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 desperate for sleep 
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Joined: Fri Sep 14, 2007 2:49 pm
Posts: 41
Post desperate for sleep
I have been my husband's sole caregiver for 3 years now. I get 3 hrs. a week respite care through the senior center in my area. My husband sleeps for short periods at night almost always getting up every hr. to go to the bathroom, sometimes every 2 hrs. and very seldom every 3 hrs.
But every night at 3:00 he gets up and will not go back to bed. I put him back in there and by the time I lie down, he's back up again. He's hallucinating and he needs me to help him with whatever he's seeing at the time. He does take short naps in the daytime too and I have tried keeping him awake, thinking maybe he'd sleep more at night, but that didn't work either.

His "mind" is not bad at all at this point. He knows everyone and mostly what is going on around him. He has problems getting things out that he wants to say and usually just gives up and says "I know what I want to say but I just can't get it out". (it's amazing how he can get those words out so easily!) Since he is so aware I can't bear the thought of putting him in a nursing home right now but I just don't know how much longer I can go on with no sleep!

I know there has to be someone that has found a solution to getting them to sleep but I just don't have the time or "patience" to look for it right now. I've tried the melatonin and that didn't work. The doctor has tried Tizanidine, Baclofen, Risperdone, Trazodone and many more to help him sleep but they either did the opposite and made him stay up all the time and sleep less or they totally knocked him out for weeks. When they knocked him out, I was unable to wake him for anything. I had to put him in diapers and anytime I tried to turn him over, move him or change the diaper he yelled constantly as if I were killing him, even though he seemed to still be asleep. I would stop the medications that caused that reaction and after 3 or 4 days he's come out of it. At 1 point the doctor gave him a prescription for the drug that people put in people's drink to know them out and told me to try that on him and if that didn't work to take some myself and just go to sleep! (Cause he knew I desperately need sleep! We had tried 2 or 3 medications on him before that and he had just come out of a "coma-like" state and I didn't want to keep trying things because I was afraid he wouldn't come out of it so I never tried that one.

Can someone please tell me SOMETHING I can do to get him to sleep so I can get some sleep!!! It's been so long since I had more than a couple hours sleep at a time that I am totally loosing control at night and I'm so ill during the day I can barely stand myself or anyone else! I know I can't keep this up and eventually I will have to put him in a nursing home no matter how much I don't want to.

For now though, anybody got any suggestions? Please...any help is greatly appreciated!

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GinnyL


Fri Jan 01, 2010 11:47 am
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Location: SF Bay Area (Northern CA)
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What meds have you tried? What sleep hygiene tricks have you tried?

Would you consider placing your husband in a facility for 2 weeks so you can get some sleep?


Fri Jan 01, 2010 12:29 pm
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Joined: Fri Sep 14, 2007 2:49 pm
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Post desperate for sleep
we've tried clonazapam, rozeram, risperdone, trazodone,baclofen and melatonin. they either put him in a "coma-like" state or made him very anxious and nervous and he wouldn't sleep at all.

we try to go to bed at the same time every night. i turn on the radio really low and he seams to like that but after 3:00 nothing works. what do you mean by what kind of "sleep hygene" have we tried?

i've talked to everyone that i could find and the one person that has really tried everything to help me says i can't put him in the nursing home just for a while. it has to be permanent when i do it. although i know if i do put him in there, there's nothing they can do if i want to take him out in a while. i just probably wouldn't be able to do it but once before they'd be "on to me"!

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GinnyL


Fri Jan 01, 2010 2:17 pm
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Post 
My MIL did the same thing. It was like she was sleepwalking-go to the bathroom, drink water, back to bed-every hour on the hour. She now takes Remeron ( a mild anti-depressant) and this seems to work. We give it to her as she is getting under the covers. We have not noticed any increase in daytime drowsiness. A lot of this is trial and error. Hang in there.


Fri Jan 01, 2010 2:20 pm
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Post desperate for sleep
have you noticed any side effects to the remeron? he is VERY sensitive to medicines.

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GinnyL


Fri Jan 01, 2010 2:23 pm
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Post desperate for sleep
this IS alot of trial and error. that's about all i've done for the past year. tried and FAILED!

i just looked on the internet to check out the side effects of remeron. most of the time, anytime i give him any medication, if there are side effects, he has them. of course the dry mouth would be a good thing. maybe it would stop some of the "drooling".

i just know i've got to do something and fast! up until this past august i was taking 225 mg effexor for migraine headaches. i had to just stop taking it because when my husband was diagnosed in January 2007 of this horrible nightmare of a disease, i had to quit my job. we lost over 1/2 our income and i also lost all of my insurance. i can't afford to go to the dr. to get the prescription anymore. apparently the drug was helping me to cope with all of this because i can really tell a big difference in my emotional well being. i am so depressed, i can hardly sit here and see what i am typing for the tears. i feel like such a failure. the more i go without sleep, the more ill i get with him and how the heck am i going to live with myself, should i outlive him, when he's gone? it'll drive me crazy sitting here thinking of all the times i've yelled at him because "after telling him to do something 25 times, i still can't get him to do it." i keep telling myself that he can't help it and i know he can't but i'm to the point that i can't help it either. it's a no-win situation!

sorry i didn't mean to get carried away with my emotions. i just don't know where to turn anymore.

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GinnyL


Fri Jan 01, 2010 2:41 pm
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The remeron seems to be the only antidepressant she has not had a reaction to. Unfortunately, what works for one person may not for another. Also, some meds may not work after a while as the disease progresses. I refer to my MIL as "new" MIL. This is a different person. I take each day one at a time and deal with things as they come up. Luckily I can sleep really well. Do you sleep in the same room? Maybe you should sleep in another room. I have everything unobstucted and have placed numerous night lights around the house. The kind I use are LED with slots which aim at the floor so as to not confuse daytime with night time. If he likes to wander outside the house there are special locks you can install. We have placed "new" MIL with hospice, which is paid for by Medicare, and can provide respite care. MIL is not in any pain and I give thanks for this. Help is out there for you. Talk to the doctor and even public health care agencies. Good luck.


Fri Jan 01, 2010 4:15 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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Vickie, It's all so familar, although most nights Frank will sleep 10 -12 hours. Usually once a week we have an all-nighter and it's a quarentee that the next day will be a disaster, he understands nothing and my patience is very thin. He does take Gabapentin 100mg to help him sleep and it was as high as 400mg, it's also helps pain, which he doesn't have. I find the drooling very difficult to deal with. I have spots on all the wooden furniture and stains on all apolster seats. If we are out especially at our grandson's games I spend more time wiping drool than watching the game. Everyone says don't worry about it, yah, right. Frank is still able to go for coffee with friends a few times a week, on Sundays I don't go, one of his friends and my brother take him, that's my 1 1/2 hour of "my time". He starts a day program this week Tues. & Thurs, I'm not sure he understands that he is going.

In our area you can place your LO for respit care for 2 weeks, maybe longer, that would give you time to get some needed sleep. I'm hoping the two, 5hr days help me get things done. I will work one of the days to help pay for the care.

Nursing Homes in this area are $8000. - $10,000. a month, if and when I am faced with placing Frank, I would bring help in, that amount can buy a lot of help.

Frank doen't seem to understand what I'm asking him to do, but let me be on the phone and he doesn't miss much, makes me wonder. :?

I'd like to say, "hang in there", but you just can't do it without sleep. We have to out live our LO's so we need to take care of ourselves.

My situation is a little different than some. Frank doesn't like me because he thinks I'm unfaithful, wish I had the time and energy to even consider that. He's always mad at me and has some new adjectives to discribe me :cry: I try to remember him as he was but it's getting harder and harder to do.

Take Care,
Gerry


Fri Jan 01, 2010 4:41 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Sleep, blessed sleep.
Vicki, I hear you loud and clear. Sleep. I have finished reading all your posts. It seems you have many different physical problems you are dealing with. It is just possible some of the meds are fighting others causing him to stay away from normal sleep. You are so close to the problem as yu try to wade through to find a solution. I hope you don't mind if I speak to a couple of things that I wonder about.

You mention seroquel. Could I ask what dosage?
Has he been tested lately for UTI or any other infection?
Constipation?
I don't see any mention of the regular LBD meds such as Exelon patch or namenda. And remember "Start low and go slow".
Are you testing his blood sugar [for diabetes] at home?

Are any of the meds you are giving him vital or could you maybe back off of some of the "just feel good" hoping for the best?

I have no knowledge that would take the place of a dr. who is well versed in the Dr Boeve care and you must not back off of the heart or BP or such but maybe consider more of the LBD care. His overall condition must be considered.

Someone mentioned a full moon as a contributing factor to restlessness. I do think there is something to that theory.

I hope you have better days [and nights].

Dorthea


Fri Jan 01, 2010 4:45 pm
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Joined: Fri Jun 19, 2009 11:23 am
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Vickie
I can hear your pain in your words. Believe me, no one thinks you are a failure. Being sleep deprived is about the worst punishment one can endure. I see myself in your words. When my LO first started having problems it was always 3AM. I started calling it the bewitching hour. This was before we knew what he had. We tried trazadone, xanax but they didn't do much. Sometimes I would give him milk and cookies at the time. That seemed to help a little. Finally the doctor gave us a prescription for Seroqul 50 mg XR. I always have him take it just before he goes to bed. This has been working for about 7 months. I always say if he sleeps, then I sleep. I have to admit that recently he has started to get kind of restless again always at the bewitching hour. I was a mess because I couldn't sleep and didn't know what was wrong with him. I cried all the time. I hope you can find a stable place, even if its for just a while. I know I will have to try something else when this regime stops working. We care!
Mary


Fri Jan 01, 2010 4:51 pm
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Location: SF Bay Area (Northern CA)
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I can only think of two obvious meds that haven't been tried yet: Provigil (modafinil) and Seroquel (quetiapine).

Sleep hygiene = having some physical activity during the day (very important to good sleep!), going to bed at the same time, not doing anything in bed besides sleeping (and having sex), turning the clock away so you can't see the time in the middle of the night, no napping during the day.

What about sleeping in separate rooms? What about having a nighttime caregiver?

I've never heard of the concept of having to place someone permanently in a NH. Perhaps they are all full?? Most assisted living facilities and skilled nursing facilities I know of allow for respite stays, assuming they have a bed available. (If your husband were on hospice through Medicare, this would be paid for as part of the hospice benefit.)


Fri Jan 01, 2010 5:46 pm
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Post desperate for sleep
dagoetz, We do not sleep in the same room. That had to stop a long time ago. He "lives out his dreams" and I was constantly being "hit and punched" in the middle of the night. So for my safety I put him in another bedroom. I, too have night lights in every room of the house because of his getting up and "wandering" all during the night. He doesn't try to leave the house. He won't get far enough away from me to do that. His doctor called hospice for him and they came to evaluate him and said he was not eligible for it because he is still "mobile". They said he had to be unable to get out of bed by himself. If that were the case, I wouldn't have any problem getting sleep. As for the public health care agencies, the ones I talked with said he's only eligible for Medicaid to be placed in a nursing home. My husband has neuropathy in his feet and legs so he's almost always complaining of pain.

Gerry, What a God-send to be able to sleep 10-12 hours most nights. I'd give anything to be able to do that once a week, or month even! And like your husband on the day after he doesn't sleep, my husband understands nothing most of the time, as far as how to do anything. I have to do everything for him, shave him, bathe him, brush his teeth, put his clothes on, help him get on the toilet and off...everything. He does have a "liftchair" and that helps even though most of the time he wants me to pull him out of it and i have to make him push the button up to raise it, which usually takes about 5 minutes of pushing it up and down until I finally get up and do it for him.
As i mentioned, he qualifies for Medicaid to be placed in a nursing home.
My husband too has started accusing me of having an affair. I ask him when in the world would I have the time or energy to do so but he doesn't understand. He just doesn't realize that sex is the last thing on my mind right now!

dorthea, his medicines are as follows:
Aricept 10 mg
Atenolol 25 mg for blood pressure
folic acid 400 mcg once daily and vit. b12 2000 mg 1 daily (he was put on this when he first got sick because the dr. said because of a gene he had his body couldn't asborb vit. b's so he put him on "Cerefolin NAC" which was about $90 a month and the insurance won't cover it. His last dr. said the over the counter vitamins would do just as good so i changed it.)
Lyrica 75 mg for neuropathy
Namenda 10 mg twice daily
Omeprazole 20 mg in the morning for acid reflux
He has a prescription for xanax but hasn't used it lately because I noticed the last few times he took it it really made him more "stiff" and confused. To be honest, I've taken it myself a few times lately just to calm my nerves.
He does not take Seroquel and never has.
He hasn't been tested in the last 6 months for UTI or any infection but the last time was negative and his pattern hasn't changed since that test.
He has no problems with constipation. That's amazing too because he always had problems with that before he got sick.
I don't test his blood sugar at home. He is borderline diabetic and the dr. checks it when he goes.
Do you see anything that I may could back off of that would help?
As for the full moon? I am a firm believer that it has alot to do with his condition. I can always tell when it's full because he gets even worse than he is normally. Usually around that time, we're up all night every night for several nights.

pmhodel, what is it about the "bewitching" hr? (Other than I turn into a monster!) LOL I know how you felt. I too find myself crying most of the time. Once I had been up for a couple weeks straight and I totally lost it and locked myself in my bedroom so he couldn't get to me. After sitting in the dark crying about an hr. I went to check in on him. As I sat on the bed apoligizing to him, and crying, he asked "What's wrong? Are you taking too many drugs? Is there someone else?" It's hard to explain to someone what the problem is when they can't even follow the conversation!

robin, we do try to go to bed at the same time every night. We sleep in separate rooms for my safety. We don't do anything other than sleep in the bed and we rarely do that! LOL
As for the nursing home being permanent...they said I couldn't just put him in there for a couple months for me to "rest" and then get him out. However I can have him put in one for a few weeks for respite care for me but Medicaid won't pay for that and neither will Medicare or his BCBS ins. policy. Believe me, if I had the money I would do that but I just don't have the money to do it. As I mentioned above, he's not eligible for hospice because he's still mobile.

I've tried EVERYTHING and gone EVERYWHERE I know to go. I don't know anywhere or anything else to do! I'll call his dr. Monday and see if we can try the remeron or seroquel that was mentioned. At this point I'm willing to try anything.

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GinnyL


Fri Jan 01, 2010 7:27 pm
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Location: LA
Post Goodness!!!
Vicki, like everyone says, they are all different! You have a toughey. Someone else mentioned gabapentin. I should have thought of that myself. It could work wonders for the painful feet and legs. It kept my husband out of trouble. Check out the Dr Boeve pages and then recommend to your doctor. It is an older drug and not as expensive as some of the newer ones. After you have tried that, we can talk again about two of the newer ones I'm thinking for other problems... I, personally do not like to add more than one new med at a time.

Not sleeping has resounded well with everyone!

DrP


Fri Jan 01, 2010 9:01 pm
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Joined: Tue Jun 09, 2009 11:11 pm
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Location: Tucson AZ
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Vicki this site is wonderful to share your pain. You should read some of my past posts and see all the ugliness that comes out during this time. We all here understand that and do not judge you in anyway. We're here to help you thru this and offer suggestions. I don't personally know the ladies or caregivers here but I know the advice is life saving. So many of us are in the same place or were there at one time. The yelling, crying, tears, feelings of hopelessness are all normal. Plus the sleep deprevation isn't helping either.
Robin, I'm wondering if you know of any diff. dr. she could take him to see. I know my hubby was on the diff meds that made him a zombie, but after days and a few weeks of adjusting them, mostly to less, he is more stable. We get up 4-6 times because he thinks he has to pee when he only does a few drops but at least the acting out of the dreams has stopped and the bruising and acustations are far and few between.

I think you need to get back on some antidepressant, I'm taking prozac right now because it's one of the cheap ones. My ins wouldn't cover effexor. There again it's trial and error which I know you don't want to mess with but it is a life saver and you need all the help you can get right now. Please look into that for yourself.

In AZ when you have dementia and are on medicaid, the state pays for respite care although they would like it longer than 2 weeks as it takes so much paperwork. Tough, is what I say. We also can get caregivers to come in so many hours a week depending on the evaluation. I had to spend down my assets to qualify for this, but having the help has saved my life.

I don't know if you attend a church, but I'm wondering if you can find some volunteers to come once a day even for a couple hours just to let you sleep.The State council for the aging should be able to put you in touch with some too. You the saying "the squeeky wheel gets the oil"?You have to squeak to everyone you know that you are about to go under and pray God sends some rescuing angels your way and that the state will step in to help. My prayers are with you and I am sending you hugs across the miles. I know how tough it is. Be kind to yourself and don't let the guilt take over.


Sat Jan 02, 2010 1:42 am
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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Vicki: the worst thing is to be sleep deprived. I guess you can see by the urgency in the posts from your friends, that you need some relief like yesterday! :) In addition to all the good advice & support you've received, I'd just add that if you can afford it, you may want to look into getting a student nurse to give a hand during the day or night. Is there a teaching hospital nearby or could you reach out to friends who may have family or friends with a health care background. If that's not doable, I'd reach out to a church group as suggested. Many years ago, I volunteered for a local hospice & often sat with those cared for in homes so families could get out together or get a few hours of sleep. I wish you well & hope you find some relief.........soon. Dee


Sat Jan 02, 2010 10:03 am
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