THE INSOMNIA AT STAGE 7
Hello to all,
I am very sleep deprived at the moment, but wanted to post, Please excuse any bloopers.
DH is having very restless nights. He has been on Seraquel 25 mg which has helped with mood , but not with sleep. So we are on a trial and error path for sleep med. The first one, Zyprexa was useless, Now switched to Mirtazapine. He took the first pill, 15 mg last night and was up ALL NIGHT. Also , in addition to other tics like constantly clacking his teeth, he's picking imaginary lint off of clothing, slapping himself, having visual hallucinations, and can't seem to settle down, also mostly at night. Today he must be exhausted, but he cant even seem to fall asleep in his chair which is very unusual. This morning, at 3 am, i just gave up, and let him wander aimlessly around the area because i was too exhausted to get up. Of course, he took the MOLST off the fridge door, so i had to grab it as i haven't made copies yet.
Today I haven' given him any meds yet, Im actually afraid to exacerbate the situation. I wont repeat the Mirtazapine tonight that's for sure. It is possible that he has another UTI, but if we treat, it will be for comfort, and to abate symptoms. Hospice nurse did tell me that they could put him on a broad spectrum antibiotic if that was my wish, not sure what to do here, as he is only going to get worse, and at certain times he can barely stand up. So on any given day we have either inability to walk, OR, ceaseless and aimless wandering around.
My question : Why is it so difficult to find an rx for sleep that will work?
I can tell you that in the past, I tried a CBD oil and it was way more effective than any of these drugs. However, the pharmacist has nixed that idea, and I'm following the prescribed protocol.
TRUTHFULLY, I don't care if his thinking is bizarre, if we have HORSES in the house, or a PIG in the bathroom, I can handle that stuff, but the lack of sleep is not sustainable. Any suggestions would be welcome. Ive just ordered Melatonon 3 mg in liquid form, and am willing to try anything at this point.
Thanks,
Maureen
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Maurine, now that he’s on Hospice, don’t they prescribe and manage all his meds? Is there someone there you can talk to for advice? Sometimes with a new med it takes a while for it to work, like a week or more. They also usually start many meds at a low dose and then increase them as needed. UTI’s cause a lot of symptoms. Maybe that is keeping him awake. I hope you find something that works. Lack of sleep makes everything even more difficult.
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Hello,
Yes, all his meds are being prescribed by Hospice . The nurse visits every week, and this is the latest formula we're trying, I know it can take some time , as you mentioned but this reaction was so over the top I don't think I can go through this again tonight. So far today, he is still not even napping, but at least hes quiet, I'm flat out . Im thinking that if I get a 5 day respite, where he goes into the hospital facility here, they might be able to regulate him .
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Oh Maureen. The Geriatric Psychiatrist just ordered Mirtazapine for my DH for depression and she said it would help him sleep. He's been having episodes of confusion and getting lost in our small apartment. He's Stage 5 going into Stage 6. I hope it doesn't affect him like your DH. The prescription is for 1/2 tab (7.5 mg) at night. Wonder if you cut it in half and tried again? Will the Hospice nurse stay long enough so you can get some rest?
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The liquid melatonin is very bitter tasting, I tried that with my dh and he spit it out, said it was nasty, surprised because he has not been able to taste anything for over 10 years, I tried it and true it is nasty tasting. I give my dh the tablets, he can chew them and they taste kinda sweet. Dh’s doctors told me to give them to him at night, started with 5mg and that didn’t help so doc said give him 2. This is with his regular night meds. He sleeps all night now. Not saying this is something you should try, I just know it has been life saver for us. We both get a good nights sleep. ( most nights)
wishing you peace and hope your doctor can help!
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thank you for that tip! i will get the tablets
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Natrol brand makes an oral dissolving tablet of melatonin with a pleasant strawberry taste. It’s not bitter at all. My daughter with autism, intellectual disability, and food related sensory/texture issues (who can’t swallow pills) takes it nightly. It comes in a 1 mg, 3 mg, 5 mg, and maybe a 10 mg strength. I get it either from Natrol’s website or Amazon, etc. Our autism specialist said Natrol has reliable, consistent melatonin doses in their products (as opposed to some brands). I don’t know anything about melatonin safety and dosing in dementia, but if your husband’s doctor has told you a dose to try, maybe this brand and form might work. I hope this helps!
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There used to be many threads on the use of cbd oil and edibles on the old board. I have no experience with this product. You might do a search for some recent threads.
Iris
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Maureen, after our episodes of sleepless and restless nights, I am giving DH a 10mg fast dissolving melatonin tablet each night before bed and so far it is working. He is sleeping all night...and so am I. I just bought the generic brand at our grocery stores pharmacy. I hope this helps. You have to get some sleep. Praying for you and sending hugs.
Brenda
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Housefinch.
Thank you!
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White Crane,
I was just looking at melatonin Did you start him on 10 mg right away? are you combining it with other sleep/anxiety meds? I'm really desperate at this point and cant keep experimenting . Im going to order the tablets.
Thank you!
Maureen.
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Maureen, we use this one: https://www.amazon.com/gp/product/B000GG6D9A/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Both DH and I take 6mg about half an hour before bedtime. The tablets are tiny, taste good, and dissolve in your mouth. The nice thing is that you can take as many as you need. Start with a couple and see how they work for you. Add one or two or more if needed. We take them with other drugs but always best to check with your doctor first. They’re inexpensive and arrive quickly.
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This is the third night this week with agitation. He fell asleep at 8 pm then got up at 10 pm for hour. Then fell asleep downstairs on a chair for an hour, then got up and went up to bed for another couple hours. Then he got up again at 1am paced around, took the blankets and sheets off the bed and wadded them up. Throughout this he mumbles incomprehensibly and sometimes shouts. Tonight he's cheerful. Some nights he's paranoid and angry. He just went downstairs and rummaged through the refrigerator. He did not eat tonight, but on other nights he has eaten and left bits of food on the floor and counters, the fridge door open, the water in the sink running, so I have to be right there. He urinates whenever and wherever, so I follow him around with a plastic tall trash can, which he can use without splashing much. I persuaded him, with quiet voice to come back upstairs. He just used the toilet, so I have about two hours of not having to worry about that. I have to wait a while to remake the bed or he will see it as contradicting him, and he will get angry and push me away. It's almost 4 am. He is trying to make the bed, but cannot. I do exercises and pace the floor to keep myself from feeling angry. He let me make the bed.
I tried CBD a couple times. It did relax him, and he slept for a good 4 hours, but then he got up in raging agitation, worse than ever. I haven't tried giving him another CBD at that point, maybe I will. It would be nice to have a sleeping pill that makes him sleep for the night, but then I would worry that he would wet the bed.. Now he's spreading toothpaste all over the counter in the bathroom.. We had a great 43 years of marriage, before this demen got ahold of him. Bless you, who are going through this also. May you have peaceful nights and some joy.
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@gampiano: How much seroquel does he take in a 24 hour period? 25 mg is a tiny dose. My wife is 110 pounds and she takes 75 mg three times a day. There is one study in dementia patients showing that 100 mg per day is no better than placebo whereas 200 mg is effective at reducing anxiety and agitation. If your husband is on 25 mg once a day, then ask hospice to try a real dose.
https://pubmed.ncbi.nlm.nih.gov/17316169/
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If you had success with CBD, I would continue to use it. You will not hurt your DH with CBD.
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My dh is on 100 MG of trazodone and seroquel 50 MG. Trazadone helps with the sleeping, seroquel with the agitation. He is only in stage 4
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My DH (Stage 6) is also on Seroquel 50 mg, Memantine 5mg, and Trazodone 100 mg at night. He usually wants to go to bed within 1/2 hour of taking his meds, and he sleeps pretty well. Gets up to pee (sometimes even in the toilet!) but otherwise stays in bed. Lately he's been going to bed around 8 and sleeping until noon — and I know it sounds selfish but I appreciate the time off.
Also takes Seroquel 50 mg and Memantine 5 mg in the morning, and Seroquel 25 mg around 2:00 to ease through sundowning and agitation.
For now this regimen is working well.
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Not selfish at all! Everyone needs downtime.
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I am very new to this group and don’t feel quite qualified to share much. But… I was going out of my mind with DH up every two hrs. VD. His neurologist prescribed Trazodone 50mg (can take up to two). I told her I wanted to try THC gummies, she agreed. So now the bedtime cocktail is 1.5 pills with a THC gummy. Sleeps through the night. Now if I could just get puppy to sleep through the night. 🐾
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gampiano, it sounds like your DH is just like my wife. Trust me, I'm with you on the sleep deprivation and the UTI's. I had hospice come in the last part of January (this yr) and informed them we had been through the gauntlet with sleep medication, you name it we tried it ,this included melatonin. Hospice recommend we try melatonin (3mg) with Lorazepam (5mg), they did mention the Lorazepam was habit forming, but really at this point the habit forming was out the door. Finally the first night DW was on the combination of both drugs, I was able to sleep and it's been pretty much that way since. Now for the UTI's she's now on a once a day nitrofurantn 100mg which has been awesome for her. DW had so many UTI's over the last year it was horrible.
DW is also at stage7 strong and had been on Seraquel 25 mg for 3yrs. Then it went up 100 mg a day. She also had hallucination and delusions. After awhile the Seraquel plateau. Hospice started her on risperidone which is in the same class of medication, but for now it's working great. The combination of all these drug has cut her wandering almost totally off and has helped mainly in the sleep area.
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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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