Well, we started our 'vacation'. We are at some frinds, forever friends, and then going on a cruise. he finds everything anyone says, incorrect and argues about it. the sky is blue, no it's pink and you are stupid to think that, kind of thing. It is certainly making everything very unpleasant. I just don't know how I can keep peace for another 10 or 11 days. I had his zoloft raised to 100 mgs per day, and am giving it to him at night. He's not raging, so I haven't given him the Seroquel. Do you think that would help? if I gave it to him everyday?
Yes, give him the seroquel. My husband doesn't have rages but can be very agitated when out of the house. Seroquel has helped a lot with that. He may be feeling anxious and this is how he is coping. Good Luck.
Absolutely start the Seroquel. In the morning. 50 mg is a small dose. My husband's doctor was here yesterday and he said anytime I wanted to double his 50 mg. in the day, to do so. It does quiet them down, but they are not in a drugged state. You need to do this for YOUR OWN SELF!!
Tried it, he slept all day. Maybe I'll try it at night. I have 100 mg pills, and ground them up, gave him less than half. I need something else, and we are leaving on the cruise tomorrow. cross your fingers for me.
Chris, sleep is not all bad. Nurse just left and she mentioned that they need sleep more and more as the disease progresses. She is wanting him to sleep with a little oxygen mask or clips..(his choice)..and said he'd have so much more energy the next day. Hospice brought the oxygen system over a few weeks ago. NOPE, he won't do it. Just thinking that I might try it...if it gives us more energy in the daytime.
Chris: I agree. Use the seroquel. My DW takes three 100M tablets every day. We still have some rage, but, not near as much as without it and it is something we can live with. Before seroquel, her rages were impossible. I can relate to what you are saying.
I'm new to this site, and I can't tell you how relieved I am to have found it. My husband was diagnosed with Lewy body dementia a year ago and yesterday we went to see his neurologists (saw them six months ago) and they now say his diagnosis is frontotemporal dementia. He has become very easily agitated and has started screaming at me. He was very angry with the two neurologists who saw him and was very aggressive and confrontational. They have now diagnosed him with the FTD and telling me to give him Seroquel. Everything I have read on the Internet about Seroquel is that it should NOT be given to someone with FTD or Lewy body. I'm so afraid to give it to him, but I think I will have to soon. Please tell me about your experience with it. I am terrified of this diagnosis. Lewy body was bad enough but FTD?? Please tell me about your experience with this drug.
Babozek, welcome, you have come to the right place. Others who have spouses with FTD and Seroquel will be along to talk to you, I'm sure. My husband was originally diagnosed with AD but now is going through further testing because it is probably FTD. He has been prescribed Risperdal/Risperidon which is an atypical antipsychotic, a drug in the same category as Seroquel. It has helped immensely to control the rages and anger. It relieves the anxiety which is often the underlying cause of agitation and aggression. My advice: since it has been prescribed, go ahead and try it. You may find that it makes all the difference.
My husband has Lewy Body Dementia and I also participate in the Lewy Body spouses Yahoo group. Many of the people there have spouses who take Seroquel--all the antipsychotics have some dangers but Seroquel is the best of a bad bunch in most cases and can calm the behaviors and improve everyone's life. My husband hasn't (yet) gotten agitated or angry so I don't speak from personal experience.
Welcome to my website. I have put your post in the "Welcome New Members" section at the top of this page. Please go to that section for a much more detailed introductory post from me.
Thank you! Thank you! Thank you! I will try the Seroquel after I wean him off the Aricept. I feel so relieved to have someone who really knows what I'm going through. My daughters think they do, but they don't, not really. I will try to use this site as often as I can.
babozek before I even did the research I realized that aricept was increasing my husband's rages. I am an RN and learned early on that with the help of this forum and your own research you soon become your own expert.
Babozek, did the doctor suggest you wean him off Aricept. I ask this because our Doctor said he could stop it all at once. He was taking it twice a day...(off label). No reaction whatsoever. It does nothing to control rages. Aricept slows progression of the disease, tau tangles, etc. Seroquel is an anti-psychotic drug, totally different effect,..totally different type drug. That said, I'd recommend you start Seroquel TODAY if you can.
When we had to change meds, to get the right one, we went through a series of weaning off one and onto the other at the same time. I was really glad it worked that way. No way did I want to be dealling with DH without any med--not even for a day, at least not for that issue.
Well, we got back from the cruise and over all it wasn't bad.... but never again. We are now at our friends home in plantation, we fly home Wednesday. Can't wait. he is over all so unpleasant, but the seroquel is just not the right one for him. It makes him sleep all day and all night. I tried giving him a really small amount at night, and still had the same problem... As it is, he eats little, and of course he can't eat when he's sleeping. Well, we'll be home soon, and maybe I can relax. I find I hop he stays asleep, just don't want to deal. I feel guilty about that, but last night we were watching, with our friends, Dancing with the stars, and he was so unpleasant that they turned it off. We'll never came back to our friends again, either, just can't deal with the stress.
Chris, I am so sorry it didn't turn out well. I know what you mean about the stress for you, though. Same for me - so I have decided there will be no more travel for us. Hope everything will go good on your trip back home and he will be okay.
Risperadone has been a life saver for us. Although I can give him .75 if he's really agitated, I give .50 every morning and for the most part, we are able to manage. The warning label on this is daunting too..but it was essential that we try it or I would have had him placed in the psych ward and on into placement. We were all upset and he was like a whirling dervish..causing all kinds of havoc. Now he's calmer, seems less bothered by the 'things' that caused so much uproar..and is more cooperative. He still takes Aricept. I don't know if its working or not since he's taken it for 4 years already. Maybe now that you are back in familiar territory, he'll act better??
Oh Chris, I was so afraid of that. Only because I experienced the same thing last June when we went to Florida. They progress to a stage that travel is just NOT do-able. We're trying to keep them alive. We're trying to keep the "old us" alive. For heaven's sake, we were going to stay with his old Clemson College buddy in the lap of luxury and it was gonna be a week of doing what he loves the most along with being on the beach. NONE OF THAT made a dink of a difference. He wasn't enjoying any of it. He'd go along, but mostly preferred to sit and just watch the world go by. They say Alzheimer's is death in slow motion and in a recent conversation with my Priest, we came to the conclusion that the man I married died on January 13,2008 when he had surgery to replace his hip after a fall. From that day forward, there has been no "us"...and his decline has been on going. Picking a date when everything changed forever is helping me, as strange as it sounds. I know he's not there now. Like you, I wouldn't want to go alone, --- maybe the February cruise will be my initiation...traveling on a ship (which he loved) but with my DIL.
Thanks, ladies for your comments. Weaning him off the Aricept is to make ME feel better. I never feel comfortable suddenly stopping meds. But, I think I'll have to put him on the Seroquel. It is now about 12:30 am and he is up and about, talking to me, interrupting me, it's like he has a second wind. While I was working around the house today, he was lying in bed watching TV, now he's the one "working" when I want to go to sleep. And when he says something I don't like to hear, he mumbles under his breath nasty little things. He's out of his room again now.
babozek, when I took my DH off Namenda and Razadyne his neurologist had me do it gradually. Once he was off both his agitation and aggression completely stopped. He also sleeps a good share of the day. When he gets up after I get him to bed instead of taking him back to bed I welcome him back and I am able to sit him in his recliner with a nice cuddly blanket. He USUALLY stays there till he falls back to sleep.
Well, I tried the seroquel again last night, because he was unbearable. Yelling at our hosts, with whom we've been friends for years, but that stuff is just too much for him. I gave him 50mg, the pills ave to be cut in half. should have cut it to 25 I guess, but I just wanted him to 'shut up'. Anyway, I got him up a few minutes ago, he ate a little, and went back to bed. We leave tomorrow, can't wait.
Chris, when we go to Michigan to visit family, we now stay in a motel instead of with one of my kids or one of my husband's sisters. He is more comfortable with that and I don't have to worry about upsetting the routine in anyone else's home.
Gmaewok It was very helpful to hear your comments about Seroquel. How long has your DH been on it, and does it keep him asleep most of the time? I don't think I'm ready for that. We have good and bad days and I would still like to have the good days. Is it okay to give him the Seroquel only when he needs it? Can anyone tell me how long I have with him until he can no longer live at home? The doctor says that with FTD, his time is shorter. Can anyone tell me how long it takes from when your LO was first diagnosed with dementia until the time he can no longer function?
The Alzheimer's mantra is - "If you've seen ONE patient with Alzheimer's, you've seen ONE patient with Alzheimer's. Dementias affect every person differently. FTD is the same. We were just talking about the course of FTD in my support group today. There is no way to tell a time line for progression.
Learn what you can about what symptoms to expect, plan your finances, and then, there is the advice the doctor gave my friend, whose husband has FTD - go home and enjoy your life with your husband to whatever extent possible for however long you have. I think it's advice from which we can all benefit.
As far as your question about giving him the Seroquel only when he needs it - ask the doctor who prescribed it how he thinks it should be administered. In our case, Sid is on Risperdal. He takes one in the morning, and the doctor said to give him the afternoon dose only if needed, which it has not been in about a month. But if I see a change in his mood, and he's building up anger, I will give it to him again.
babozek getting a dementia diagnosis was easy, the FTD took much longer. AD drugs made things worse until we started seroquel. The disease progressed rapidly and I could only keep him home for about a year.
it's hard to give a timeline for FTD. My husband was diagnosed last year with FTD and has had only about a 20% decline in his cognitive abilities and executive functioning. He can still do all of his ADLs (showering, dressing, feeding himself, etc.). Some FTD patients go downhill very very quickly and others do not. No one can give you a timeline other than 8 years after diagnosis is the average but it can be shorter or longer. Sorry I can't give you any concrete information since everyone progresses differently.
If you do start your husband on seroquel and you find it not doing what you feel it should, don't hesitate to call his doctor and ask about it. A medication change might be necessary. My husband was first given risperadal but it did the opposite of what it was intended to do. He was just about ready to jump out of his skin, so we tried seroquel.
The seroquel has calmed him without making him overly sleepy. He takes .25 mg in the morning and another .25 mg in the evening. I have permission to give him up to two more .25 mg pills a day if needed. He rarely needs more that the two pills unless he is going to doing things outside of his normal routine and I have never given him more than 3 pills in one day. Even with the seroquel he takes a bunch of short walks a day and doesn't really nap during the day. He usually falls asleep arount 9pm and is up every morning by 7am raring to go.
I gave my husband the Seroquel a couple of days ago! That day was so bad. It was the first night in a long time that he (and I) slept through the night! He doesn't know what it is. We discontinued the Aricept and I put the Seroquel in its place. It's made a big difference. My daughter gave me respite time today while I had my hair done and did some shopping. While she was here and doing the housekeeping she got to see a little of what I go through each day. Do any of you have a LO who hoards things in their room? Strange things, silly things, things that should be in the trash, things that are from many years ago that he wants all around him? I curious to know if anyone else's LO is doing this. I know from the reading I do that this is caused by his disease but it is still so strange to me. I wish mine would go to bed at 9 or 10, but he stays up, fiddling around in the kitchen, until almost 1 in the morning sometimes. Right now, he is coming up to bed and it is midnight.
My dh hoards only sales slips. He gets very angry if he finds one in a waste basket, thinks they should all be kept on piles on his desk. And he won't let me throw anything away. Today his pants got wet in a shower and I thought it would be a good opportunity to get him to try on some of the many that are hanging in his closet, mostly too small since he has gained weight. Since he needed pants to wear he tried them on willingly but would not let me throw out any of the six pair that are much too small. So I've put them out of sight and will discard all but the best ones (since I know he may lose weight in the future) when he's not looking.
I have the opposite problem here. He doesn't hoard anything but will throw things away if you are not watching him. I have caught him trying to toss out the mail. He stacks things if he sees a pile of papers. I do know that quite a few LOs on this site do hoard things.
m y DH does hoard things, but he's always been a saver. Now, however, he thinks everything is his. We were at a benefit tonite for my grandsons baseball team, and we left with about 10 napkins (paper and unused), the menu for the night, the table number, and any odd papers on the table describing upcoming events in the church sponsoring the dinner. Whenever we go anywhere, he collects all the brochures, etc, he can get his hands on. He thows away nothing, I have to sneak, even the junk mail out of the house, and those catalogues, we'd have them from Christmas 1999 if I didn't periodically sneak around cleaning them out of his 'office'.