my husband is having problems staying asleep I have been giving him benadryl== it seems to help, but is this a good idea is there anything better? he doesn't tolerate meds well thanks
Benedryl can cause increased confusion, particularly if used regularly. You might try sustained release melatonin, though its effectiveness does reportedly wear off over time. There are plenty of other medications, but it isn't easy to find the one that works. My husband took Clonidine for many years; it was the first thing that worked long-term for him. But his blood pressure is going low and the doctor wanted him off that and put him on Mirtazapine instead, which seems to work just as well.
I agree with pam-benedryl can cause increased confusion and is not generally recommended for use in people with dementia. We are still fighting the no sleep battle with DH. The dr prescribed Trazadone and has had to increase it to 300 mgs/night. He's sleeping better but not through the night-gets up once or twice at night-stays awake 30-60 mins then goes back to sleep. Melatonin had been helping previously.
My dh is now on Trazadone and also takes 3 mg/night of sustained release Melatonin and this works well for him. However, I have to say that he has never had a sleeping problem (PTL). So far, the few drugs that he is on Celexa, Lorazapam .5 mg/day/and now the Trazapan, have kept him humming along pretty well. He did have a major meltdown when I went down with Selpsis last month, but his doctor was right on top of it all and added the Trazadone.
Hopefully, I'll be able to manage him with judicious use of medication. I've been reading lately about NOT using meds to help regulate AD behavior - my thought is WHAT ARE THEY THINKING? I'm not talking about medicating him into a stupor, just taking the edge off and giving both of us a decent quality of life. I don't know how else I could possibly accomplish all that I must any other way.
Welcome to my website. Tell us about yourself and your husband when you feel comfortable doing so. Please go to the Welcome New Members thread and introduce yourself.
About the medication for sleeping - best to check with his doctor. I know for sure that it is NOT recommended to give Tylenol PM or any of the PM medicines to those with dementia. His doctor will know best.
Trazadone has helped a lot, Xanax and sonata as needed. It is important to differentiate between trouble falling asleep and staying asleep. L used to be on Ambien CR for a few years and it worked for 8 hours. Now sleeping through the night isn't an issue.
Honey, I give my hubby 25mg of Trazadone and 4-5ml Neurontin at bedtime. I used to give him 100mg Trazadone, but when he woke in the morning he would jerk and fall. Even half would do that. So I cut his pills into fourths and he sleeps well, rises a little too early on occasion, but does not jerk or fall anymore. Generally I start him on the lowest dosage possible. My thinking is that he is already impaired so I don't want to over sedate him and impair him further. He is so fragile that it just does not take as much as the doctor thinks he should have so I don't give it to him. When it comes to my husband, I am the expert!
I'm just updating on this thread. They didn't want to give him anything but the Seroquel, feeling that mixing meds might cause more problems than it solved. So he gets 50 mg. in the morning, 50 mg. at 3:30 pm, 100 mg. at supper, and 125 mg. at bedtime. Sometimes it works and sometimes it has no effect. This week I have had three good night's sleep, two nights of around 3 hours sleep, and one night with no sleep. He can yell and shout for anywhere from one hour to 28 hours non-stop--he can yell until he is hoarse and almost non-verbal, and then just keeps yelling some more. So there is no rhyme or reason to whether the Seroquel is going to work or not, and I have no idea when I get into bed if he is going to settle down or if he's going to talk, shout, and yell all night. They want me to try to fine-tune it by giving him a little Ativan along with the Seroquel--not so much that it affects his motor skills--or by giving him an extra dose of Seroquel during the night if he's agitated. (Of course, if he's too agitated, he won't take it at all--and no use crushing it--he just spits everything out.) Very aggravating and frustrating.
Elizabeth I am struggling with this too. Sorry that you are. I started the Trazadone. It really has no affect on him. He talks and jerks. Some nights he gets up and gets dressed. I never know what is going to happen at night. Sometimes he sits straight up in bed and looks at me. He is not violent, but it scares me. I I say anything to him he yells "what". I put alarms on the door and sleep better now. He doesn't cook so not worried about him doing that at night. It seems like he will do this a few nights then stop and then start again. I think my DH is at mid to end stage 6. He doesn't make sense when he talks sometimes. He does not understand conversations all the time. I hope you find what works. Taking DH to Nurologist next month, asking what I need to give him then. I am tired too!
Hi Jackie--Yes, isn't it just a treat? My DH cannot walk, but he does forget that and try to get up--then he falls. So he has to be supervised very closely. He makes very little sense anymore, and doesn't understand very well--he is deaf which doesn't help--but it is hard to get him to follow simple instructions. He is a lot of work, to say the least. It would be nice if the meds were more effective, but oh well. It is 8pm or so, and he is hollering his head off. Sigh. He thinks I'm his nurse. (I might as well be.)
They finally decided to decrease the Seroquel somewhat, and add some Depakote to the mix. DH was just exhausting himself with the hours of agitation and yelling, and after a couple more falls, I think I finally got through to them that Seroquel was really not effective enough. So we started Depakote yesterday, and he had a good night's sleep from 9:30 pm till 9 am, getting me up once because he wanted the urinal…he was incontinent of urine just now around 9 am, but only because he was trying to use the urinal. Now he is starting to yell, but I just gave him the 9 am meds, so they won't have kicked in yet.
Elizabeth, I am glad something else was prescribed and is working. As you know from your medical background, keep an eye on his liver enzymes while on Depakote. That was the reason why they switched dh from Depakote to Neurontin which he has tolerated well. But everyone's chemistry is different.
Well, other than some big incontinence of stool, which fortunately happened during the hour that the aide was here today, it was a quiet day until 3pm, when the yelling started. The 3:30 dose of Seroquel did nothing, so I gave him an additional 25 mg., which is the "as needed" dose. Still yelling. It is now going on 6 pm, and he's getting more agitated and loud, but under the new dosing, he's not supposed to get anything until 7:30pm, when he can have another 25 mg. of Seroquel…and then the 125 mg. of Depakote at 9:30 pm. It's going to be a long evening. My ears hurt. And the family is coming for dinner. Oh, lovely.
Forgot to say above that at 9:30 pm he got 125 mg. of Seroquel as well as the 125 mg. of Depakote. Terrible night--calling loudly and agitated--actually hit me hard two times when I was trying to help him. Once was a really hard slap on the back of my hand, and the other was a hard punch to my arm. Good thing he is so weak and frail--they hurt, but not that much. I slept from 4 am til 8 am, and really don't know if he slept or not, because I was just too tired to care, but at 8 am he was yelling his head off. The 9 am Depakote did nothing, and he continued to yell at the top of his voice all morning, also complaining of severe head, neck, and back pain. I looked in the book, and these are all adverse effects of the Seroquel and/or Depakote, but I think Depakote is the main culprit, because he only complained of a little head and back pain on the Seroquel--and the back pain was an ongoing thing, anyway. So at 12:30 pm I gave him some prn's--25 mg. Seroquel, 0.5 mg. Ativan, and 600 mg. of ibuprofen for the pain. Then I called the Hospice on call nurse, who has seen him before. We agreed that I would probably need to leave DH in bed (forgot to say he was too dizzy and in too much pain to get up), and if the prn's didn't work in 30 minutes, that I would give him another 1.5 mg. of Ativan, for a total of 2.0 mg. Well, in 30 minutes almost on the dot, DH had drifted off to sleep. The Hospice nurse had said the wknd. is very busy, but he will try to stop by for a few minutes if possible, and will be conferring with his colleagues by phone to see what anyone has to suggest in terms of the medication management. So a wild weekend so far.
Elizabeth, so sorry you both are going through this...I can't tell you of the struggles we went through and still are regarding sleeping, aggression, you name it. Has anyone suggested Risperdal? That is what they initially recommended for my husband but even the smallest dose made him immediately a zombie- total brain confusion, tremors, difficulty walking (possible fall risk) and not knowing me or his surroundings (this was right after dx 6 years ago). They changed him immediately to Seroquel and increased the dose as needed. As I've said Seroquel and Neurontin have helped a lot.
Many here have had spouses on small doses of Risperdal and has worked. Not recommending anything but offering possibilities. I just know how horrible it is to go through.
Thanks, LFL. I'll mention Risperdal to the nurses. It is 10 pm and he is hollering his head off again. I did get him up at 8pm and washed him up and gave him supper…then took him in the den with me to "watch a little TV together." Yeah, right. He was OK for awhile--I sat right next to him and held his hand…but then he started with the antsy-ness. My s-i-l stopped in to put him to bed, but s-i-l was barely out of the driveway before DH started with the yelling. I will take my book in there and go to bed early and read…maybe that will calm him down a little. I am so sick of this. My nerves are shot and I don't even have nerves…I am a stoic person…but Good Lord.
Finally gave up and gave him 2.0 mgs. or Ativan at 11 pm. It finally did the trick. But now this morning he is restless, calling out, trying to get out of bed, etc. He used to be quiet in the mornings, but the agitation is increasing. I can hardly go to the bathroom, and I couldn't even get a cup of coffee in me without having to run back and try to settle him. I did get the AM meds into him--had to crush some in applesauce--so let's see if the Depakote does anything.
You might have to get medical help. My SIL was like that and worse, for 6 months in a psych ward. They could not find anything that would calm her. Finally she collapsed as it passed and/or she was exhausted. You need to do whatever it takes for your safety both physically and emotionally.
Yes, this evening he yelled for hours and took all his clothes off and sat stark naked on the sofa in the den…still yelling. I got his meds into him crushed in applesauce, and about one-half of a milkshake I made for him with a pasteurized egg in it. I talked to the Hospice nurse on the phone yesterday (it's the weekend), but his suggestion was to use the Ativan. I have to be judicious about that though, because he's already non-ambulatory. When he takes the Ativan, the aides and I can't transfer him--all his motor skills just disappear. Tonight he is asleep on the sofa (more or less--he's still vocalizing) and refused to even try to get in the wheelchair to go back to the bedroom. My s-i-l and DD have been at an amusement park all day with the grands, so are not available to help…but s-i-l said from the car on his cell phone that he will be here about 10pm to help get DH into the bed. The Hospice folks are making a lot of hints about nursing home placement, but based on my experience with the five days respite, I don't believe he will get the same quality of care he gets at home.
Elizabeth I am so sorry you are dealing with this. I need to ask you a few questions about how it started. I think my DH is starting to do these things consistently. He has been doing them every so often until now. He gets up at night and it is hard to get him to get back in the bed. One night he got up and got fully dressed and was headed out of the bedroom. It was 2:00. Other times he just heads out of the bedroom. The night he got dressed it really scared me. I usually hear him right when he gets up. I must have been really tired. Last night he went to bed early. I went upstairs and he said he was tired. I went to watch TV, it was only 8:30. He came down later and was going through cabinets in the kitchen. When I got him back up stairs, he kept saying "something is wrong". Then he would say "it is bad". He lined up his wallet, keys, and glasses on the counter. The keys do not go to anything just to make him happy. I finally got him in bed and he jerked for a while and then went to sleep. He never remembers any of this in the morning. He keeps telling me there is nothing wrong with him and no one has told him there is. I think he is going to a new level. I feel he is mid to late stage 6. When he talks to me it is not as exact as I say here. But I think we all know about the break down in their language skills. He is getting that blank look on his face, more of the day now. I have started him on trazadone. We go to the neurologist the first of September, so I think I am going to get something else to help now.
jackiem29, believe it or not, DH did not exhibit the behaviors you are describing. He never wandered or got up at night and walked around. I believe this may have had something to do with his dislike of walking. He is a retired policeman, and simply would not walk recreationally. He always said, "I walked a beat in Harlem for seven years, and that was enough." He was never a good sleeper, but did not get up except to go to the bathroom a couple times during the night. Needless to say, we had a good nightlight, and for a long time he seemed to be safe doing it on his own. When he started having falls, I would get up and assist him to the bathroom, just walking behind and "spotting" him in case he lost his balance. After April 14, when he became non-ambulatory, I've been waking up when he would try to get out of bed, and placing the urinal for him. DH has never, ever admitted that there was anything wrong with him. He would get furious and nasty if I tried to discuss Alzheimers, even when he probably was still capable of discussing it. Total denial. Head in the sand. Needless to say, this very neatly transferred all the responsibility on to me. I know what you mean about the "blank look."
Elizabeth Thank you for sharing. My DH started by getting up to use the bathroom a few times a night. I to put in nightlights. They have helped. Now I also keep the light on where the commode is. He cannot find the switch. It is in a Closed area of bathroom. He is ambulatory. But he walks really slow and has started shuffling his feet. He has fallen at his moms 2 times. But not sure if he would have if he had been at home.
jackie, My husband used to get up in the middle of the night and get dressed but he never developed the behaviors that elizabeth is dealing with. Except for these occasional nighttime forays, he was a sound sleeper.
Once at 2:00 a.m., he went into the spare room closet where we kept his dress clothes, and put on a suit with a shirt and tie and dress shoes! More recently, he put on the clothes I laid out for him but he put the boxer shorts on over the slacks.
I never got into debates with him about whether there was anything wrong with him or not. When he made a mess out of something and I would stop him, he would always protest that nobody had told him he should NOT do whatever he was doing. I would apologize for forgetting to tell him not do whatever it was (taking all the dishes out of the kitchen cupboard and loading them into laundry baskets, putting on a suit and tie at 2:00 a.m., etc.) and I would promise not make the same mistake again. I figured he needed to walk away with a shred of pride.
Another interesting evening. DH while sitting on the den sofa said he had to go to the bathroom, but was not doing anything in the urinal. Then he indicated he had to have a bowel movement, but would not or could not transfer into the W/C so I could take him back to the toilet. Pulled off sandals, slacks, depends, and shirt, and started pooping stark naked on the den sofa. Would not even turn side to side for me while I frantically tried to get a chux under him. Refused to use the fracture pan that I was trying to frantically place under him. Yelling, lashing out with arms and legs, poop-poop-a-doo. I quickly shut the den door to the outside screened porch and pulled the blinds, as lawn mower team was outside and I was sure they would love this. Called Hospice nurse who said to give him his as-needed Ativan. Gave him 2 mg. Called s-i-l who was about an hour and a half out. Left DH stark naked on sofa, sitting on poop and yelling his head off. Poured myself a beer (unheard of, btw), went in living room and read library book. Hospice nurse called and I described scenario--she said "fine, just let him sit there and let the Ativan work on him" --and he then did settle somewhat while I made myself a ham sandwich and continued to read library book. S-i-l came at 8pm, and we gave DH the regular evening meds per Hospice nurse's recommendation (Including Seroquel 125mg. and Depakote 125 mg.). S-i-l and I got DH wiped down and into bed with some difficulty, as DH still agitated and not wanting to transfer…very resistive. S-i-l and I assessed poopy den and cleaned up, made plans for upholstery cleaner, etc. I decided to play my harp for a while, as couldn't practice this morning due to DH agitation, other nurse visiting, and earlier-than-usual aide showing up. Broke a string. Oh, yay. Changed string. DH now hollering again at only 10 pm. Cannot have more Seroquel and Ativan until 11:30 pm earliest. Now playing harp and watching clock until 11:30, when I will give him the meds and go to bed.
(((hugs))) Elizabeth. My heart aches that you have to go through this. I almost think it would be worth it to drug him up for a day (if he won't try to get up which I think you said he does). You need relief. One thing to keep in mind when not wanting to place him: he is dying, you are not. Do not let this disease take both of you. Plus, if he is on hospice, don't they do a lot of the care even in nursing homes like checking to make sure they are well cared for?
Elizabeth, I feel so badly for you. Charlotte makes some very valid points. If you were to place your husband, your hospice team should step in to manage his care in the NH. In addition, you can be there every day to visit and check on him - unlike when he was there for respite. I hate to say this but maybe when he's a full resident the staff would take more ownership of his care. I hope you and your DH find some relief very soon.
Hello everyone! It is 4 am, the perfect time for Poop Patrol, Ativan, and a chat! I think at this point, when he is obviously going downhill, we will just keep him home. There is a big change for the worse just from yesterday until today. When the aide was here for her hour, she asked if I wanted him put back to bed as he was just so obviously…how to say it…if any of you saw him you would know what I mean…he is so obviously dying. So it took the two of us, but we got him back to bed around 2 pm yesterday afternoon, and he's been there fairly quietly until he started squirming around and groaning at 3:30 am. So I changed him and gave him just 1 mg. of Ativan instead of 2 mg., as he hasn't been agitated tonight. He just looks like he is falling away…it's hard to describe. I don't mean that he's going to die in the next two minutes, but I think I have to get ready. I was sitting by his bed crying, which is not like me. I will miss him a lot, my crazy old paisan. I just put my arms around him and tell him it's OK, and I think he likes that. If he was in the nursing home I would not be able to cuddle him at 4 am. Well, enough middle-of-the-night ruminating. "See" everyone tomorrow…I mean, later today.
Oh Elizabeth, arms around you. Hope and pray you get some much needed rest. Have you tried playing gentle music when he is yelling? Sometimes there a small part of the brain that will recognize and respond to gentle and soothing music. Just a thought.
Shellseeker, he is just so deaf that he wouldn't hear it. (Or else we'd have to blast everybody else out of the house with the volume!) He used to love to listen to his kind of music--Big Band, Frank Sinatra, jazz...
Elizabeth, I have tears in my eyes as I read through this - BIG {{{HUGS}}} to you! Personally, I am so glad that everyone is able to share in the way they do on this website. As awful as this thing is, there's something to be gleaned from every post.