DH has been declining lately and he had an appt with geripysch in early Jan and I made a phone call last Friday due to behavior changes. DH has been sleeping erratically-some nghts 8+ hours and other 1/2 hr and up all night (like last night). Last Friday, he was up from 2:30 am until 8:00 when he came downstairs for the day. I asked psych if we could add trazadone at night and he agreed. Moderate success until last night-awake since 1:30 am, packed all the medicines and other personal care products in his suitcase, some of my jewlery, some clothes, old paperwork, etc. Told the aide he had to go get his car in storage (a red convertible-never owned one) stored 35 miles away from where we live and he had to go "home" (Hartford CT-we're in western NJ for 30 years) to visit friends. Both the aide and I did everything we could today to distract him-we'll get car tomorrow when weather is better, no one's left in Hartford, all your friends are here, convertible is for summer so we'll get it in late Spring when he can enjoy it, I'll take you to Hartford when the weather's better-tell me what address to drop you off, this is your home for 30 years, not Hartford, a car ride locally. You name it we tried it. It is now 16 hours later and several meds later (the one's he normally takes) and he is still fixated on going to get his "phantom car" and go to CT. He is mostly angry at the aide for not taking him to get his car. I have a call into the psych but I know he won't call tonight.
I'm desperate for suggestions regarding what has worked for you or what might work. I will continue to medicate him rather than take him to ER.
The only thing that worked for my husband was a large dose of seroquel. My husband found the hidden key and took off for parts unknown. He was missing for over 24 hrs. so make sure your husband can't get to a car.
lordy, LFL i have been there right with you last night. DH was up all night and i resorted to childrens benadryl which usually works but last night nothing did. mine loves to party all night, smiling and clapping LOUDLY. the med did nothing until the sun came up and then hes slept all day now and very hard to get him out of the stupor. there is no happy mediums. we have ABH which is a gel that is rubbed into the arm, and its ativan, benadryl, haldol concoction that works too well. and he sleeps for over a day and hard to wake up. this may work for some of you who dont have spouses with impaired kidney function. its a light dose of the 3 and really seems to do the effect but my DH has issues with even childrens benadryl. so me too, i am constantly looking for happy mediums. melatonin works some days some not. this gel can be concocted by rx and the doses can vary from min to max. when they dont sleep its the pits. 3-4hrs at most some nights just doesnt cut it. sometimes it seems the meds have the reverse effect and causes restlessness and anxiety instead of whats it supposed to do. i hope tonight is better for you and hes tired from the night before!! i am in for another allnighter i guess as he slept all day! yipes. never ending. mine cant get out of bed though at least thats a plus these days. your dr should have an emergency call number ! divvi
Dear divi, I really hope you don't have another all nighter! I suspect the seroquel is having the opposite affect (making him anxious) but dr says no. I do know when it was increased to 450 mgs it really did have the opposite effect, so now he's back down to 300 mgs. Psych says klonopin can make them "disinhibited" and cause the nighttime activity, so he reduced it in an effort to stop it. DH is on neurontin (100mg/3x/day). seroquel (100 mgs/3x/day) klonopin (.5 mgs /2x/day) , trazadone (50 mgs/1x/day at night) and I give him 5 mgs of melatonin at night. Nohing seems to help consistently. Thanks for the tip on the ABH-is your DH on anything else?
When DH is up all night, I keep him awake all day so we don't get into him changing sleep patterns-day into night. Makes him mad, but enough is enough. I pray we both have a peaceful night and get some much needed rest!
I agree, dr should have an emergency # but doesn't. Perhaps time for a new dr!
no other hard core meds except blood pressure as needed and otc prilosec. less is more with my spouse. hospice nurse has suggested i try the neurontin we used to be on for myoclonus as well. says it has drowsy effects to it and will relax him. and since my Dh was on it many years i am willing to try again. wow. your DH is on a miriad of concoctions as well. sometimes i thing too many counteract each other. i agree they can surely produce the opposite effects. seroquel especially can do this. we tried that early on and the low dose caused extreme anxiety and restlessness as well. too much of a good thing is just that. :) but trying to decifer thru the doses of what and which meds is such a trying time for all of us on this journey. just like some with the aricept 23mg just didnt tolerate it or even the 10mg and back down to the 5mg and all is well again. its helterskelter to find the right combos. i cant keep DH awake he just cant open his eyes til the meds wear off. its always been like this. its why i am very cautious with what i give. sigh.... we are in very different stages i guess but as we can all see, sleep can be a factor in any stage. wishing you (and me) and anybody else who is 'sleepless in seattle"!!! luck tonight but i am already gearing up for a late night party again ... haha. and ps yes i couldnt have a dr that didnt have an ER service! you never know.
Hi, LFL, I am thinking about you and your DH. I hope and pray that you both get some sleep. Medication management is such a complicated process, trying to strike a balance in just the right doses and combos to help with symptoms and behaviors. Difficult to achieve and we rely on doctors and sometimes I think it is just guesswork, educated guesswork, maybe, but frustrating just the same. Wish there was some kind of hotline to call when doctors are not available. I had gotten to that same point---accommodation fatigue---I called it when I just couldn't come up with the fiblet or redirection or words that would break dh's train of thought. Could the aide have car problems? The phantom car in CT keys are lost and waiting for new ones. Forgive me if you have tried those. Wishing you strength and wisdom to get through this crisis.
As divvi mentioned my H is one who can tolerate, and do better on generic aricept @10 than he could @23 or @5 or none.
He has also had what my dear niece (a psychologist) calls "wacky-doodle" reactions to generic depakote. My, or I should say his, N also encourages supplementing with benedryl, as he told me has a very short half life.
Oh my Lord, not sleeping is right up there with pacing. Up and down, with no purpose, or some kind of purpose known only to him.
I have learned to avoid ambien because of the impulse control factor, and stick with the ativan instead.
My H wants to go to the library to find out if they have any new books because he has already read all the books.
And, it varies so much day to day- yesterday maybe 12 hours of sleep which is fewer hours for him and today I am clocking 18 hours.
Thanks to all of you...last night was much better-only up twice to "pee", so we got about 8-9 hrs of rest. Today is much better-no mention of the "phantom car" and no desire to go to home in CT. I am praying tonight is as good as last night but you just never know!
Thanks jerseymama for the suggestions-we did try those but he was so fixated on the car and going "home" to CT NOTHING could distract him. It's a perfect phrase "accomodation fatugue" and yes, the aide and I both had it. We've kept DH awake all day and taken him for a vigorous 45 min walk, so hopefully that will help with tonight's sleep.
Divi, he's been on this "cocktail" for 3.5 years since he was in the psych hospital for med adjustment. They tried just about everything-risperdal, aricept, namenda, depakote, ativan, haldol, lexapro, celexa...all had negative effects. This combo has worked but I think the efficacy is waning. He's a young (61), strong and strong willed man. In many ways is similar to MarilyninMD's DH ad situation. He's mid-stage 6 or so now.
Lloyd had been on Trazadone for a long time. What I noticed was that his myoclonus was extreme in the mornings resulting in unsteadiness and falls so I just stopped it to see if Trazadone was the problem. He is much better. He still has insomnia, but he had it with or without the Trazadone. He is sleeping much more than he used to during the day, but he is pretty far along in the journey. He is also 61, but first showed signs of AD in about 2005. He hasn't been able to carry on a conversation for about 3 years now. All he can do is walk on his own. Everything else must be done for him or at least with help. My concern right now is that he only pees 1-3 times a day. He had been on Keppra, Depakote, Depakote sprinkles and the side effects were terrible - he was like a zombie drooling all over himself. Since I don't want him to live like that, I just stopped those meds. He now takes 1 Aleve, 1 10mg Namenda, 1 2.5 Marinol, and 1 4mg Coumadin at about 11 AM or noon. The Keppra was for seizures, but he has only had 3 grand mal seizures since April 2011 without the Keppra so why bother. The Aricept was stopped because the neurologist thought it might have brought on the first seizure. I started the Aleve for headaches caused by inflammation in the brain from the buildup of the amyloid plaque. I just think less is better. The most amazing thing he has taken is the Marinol. When this all started, he weighed 155 lbs. After the first seizure, he went down to 116. Now with the Marinol he is usually between 126 and 131 which is good since he is only about 5'1".
well, I thought we might be over this stage since he's been sleeping relatively well for the past week or so-just getting up to pee and going back to bed. Just when I thought it was over, last night he was up from 1:00 - 5:00 am with little or no resting in bed. Tried to leave several times (all doors locked and alarmed). I have no idea what else to do...we're taking him for walks and keeping him up during the day, but I thnk he needs more mental stimulation during the day. Difficult because I can't get him interested in much other than tv and music. All ideas are appreciated. BTW, had to call the plumber-apparently one of the things he threw in the toilet actually did get stuck in the pipes. Just one more unexpected expense.
LFL when they get like this i dont think theres anything to do but wait it out. seems the sleep part of the brain is just turned OFF. i have had nights like this even in late stage 7. they just donnt want to sleep or cant. i have had luck with being back on neurontin for myoclonous jerks. dr told me it helps with any pain or neuropathy and will calm him down, so i started low dose of 50-100mg and its helping alot to help him sleep when he gets ansy like that. i remember in mid-late stages when DH would pace he would physically wear himself out and into a sweaty stupor walking the halls for hrs at a time. no turnoff button. its a desperate time for both them and us. hope he settles down.
divvi, thanks so much for replying. I hate to think this could go on a long time-don't know if I have the stamina to last through this phase. At least we're past the pacing stage-I didn't think I could get through that either but did. As I mentioned before-he's on alot of meds to keep him calm; I think they're losing their effectiveness.
yes adjustment is crucial. they become tolerant within a relatively short time frame even the narcotic type ones. i have to up the doses of neurontin as well over time.it wont be long i will be up another 50mg but like we say we allways want to start with the lowest effective dose. we have to stay one step ahead of the pharmaceutical game:) ps you will be surprised of how you will work around these dilemmas. we are strong and when the going is rough we prevail. hang in there. it cant last forever.