These past couple of years with Lynn have been a certain kind of hell I think only people like all of you could possibly understand. Our days were ok, but he was always so grumpy. Due to his sundowing , nights were hell. With violent AD rages, our lives were in constant turmoil. Every single night I was yelled at, called names, pushed out of his way etc etc...
Every night he was up pacing the floors, just so uncomfortable. He knew something was really wrong with him, but he couldn't figure out what! He would sleep some, then wake angry... Throughout the whole night -it was a vicious cycle. I felt just as bad for him as I did me.
Now though, since he was put on the Seroquel, our lives have changed. All for the better!!! I am just so grateful for having the gift of his personality back. I never dreamed to hear such kind words from him again, I am overjoyed! But wow! Is it quiet!!!
I am use to being up most of the night caring for him, and now he has been sleeping so peaceful through the WHOLE night!!! I do try to go to sleep like a “normal person” But, I find I keep waking with a start, wondering why he is so quiet! Is he ok! I check on him throughout the whole night, much as a new mother checks on her sleeping baby.
By no means am I complaining!! This is a gift I hadn’t expected and I plan to enjoy each and every moment of it! I assume my sleep has been disrupted for so long, it is now my habit. Now I just need to try to get back into a normal routine … how odd!!! LOL
See our discussions about Bach's Rescue Remedy. The stuff has been around forever and is available at health food stores. I bought a tin of the pastels. I'm not saying the stuff would work if you were in a full scale major upset, but the one time I tried it I was mildly upset and then mellow the rest of the evening.
It, or some kind of herbal tea, might calm you down just enough that you will be able to change your habit and sleep again. I fully understand the checking "is he breathing" stuff, because I've done it myself on occasion. But you need to tell yourself that you will check in the morning and turn over and go to sleep.
You're exactly like a mother checking on her baby. The current behavior isn't "normal", so your mind warns you there may be a problem even when you're asleep.
My husband used to snore ... my. I learned to sleep right through it -- in fact, it was very reassuring, I knew he was there and sleeping peacefully. Recently, he isn't snoring at all, and THAT wakes me up! I get panicky, and have to watch him carefully to make sure he's still breathing.
I have been getting up 3-4times ave per nite for 2yrs now, as dh has to go to bathroom even on his meds. so i truely know the deprived sleep stage i am in as i typetoday. he has sleep apnea as well, and when he doesnt exhale on cue i am up looking at him til he does or i nudge him. even my lil dog chihuahua has started getting up and following us to bathroom and hes not getting his sleep either. he so worries about his daddy!!:) you can see the anguish he knows hes sick and wants to protect him from everything even my leading him to bathroom all the time. DH is doing pretty good lately on the low dose neurontin for the myclonic jerks i dont want to make waves, so i just grin (not) and bear the gettin gup and not adding something else to his med mixtures just yet. i can give benydryl if i get up the nerve. divvi
I see I am once again not the only one who has gone through this, I SO love this site! I haven't slept in our room for about a year and a half now, he kicked me out in one of his rages.. it is now HIS room LOL I think it is important he has his own place to go, so I have never pushed this with him. So I can't hear him at all, and that is part of the reason for the nightly checks. Just too quiet. It is so good to finally be understood!! So refreshing!
We each have our own rooms with hospital beds--his for help arising, me to elevate my legs--edema related to my disability. Since, once my braces come off, I don't walk, I've handled some of this checking on him/ caring stuff differently. I'm generally a nightowl anyway, so I stay up until at least 2. Then go through the check on him, close up house, potty dog, go to bed. He gets up around 4-5, and I get up at 7. Fairly frequently, I'll be in my lift recliner reading, TV, or puzzle-book solving in the evening and doze off for a while, but when that happens, I'm more in the alert/sleep mode because I wake right up when he comes out of his room. Am I getting the sleep I should be---NO. None of us are. Is this working for us? Yes. All we can do when doing this 24/7 is the best we can.
What has been an eyeopener to me is some of the comments regarding different meds. Seroquel is working wonderfully for several of you. It made my hubby sleep all th time. Xprexia was like drinking water for him--did noting to help nor hinder. Risperdal helped his psych issues perfectly but caused such joint pain and muscle stiffness I had him to specialists for those problems before I found out it was the med. As we all have found: If you've seen one dementia case you've seen one dementia case.
I am sorry you haven't been able to find a medication to help your husband. Yes the seroquel has been a blessing for us. Lynn sleeps alot all the time and has done so for the past couple of years.... but I haven't noticed he sleeps more. Though he IS more rested because he is getting restful sleep now. WHEW! I hope something is found that can aid you as well.
Sunshyne.."You're exactly like a mother checking on her baby. The current behavior isn't "normal", so your mind warns you there may be a problem even when you're asleep."
Yep that is it in a nutshell... it isn't normal for him at all. Again NOT complaining, I think it will just take some getting use to. Due to my medications I can't even take a vitamin without my neuro's ok. He is on vaction for another week, but I will ask him when he gets back.
Thanks for all the input and support ((hugs)) Nikki
We tried the Seroquel, worked ok for a while at a low dose, caused intolerable side effects eventurally. We move to Geodon for the anger, rage, paranoia, and stopped that recently also due to side effects. Looks like DH can't go the anti-psychotic route. We are currently on Depakote.
Pat, I am sorry to hear the medications caused too many side effects for your husband, I hope the same doesn't prove true for Lynn. I take depakote and was suprised to see it is used for AD... will have to look that up. Is the depakote working for his aggression?
I have Lynn safely tucked in bed, time for another "too quiet" night.
Nikki, Yes, he seems to be doing well on the Depakote. It is one of those multi-purpose meds. It covers bi-polar (mood disorders), epilepsy and/or migranes.
The drs. at the psych unit (where he was staying while they treated the side effects) were going to wait and start him on something, if needed, as an outpatient. I’m assuming they didn’t want to start him on something so soon after stopping the other med, but my son and I said he wasn’t coming home until they started something to deal with rage/paranoia.
I also dealt with the aggression and many sleepless nights until the past February when finally decided to use the medication the neuro has prescribed last Nov. I hate meds, for me or husb, but this disease just is what it is...my DH takes 5mg of Loxapine, which is a generic version of Loxitane. It has made a huge difference in both aggression and his sleeping -- now sleeps through the nite & I too find myself "checking him" to be sure he's still breathing. Also dealing with the snoring, but I get him onto his side & the snoring mostly subsides. I remember before that medication was added, I was miserable without enough sleep...sleep deprivation really takes a toll on your "patience". I am thankful that we have this med!!
Pat I am very glad it is working for him. I was on the depakote at first to prevent seizures after my brain surgeries, they later kept me on it for the migraines the surgery brought on. I did look it up and see that it is used to treat dementia behaviors, I hope this is the answer you have been looking for!
Natsmom I am glad you too have been able to find something that is helping your husband. AD is hard in and of itself, with the added trials of aggression and rages, it is that much more difficult. For now the seroquel has been a Godsend.. WHEW!!
I again woke with a start so of course had to go check on him. I accidently woke him up this time....oops But, unlike before... he was not upset in the least, REFRESHING! And I even got an extra goodnight hug. awwwwww
nikki - That's how my DH is now too when he wakes...or is awakened when I come to bed...just soo soo sweet :) A nice "back to the past" reminder of what life used to be like, and how it can still be, sometimes...those moments are to be cherished!
Natsmom, you said it! I do so cherish them. After two years of being hated, it is indeed a blessing. He "kicked" me out of our bedroom about a year and a half ago...I thought perhaps since his rages are gone and his moods are better he might allow me in the bedroom again to sleep. But nope!! He likes his own room. The doctor said for some people it is vital they have their own space, a place they can call their own. Lynn must be one of them! He does spend much more time in the living room with me (my bedroom lol) and he is such a pleasure to be around now. His care is soooooo much easier too. What a blessing!
Nikki - I'm glad that you too are experiencing some "easier" times. I sorta wish sometimes "I" had my "own room" where I could just "go to be alone"...but then I'd probably be lonely! LOL!! Seriously though, sometimes when we get up "early" for a restroom issue (4:30 or 5:30 am), I just go ahead & stay up because I have about 3 hours to myself...tired or not, it's time alone, which is so so rare. My DH hardly ever naps during the day any more. I guess that's good though because then he will sleep thru the nite. We give up some things to have others.
It is rather lonely, but I do not miss the rages in the least! I am just glad for him, he is more at peace now. When he wants company he comes out and is pleasant to be around again. It isn't the same as having a husband there with you, more like someone you love dearly. Its hard to explain, but I know you all know what I mean. A few of you have used the term, married widow... as sad as it sounds... I guess that does best sum it up. But, I do cherish what we have now, it is so enjoyable to see his personality, his humor back!! Though it is true he is but a shell of his former self, I still love him to pieces!
My DH didn't want to go to bed until after midnight and was up sometime during the night turning on all the lights, emptying the refridgerator and sometimes freezer and all kinds of things. Without my hearing aids, I would depend on the lights eventually waking me. When I woke, he was usually asleep on the couch. As I had to be up between 6:00 and 6:30 to get to work, there were a lot of nights I was nauseous by the time I got to sleep.
After placing him last year, it took me almost a year before my sleep patterns returned to something like normal.