk with your doctor about this. So far, this has not let me down.
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what form of dementia does your DH have? I am wondering since you mentioned aphasia. My DH has Primary Progressive Aphasia semantic variant
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Thank you! I meet with our hospice nurse today and willl check in with her on it.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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