My friend Helen, just called, was very upset, Her Husband who is in a N.H. has been acting up..having violent behavior...they told her they can no longer can keep him there, that he needs to go to a Physic hospital...she asked them to increase his Seroquel..she is beside herself...wants to know if anyone has had a similiar expereience..she needs some advice.. As for myself...it is now 4 weeks since Dario has passed..taking one day at a time...new way of living!!
At one point my DH became so violent the police were called to the facility and he was involuntarily placed in a lock-down facility. I was told that if he could not be controlled, they could not take him back--and that's hard to hear, but they can't have it otherwise. Anyway, he was in lock-down and they did get his behavior under control w/meds and he went back to the facility. I don't know what choice we have sometimes. My best to her. I fully understand her anguish, but it did work out for us.
Joan asked me to put my two cents in-so here goes. I know some posters would not agree with what I did-but they were not in my shoes. My husband had three psych admits with very poor results. He escaped from two secure facilities multiple times. He became so violent that I had to hire a private aide or the dementia only facility would not keep him. I am an RN and have many good friends in my community. On their advice I tackled DH's psychiatrist and told him we needed to drastically increase the seroquel dosage to the point of extreme calmness and then gradually reduce the dosage. In my state it is illegal to chemically restrain a patient-I knew that and the doc (who is a friend) knew it. There was not place in our entire state who would take my husband in his state of violence and exit seeking. He very grudgingly agreed. A psych nurse would monitor my husband and instruct the staff as to his needs during the transition. I was aware of the potential cardiac complications with the drug. Dementia is a fatal disease-so what difference did it make? DH did not get knocked out as expected-but did calm down. Gradually the dosage was reduced and I could discharge the aide. This was three years ago and he is still here with us. Your friend will have to make her own decision. It is not an easy one to make. Please give her my best wishes.
Thank you for your comments...I know it will help Helen in making a disission...It is wonderful that we can depend on this web-site for so many things..it is a Blessing...Bless you all
Bluedaze, thank you from the bottom of my heart for yourcomments and sage advice. My poor Dh has been suffled around so much in the past year and a half, with vascular dementia. Had been in as psych hospital for 8 months and was settled down beautifully, but because of the psych hospital stygma, was very difficult to place him in a NH. He has been in a wonderful NH for the past 5 months, but now has become in recent weeks quite violent, hurting the staff, not the patients. Today was told they could no longer keep him there, had to transfer him to a Psych Hospital,and I am completely destraught...I had asked them to increase the Seroquel from 300 mg to 400 mgs, but they had done that for a month and he was sleeping too much and not eating, and lost weight. Tomorrow morning I will again speak with the psychiatrist on call and the social worker as to my options where he will go, all a distance of 50-60 miiles. I cannot drive that far on major highways. I had said that I would gladly sign a release from any liability resulting from their increasing his Seroquel from 300 mgs to 400 mgs a day, but got no response for that. I agree that dementia is the end in so many ways, and would much prefer to have my DH go peacefully from a stroke, or whatever, than to suffer in this near vegetative state. At this point, my state of mind is that I will go before him..Help, thanks!!
I made it through the night, and now just got a call from the NH that they are taking him to the hospital for psychiatric evaluation. What result and action that will bring, who knows. I know they won't take him back nor will the psych hospital where he had been previously. I am truly in limbo. Have any of you experienced a spouse who has been this combative and striking, pinching, etc. the staff at the NH? How was it handled? I did read a message from Kathryn 0907 on the Seroquel thread from last July. Are you still here Kathryn? I need all of your support, and thank you from the bottom of my heart!
joang, I have only recently joined this group and love this site and thank you for it!!!! I am so amazed at how you keep up with everything and cope at the same time with all your tasks. I read your blog yesterday and I think, be you having been on a cruise or just a day or so away, there is the travel let down as we come back to reality that makes the get up and go get up and go.. As to he problems discussed here, being I am not in this position, and I hope it does not come to this, I am at a loss. I am curious about the personalities of folks prior to diagnosis of this disease. Did they have this temperment at any level prior to the onset of Ad or the other dementia forms so that it is amplified or is this something that can just come out of the blue?
Although many have the experience that their spouses personality (good or bad) remains the same throughout the disease, many of us have experienced a significant changes in our previously calm, gentle spouse's personality. Changes really have to do with the course the disease takes in a persons brain. Patients with more damage to the frontal lobe of the brain will have the most significant personality changes. Patients with FTD definitely have this issue but it is also seen in many AD patients and in vascular dementia if the damage is in the frontal lobe. Some damage to the frontal lobe can produce euphoria and jocularity, in others it is anger and violence, it is not predictable.
It can come out of the blue just like any symptom and is a sign of further damage to the brain from the disease. All caregivers need to be cautious and protect themselves and other family members if their spouse begins to show any aggressive, angry or violent behavior. It can escalate at any time and like anything else, it really isn't them...it is the disease.
Bluedaze and Catherine, thank you for contributing your experience and knowledge to me. I am going to question the doctor (whenever he calls back!!) about the frontal damage being a factor in this. But, my DH has had a temper on occasion throughout the years, but primarily a caring loving man who was always ready to help others without hesitation. The fact that he has been in a wheelchair for about 3 weeks now and keeps trying to get up, with an alarm going off, is disturbing the staff. Why they can't put a safety belt, loosely, to prevent falls, is beyond me and in no way is cruel or restrictive, just safety!
Bluedaze, the NH did put him on 400 mg Seroquel for a month but decreased it to 300 recently because they said he was sleeping too much and not eating and going down hill, lost much weight. They will not even consider increase now, despite my pleading.
try another medications then if the seroquel is losing its effect- there are several others that can control the behaviours as well. it may be imperative for him to go to the psyche hospital to accomplish this. they will have to iron out another round of medications that work better before he can be replaced. so sorry, i know how disheartening this all is for you as well as him. hugs. divvi
A very highly respected Psychiatrist at the VA Hospital in Togus, ME once told me that Seroquel could be increased, in some patients, up to 1200 mg daily. It effects each person differently. My DH is on 50mg in the am and 100 at night. Since my "accident" I have been on 150XR and it has literally been a life saver. Remember, there are ALWAYS side-effects, such as chance of death with the Advair inhaler. Well.............not being able to breathe would also have a chance of death! Hang in there, we are all in this together. Arms around, Susan
HLK, I am so sorry you are caught in this position. My husband went through a violent stage and was kicked out of the ALF that he was in and put in a lock-down ward. They way over medicated him to the point that he was a zombie, losing weight and not eating. I did find that I had better success than they did at getting him to eat - I think that was because I could spend the time waiting for him to eat.
They had him on Depakote, Ativan, Seroquel along with his AD drugs. I was able to place him in a facility that is terrific after this experience. The social worker on the psychiatric ward was of terrific help to me in finding the place. I ended up with him a 1/2 hour away from home.
My approach to the doctors/staff was that he needed to be safe but I also wanted them to be safe from anything he might do. He still tried to strangle someone with a belt, threw a chair at a nurse and did some very interestin punching. One of the things that I noticed was that he responded much better when they told him what they were going to be doing and then did it with him versus just grabbing him. Sometimes part of the battle is just figuring out the best way to approach them.
Good luck with this one, it is a very tough battle ((hugs))
Therrrja, I feel for you what you have been through! I hope that things are going more smoothly now. You are so fortunate to have found a suitable facility, and only a half hour away. The latest with me is that my DH is in a hospital of renown, right near the NH where he has been. After giving him a thorough medical exam, they found he has pneumonia and is in the medical section, and not in the psychiatric floor where the NH intended to send him. We met with the psychiatrist yesterday and he feels that they can adjust his meds and he will be okay and not be sent to the psych floor. I surely hope and pray so! He has calmed down, sleeping much, but on 400mg Seroquel, plus 250mg Depakote. If they won't take him back at the NH, I dread the thought of that. It seems that the pneumonia may have caused this, or just the nature of the multi-farct dementia.
I am just beginning to see how very serious even the simplest infection can be with our spouses. Amazing and frightening. It is to the point where if I see or read about a behavior change, I think INFECTION FIRST!
My husband is also in a wheel chair with an alarm but he also wears a safety belt. He does strike out once in a while at the staff and sometimes pinches them, but we all agree that it is more from frustration than anger. He can not speak and has no other way of making his needs known. They have learned to stay out of his reach while talking calmly to him. He takes Seroquel and Depakote and does well most of the time. But sometimes, the promise of ice cream works better than the drugs.
MY husband was sent to hospice for respite/medication adjustment due to his being so violent toward the cna's that day. The recommended this as they were afraid for my welfare. They used haldol on him there and I heard he did not have a good reaction to it. Unfortunately he never made it home. I think the behavior was the beginning of his downward spiral. Seroguel worked well but he couldn't swallow it and twice crushed the xr version in his mouth before I could stop him. I pray they figure something out for you. (((((hugs))))
ehamilton, it is interesting to hear that your husband has a safety belt as well as the wheelchair alarm. They tell me that NH's do not allow the use of a belt. I find that ridiculous, when actually it is a safety issue, not one of punishment or cruelty. I agree that it is frustration not being able to convey his feelings and his loss of dignity. The hospital also put him on Haldol for a dose or two, but am told he does not need that. We are having so much snow, 14 inches, that I cannot even get to see him, 40 miles away, until tomorrow. My husband also is on Seroquel 400 mg and Depakote but they are going to try others. Thanks for your prayers and hugs, to ALL of you who have taken the time to help me.
Helen, I to have been where you are. I also had to have my husbands meds increased, and then backed down. Meds must continually be adjusted. My doctor also changed him from Seroquel to Haldol. For the most part he is doing good.
Helen, I am so sorry you have to deal with this behavior again and particularly while we're in the middle of a snow storm (we have 24"). At least this time Gerry's in MMH not HPH. As we discussed, Rich was originally put on Risperdol while at HPH but because he reacted so strongly to the first dose (zombie) they switched to Seroquel and fortunately that has kept him calm enough to be home. Rich is also on clonopin to help with aggression/agitation. I feel confident that you will be able to work with the staff psychiatrist at MMH and get him calmed down before he is released. Typically med adjustment takes a few weeks to work. Perhaps you should ask the NH director/nurse what the requirements will be for readmitting him to the NH. When Rich escaped from the ALFthey refused to take him back. My heart is with you during this very difficult time. One last thought - how did the NH back him down from 400 mg to 300 mg? Rich's doctor said it was extremely important that they back off slowly to avoid behaviors associated with withdrawal.
Laureen, I am happy to say that the NH did take Gerry back late yesterday. They are still treating him for the pneumonia. He was very cooperative at the hospital, only agitated when he first arrived there, as expected, in a new environment and new people around. He was eating better too, pureed food. When he got back to the NH and I and my family were there, he was really agitated with 3 aides trying to get him out of the bed to be weighed, didn't want any part of it. He gained back 2 lbs.! They told me today he has been fine. How do I keep it that way????!!!!
The issue with the meds is quite disturbing. I was not told the truth about the Seroquel at the NH. He was still on 400 mg according to the records sent with him to the hospital, only the times administered were different. 100 at 9 AM, 200 at 2 PM, and 100 at 9 PM. This despite the fact that they absolutely refused to continue the 400 mg because they could not over medicate him and had reduced it to 300 since he was sleeping too much, not eating and losing weight. The hospital psychiatrist and doctor had him on 400 mg Seroquel,: 100 mg at 9 AM, 100 at 1 PM, 100 at 5 PM and 100 at 9 PM. Theses are the orders sent back from the hospital to the NH. Tomorrow I will be able to check if this is being done. I also intend to change the NH psychiatrist from the one who was all ready to send him to a psysch hospital. It is as though he is the only patient they ever saw who is agressive and grabbing on to them, and so many of you have had the same experiences, and it is to be expected, not in every case, but very prevalent.
I certainly will pursue this and definitey get the truth of the med situation tomorrow.
I wish I could respond individually to each and every one of you wonderful ladies in my new Circle of Friends. Thanks so much!
Helen, I am so glad that the NH accepted him back. If you can go at different times of the day for a while to see how he is doing, do it. This will let the place know that you are watching and that they can't figure that you are there only at certain times of the day. I trust that the place where my husband is is taking care of him but I am there at different times to ensure that they are. It is worth a bit of effort to become friendly with several of the workers there as they will not only keep you informed of what is going on with him, they will also pay a bit more attention to him so they can keep you informed.
You are right that many places have seen the aggressive behavior many times. Some places are better able to handle it than others. You may also notice that some of the workers there handle aggressive behavior better than others. In my husband's case, the person who was calm and offered him something else to think about and do had better success than the one who spent a lot of time explaining and was uncomfortable. They are human emotion barameters and pick up on the negative emotions very quickly and react to them. My method was to get between him and whatever it was and use hugs and kisses along with a walk around the place holding hands to distract him. This method usually worked but looking back, I can see that I was nuts and could have been badly hurt. In my husbands case the trigger was usually the word "no".
HLk - Charlie's seat belt is considered "self releasing" because it is velcro. He could easily unfasten it if he knew how, but he doesn't know how. They have written an order to discontinue the chair alarm since he has never made any effort to release his belt.
I looked through this thread - I thought I remember about someone saying a patient got in trouble for grabbing an aide too hard.. Sometimes my husband, when I'm helping him dress or undress or shower, will grab my arm tight, not at all in anger or anything, just like he can't really control his strength. When I try to wash under his arms he clamps his arms down tight and if he catches my hand there he thinks it's very funny! I haven't found any way to change this behavior but I can imagine it would be scary for an aide in a facility.
I think they have no idea how hard they are squeezing or holding onto something. Just normally this morning I put my leg between his and he squeezed. He never has done it tightly so as to hurt or that I can't pull my leg out. This morning he was squeezing so tight there was no way to pull my leg out and it was starting to hurt. He is still in the early stages but evidently this can happen early on. I would imagine it is like mentally retarded (sorry if not politically correct) - they have a strength they don't realize. When I was a child a friend's brother was retarded. One day out of the blue he grabbed me around the neck and scared the xxx out of me. My friend had to scream for her dad and it took a lot for him to pry him loose. He just would not or could not let go. I think when people here speak of their spouse getting violent I flash back to that and my dad beating me. I pray my hb is not one that will get violent. I am afraid I would kill him even if I knew he couldn't help it. If he shows any signs of that it will definitely be an emergency call to the doctor.
Reading these posts frightens me but, then again, they are so helpful. To know what I will probably face in the future because of the FTD is truly scary. When his neurologist put him on the Seroquel I was so grateful for the calmer person. Hopefully, it will keep things at bay for a while; the neurologist said I can increase it whenever I feel it's needed.
therrja, and ALL of you wonderful, caring, ladies..I have not been keeping up here. My computer was acting up for several days. Gerry has now been back at the NH for a couple of weeks, and they have finally accepted the Seroquel dosage of 400mg, prescribed at the hospital. He has not been aggressive, has been eating pretty well, but the doctor today said his body is not accepting the pneumonia meds, which has me concerned. They will take another x-ray in two weeks. They have gone to extremes to protect him in the wheelchair, without the belt restraint.