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My brother with Parkinson’s Disease is cared for by his devoted wife. He has had 3 serious issues lately. He ran out into the hall of their building and pulled the fire alarm.


Next he got on top of his wife while she slept, held her down and was punching her.


Then, the other night, she attempted to block his exit to the hallway  in the middle of the night and he started beating her with a brass candlestick.


They do not seem to be getting proper advice from MD’s. We are truly afraid he could kill her.


What insights does anyone have with this?

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She needs to call 911 and have him admitted for a psychiatric evaluation...now.
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Sounds like he's having delusions, which is common with Parkinson's, and his wife is no longer safe with him at home, which means she needs to place him in the appropriate facility sooner than later.
And the next time he so much as raises a hand to her, she needs to call 911 and have him brought to ER. Once there, she MUST tell the hospital social worker that she can no longer care for him at home and then it will be up to the social worker to find placement for him.
Safety for both your brother and his wife must now be top priority.
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My husband with advancing PD never exhibited those behaviours. However, he does not have dementia, I hear that people with PD and dementia show violent behaviours.
Of course, it is no excusable and at least serious evaluation is needed by neurologist.
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This is not a psychiatric issue,and is not a "delusion", nor does he likely need placement outside the home. It certainly sounds like REM Sleep Behavior Disorder. It is one of a group of sleep disorders called parasomnias. About 50-60% of Parkinson's patients have RBD, according to the Parkinson's Foundation. It can occur even decades before the Parkinson's is diagnosed and is now considered a potential marker of the ongoing neurodegenerative processes that underlie Parkinson's. Some people develop the RBD later, after other Parkinson's symptoms. Get his doctor to refer him for an overnight sleep study. He will also be evaluated for sleep apnea. He should probably be sleeping alone now so as not to harm his sleep partner. Remove sharp objects from around the bed. Furniture may need to be removed or padded. Soft pillows or cushions may be put on the floor if he is falling out of bed. The main medications to treat this are melatonin and clonazepam. These can cause morning drowsiness so extra caution should be taken to avoid falls. And for heaven's sake if he doesn't already have a neurologist who is a Movement Disorder Specialist, who would know about RBD, get him to one ASAP. You can locate one near him through the Parkinson's Foundation or the other Parkinson's organizations.
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Clairesmum May 2022
In a situation where someone's life is at risk, the first action is to ensure safety for each of them. No matter the cause, he is not able to control. his behavior.
Sleep pattern alterations can and do happen in any progressive brain disorder - Parkinsons, dementia, Alzheimer's dementia, metabolic encephalopathy, etc.
Paranoid delusions and violent behavior to stop the person who is trying to kill you are a feature of Lewy body dementia. Much different than ordinary dreams. Diseased brains do not respond to any medications predictably. In Lewy body, medications usually exacerbate symptoms and increase agitation/anger.
A person needs to be kept safe at all times. This incident is very likely a trigger for residential care.
One spouse cannot manage care alone, no matter how willing. Home caregivers will not accept being hit/cursed/having body waste thrown at them, etc. I have seen all of these patient behaviors (and learned quickly to be quiet, calm, and ready to step out of the room at any moment.)
Caregivers do die from the burden, and it would be horrific for her family to find that she has died while alone with him. It does happen.
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The most likely cause is Lewy Body dementia that usually accompanies Parkinson's disease. This type of dementia produces vivid visual hallucinations and patients can interacts with them. This type of dementia can fluctuate from day to day, or from hour to hour. Sometimes they look lucid and composed, but a few minutes later they can be fighting imaginary demons. The visual hallucinations they experience, seem very real. Patients with this problem can be very dangerous sometimes. There is no cure for this dementia. Heavy sedation is used sometimes to prevent harm to others or to himself.
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newbiewife May 2022
TCChamp, you are (as is common in your responses) making pronouncements with inadequate or outright inaccurate information that can be very misleading. First, the details provided don't appear to point to Lewy Body dementia, as it appears these episodes are happening when the person is asleep or has been asleep. Second, and more important, Lewy body dementia DOES NOT USUALLY ACCOMPANY PARKINSON'S DISEASE. It's confusing, because Lewy bodies are found in the cells in both Parkinson's and in Lewy body dementia. From the Merck Manual: "Dementia with Lewy bodies is chronic cognitive deterioration characterized by cellular inclusions called Lewy bodies in the cytoplasm of cortical neurons. Parkinson disease dementia is cognitive deterioration characterized by Lewy bodies in the substantia nigra; it develops late in Parkinson disease." Many people with Parkinson's do develop dementia when they are far into the disease, but the symptoms are different than in dementia with Lewy bodies. And the symptoms described do not sound like either of these kinds of dementia.
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VegasLady, given that where I live, it takes a month or more to get an appointment with a neurologist, I think this gentleman needs to be in a placement immediately, for his wife's safety.
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I think a lot depends on his reaction to all this - if he is suffering from dementia and delusions he'll have little awareness about what is going on in IMO 911 and a psychiatric hold is the only answer.
But if this is something else like the sleep disorder mentioned by vegaslady then once he regains awareness he will no doubt be horrified by what he has done and willing to do whatever it takes to keep his wife and himself safe; until a more permanent solution is found at the very least sleeping apart and perhaps locking him in his room at night.
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I really don't think at this point a Neurologist can do much. And I would not feel safe stay in the same place with him. Like said LB is part of Parkinsons and its a violent Dementia. He could have killed her with a candle stick. He needs to be in a psychic unit and experiment with meds. When stabilized he should be placed.
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People do not have "delusions" when they are asleep. They have dreams and maybe sleep disorders with dreams that they act out, which can be violent. What was described by OP is classic RBD. I really disagree with "placement" as a first solution. First, how long would that take to get him assessed and placed? Do you suggest he be hauled off in his sleep state and charged with assaulting his wife? Or locked up in some psychiatric ward and medicated without the proper sleep study? Lewy Body Dementia is NOT the most likely cause. He's not acting out when AWAKE. He's ASLEEP. Take safety precautions as I previously suggested. Or take the readily available over the counter Melatonin now while waiting to be seen by a neurologist, or for a sleep study. The OP can call the Parkinson's Foundation at 1-800-4- PD-INFO, and speak directly to someone about RBD in Parkinson's. I would recommend that if they are not getting anywhere with the MD. Many types of sleep issues are problems foe Parkinson's patients and you don't institutionalize them for that.
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MJ1929 May 2022
What do you suggest the wife do to stay safe TONIGHT?
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This nis an issue for the MD.There may be hallucinations involved.At best medications may help but at worst you are looking at a need for a move to memory care at this time. Often medications that help with Parkinsonian hallucinations have side effects that worsen balance, which is always an issue.
If the current MD is not giving "good advice" (not certain what you mean by that because the best advice would be to suggest placement) then you need referral to good neuro-psyc physician well versed in Parkinson's. Best of luck.
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These are neither delusions nor hallucinations. These are dreams in the REM phase of sleep that are being acted out. At least that's my opinion as someone who has actually talked to other Parkinson's patients who have described their own RBD diagnosis and behaviors toward their sleep partner. The patient does not need memory care just for a sleep disorder. I understand the responses here are trying to be helpful and are suggesting how to protect the patient's wife, but seriously, stop calling this out as delusions, hallucinations or dementia. It is a medical issue, agreed.
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If the patient was awake while doing the behaviors described that would be different and not RBD. If this is all happening at night after the patient has fallen asleep and then is acting out the dreams the approach should be as I suggested. RBD is rare, 0.5-1% of the population, more likely in men over 50. Contributing factors can be neurological diseases like Parkinson's or even the use of antidepressants.
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I agree with Vegaslady. While not to dismiss seriousness of this situation, but caring for husband with advanced PD I recall now some of sleep disturbances perhaps over a decade ago.
I will not, ever place him in institution, people with PD do very poorly in those as the disease is not very well understood and if dementia is not present it would be horrible for my highly cognitively functioning husband.
It is likely RBD, they need good assessment from neurologist, MD can help In the meantime, melatonin or some kind of sleeping aid and somebody staying overnight, extra caregiver?
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Parkinson's psychosis is well-recognized but it isn't what you'd call actually common, so it is just possible their medics need a light bulb to go on.

This is an emergency: your sister in law needs to give them a really clear account, ideally with visual recordings, of what is happening.

She mustn't stand in his way. If something else like that happens and she is afraid for his or anyone else's safety, she must call the emergency services.
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Here you go, nice clear website from a reputable source:

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/psychosis/
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Regardless of what anyone thinks the man was asleep or whatever, he still beat her with a brass candlestick.

Call the cops and have him Baker Acted, or 5150 in California. Do not take him back at discharge. It’s beyond happiness now. The whole idea is to keep everyone safe and him not ending his days locked up for homicide.
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Regardless of the dx involved (and there could be many reasons for his behavior), his wife's life if at risk. This is an emergency that needs to be dealt with on a short term basis while causes, dxs and other options are investigated and explored. Next time he does something violent or extreme... call 911 and have wife tell them she is in fear of her life and can not control him. Hopefully he will still be raging when they arrive and that should give him a short stay in a psych ward for a full work up - with any luck they will start to play with meds that will help calm him. I'd also change MDs and explain his violent behavior and see what new eyes say. Dying in the name of love in this case is not a good thing.
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This issue has definitely reached a level of 'she's no longer safe' with him. Each even you described could have used the help of calling police or ambulance to get him to the ER.

You say they are not getting proper advice from the dr - what advice was given? Is it possible he suggested sending him to facility and neither of them want that kind of advice?
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1. Call police immediately if and when that happens. They can get him to the hospital for a psych evaluation. If she can't get him there. He IS A DANGER TO OTHERS. Why weren't the cops called the 2 other times??? She could have gotten help then. Now it's just a waiting game. She better hope she has a phone handy when he attacks her again, and can dial 911 during an attack.

2. Get a new doc. There are brain/personality changes going on. He needs his meds changed immediately. If the other doc won't do anything, get another doc. He/she is not the one being attacked.
He might have to go to a psych ward until they can find the right med combination. Do not come up with excuses why this shouldn't happen. He could kill her since he has beaten her 2x. Do not wait for a 3rd time.
3. Find a geriatric and Parkinson's psychiatrist who can help prescribe meds. I'd get on this immediately. If I have to get a phone book and go down the list and it took me 5 hours.
Tare him immediately to the hospital and tell them he is a danger to others and get him help. I don't know if she can get him in the car. She could call the non emergency police number and ask for help getting him there.
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Clairesmum May 2022
Good suggestions. #2 and # 3 are most easily accomplished by the staff of in inpatient psychiatric unit (locked) that can keep him safe and figure out the most likely diagnosis, treatment options, and most appropriate care setting for him.
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Have him placed in a facility. He should not be in the home.
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If they have not already done so, I would consider evaluations by four specialists. Depending on where you live, you may not have them locally and need to travel some distance.

1. Movement Disorder Specialist. A neurologist with more training and experience caring for PD patients.
2. Sleep Disorder Specialist. Often also internist and/or pulmonologist.
3. Neuro-Psychologist. Neuro-psych testing can help differentiate between Parkinson’s Psychosis/Dementia, REM Sleep Disorder, Lewy Body Dementia, Alzheimer’s, Vascular Dementia. Each one has different tendencies. Several here have thrown these terms around but only a professional can make those diagnoses.
5. Certified Geriatric Pharmacy Consultant. As we age, our bodies have a different tolerance level for certain meds. A change in medication sometimes can change everything… for good or bad!

My husband has been through so many ups and downs over the last 34+ years diagnosed with young onset PD at age 40. Each of these specialists have given me so much clarity as to what we were dealing with as the PD progressed. When it comes to PD, there is so much misinformation even among health professionals. PD is such a misunderstood disease because it can affect each person differently so the treatment has to be customized for the best results.

Medicine management and limiting what my husband is exposed to in the daytime really helps us. He loves military history so he enjoys reading and watching tv programs/movies that included wars etc. So at night when he acted out his dreams, he was fighting wars and he saw me as the enemy. His eyes were wide open but he rarely remembered anything.

If they do not have one, have them order the Aware in Care kit from The Parkinson’s Foundation. Should he go to any facility, (even ER) he needs someone to advocate for him to try and keep his meds straight and on time. This kit can be a huge help.

https://secure3.convio.net/prkorg/site/Ecommerce?store_id=4003&PAGENUM=1
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My friend's father, suffering from Parkinson's, was removed from the home after a series of unpredictable attacks that put his mother in a hospital. The behaviors you are describing can happen with progressing Parkinson's and related dementia. Unfortunately, your brother needs to be placed in a facility which can handle neuro disorders with violent tendencies. With his wife, call his physician immediately and demand evaluations be done where they can handle his unstable, and potentially dangerous psychosis. His understandable frustration with his declining health is being demonstrated with the only means he has, toward his available wife. He's shown what he's capable to do. Everyone thinks they can handle it until the next time. Please take the situation seriously and don't hesitate to act. Otherwise, there's going to be a very tragic end to the situation. A candlestick could have easily been a knife from the kitchen drawer. He's okay tonight, but what about tomorrow? She has to sleep sometime, and her family must protect her.
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I’m curious, when your brother is fully awake and cognizant during the day what does he have to say about these episodes and his wife’s safety? I don’t know enough about Parkinson’s to know what might be causing this or what treatments might help or not but first and foremost your SIL needs to be safe while the professionals are figuring it out. I can’t imagine how baffling it must be to have his medical care team not take this seriously but I know if I were in your place I would be encouraging her to seek other Parkinson’s experts for second and third opinions and go with her/them as loving support and another set of ears. Unfortunately the proper medical care for the patient often takes someone with a personal stake doing research and questioning the experts these days, it’s a full time and grueling job. My brother and I were just talking about how each specialists sees things only from their lane and it can look very different from another specialty, it’s hard to know where her A1C should be when her eye specialist says 7 and her endo says “in an 80 year old? That’s way too low” Eye dr is worried about highs, endo is worried about lows, I’ve come to interpret it’s more about the swings or extremes than anything for Mom. This is just an example, we have several of these differing directions but Mom has a lot of specialists. Sometimes you need to take what makes the most sense from each specialist and sometimes you need more of a specialist, I’m not sure where your brother falls here but I can imagine how much your brother and SIL could use some help and support figuring it out. It can take a village.

Again first and foremost your SIL needs to be safe while what this is and what to do about it is figured out. If that means a temporary facility while they do testing so be it. But I can also see good reasons for trying to avoid that so if there is a male family member or two that live nearby and could take turns spending the night with them while you are actively trying to figure this out it might help. Also if your SIL could sleep in a separate bedroom, though I doubt that will keep her from leaving to try and help him should he try to do something so someone else to help intervene or just help her not is still a good idea. Does he only get violent when she tries to stop him from doing something? Maybe some way of preventing him from getting out of the apartment during these episodes, giving others a place of safety and just leaving him alone. I would certainly run these ideas by a professional who really knows Parkinson’s not just a neuro who also treats it before implementing anything longer term though.

Im so sorry your family is going through this, I so hope you get it figured out.
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Are the MDs prescribing medications to calm his violence? If not, he may need to see a doctor that can help with this. Please consider moving him to a facility that can deal with his violent episodes. Your fears about your mother are warranted. It sounds like he has declined to a state where she is no longer knowledgeable enough or able to care for him. I would also advise your mother not to try to restrain him, but rather to call 911 and have him taken to a hospital when he has episodes. All the best to all of you.
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Katefalc May 2022
It’s not her mother. It’s her sister in law
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Has your brother been diagnosed with LBD? (Lewey Body Disease?)
This is common with Parkinson's.
It can cause violent outbursts.
It has to be medicated carefully. Some of the medications given to patients with other types of dementia for anxiety can be fatal for someone with LBD.
PLEASE have your sister contact the Parkinson's Disease Foundation. She can get more information about it. She needs to discuss this with his doctors.
IF you are witness to any of the outbursts you MUST call 911 and tell the dispatcher that you are in fear for your safety as well as others in the household.
SHE needs to do the same if she is alone with him.
I realize this is a very difficult thing to do but you are correct in that he could seriously harm even kill her without realizing or comprehending what he is doing.
If he is a Veteran you / she can contact the VA or better yet the Veterans Assistance Commission to determine if he qualifies for help and benefits through the VA. Depending on where and when he served he may have been exposed to chemicals that caused the Parkinson's and he would be classified as 100% service connected disability. (Agent Orange is but one of the chemicals used I think the term that is used now would be Agent Rainbow since other chemicals had other designations)
I have several friends that have been in one of my Support Groups and their husbands were diagnosed with LBD and one of them is dealing now with severe back problems from when her husband threw her against a wall. She had to have him placed with she woke one knight when he wrapped one hand around her neck and he had a knife in the other ready to kill her. I know it is a common phrase to say...It is not him it is the disease....but that is not going to help when he has to be placed in a facility and you attend her funeral.
Please try to get her to understand that taking care of him at home is not safe for her nor is it safe for him. Placing him in a facility, getting him PROPERLY medicated is NOT giving up on him it is getting him to a safe place physically and mentally.
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TChamp May 2022
I agree with you. However, one of the "google doctors" in this forum scolded me for suggesting the possibility of Lewy body dementia. She even accused me of spreading inaccurate and misleading information.
and cited a passage of her Bible (manual Merck) to make her point. I believe that too much information in the wrong hands can be very dangerous.
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They need to now have separate bedrooms and he should be medicated at night. Whatever bedroom they use for him must be baby-proofed and he needs to be locked in at night.
If the wife is caring for him, she can use a baby-monitor in the room.
It may be at the point where your brother will need to be placed and looked after by professional staff 24/7.
Get him to his doctor and have some testing done. This is a good starting point and his doctor can advice you on what to do next.
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I have no personal experience with this type of behavior.

However, anyone who is violent for any reason whatsoever should be removed from the home until the behaviors are under control by whatever means.
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Adult Protective Services needs to evaluate both your brother and his wife, individually. A psych eval is crucial to your sister-in-law's safety: call 911 and request a 72 hour hold and a psych placement. Perhaps you can place a baby cam for proof?

Unless your brother has given his doctor permission to discuss his medical issues with you, you will come up against a HIPPA wall in attempting to get medical advice (or help) from his doctor.
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It sounds like your brother needs to be removed from the home. I'm not sure
medicine can be relied on to protect his wife. It might work, but it might not.
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Your sister in law is in danger. That the violence is coming from a disease is irrelevant. If his behavior has extended to attempting to beat her with a candlestick, it's not a matter of if, but when she'll land in the hospital or worse.

This is a triage situation.

1. Her safety is the first step. Please get APS involved immediately. Have her put 911 on speed dial. They might need to 5150 when this happens again. Are there any lockable rooms in the home she can seek refuge in when he loses it?
2. Consult APS and medical professionals to try to have him removed to where he can boyh get treatment and not be an unpredictable danger to SIL.

Good luck. Please take this seriously. It's terribly sad that through no fault of his own, his disease has now made him dangerous to his beloved wife.
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