For the past 48 hours DH has been showing the above symptoms. He has not slept more than 2 or 3 hours at a time at night, even with increasing the frequency of the Seroquel. Last night out of desperation I gave him 50 mg. instead of 25 mg. when at 3 am he was yet again trying to get out of bed because he saw people in the hall. (Hallucinating.)Even with that, he only slept for two hours, and was vocalizing and noisy the whole time. I am at my wit's end. I barely was able to shower him Sat. and Sun.--he doesn't seem to have any awareness of where his body is--unable to follow simple instructions like "Take one step toward the chair" , "Pick up your feet." or "OK, now sit down." Legs buckle under him unexpectedly at times, and he just seems to physically be working against whatever I am trying to do. The aide came in this morning and was not pleased--said if she had known how bad he had gotten she would have just done a bed bath. She said one of the transfers hurt her side. (Yeah, right--pity party. She had a hard time after one hour with him--but I had him Sat. and Sun. with no aide, and do it all alone. And Mon.-Fri. it's 23 hours/day. I do millions of difficult transfers, but am careful not to whine about it, except on this site, of course. I don't want to get a rep for being negative.) Anyway, does anybody think the Seroquel might be causing this? Should I suggest a med. change? A higher dose of Seroquel? Or does this just seem like normal Alzheimers progression? Could this just be a precursor to becoming comatose and bed bound? Wise counsel is needed--thanks.
My husband will wake up around 5 am in order to take a shower and get dressed, have breakfast, (he can’t do none of this alone) to go meet with his friends/someone, but there’s no one actually, he also accuses me of hiding his brother in the living room and not telling him he’s here for a visit (his brother died a long time ago) my husband also imagine people in our house, so I guess it’s normal with Alzheimer’s, and he’s not on Seroquel though. And there’s nothing I love more than a complainer nurse or even some family member when they give their little help!
If you are concerned check with the doctor about this.
Three weeks before his death, DH started doing (or not doing) all of the above. It came on rather sudden. He was not on Seroquel but was on Ativan and Risperdal. Nothing would help during this time. I rarely got more than an hour's sleep each night. I was totally exhausted and finally got him admitted to the hospice unit at our hospital - 2 nights there and then they found a place for him at a dementia nursing home. He was there 11 days before he died.
I believe it's just part of the progression, elizabeth. Different may or may not control these behaviors. It's a tough road we travel. ((((HUGS)))
Elizabeth, I think it's the progression of the disease...so good days and some bad days. Our experience is almost each day is different.
It could be the Seroquel. It was just the opposite for us...it helps to control the wandering, definitely the hallucinations, calmed him somewhat but never really helped with the not sleeping issue.
Elizabeth,my DH did this when he was probably early stage 6. The Dr. had me increase the Seroquel in 25mg.units,finally at 150mg it took hold,but it was always hard to shower him.When he was admitted ti NH beginning os stage 7 the Dr. gradually withdrew the seoquel,namenda and Aricept.also his Zoloft.In ashort time he became quite callm and compliant. He now seems very happy and is on BP medicine only.
Elizabeth, so sorry that you are experiencing this. I know that you will do the right thing and we are here to support you and listen, you go ahead and vent all you want, we know that this is not whining!!!!!!!!! Have you considered having him moved or calling for the hospice referral? Just wondering, have you asked him who the people on the wall are? My DH got in a bad way last year and he recognized the folks that visited him as his deceased siblings and grand parents. He could not understand why I called it hallucinating. Arms around that things improve.
Elizabeth, We didn't have the problem of not sleeping a night, but he did suddenly go downhill. He had been having problems with walking so we got a walker. He then couldn't transfer from one place to another. He would even miss the chair when transferring to his recliner from a wheelchair. After a respite at a NH they told me I'd need two people to even get him out of the car. That night he went to bed and has never been up since. Hospice had the hospital bed and all the other stuff they order here the next day. The aides give him a bed bath. That was 9 months ago. He is now nonverbal and can't even change his position in bed. Yet he eats well and has great vital signs. Who knows how long this will go on.
Thanks for all the input. I think things are just going downhill. The SW has not called me yet to say exactly when and where his respite will be, but it will be five days around the middle of July. They transport him to and from the facility by ambulette--no way could we get DH in a car anymore. I have decided my two main goals will be to get some good nights of sleep and to take a long, luxurious bath every night. If I travel, I will consider it very carefully so that it is relaxing and not just more stress. Truthfully, just vegetating and doing nothing sounds like a wonderful plan, but going back to NY sounds wonderful, too. So I don't know. I think that pretty soon we will be doing bed baths and probably leaving him in bed a lot more than we do now. Even my strong, fit, son-in-law says the transfers are getting harder, and that DH just doesn't seem able to move his body the way he needs to. He seems to work against the person transferring him--either he goes dead-weight, or gets all "noodley" and uncoordinated, or resists contact guarding and guidance--like tries to sit down in mid-air instead of on the chair…..and it really isn't worth somebody' hurting their back. He is really disoriented and talks to dead people all the time--sometimes he clearly doesn't know who I am--thinks I'm one of the aides. (Well, it's no wonder…but still.) Tonight when I put him to bed and said something about coming in to bed later, he said, "Well, don't push it--that may not be a good idea." He obviously didn't remember that I am his wife--guess he thought I was an aide who was coming on to him. Sheesh.
Well, he went to sleep at 9:30 pm after Seroquel 25 mg. with the other evening meds….. slept all night except for urinal one time at 5 am, and at 8:55 am is still sound asleep--has been as quiet as a mouse all night. So strange--not that I'm complaining.
Just an update, as it might help others: The nurse and I had a talk about the Seroquel, and she suggested giving it to him in the morning (when you wouldn't think he needed it) as well as at suppertime (because of starting to sundown) and at bedtime (because of wildness). Her rationale was that we would get his blood levels up high enough to where we were getting ahead of the agitated behaviors, instead of trying to close the door after the horse was already out of the barn. This approach has kept him pretty much calm, pleasant, and non-agitated. He does occasionally say a word or two to dead people, and the frequent urination can still keep me up three times at night plus that last, early morning wee before I just give up and get up for the day.
Elizabeth, that's what DH's doctors have told me. The am Seroquel is really for the afternoon agitation, the afternoon Seroquel is for the evening sundowning/agitation and to get him calm enough to want to sleep, the nighttime Seroquel is to keep him sleeping through the night. As with many anti-psychotics, there needs to have a level built up in the bloodstream before they are fully effective. I know you know that because you're a nurse.