My partner has been taking seroquel for the last six months. (along with Aricept and Ebixa) The seroquel has worked wonders for controlling mood swings and rages (which at times were pretty scary) Just recently though, he's been really sleepy in the mornings, and hasn't been able to get out of bed until around 10am. (This is not like him, before AD we were always early risers...I still am as I have the business to run, and daughter to take to school etc) He's also started to go to bed really early. This makes for a very lonely time but this isn't the issue right now. I spoke to his doctors today and they said that the seroquel has built up in his system and that he should reduce the dose.
This worried me slightly, as although I would LOVE him to be up and about more (even though he can't actually do anything much and often sits around mute, him being around makes everything seem far less lonely), I'm afraid that the rages will come back. has anyone else experienced this requirement to reduce a dose of seroquel or another anti-psychotic drug..? If so, did it work without the reoccurance of rages and/or mood swings..?
My husband is on Risperdal, which is similar to seroquel. He was prescribed up to 3 a day. (small dose - .25mg.each). I never needed to give him more than 2 a day. One in the morning and one in the late afternoon. I reduced it to only the morning dose once the rages seemed under control, but I kept a very close watch on him in the afternoon. If I saw him getting agitated, which was a precursor to a big blow up, I gave him the afternoon pill. It has been months now, and he is fine with just the morning dose. It is trial and error.
Tiredness and sleeping more often is part of the disease.Their brains are working very hard to keep up, and it is exhausting for them.
Lynne, my dh is about stage 5 and needs about 12 hours of sleep. This started before he was put on Risperdal, which did not affect his sleeping one way or the other. When we were staying with relatives at Christmas time he functioned best if he had a nap in the afternoon, in addition to those long nights. Never naps at home, though. I love the "lonely" evenings when I can do whatever I like.
We are in the midst of meds changes now. G's PCP changed the dosge to 100 mg of seoquel XR (timed release)at night to help the morning zombies..that really did work, but then the anger came back..right now he says he needs to move because he is afraid he will hurt me. We had a Doc appt on Monday..treading lightly here.
We've been on 25 mg of seroquel 3x daily for 3 weeks. It doesn't seem to have had any effect at all. The rages and the delusions persist. We were at the neuro on Wed.He said cut the sinemet first before increasing the seroquel. It seems the sinimet gets built up in the bloodstream and can cause agitation. It really is hit or miss, and now DH doesn't want to take any meds. He feels the MD's are using him for their experiments.When I don't think he is paying attention, he is absorbing every word.Phyllis9
When I read the stories posted here, I have a lot of empathy for you each and every one.
But, yesterday my DW wasn't feeling well at the day care and they thought she had a UTI, so I took her to her PCP and they didn't find anything wrong. She has declined significantly recently and he suggested that we needed an 'evaluation'
Long story short, he sent us to the ER and she was admitted to a GeriPsyche hospital. They will check all medications, etc and then probably suggest that she enter a facility.
Dean, I have empathy for each and every one as well, but I wish you weren't hurting so. I guess we are all hurting, aren't we?
It seems as though things change so very quickly. For the last few months things have been going along quite well. I knew it wouldn't last, especially after reading some of the stories here, but I felt good because my husband seemed to be doing so well once we started the Seroquel. He didn't have any rages since we last saw the neuro and started him on it. But, it was too good to last. This past week has been very difficult. Here I was, giving advice to some of you, telling you that once you learned to accept the idea of dementia it gets easier to cope. However, this week brought back, not really rages, but he was easily angered. Three days in a row he went up to his room and slammed the door and wouldn't come out after something I said. After several hours, he comes out, and acts as though nothing happened. His memory is way off. He can't remember what was said or done an hour, sometimes even minutes, before. He began doing the quirky things he had been doing before, filling up sinks to the top with hot water, trying to fix things that can't be fixed, all kinds of silly things. The first day it happened, I was stunned... It came out of the blue. I'm feeling so out of sorts because of this. I want the other way to last just a little longer. Maybe it's just a fluke and things will go back to the other way for awhile.
Bev, I am just where you are...coasting for a good while, then wham! The anger, soon forgotten by him, the obsessive "fixing" of crazy things, unintelligible talk, complete stubborn behavior, etc...never ending..plus the physical down slide of balance and walking. Doc appt on Monday.
It is good we have this place to share our victories and defeats.Sometimes I wish I could distance myself emotionally, so my mood doesn't fluctuate the way his does.Then I wonder if distanced, I would be less warm and loving myself, and I don't want that for me.So it's roller coaster time. At least we wave at each other each time we come around. Find something to give yourselves joy today.I will, too. Phyllis9
Bev: We went thru a period when the meds ( including Seroquel) were working and we had some peace and tranquility (I emphasize 'some'), but, when things started downhill, they progressed rapidly. It still amazes me that you folks describe what your experiences are and I have most of the same ones. You take the words right out of my mouth so I try not to just repeat what you have already expressed.
Dean: Isn't it hard trying to manage your own moods when your partner has such changing moods? This is what I find to be extremely difficult. After one of his rages he goes into his room, doesn't talk, and when he comes down, acts as though nothing has happened. I, of course, am feeling the results of that burst of anger of his and cannot match, although I try, his mood at that time. It is almost 1:30 in the afternoon right now and he hasn't come down, except to get the newspaper earlier this morning. If only I could get out more, maybe my moods would be more accepting of his. Sometimes I don't leave the house for 6 or 7 days! And I mean, literally, almost a week. Sometimes I leave him alone to go to the local KMart (big deal!). I have told my daughters that I am taking my sister out for her birthday next week and one of them will have to stay here with their father. Didn't even ask, just told. And, I'm going to take her to a VERY expensive restaurant, to hell with the cost! Gosh, I'm really in a mood, aren't I?
Sandi: I know. You're right. I have a hard time asking for help, even though I'm sure I can get it. I don't mean to be a martyr but maybe that's what I'm doing. Okay. Right now, I'm going to do something I really want to do, start making a cookbook for my daughters. I was going to vacuum, but I'll let it go. It's a beautiful day, although very, very cold, and the sun is shining on my desk and I can look out at my garden while I type. We haven't seen the sun in a while, so this is good. I'll keep your advice in my head and everytime I feel sorry for myself I'll repeat it like a mantra.... "This disease will take TWO victims if I allow out." Good advice. Thank you.
Lynne, the 1st time Jim went through the sleepy stage, the doc recommended that we have a sleep study. Sure enough he needed a Bi-Pap Machine. That has worked beautifully until recently. Now as the disease progresses he is sleepy most days. I'm letting him sleep as much as he wants, it makes him happy to nap. If he has trouble sleeping he has Ambien, which works well. It is a crazy cyle that doesn't make sence to anyone but us spouses.
Bev: You are so right about this disease taking control of our lives. Moods included. I find that, no matter where I go or what I do, I still think about coming back to it. I am seeing a counselor in our Neuro's office, at his suggestion, and she says that I am stressed and showing signs of anxiety. Duh-I know she is right, but, what do you say?
I think I am doing the best I can and I am sure you are too. I think there are some wonderful caregivers on this website and I am sure you are one of them. Just hope that this hospital stay (evaluation) will give me some answers so I can make some decisions that have to be made.
Dean: I know EXACTLY how you feel. I'm on the computer now because I just made him angry trying to make a joke. So, I had to get away for awhile and instead of taking it out on him, putting it down in words. Yes, Dean, I think we are doing the best we can. But, this part of it is so hard. Having to control our moods all the time is sooo difficult. Of course, you're stressed; I'm stressed, all of us going through this are stressed. What did your counselor suggest you do? I've seen a counselor, taken a support class for caregivers, have a terrific PCP who listens, read all kinds of books on the subject of caregiving, and found this terrific place to air my feelings. I go in my room and breathe deeply while counting to 10. Exercise helps somewhat. All of these things help but, as you said, we never really get away from it. It's a constant worry, waiting for the other shoe to drop, so to speak.
I do think, however, that it being winter here, and the weather is sooo cold, with more snow coming today, that it's a lot easier to cope in the summertime.
Lynne, dh has been on 225 mg of seroquel for 1 year +. This summer I decided to lower the dosage because he was doing well and slept alot. The dr agreed we should try to lower the dosage, slowly, so I changed the afternoon seroquel from 75 mg to 50 mg. Actually I found he slept less and was a bit more alert. However, after 6 weeks, with the lower afternoon dose, I noticed he was becoming more restless and agitated. Dr. noticed behavior changes when we saw him in December and advised me to put him back to the original afternoon dose. He said he thought dh did much better on the higher dose. DH sleeps about 10 hours at night and I've noticed lately that if he is awake and alert for 4-5 days, then he spends the next 1 or 2 days napping most of the day. I think it is the brains way of "recharging" after several days of being "alert".
Dean, sorry you have yet another hurdle to get over, or under, or through. Please keep us posted on your DW and yourself. We really care. Don't forget to take care of yourself.
We saw G's PCP yesterday and added 50 mg of Seroquel XR (times release) at lunch time in hopes of controlling the rage outbursts..he in on 100 mg at dinner time as well. We'll see if this helps. As his Doc said, it is trial and error, but g avoids being in the same room with me for any length of time as he is "afraid of hurting me". Heck of a way to live.
beachgirl - do a search on the subject and you will find a threads where we discussed when to take them off the meds. It is a hard and very individual decision, especially if we do not know it they helped.
Thanks to All: I think a plan is in place that they will discharge my DW from the hospital on Tuesday and I will take her to a NH here for two nights. On Thursday, I will drive her to Tulsa where she will be placed in a facility. My daughter is here today packing her Mothers clothes, jewelry, etc., and this has been one of the hardest days of my life. I finally realize that she isn't coming back and it hurts. I can't tell you how I dread the week that is to follow.
Sometimes, I wish I could cry, but, was always taught that real men don't cry so I never learned how. That was a terrible way to raise boys back then, but, I can't undo it. I also makes for a hard way to live and cope with things like right now.
Dean, adding to that is that for a while you will not be close to her where you can visit daily and spend quality time with her. Don't be so hard on yourself - it is possible to learn to release the pain through tears. First step is to give yourself permission daily, hourly if needed.
And if that doesn't work, stomp your feet and say "Damn, Damn, Damn." Or beat up a pillow or cushion. Find a way to release those feelings. My Dad taught us that, when my brother was about 4. One sister was scandalized, but Dad set her straight. "He has to have an acceptable way to express the pain when he's hurt. It's no good to hold it in." Even she laughed when Dad said it wouldn't as well if he said "Cuss, Cuss, Cuss." I thought that was pretty enlightened of him--1966/he was 44. We lost him 6 years later.
Exactly... words right out of my own mouth. I don't know what I'd do if I didn't have this site to come to. I talk a LOT, I've been told. Not out of nervous behavior....I just have a lot to say. It annoys my father. "DH" has always told me to shut up.
As for expressing one's self....I just find it so therapeutic to go into the barn, face the corner of one of the stalls and scream curse words. I can't cry much anymore, either. I want to, but the tears rarely come. Lately, I'm only able to cry about the enourmous changes coming in my life.....the horses, my fragile arm, etc.
Dean you can give yourself permissioin to weep over the loss of dear wife. its a lifetime of memories that goes with her as well. bereavements come in all forms and this is just another part of the nasty future we deal with while humbling ourselves to AD. my best wishes that your wife transitions well and she will be content in her new surroundings. you need to recoup and find things that will fill the void, if thats possible, and many say the visiting will be much easier as you can have quality time with her now. hugs, many here who know how you feel. divvi
Dean.. I just learned that only real men cry, and that learning to cry is actually easy. You just have to overcome the mental block that society has imposed on men. I recently heard someone recite the Lord's prayer, and that made me cry because my dw has the bible open to that page, and she knows what it is, but is unable to read it anymore, nor recite it from memory. It is emotional for me, especially since my 4 yr old grandaughter can jump in and say it perfectly. I am grieving every day, and I think when my dw passes away, I will have done my grieving, and will view the rest of my life as a bonus gift...
Dean, I have always had trouble crying but also have discovered that it helps if I can release the tears eventually. I suggest you try to find something that might push you to tears - an old scrapbook? a bible? a "women's movie" ? Once you get going you won't stop but you'll feel much better afterwards.
The cursing helps me, too. Damn has become part of my vocabulary, and some other "bad" words, too. This, from a nice quiet girl who never did or said anything bad.....
And, Dean, give yourself permission to cry. You're going through another life change. There's no one in the house right now, so just do it. Scream a little, too. I do that when there's no one in the house. If he's outside, I go in the bathroom and scream as loud as I dare. It helps.
Meds effect them differently. My husband is stage 6.He was up all day and all night until he just crashed and then slept for a long time and the routine started again. His seroquel was recently changed from 25 mg as needed, which was daily, to 250 mg/day (50 at 4:00 pm, 100 at 6:00 pm and 100 at 8:00 pm). He has also started on Risperdal. He seems to be up more during the day now and sleeping more at night.