I posted before when my person was evicted from LTC where we had been for two years, to geri-psych ward for 14 days, put on Seroquel, then moved to a new facility, where he lasted about 72 hrs and sent back to geri-psych for another 17 days where they added Depakote, a drug he had twice before had serious side effects from. Due to the Dr. insisting I would find no placement for him without it, I agreed against my better judgement, while I tried to find another placement with no assurance the good new facility I had found nearby would take him back. Thankfully they did, and the care is so much better. The psychiatrist he had at the hospital is the Dr. for the facility too. He soon had the same bad side effects he'd experienced before on Depakote, they listened to my concerns and took him off of it, but not before adding another drug, Invega, a shot that lasts a month, that acts like Risperdyl, another drug he had a bad reaction to in the past. On the Depakote he couldn't focus his eyes, and started getting less and less able to communicate. He was having ankle swelling he never had. This reversed when the Depakote was stopped. Now he has started holding his head down at an angle, can't hold it up, started having brief periods of unconsciousness, which looked almost like narcolepsy, and then the last week, couldn't rise from his chair to walk and said he had leg pain. Prior we were having walks around the place to visit. THe inability to rise & walk happened over about a week and a half. The Dr. was going to wean him off the Seroquel, and just keep him on this once a month Invega shot. She comes in once a month, and yesterday, due to my concerns and those of his nurse, (who had to call her when she kept everything the same) took him off the Invega. (Which, being intramuscular will be in his system for a while). He is on Seroquel 100mg 3X a day and 200 at bedtime. I have tried to advocate for him, and I could accept the new conditions if I knew it was disease progression, and not dangerous drug side effects, however when symptoms come on fast, I have no way of knowing. He's been on these two black box anti-psycotic drugs now for over a month (the Dr. wanted the Invega to get in his system before weaning him off the Seroquel), and I don't know which is causing these new symptoms or if it is progression. He is now in a behavior unit since re-entering this new facility, and has had no behavior problems. I even wonder if he needs to be on anti-psycotic drugs at all (if I were caring for him, I would take him off to find out what is drug reaction, what is progression). His hitting at people had to do with loss of speech and new incontinence after a deep seated UTI at the other facility, which they attributed to aggression, and I attributed to trying to communicate, as he was flummoxed by his new condition and the care was poor there.(Prior to diagnosing the UTI, which took 4 courses of antibiotic to resolve, they had put him on Depakote and Trazadone for soiling behavior). I am now worried that these new side effects could be caused by the Seroquel? It is maddening to lose what little time we have left with drugs side effects disabling him too. I can accept the changes caused by the disease, but have difficulty accepting ones caused by side effects to medication, for behavior I have never seen. But I can't risk losing placement at this new home, after our terrible 4 months of being threatened with evicton, eviction, hospital stays several counties away, while almost every facility I found refused him based on his record. They haven't had to use the PRN of Ativan that was always necessary for bathing and personal care, but he has been on a lot of medication - first the Seroquel plus Depakote, then the Seroquel plus Invega. He also gets Aricept 23, Namenda 20, and an antidepressant, all of which have been fine in the past. Prior to all this he could still draw and make some music, even in the hospital on the Seroquel alone, although the Seroquel did disable him a lot. (He was a professional musician and artist). Now he sits in a chair with his head down. So does removing the Invega makes sense? Could it be the Serquel causing this sudden decline? The head nurse at the other nursing home said it was all my fault for him being evicted - that if I had just agreed to anti-psycotics he wouldn't have lost his "home" (they kept trying to give him these prematurely, when he wasn't delusional, hallucinating or aggressive, and he kept having bad reactions). Sorry this is so long, but this drug roulette is scary, and I am trying to make the right decisions for him. He wanted his mind to be as clear as possible for as long as possible without over-medicating at the beginning when he was diagnosed in 07. I accept losing him to this disease, but I don't want to lose him to medication, which has messed him up now since Aug., when this roulette started.
mariposa, I understand your concerns. it is indeed a great worry to admin these potent drugs which have such side effects vs having them aggressive and anxious and compliant enough to live in a facility. my own opinion but yes in some the Seroquel is not a good fit. my DH didn't tolerate it well either many yrs ago. he was on zyprexa and yet another super drug but I had no choice and to keep him home had to have him on something to control outbursts. he slept a lot of this time. I only had him on it a few months and then he seemed to mellow out enough to wean off it. Aricept 23 to me could be suspect for behviour issues but I am no dr. many here who tried it found it way too much and went back down to the lesser dosings. if it were me I would address that.i would also try the anti psychotics one at a time and observe reactions. maybe they could wean him off and just try the Ativan in lower doses several times a day. many of us who have spouses hyper sensitive to drugs have been able to use this with good results. advocating for them is a must. the quality of life vs side effects is always a dilemma. hope you find the right combo of meds with lower side effects. divvi
Thank you Divvi. I feel like all I've done is fight for him the last 7 months, with little power once he was committed to the hospital twice, constantly threatened with eviction & then possibly no placement. This has been very hard on him too, as moves are terrible for these folks. He was on Aricept 20 and always has done well w/ it. Each time he lost ground they upped it 5 mg and he got stable and a bit of a gain. We worked with a Memory Impairment specialist at a teaching hospital, where they were doing the trials for the 23 mg dose. He was put on the 23 mg dose of Aricept back in Feb of 2013, and again got stable & had a bit of a gain. Prior to the UTI diagnosis in Aug, he was happy, walking, drawing, making music. So don't know that that is the problem. Prior, just Ativan was working fine for his lack of compliance for care. But the facility said he was hitting at people. I had to agree to some anti-psycotic drug once he got evicted/hospitalized. It would be ok if the drugs made him feel good, but he looks stressed to me.
mariposa--keep in mind that in clinical trials, the original Aricept only helped some of the patients, for a short time (6 months, I believe). So if something has to go, I'd vote for that if he's been on it for longer than 6 months. Like Divvi's husband, my husband was also put on Zyprexa after Seroquel stopped working (was on it for 4 years). The Zyprexa caused him to lean to one side (head and torso), so they added a Parkinson's med (Cogentin) and it corrected that side effect. I'm wondering if that's what you mean when you say he can't hold his head up? They explained that Zyprexa can cause that in younger patients. You need to have good communication with the prescribing doctor, either email/phone/or in person, to address your concerns.
mariposa, in your earlier post I told you I've had a similar experience with my husband due to his aggression early on and the record follows them forever.
I agree with Divvi, it would be good if they could wean him from the anti-psychotics and then reintroduce them one at a time so you could get a better picture as to what is causing this change. In my experience with DH, they continually increased his Seroquel to help control his behaviors. When they increased it to 400 mgs/day, it had the opposite effect - it made him wired and antsy and created more problems. Given the dose your husband's on 500 mgs/day, the high dose may also be causing some of the decline you're seeing. Honestly I think there's really no way to tell until the doctor's start taking meds away to see if there are any significant changes.
You do need to have good communications with the doctor as Marilyn said; it's crucial to getting him the proper combination of meds. I would push the doctor along with the Director of Nursing and even the facilities Director to meet soon and discuss the plan of care and medication. You need to do this sooner than a monthly doctor visit. Good luck, I truly know how stressful this is for you both. (((HUGS)))
I can't add to the good advice that Divvi and Marilyn have given. My only experience is that one day I noticed that my husband was a little dizzy and not walking well. On inquiry, I found out that the nurse had given him Seroquel the night before. (He didn't like baths, and she decided this would make him more compliant.) He had had a prn ("give only when necessary") order some time previously for Seroquel when he was first admitted to this care facility but had never needed it. When I questioned the RN about it, she said that prn meant "may give". Since he was 90 at that time and a high risk for fall, I phoned the doctor immediately and got him to cancel the Seroquel prn order. I think that when push comes to shove, we have more innate knowledge about our loved ones than anyone else. I learned to trust my instincts to guide me through that bewildering time. The more info. you have the better, but when it comes to judgement, I'd bet on yours.
Thank you for your responses and support. He's been on Aricept since 07. I am still so shell shocked from what happened from Aug until he was readmitted to nursing home 2 and this Dr. telling me I had to do this, or he couldn't be cared for by anyone. I about went under with the stress of his 2 ejections & 2 hospitalizations far away while trying to run a business and a house and find a place for him. I couldn't eat, sleep, lost weight, and started having rapid heartbeat, could barely manage basics. I did get the staff to meet over my concerns and they concurred I was asking the right questions, but I am completely unsure of the solution, and so afraid he will do something they think is aggressive and boot us out again and back to the hospital. That, I think, could do us both in. I will reinterate my concerns about this new plan and Seroquel today. These side effects are so worrisome.
My DH was on 10mg of Aricept in the beginning and they changed him to 23mg. He has been on it since 2006. We changed to one 10mg in the morning and one 10mg in the evening. The doctor told me it was not really doing anything anymore. Then one doctor told me if I took him off it he would go back to where he would have been if he never had taken it. The 23mg one dose a day caused severe stomach problems and diarrhea. This months visit they have prescribed Trazodone for DH. He is pacing a lot. Some of the medication she said could cause Parkinson like symptoms. I said I did not want any that would do that or make him sleep all day. The Trazodone she said could make him out of it so much at bedtime that he would not get up to use the bathroom. I said he is not having that problem now I really do not want to start dealing with the incontinence issues. She said it is a trade off to the pacing and aggression. I think I will stick with the pacing and aggression. They want me to give 1/4 of a 25mg dose to see how he does. I may try it for one day. I am not sure about all these drugs they prescribe to handle AD issues, when they create new ones. She said I may be able to keep him home longer. But the thing is the incontinent issues are the reason I will place him, when they start. I to do not know what to do about the Aricept. It is not that expensive for us with our insurance. If it really isn't doing anything any more why take it.
Good luck in what you try. I am really starting to feel guilty about what do,just to make my life easier with this AD. I do not want something that will take what quality of life he has left.
I am sorry that you are having all these issues. It is hard enough to make decisions.
We had no bad effects when he was moved to 23mg, actually got re-stable and a gain. However, once when a new nurse let him refuse his drugs for 4 days, I got a call if I didn't do something about his behavior, they couldn't keep him. I looked at his chart & he had missed so many doses. He got better when he got back on. When he first went into LTC, he was already on 20 mg, and they called then and complained about his behavior. I went over everything, saw his charts, and saw that for almost 6 mos they had been giving him 10 mg instead of the 20 he had been on. They upped to 15, then 20, and said they had never seen a person with such a dramatic response to the drug. So, I think everyone is different.He only got on the 23 last year, and I expected the good of extra dose to last no more than a year. So since there isn't anything else to do, I did expect him to go downhill by now. The sad part is there doesn't seem to be any science to finding the right combo as everyone is different and there are only so many drugs they seem to use for behavior. I too didn't want them to use anything that took away any quality of life, but those decisions were made for us from the ejections and nursing homes committing him. If your DH becomes combative to a point where it is dangerous to you or others, you will need to do something, and hopefully find a Dr. experienced with this. We had a good one at the first nursing home who had been one of our family doctors, but he retired. I am feeling guilty too, and seeing him so disabled is heartbreaking - I feel like I have done this to him. It seems like more research needs to be done to find medication that works. This roulette to find what works is maddening. Since Aug, I was told by the nursing home he was evicted from I had to agree to Risperdyl and Depakote or they would eject us. Then they decided it was a UTI, then they took him off those due to side effects (his behavior had only been soiling in the wrong place) then they added Trazadone, then they put him on Seroquel and Depakote, and off his Ativan, which had always helped and is when he got "aggressive" , which I never saw, and somewhere in there the head nurse added Ambien and found out its bad for this disease, then Seroquel in the hospital with Ativan, then they added Depakote on the 2nd hospitalization, and I agreed as if I didn't get him placed again I was going to run my business into the ground. SInce he's been in the new place, they've kept the Seroquel, taken him off Depakote, added Invega, taken him off Invega. He has had NO behavior problems, but not much life either, since all of this. At this point I wouldn't mind if whatever they gave him made him feel blissful, but he looks stressed. And I'm worried these side effects could be dangerous. I am sorry you are going through this, too. I just emailed my contact at the facility that I need them to meet and discuss and intervene with the Dr.ASAP. BTW, she did promise me she would not "make him into a zombie" - her words. But I cannot risk them sending him off again and risking no placement. This place has high ratings and in the next town -with much better care. My sense is they start lowering the Seroquel, which you can't just take people off of. And see if there is improvement. And if so, keep lowering it.
One big question is how much is drug effect and how much is progression from the trauma of all the moves, changes? The facility can't risk him hitting another resident, and will send him off he does exhibit aggression. And any aggression he showed was situational, I believe. But maybe I am wrong. They don't know who he was before he got there.
If his retired doctor is an 'old' family doctor, have you considered asking him to consult on your husband's medication? Or at least to give you his feed back? You could pay him privately but he might be able to give you some suggestions that the other doctor and nurses will listen to.
mariposa, I truly feel your pain. My husband was the kindest, most loving and gentlest man I ever met...those are some of the compelling reasons I married him. Yet as his disease began and progressed he became a violent monster who I had never seen or known. Yes, the aggression is situational, however it's not always easy to determine what was the trigger and NH's have to consider everyone's safety. Hey, my husband was scheduled for release from a geri-psych facility and the night before his release he slapped a fellow patient in the back of the head and they refused to release him. I knew because I visited every day for as many hours as allowable he didn't like this guy, so why did they even have my husband near him? Couldn't they tell that the two of them didn't get along? But when questioned they denied knowing and kept telling me DH was still violent and a safety risk to me. The facilities only know who they are now and have to make sure everyone's safe. Yes, it sucks, but that's our reality.
It does suck, LFL. So I went to see him after work and they told me he couldn't get up or walk today, was way worse, and they'd put him to bed. I assumed they'd call me if there was a drastic change, but I should have called them They called the Dr. tonight. The Dr. ordered blood work and urinalysis. Of course I tried for most of the visit, but couldn't get a sample. This is looking like the first bad reaction he had to Depakote where he got almost comotose for three days after sudden weakness, which he recovered from fairly quickly when it was withdrawn about 6 mos ago. He went off the Depakote about three weeks ago, when they added the Invega to the Seroquel, which they were going to wean him from, so who knows which drug he is reacting to? Took vitals and said they'd be vigilant watching him. He could communicate that he felt very weak. Said they had to feed him tonight. His legs and feet are very swollen. He has been able to feed himself up til today. I am sure this is a drug reaction because I've never heard of such quick progression, has anyone else? I just hope as the Invega gets out of his system there is improvement, and he doesn't go further downhill from something that isn't Alzhiemers. The Dr. didn't want to change the Seroquel dose until she gets results from tests. He just wanted to sleep, so I finally just came home. Thanks so much for your support, thoughtful answers, and hugs.
mariposa - I looked up the side effects of Invega and extreme dizziness, weakness and sleepiness are common side effects. As I recall they are also side effects of Seroquel (haven't checked for a while). There are also some significant metabolic side effects as well such as diabetes. I'm no doctor but based on your observations of your husband and his decline coincidental with the introduction of the Invega, it seems like the Invega may be causing these reactions and sudden decline.
In a similar situation I printed all the side effects associated with a medication that had been recently introduced to my husband and gave copies to the treating physician and had him explain why the drug was NOT responsible for the negative side effects. He couldn't say for sure that the drug didn't cause it (he had to admit that) but in his opinion it was not causing what we were observing. I said that if he couldn't say definitely that the new med wasn't causing the negative side effects then it was reasonable to stop the drug. He did..wasn't happy with me but he stopped the med. Guess what? No more side effects!
FYI, in case you were not aware, Invega is used for schizophrenia.
LFL - yes, we have to educate ourselves. Doctors I do not believe have the time and maybe not the desire to know the negatives of drugs. Good ones will listen to the patient or in this case - us - when we bring them up.
You say the shot last a month. That sounds like a whole lot of medication to have to get out of his system. I do hope you can get him off it and he will recover some of what he has lost.
Mariposa sometimes this disease will not surrender to any drug or cocktail of meds. I have no idea what stage your DH is at so my comment may or may not be relevant DW was in 2 different Hospice Hospital units on a total of four different occasions with three different teams of Hospice physicians for the sole purpose of regulating her meds. Every combination and permutations of every drug mentioned were tried on DW in an attempt to halt her incessant wandering 24x7- sleepwalking - zombie like behavior. She was finally DXed with Terminal Restlessness. (google for definition). It's caused by a chemical imbalance due to organ failure in the dying patient causing a chemical imbalance. The same can happen rendering the patient unable to ambulate and/or become very aggressive, it's all a function of how the chemical imbalance affects the brain. There is no drug or combo of drugs that can help, In her case it lasted for nearly 3 mos before she passed
Marty, DH was not diagnosed with Terminal Restlessness, but that's exactly what he had the last 2 months and it continued to get worse. As you said, there are no drugs that will help this, it's just part of the dying process in some patients. It's agonizing for the caregiver as well as the patient; just horrible.
Good ideas LFL, I like that approach to questioning the Doctor. My partner is at about mid to later stage 6. He is off the Invega. Dr.won't lower Seroquel yet, still afraid he will have aggressive behavior. No UTI, blood work ok. Lowered the Ativan. Adding Lasix for leg swelling and a regular Dr. into the mix. I am feeling a lot of sadness and grief at the profound losses in him - he was doing well prior to the whole drugging/uti/eviction/hospitalization/drugging/new placement fiasco, that has taken up the last 6 mos.