Helping Those Who Care for Parkinson's Patients
| [Home] [Forum] [Help] [Search] [Register] [Login] [Donate] |
| You are not logged in |
|
| ||
|
Hi everyone, We're having a heck of a time. My husband has begun having all kinds of crazy hallucinations, such as telling me our youngest son shot him in the face with a shotgun several times (we don't even have a gun in the house, for starters, and does anyone survive being shot in the face...multiple times, no less?) I've been told our house is under surveillance by the government, that my husband just saw my head evaporate in the front yard (even while he is telling me this to my face), that the oil derricks in the ocean are actually all tethered together, funded by a tremendous amount of government money that no one knows about, and on and on. This on top of the increasing toilet accidents, another of which occurred early this morning. After stepping in it with both feet, my husband placed a sofa cushion on top of the pile of feces for some reason, to hide it perhaps, or curb the smell, who knows. I wish this was a hallucination: Thanksgiving evening my husband came charging out of his bedroom in his underwear, raging and laughing like a madman and holding his cane above his head like he was going to hit someone. I asked him what was going on and he screamed like a banshee, it was terrifying. I yelled at our kids to get out and as they were fleeing out the door my husband yelled our youngest's name and hit the wall with the cane really hard. I've never been so scared in my life, he looked crazy. I got him onto his bed, talking slow and low, and asked him again what he was doing. He looked at me and said "I wanted to scare the s#@! out of them". I said you did that, and much more. I have thought and thought about this incident and am most upset that he did it on purpose. If he had been looped out on some medication, I could excuse his behaviour. But he wasn't: for whatever reason, he deliberately wanted to terrify our kids. And he did. They are barely speaking to him and are now afraid of him. I have to admit, I am a bit afraid of him myself. We went to see the nurse practioner today and I shared in a note some of the things that have happened, including the Thanksgiving incident. She said this was progression, and recommended Nuplazid. She couldn't tell me, though, whether the hallucinations are from taking sinemet that long, or from the disease itself. I know some on here had great results with it, but it is horrendously expensive. I am wondering if any of you have had success with treating hallucinations with any other drug? BTW, I went ahead and cleaned up the pile of feces, put the sofa cushion cover in the laundry to soak, and asked my husband to clean up the poop tracks he made when he stepped in it....that was 14 hours ago and they are still there. I can't stand it anymore and am goign to cave and clean them up. I am getting so frustrated that he won't help this situation by wearing a depends or using his bedside commode. |
| ||
| Dear Lurking, I have been following your recent posts and am very sorry your family is going through these terrible times. My heart aches for you and your children. I have to ask is your husband on any dopamine agonists such as Mirapex or the like? Is he taking high doses of Sinemet? My husband went through severe personality changes after years of using Mirapex he really lost all judgement and became irrational and paranoid. It started so slowly that at first I just made excuses for him. Then I wondered if it was him or the PD causing the behavior? He accused me of affairs and became intimidating until I was afraid of him. He would/could not listen or be reasoned with and became manic. He had delusions but no hallucinations. When it reached a crisis point he had to be hospitalized and weaned off meds and spent some time in psych ward. Although it was 4 years ago I still have nightmares about that time in our lives as does he. Theses brain drugs are so powerful and can cause such terrible side effects. We are so careful now and we stop any new drug at 1st sign of trouble. We have had no experience with Nuplazid. I am hoping that you all get some relief soon. Keeping you in my prayers. |
| ||
|
I just can't even imagine what you're going thru with your children to worry about too. I can say that my hubby had three horrible "episodes" and many minor ones while he was taking ropinirole. One was on a cruise which was really bad and one when we spent a night in a hotel and one at home. Very scary and I really felt afraid of what could happen. I couldn't get control of the situation myself. The neurologist finally took him off the ropinirole and put him on sinemet which worked for a while but then we had to add Aricept. It was miraculous, stopped the delusions and halucinations. Strange too how it stopped his snoring. It's worked for the last two years but now the last few months he's starting with the thrashing around in his sleep and delusions and hallucinations again. So far I've been able to get him thru them but I can see something must be done before they get out of control. We don't go see the neurologist until Dec 19 and I hope things hold on until then. I had asked about Nuplazid in August but the nuerologist said it was too new and he wouldn't prescribe it until he researched it thoroughly because of the side effects. The cost is outrageous. I know there is another medication that has been successful for hallucinations but I can't remember the name of it. I am so lucky so far that my hubby will wear depends and tells me when he has to go to the bathroom. Small blessing for me. BIG HUGS to you and I'll keep you in my prayers. |
| ||
|
Been there. The police were at my home on three occasions last year (he called each time, claiming I was going to kill him. The guns were removed long ago). Finally, rather than return to the same ER (a local one), I personally drove my loved one to a major medical center where, after knocking him out for three days, they changed his medication, added a sedative, and discharged him to rehab and then home. What I learned (1) the primary Parkinson's meds can cause serious hallucinations; (2) exhaustion can cause serious hallucinations; (3) infections in Parkinson patients can cause serious hallucinations. He lost a year. He knows that and is sad. But he is SO MUCH better now. And I can adjust the sedative so that he is active and happy (His Neurologist trained me well). |
| ||
|
Exhausted Wife, same scenario but thankfully no police yet. Can I ask what the sedative is? Our Neurologist didn't want to give him one because he said they could cause more problems. Maybe my hubby hasn't got to that point yet? When my hubby had minor bladder surgery he woke up in a panic mode and they gave him Ativan to calm him down so I could get him home in the car. When we were on the cruise they took him to sick bay for 3 days and had to restrain him at first. They didn't want to give him a sedative for fear it would have a negative effect. We just waited it out and cut back on the Ropinirole. |
| ||
|
Exhaustedwife, I am so glad things improved for you. I was surprised the recommendation right off the bat was another drug for my husband. I went online last night and read that the standard FIRST thing to do when there are psychotic episodes is cut back on the PD meds to see if that is the cause. If it is, then you don't need to add another drug. I had to be the one to ask if we could try a drug holiday, and even then, the drug holiday schedule they gave me is a 5-week wean-down program which I am not sure my husband will be able to do. He has tried several times in the past to get off of the Mirapex but it was too painful. And that was years ago when his PD was not as advanced. We don't take much Mirapex, though, so hopefully it won't be too hard to struggle through. The Nuprazid only helps with visual hallucinations, from what I understand. It doesn't sound like the crazy delusions, where he believes something absurd has occurred or is going to occur, will be helped. So if we make it through the drug holiday program, and our episodes don't improve, then we will try another medication for that. What is the drug you give your husband? I can ask our neuro if he would let us try it, if the drug holiday doesn't help (or we can't complete the program). |
| ||
|
Lurking... Oh wow, I am so sorry, that is the last thing you all need, for this miserable symptom to rear its ugly head, hallucinations and delusions, dementia basically. I think you are right, to try a drug-holiday, and see if that helps, to find out if it's the meds causing it, which it may well be. Back in the beginning, my husband had all kinds of delusions, not so much hallucinations at the time (now he sees mice running all over the house, and people sitting on the couch or crossing the dining room, but thankfully he knows they are not real so he just ignores them), and the delusions are one of the worst parts of this disease IMHO, it is MADDENING trying to deal with that and explain over and over ad nauseum that, no dear, the house is not bugged, the government is not after you, and you are not being stalked, etc etc, day in and day out. Back in the day, they gave him Seroquel for that, and it did help some, but not 100%...but it can make PD symptoms worse sometimes, so they take care in prescribing it; usually only if they decide the risk is worth it, depending on how bad off the delusions etc are. The delusions have mostly subsided now, gave way to the acceptable hallucinations, so they took him off the drug a while back, but he does take Clonazepam to sleep at night, otherwise he'd yell out and thrash all night, it really helps with that. Good luck to you and big hugs, I hope you all see some improvement with the delusions and all! |
| ||
|
After much discussion, both neuro prescribed Seroquel. In the hospital he had a really high dose. It was weaned down to a mild dose at home. Remember, he was hospitalized, observed and the medication adjusted accordingly. For three days, he was totally out. The next four days, they decreased the Seroquel. His Parkinson med was decreased at the same time. The hallucinations are gone. Life isn't perfect, but my kind usually thoughtful husband is back and the feral monster has disappeared. He still has some nightmares, but they are rare, of really short duration, and done. Good luck. |
| ||
|
I should also note, initially the local ER physician opined that it was just Parkinson's dementia and I should put my husband in an institution. I needed a better facility and fortunately found one. Two separate neurologists worked in conjunction on the adjustment Don't presume he meant to scare you and the kids. I saw that nasty streak before the medication adjustment. He said and did things I will never discuss with him because it would break his heart to know how he acted (I also hid it from friends and family). Again, for the sake of your sanity and certainly for your children, try. |
| ||
| My husband had hallucinations early on. They were very frightening for him and me. He didn't know who I was and became very threatening. His first neurologist was less than helpful. We ended up going to a neurologist in Boston who specializes in Parkinson's. He lowered his Sinemet dosage gradually and put him on Clozapine. He no longer hallucinates. He is on a low dose of Sinement, two pills four times a day. At our last appointment his Dr. said it would be better for him to increase the sinemet to 2.5 pills, 4 times per day. Because he is so sensitive to sinement we are increasing the dosage very slowly. He is taking the 2.5 pills in the morning and continuing with the 2 pills 3 times per day for 2 weeks. So far it it's working.We will next increase his third dose and wait 2 weeks to see if there is any adverse reaction. I'm hoping this works so he can move better and freeze less. I guess the bottom line is that every PDer is different. My advise to anyone is to find a good doctor who is knowledgeable in the field of Parkinson's. It has made all the difference in our lives. |
| ||
| LC, what time do you give your husband his sinemet pills? I was trying to do 2 pills at 7, 11, 3 and 7pm but trying to feed him within the protein window was impossible. Now I'm trying to do 2 1/2 pills at 7am, 12 and 5pm. Sometimes he sleeps until 8 or 9 and then it throws everything off. I try not to wake him up when he's in a deep sleep because it causes him to be disoriented. |
| ||
|
Prayers for you and your family, lfac. You are a strong person. for whatever it is worth, I believe it's very possible that your husband's outburst was an episode of dementia, that he would not have chosen that action if he had been in his right mind. and when he said he wanted to scare your children, he could have been in that same frenzied state, not knowing what he was doing or saying. You said that was the part that hurt you the most, that's why I chime in. if you asked him later, your husband might not remember this happening at all. That does not make it any better or easier. There is still the need to protect yourself and your family, and your husband from himself. Wish I could give you a hug. All the dear caregivers here. You are so incredible and strong. I have been struggling with sadness and tiredness the last few months and have not been visiting here so often, but you all remain in my thoughts and prayers. God bless you. |
| ||
|
Thank you, Mary. My husband most definitely remembers what he did because he has told us that he was joking and that "we" all need to forgive and forget and move on. This has only made things worse from the standpoint of our kids, because they see this as his trying to make it their fault that they can't/won't let it go. It's only been a week, also, so I don't know how fast he thinks kids can process something like this (I personally believe they will, unfortunately, remember that night the rest of their lives....just like our youngest will remember his dad locking him out of the house a few weeks ago, on purpose, because he was mad at him.) I know my husband wants things to be like they were before this episode (and we had issues before, as I've shared). I just don't know that our kids are emotionally capable or mature enough, or both, for that to happen right now. And I wonder, if trying to make their inability or refusal to forgive/forget now might actually make things worse. It's like blaming a crime victim for being in the store during the robbery. Why should they feel guilty for how they feel? That isn't healthy for them, I don't think. |
| ||
| Dear, I'm so sorry for what you and your kids are experiencing. Something is very wrong in his head. Even if your children are able to forgive some day, they will never forget the trauma and abusive behavior. Hope there will be an answer for you all soon. |
| ||
|
Dear Lurking... I absolutely agree, it's awful for the kids, not good for them. That kind of behavior, what he did, isn't ok, and you are right, the kids will probably never forget that night. Does he realize that was a crappy way to act, even if he just wants everyone to forget about it, is he aware it was not cool? I think I would point out to him "Is this how you want to act? To treat your kids? Are these the kinds of memories you want your kids to have of you? The kind of dad you want to be??" I have a saying I use often...Throw a china plate on the floor. Did it break? Yes. Now tell the plate you're sorry. Did the pieces go back together? No. They didn't. I say that to my husband when he gets out-of-line on the anger over his illness and starts yelling at us, the kids, whatever (though he hasn't brandished his cane at anyone yet) and it doesn't happen that often. But there have been times it has gotten bad enough before that I've risen up tall and mean as Mama Bear and made it clear that the kids come first and I will protect them from anyone who is being mean or causing them harm, even you!! I've had to threaten to divorce him or put him in a home if he didn't get his act together and start behaving like a father. And so far that has worked on those few occasions for us, but everyone and every situation is different...also depending on why he acted that way, if it was the meds, or just plain frustration. But at any rate it sounds like he doesn't understand how much he's damaged his relationship with the kids, this latest incident being the straw that broke the camel's back, and I hope you are able to get across to him the reality of the situation, of how the kids feel, and that he can somehow make it right and be their trustworthy dad again. Hugs to you! |
| ||
|
Thank you everyone for your comments, and support. The true tragedy in all of this is that my husband is losing out on having a loving relationship with our kids, which would not only be healthy for them, but I think could actually help him deal with all that PD brings. I mourn that loss for him and our kids:it is heartbreaking. I see that he has lost countless opportunities to make a loving memory with them or nurture and help them grow in a new way. I know a lot of parents with PD and no one seems to have the issues we have, and I think it is because the heart of our issues pre-date PD. I, too, have asked my husband if the memories he is making are really the memories he wants the kids to have of him-is this really the legacy he wants to leave behind? These are questions all parents have to ask, PD or not. After Thanksgiving our oldest told my husband that she would be talking to the school counselor about what happened when school resumed. That is huge for her, to speak up like that, and basically let him know that she was so wounded that she was going to talk to a stranger about our intimate family problems. His response: "oh come ON!" She was furious, and he missed another opportunity to sit down with her and try to work things out. I worry about the relationships our kids will have with others when they are older-will they be able to have a deep and loving relationship with a partner, or will they get divorced, if they even get married in the first place? |