I have a friend that is very concerned about me!! That is nice! She is concerned about possible physical abuse. My DH is already mentally abusive because of the dementia but she wants to know if there is any way to determine how long or if the possiblilty that he will become physically violent. I didn't think there would be any way to tell but she asked me to ask you and I said I would. So I am asking. She thinks that it will help me to expect it if I knew some kind of time line. I don't think so but...you never know. I am just glad that there is someone here that is protective of me. My DH doesn't take any medication for the dementia, his dr. and I decided to just leave that alone for now because of the side effects.
deb, if your spouse is abusive verbally or physically, most of us have decided to sideline the side effects and give the meds. its quality of life so to speak. yours included. i am not sure but i doubt most of us have our spouses on meds for aggression, paranoia, hallucinations, or a miriad of issues and are willing to take the risks - even the black boxed ones. if one doesnt work or has more side effects there are many more to try. you see it here all the time that we have to try new meds as they tend to develop either tolerance or side effects. you probably wont make it long as a caregiver without something to help mellow him out sooner than later. on top of everything else we have to get done, getting abuse from someone we care for isnt in our interest. if your friend is concerned she may be seeing signs that you dont. hope you rethink the meds with his dr. divvi
It is difficult to predict, but it often happens that the verbal turns into physical. Sid's neurologist was very worried about that, which was why Sid was put on Risperdal. He was so verbally abusive with violent rages that we both would have gone crazy without the medication.
Please understand - just because it's dementia DOES NOT MEAN you have to allow physical violence. If it happens once, it will happen again and again.
Not all dementia patients turn violent. When my DH was first diagnosed well meaning friends kept saying "be careful, he will get violent". But I know a lot of dementia patients who have never hurt, or attempted to hurt anyone. I think we should be aware it COULD happen but not be so paranoid that we are afraid of our LO.
In all our years together( nearly 37) I have never been afraid of DH, but duri ng the yearbefore his Dxwith VaD, there was a relatively minor episode of physical abuse. Aftere that I was much more watchful of possible triggers. At Dxhe was entering Stage 5. Because of Mental Illness he was alreadxy on meds (extended exposure created that first incident). We've kept his meds adjusted to keep him functioning on an even keel, but controlling anger, agression. He's been declining more right along and his big fixation is his smoking. Whatever the focus--halucination; paranoia; or a habit like his, I don't believce there is any way to predict the if/when of when they might go off. At this point his meds are as fine tuned as possible. We can't afford his smokes. When he's out he gets agitated. That can flash to a nger. If that should get aimed at me--he'll be outta here. He's on waiting lists for placement because he is no longer compliant with me to be able to keep him safe. But, unless he has a significant crisis which lands him in the hospital for at least 3 days, all we can do is wait out the waiting lists (about a year). In the meantime,I have a cordless phone with me 24/7 and I have one of those emergency call buttons as well. Sometimes I think I've done too good a job of getting his meds in good order. After all, he has the right to choose to smoke; to take a walk; etc. Thereis no predicting what will happen or when. I just hve to be prepared.
deb, could you be more specific about what medications you have discussed with the doctor and which side effects you both are concerned about?
You asked about a timeline. I think what is more important is for you to identify the triggers that cause your husband to be, as you put it, mentally abusive. There are always triggers (although sometimes it may take quite a bit of analysis to identify them). Once you know the triggers, if they can be avoided or he can be distracted when they occur, you can short-circuit a lot of potential stress and agitation.
My husband has never been violent and he has FTD. I know that is it very common for them to possibly become violent because one of the first questions his doctor would ask me at appointments was if I had ever felt frightened of him. My husband's problem is aggitation and he takes seroquel for that. Of course there are black box warnings for it, but in my opinion his comfort is more important. I didn't believe he could be comfortable not being able to sit still for more than a minute before he was back up pacing.
divvi, I agree with you that I should rethink the medication issue. At the time that I talked to the dr. about it I didn't know that when my DH was younger he had a temper. I have been told that when they have dementia they start reverting back to when they were young. I have been married to him for 15 years and this is the first time that I have ever had any indication that he has a temper. He has never raised his voice to me or called me names or told me that I was no good before this has happened. Joan, I knew that there was no way that it would be predictable and I have already decided that I am not going to put up with the physical abuse if it happens. I have been told that if he were to become physical then the state of New Mexico will pay for his NH and I would not lose any income. As it stands right now I can not afford to put him in a NH. I hate for that to happen so next time we see his dr. I am going to ask him about Risperdal.
marilynnMD, the medication that I was talking about that the dr. and I did not want him on was the Aricept and Namenda(sp) the "funny" thing about it is that we didn't want him on these because of the tendancy to violence while on them and the dr. said that the Aricept would work at the beginning for a while but then the same medication in the long run would not only stop working but would cause the violence as a side affect and all the research that I did on my own backed up his decision. Now other medications that are specifically for aggitation or depression I can see possibly putting him on. Thankyou for all your information and help.
deb42657-risperdal and seroquel both work well to curb aggression. Both have a black warning about using them on elderly dementia patients. I chose to ignore them.
deb42657, my DH has been on both Aricept & Namenda for over 5 years & luckily he has had no adverse side affects. Are they still helping/ Who knows, but since he tolerates them I am keeping him on them. He did have some aggression & he would get up numerous times during the night earlier this year, but since he won't go to the neurologist anymore I asked our PCP if he would prescribe Seroquel for him so he takes 25 mg at night & it really helped. But as we here know, what medication works for one doesn't always work for another, it seems to be a trial & error process. Good luck, I hope you find the right meds.
deb42657--just to clarify, medications like Aricept and Namenda were developed for AD patients to enhance functioning, not to alter mood. And you are right, for other dementias sometimes they can produce bad results. The drugs used in dementia patients for reduction of anger/agitation fall into two families--anti depressants and anti psychotics.
I agree with the others about disregarding the black box warnings on the anti psychotics. They may pose some risk for shortening lifespan, but in a patient with a terminal illness, who is miserably upset and angry, I see no other alternative but to use them. It is a qualify of life issue, as someone here said.
My DH is also starting the verbal abuse and is in stage 5. I know that this would happen but I don't like it. It is so hard to listen to him yelling and getting upset. I told his doctor but she said that she didn't think he needed any medication and to put away knives and etc. He is on Excelon Patch for 3 years and Namenda for almost 2. I will talk to her again if he becomes physical.
Please don't wait to put him on meds UNTIL he gets physical. You put him on them before he gets physical. The yelling and being upset is a clue. I know. I went through it. I was really frightened, and yet he never got truly physical, just that "in your face" kind of thing and yelling, which is not his nature. His doctor had him put on meds and it's like a miracle. I would never have been able to handle it if he kept on the way he was. I also was warned about putting away knives, etc. as well at that time. Now, I trust him completely as far as not being physical. Just don't wait until something serious happens.
Also, what I've been reading lately is that Aricept may not help UNTIL you've been on it for as long as a year, not for every patient but for some patients. Namenda helps with hallucinations and the Seroquel with paranoia and aggression. They were lifesavers for us.
As most of the older members know, my gentle husband turned devil because of Alzheimer's. Lynn NEVER had any temper problems as a child or an adult; he was calm, sweet and loving- always. He would have risked his own life to save mine, that I never doubted. I knew some victims turned violent, we saw it with some of our friends parents. I was confident this would not be a problem with Lynn. After all, I was his princess, he loved me above all. So as you can imagine I was stunned the first time Lynn hit/shoved me!!! Stunned is putting it mildly.......
Unlike domestic violence with a "sane" mind (they are crazy in a different sort of way!!) I do not believe there are always triggers to watch out for. For sure there were certain things that I knew would make him angry, like trying to get him to bathe was a guarantee I was going to end up shoved. But there were times when I did nothing, he was just angry and I was his trigger! Just my presence seemed to enrage him. He was sweet as punch to everyone else. He never showed any sign of aggression or never even raised his voice with anyone but me. His neurologist told me this is common, that they "take it out" on the one they love the most.
Seroquel was our miracle drug. Though he was still aggressive even after placement, it was not aimed at me. Finally when he reached late stage, he seemed to be content trapped in his own mind, the fight inside him died and the aggression stopped as quickly as it started. I take offence when I read articles that say aggression or violence happens because it shows their "real" personality or some crap like that. Lynn was a gentle soul who saved every stray or injured animal he ever came across. He was the first to help a friend in need. He gave more than he should have. He is the kindest man I have even been blessed to know. Alzheimer's destroying his brain is what caused him to become aggressive.... period.
Nikki--you are absolutely right, aggression caused by dementia has nothing to do with a person's disposition. It is caused by the brain degeneration.
Please reread your post--you have identified Lynn's trigger--it was you. And you did respond, based on that, you had him put on Seroquel and placed him. My point about the triggers is that families should not see negative behaviors as random events over which they have no control. Trying to decode dementia behaviors is probably the most challenging part of the disease, but I'm convinced it can be done. Who knows our LO's better than we do?
I see your point Marilyn...and I agree that it is important to try to "decode". I guess some of my old frustration at Lynn's crappy VA doctor is still with me. I was in his office crying and begging for help with the aggression. He made me feel like a failure because I wanted to try seroquel and would not give me a script....the dumbass had the nerve to tell me to try to be nicer and to avoid his triggers. I WAS nice! And it is very difficult to avoid triggers when YOU are the trigger...
Today I would not allow a doctor or anyone to bully me that way! Wow...That all seems like a life time ago now......
I have to weigh in on this one. The doctor said your dh didn't need meds for aggression, but you should PUT AWAY THE KNIVES??????? Just my opinion, but I think that pretty much signals that he needs meds and a change of doctors.
When Sid was in his raging period, I could see his face literally turn dark, and his eyes looked possessed. Then the explosion would come. It was the most horrible experience I have ever had, and if not for Risperdal, I don't know what would have happened to us. I actually had to sign a paper at the doctor's office stating that I understood the black box warning, and was opting for the medication anyway.
FD has not yet been diagnosed with AZ but he definitely has dementia. He became quite upset when we were having some drama with our 44 yr old bi-polar daughter and put his hands around my throat and gave a shake or two. I was shocked and managed to say quietly "let me go". He did and nothing has happened since of that nature. Another time he hit my arm - not hard- I could have avoided that one by just not insisting he do whatever it was I wanted - don't remember now. We've been married 59 years and those are the only times he has shown any aggression at all. So he had an even temper and was quite gentle until this took over. I'm really new at this game and have lots to learn. I really appreciate this message board.
flo39, even though I started the thread I appreciate it too! Joan, I have a question about the Risperdal...How long does it take to go into affect and if he started taking it too early would it be too damaging to him? I agree not to give them the medication to late because it takes some time to get into their system but is there a possibility of giving it to him to early? Like I said so far the abuse is verbal but...he is started to wack me in different places and right afterwords he says he is playing. Nikki, I also agree that there is no specific trigger or anything to "watch out" for. I feel like he does it just because and there is no way to tell when it is coming. I don't do anything that I know of but maybe it is just because it is new to me and I will have to pay more attention to it. Either way it doesn't make it any easier to cope with. I get flash backs from when I was abused by my first husband that wasn't sick and have to remember that it is not the same thing.
deb42657--the trigger doesn't have to be something YOU do. Some examples are--being told not to drive, tiredness, any type of physical illness, overstimulation (i.e. loud noise or people arguing), being too hot, being too cold, cloudy/rainy weather, full moon, being forced to comply with personal care, going to the doctor, being criticized, on and on. I have never done this, but some caregivers keep a journal to help them figure it out.
In terms of giving the med too early, you must remember, dementia is a terminal illness. So I think most of us would say, quality of the life they have left overrides any other concerns. I would say that whacking you in different places is a behavior that should be discussed with a physician.
flo39--putting hands around your throat should be a big wakeup call. That and the hitting need to be addressed--don't wait until you are injured.
Reading this is surely bringing back horrible memories...as everyone else has said...DO NOT WAIT. Like Nikki, I was Garv's trigger, and at the end, I couldn't even be in the same room with him as it upset him so badly. So damned unfair to not even have a decent calm goodbye.
Dear Deb, my dh has been in ALF for over 2+ years now and just to get him to bathe they have him on Risperdal (spelling?) and this facility is very conservative when it comes to drugs. They tried to work without it but he gets very very combative when he has to shower so the drug helps the staff deal with him. His anger both physical and verbal was what led me to placing him after caring for him for more than 5 years. Don't feel bad -- I used to think it was cruel but now I think it's the kindest thing to do for them and the caregiver.
Kathi, my heart just broke for you as I read your post.....I was blessed that once Lynn was placed I got the gift of Lynn's love back. I am so sorry that didn't happen for you, it is more than unfair, it is damn cruel. My heart aches for you ..... ((big hugs))