Something unexpected can always occur. It’s been said, “stuff happens.”

But some things should not be allowed to happen. A little foresight and due diligence may save you a great deal of worry, and might even save you from harm.


What is covered in this article:

  • Pay Attention to Behaviours That Could Precede a Potentially Risky Incident.
  • Rid Your Home of Any and All Potential Weapons.
  • Make a Safe Space to Weather Any Storm.
  • Be Ready to Call 911 or Other Help.
  • 911 Calling: Clarify That It Is Dementia-caused, not Criminal Behaviour.
  • Rare, But Not Impossible: Be Prepared.
  • With Psychotic Behaviours, Placement May Be Needed.

PeClick to go to the Audio Recording of this articleople with dementia, by definition, do not have normal cognition. This means they can do things that are unexpected. Out of character. Those with Lewy Body Dementia can have extreme swings in their cognitive abilities, and so those unexpected episodes may happen as an even greater surprise. Add to that the potential for delusions, false beliefs, paranoia and psychotic episodes which are all possible and you see the great risk for extreme behaviour. Sometimes, the behaviours of a loved one with more advanced dementia with Lewy Bodies will bear no resemblance to the person you knew before.

Because of these same fluctuations, a person with Lewy Body Dementia can also be surprisingly agile and physical at times. Sometimes, when you least expect it.

Pay Attention to Behaviours That Could Precede a Potentially Risky Incident

Have a plan for the unexpected. If someone seems to be approaching a challenging phase, you will sometimes — but not always — have some inkling that things are not right: there may be indicators as you approach that episode. Outbursts, unusual confusion, agitation, anger, and frustration may lead you to think something is not quite right. If you spend a lot of time with your loved one, you know the norms: if it feels off, it likely is off. Listen to your intuition.

No warning is a possibility as well: so be prepared.

Reduce Risks.

Who doesn’t minimize potential, everyday risks? You would always remove tripping hazards, and reduce the potential for burns on a stove. Perhaps it is prudent to consider two rather drastic changes? Give some thought to these: firstly, removing all potential weapons and, secondly, a secure space for you at home.

Rid Your Home of Any and All Potential Weapons.

Weapons don’t necessarily need to be just guns or knives. Those are hopefully long gone at the first signs of any dementia. In addition, remove or limit access to other things like sharp implements, kitchen knives, scissors, shears, chisels, etc. If a psychotic episode were to occur, and your loved one believed you were a burglar, there’s no telling how it could end: they might believe they were protecting you. Lessen the chances for harm — critically assess and adapt your surroundings.

It might be worthwhile to have an acquaintance come in to look around to see if they notice any items that could potentially be a weapon. Once you’ve lived somewhere a long time, you stop “seeing” some things that might be right in front of you (like antique swords over the fireplace).

Make a Safe Space to Weather Any Storm.

A safe space for you can mean any number of things: everything from a full-blown “panic room” with secured entrance, windows, etc., to a simple route plan to get outside, or to lock yourself in a car. Having a plan beforehand is prudent. For example, you might want to keep a door jam, or a board that you could wedge on an angle against a door handle to keep someone out of the room you’re in, and always have a phone in there. Perhaps you would want a method to alert you if your door is opening while you’re asleep: there are inexpensive remotely ringing door alarms that are activated when a door opens. Motion sensors that go at the foot of a bed can also alert you that your loved one is up and about.

Be Ready to Call 911, or Other Help.

Finally, always keep a cell phone or cordless phone with you if at all possible, in case you need to make a quick emergency call — and know who to call, and the number. In stressful conditions, trying to remember a number quickly may prove insurmountable. Prudent, simple preparation is better than regret.

911 Calling: Clarify Dementia, not Criminal Behaviour.

If you think you may need to call emergency services in future for potential violence or extreme behaviour, you may be able to give them advance notice of dementia being an issue. You need them to know that they should treat the person as having dementia-related rather than criminal behaviour, even if they are potentially violent.

Have a plan for what you’ll say to the first responders. I suggest you say your loved one has dementia or a brain injury. Doing so may lead to more appropriate treatment, and help get them transported to a hospital or psychiatric institution instead of a police station or jail. If true, make sure you say that you do not want to press charges, and that they have mental illness, not criminal behaviour. Otherwise, lengthy court processes can ensue, completely out of your control.

Call your local non-emergency number to inquire if your area has a database that can attach a “flag” to your address or phone number, and that would show that dementia is an issue there. See if a service called Smart 911 is available in your area, which does this specifically. Currently, it is only available in the US — but it, or a similar service, will hopefully be rolled out elsewhere in time.

Rare, But Not Impossible: Be Prepared.

I believe something that requires this level of preparation would only occur to a tiny fraction of people with Lewy Body Dementia, but it is certainly worth considering. And certainly I know of more than one person who has been very frightened by their loved ones during a particularly difficult episode, and with the preparations above, their anxiety level would’ve at least been diminished, and the risk level lowered as well.

With Psychotic Behaviours, Placement May Be Needed.

If threatening or frightening behaviours have begun, this might be the time you will have to reconsider whether you can keep your loved one at home. It would not show weakness or faithlessness on your part. Placing someone in a facility that is properly prepared for difficult behaviours is better for your loved one — and for you — which will help you to provide better care for a longer time.

Again, threatening behaviours in a person with Lewy Body Dementia that would require such drastic measures are not something that I would consider “likely.”  Nevertheless, personal safety is critical — much like having seat belts or snow tires on your car, or a smoke detector or a fire plan at home.

Other Hazards From Everyday Life.

Some dangers may not be from weapons. They may be innocuous items, but if a person is not thinking clearly, unexpected hazards might arise that could be prevented. For example, a confused or erratic person might mistake what is appropriate to put in an oven, toaster or microwave, or on the stove. Even easier to imagine, is just leaving something on for far too long. If you think there might be a potential for fire, make precautions in these and any other areas that are appropriate.

A little foresight goes a long way towards increased safety.

Strength!
Timothy Hudson.

Updated March 25, 2017.
New section added above, March 8, 2016: 911 Calling: Clarify Dementia, not Criminal Behaviour.



You can listen to the story above by clicking the red “play button” below.

49 thoughts on “Stay Safe! Lewy Body Dementia Psychotic Episode Dangers.

  • June 16, 2016 at 1:02 pm
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    A friend of mine suffered a broken wrist when her LBD suddenly struck out and she fell to the ground. So it can happen. But I do not hear of many episodes like this. Do you think this is a common occurrence for carers to experience? I think the threat might be there in a bad episode but the actual attack seldom occurs. Do we know the incidence rate of these kinds of attacks?

    Reply
    • June 19, 2016 at 5:44 pm
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      I have never seen any hard data on frequency of violence or injury related to Lewy Body Dementia. I think it would be very difficult to get because much of it would be self-reported, and I’m sure many people wouldn’t give full disclosure on what happened in every case, much as forms of domestic violence is still likely highly under-reported. Psychotic episodes and aggression are absolutely NOT a given with Lewy Body Dementia — but they definitely can, and do, happen: so I recommend prudence, planning and preparation. Strength!

      Reply
      • December 7, 2019 at 11:12 am
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        It happens. Being prepared means alerting EMT – my LO was arrested instead of taken to ER. All kinds of problems began then.

        Reply
  • August 16, 2016 at 3:36 pm
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    Although my LBD has psychotic episodes I have never suffered an injury so I think it a rare occurrence. However, the mental strain is real and leads to exhaustion, or as I call it ‘weary’. This is exacerbated by loss of sleep.

    Reply
    • September 26, 2016 at 11:15 pm
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      I think that violent behaviours in LBD are not as common as may be believed, but because it is so horrifying to those affected by it, we will hear more about it, which makes it seem more prevalent. No matter what, constant vigilance is warranted. Strength!

      Reply
      • March 12, 2020 at 11:49 am
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        My wife has been demonstrating signs of LBD for 4 years now. Only on a recent 911 hospital visit did a doctor finally realize something was very wrong when she couldn’t walk. (Not the first time we’ve presented with this issue). She was admitted to the stroke ward and exhaustive tests, but yet no diagnosis is forthcoming.
        She has baffled the doctors. I asked if LBD has been considered and it was obvious that this condition had not even been considered despite the huge amount of information I have supplied demonstrating all the symptoms. Now she will go on a year + waiting list for a neurologist in Kingston. After 4 years we would just like to know what is going on.
        Thank you for your time.
        Janine

        Reply
        • March 15, 2020 at 1:30 pm
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          Hi Janine: Very sorry for what’s happening with your wife. It’s so frustrating to be confident of your own analysis, and have it dismissed or taken less seriously than your evidence warrants. The doctors may have other reasons for their discounting LBD, but it could also be pure ignorance — not willful ignorance, but just unknowing. I think that I would ask them what they suspect it might be, and what their recommended course of action is — despite being baffled, they should have some idea or hunch at least, and knowing what it is may allow you to more effectively present your own analysis as a viable solution.
          If you’re in Kingston, Ontario, the hospital may just not have the broad level of experience of a huge centre like Toronto, and even here, many know nothing about the condition. If results are unsatisfactory and dangerously inconclusive, perhaps you can seek opinions elsewhere.
          I can only imagine how difficult this is for you, especially with the added worries with COVID-19 now out.
          May you find some solutions, and effective treatments.
          Strength to you! Timothy Hudson

          Reply
        • October 31, 2020 at 4:02 pm
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          It took 6 years to get doctors to realize that they couldn’t find anything wrong. Symptoms started about 10 years ago. Started with imbalance. Went to multiple doctors. No one could give a diagnosis. I made a list and kept it going of all that I was seeing. FINALLY, I pointed out everything to our primary care doctor, who is a geriatric internist, and all symptoms pointed at Lewy Body Dementia. The doctor thought for a minute and said to me, “You are correct!”
          It was the MRI of the brain showing cognitive imbalance that made me start researching on the internet.
          When I found Lewy Body and the symptoms, he had all of them but hallucinations.
          I have ended up not loving him anymore (which stopped after 3 years of marriage!!!) but finding I’m a caretaker of someone who isn’t the person I married 12 years ago.
          You be strong and keep after doctors! The only firm way to confirm Lewy Body is an autopsy. But list symptoms and prove to the doctors the things you are seeing. Someone will diagnosis your loved one. It is a great relief when they do.
          Here’s a supportive hug to give you strength to endure the road ahead of you.

          Reply
        • July 14, 2023 at 2:45 pm
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          I am going through the same thing with my husband. I noticed something was very wrong with him back in 2019. He kept falling down while walking, his gait had changed drastically.
          Now 4 years later still no diagnosis but we visited a clinic this week and in his chart had comments of a memory doctor he saw last year stating that he was showing signs of LBD.
          I was surprised that she never told us at the time. Communication is a great asset!
          He sleeps 22 hours per day and eat one meal per day.
          I don’t dare approaching the subject as he is starting to show signs of violence.
          At least when he sleeps he is fine.
          His memory is terrible, one day he is lucid another day he can’t tell the month, the year, date or day of the week.
          He lost his driver license this week.
          Definitely an emotional rollercoaster.

          Reply
      • February 12, 2024 at 2:13 am
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        70% of caregivers over the age of 70, die first (Stanford Study); the risk to caregivers is real, diminishing it is not helpful.

        I’ve been a caregiver going on 10 years, actually longer because my belligerent DLB husband believed he was fine, when I sent him for testing in 2012, he schmoozed the psychologist and never was given a cognitive test, it is now 2024.

        Your comment hurts all caregivers, in that it undermines the real physical toll caregivings experience, both mentally and physically, please stop being an enabler.

        Reply
        • February 12, 2024 at 3:59 pm
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          There’s definitely a high proportion of caregivers that die before the one they care for. The risk and physical, mental and spiritual toll caregiving can take is very real, indeed. I’m sorry your journey has been long and hard, Jane. Strength and courage to you.

          Reply
  • April 4, 2018 at 1:58 pm
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    I read this article and though it has prudent advice it doesn’t help me or my situation. My husband has LBD and PTSD. We had a serious enough incident last year that required me to call 911. My husband lost all reason and cognitive thinking ability when he left the gate open and one of our horses got out of the pasture. He went into a rage which was eventually turned on me when I hid his guns. Luckily the police showed up and calmed everything down enough that I could leave the house and sleep in a motel for the night. The night away from home allowed me to contact his psychiatrist and get advice on how to proceed. I was advised to talk to the magistrate and have my husband picked up and placed in involuntary care. This would allow time to for doctors to review his behavior and to make any needed changes to his medications. I agreed as the episode had resulted in me on the garage floor and my husband kicking me.

    We did the involuntary commitment and my husband immediately contacted an attorney and wanted to file charges against me for stealing his guns, wanted me removed from our home and all medical information on him kept from me. I had medical POA which had been put into place after his diagnosis; the VA doctors totally ignored this.

    His meds were changed, he remained in psychiatric care for 7days and was released. I was scared to death!!! So far the anti anger meds are working enough that his anger hasn’t returned to physical abuse but I am extremely careful what I say or do. It’s like walking on egg shells all the time, I never know what or when his anger will be triggered. Just FYI for you, there are those of us out here who live this daily.

    Reply
    • April 14, 2018 at 5:47 pm
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      That’s a difficult, but important cautionary tale, Donna. Thank you for sharing. Certainly there are times where a Power of Attorney for medical care will not be enough, if the person with dementia is high functioning. But one doesn’t consider these things typically, nor early, in most cases. The vast majority of people will never need this, but as you point out — there are those who live this daily.
      > I hope you are able to stay vigilant, but also still have some life in your hours, which must be difficult as you are constantly “walking on eggshells.” I hope you also have your escape and local aid options for yourself planned, just in case. It may be that “Smart 911” operates in your area, so that any call to the police or emergency services will have notes on what to expect, history, etc. This is a great service, and well worth looking into if it’s available near you.
      > Clearly, though, one cannot prepare for any and every possibility. You’re in a super tough spot, with many risks, and I hope you have support nearby, and social contact as well as professional assistance.
      > Safety and strength to you, Donna! Timothy Hudson

      Reply
    • August 22, 2022 at 7:28 pm
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      How much of this violent/threatening behavior are you aware of in others? I see precautions that should be taken but what are the background cases that precipitate these warnings? I have experience with DLB case which resulted in a death.

      Reply
      • August 23, 2022 at 4:15 pm
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        Hi Terry: I have not had direct experience with this, but am familiar with a few cases in my groups that have experienced very challenging situations, and its upon those that these precautions are based. It is not prescriptive, nor binding, and is solely intended to help a person ensure they limit potential risk.
        I’m very sorry to hear of your own direct experience. In my case, I’ve only heard of this in quite rare situations — but as with anything, rare in no way means unheard of. Regardless, one must be both constantly vigilant and as prepared as possible.
        Strength to you. Timothy Hudson

        Reply
    • February 9, 2023 at 3:34 am
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      Dealing with similar situation. Does your husband remember the “episodes & the conversation during the episode?”
      After the fact?

      Reply
    • July 14, 2023 at 2:48 pm
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      I hear you Donna. I am at that stage now and it is an emotional rollercoaster. Like you said you have to be careful what you say so you do not trigger them.

      Reply
      • August 20, 2023 at 8:04 am
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        Do they become very accusatory? Everything he misplaces is my fault and he meanly tells me so. Face shows little affect. He sends me on all errands and just drinks, sleeps and reads. He demands a certain meal at 4pm, goes to sleep in recliner, wakes up at 6:15 and wants another meal. He played football in high school. Could this be LBD or just alcoholism. How do I get a doctor to consider this I am weary and I keep bags in the car for when I have to leave. What do I do to help us? Kathy

        Reply
        • August 20, 2023 at 2:00 pm
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          Very sorry for what’s happening, Kathy. I hope you’re firstly ensuring your own safety. It’s good you keep a set of bags packed, just in case. And more help for you, and sessions with an experienced counsellor seems prudent. Whatever the cause of his behaviours, a diagnosis and treatment certainly would be helpful. If alcohol is regularly consumed, I would personally suspect that’s at very least a contributing factor. Whether a person has dementia or not, alcohol is a psychoactive substance, and some of the behaviours and cognition that result from alcoholism can certainly look very much like dementia.
          I hope that you will be able to get help, for both of you. I don’t have a recommendation on exactly how, but I would reach out to a local social agency first, to see what’s available. Alcholics Anonymous might be a good resource as well, for some guidance for you, and for him, if he’d accept. Every location has different resources and your doctor would be a good place to start, or the hospital social worker.
          Sorry I don’t have more clarity for you. But you matter, and I hope you’ll be able to find additional help and clarity.
          Strength and courage to you.
          Timothy

          Reply
  • May 23, 2018 at 3:24 pm
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    Is there anyway I can email or print this article? I would like to share with others.

    Reply
    • May 28, 2018 at 1:18 am
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      Hi Sandra — You are welcome to share any and all of these articles for the purpose of educating or helping anyone with LBD — but I appreciate you keeping the source clear, so they are not misattributed (and in case anyone has questions, I will answer them personally, as I am here).
      > Strength to you! Timothy Hudson

      Reply
  • February 15, 2019 at 2:54 am
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    My husband just had a psychotic break and it was very scary and unexpected.
    He was diagnosed with LBD with Parkinson’s disease 2 years ago. However, he has had it for several years, I’m sure.
    He was stable and unimpressive at Christmas, and two weeks later he couldn’t sleep, had poor appetite, poor cognitive skills, and was hallucinating with delusions 24/7. He got out of house to chase his demons five times, and was barefoot in the snow on one occasion. Agitated and restless. Falling frequently.
    Neurologist wanted to put him in Geriatric Psych but no beds available. Said take him home and try to muddle thru until they can get him bed.
    Next day he fell and hurt his leg. I was concerned it might be broken (hurt to put weight on it), and with friends and lots of help, took him to ER. He was admitted, and finally got some help.
    After five days he was transferred to care facility. Now he has no hallucinations, or delusions, is walking with a walker, eating and sleeping, and you might wonder why he is there.
    But I am so relieved for my safety and his. What a dramatic flip of symptoms!

    Reply
    • February 24, 2019 at 3:22 pm
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      Very sorry for the unexpected psychotic episode, Connie. Sounds to me like you did absolutely everything right on a very difficult situation. Very happy he was admitted and has made such a dramatic improvement. You need a rest to recover, yourself. I hope you can get one now, on this relative period of calm.
      And here’s hoping that despite the wild fluctuations many people, including your husband, experience with LBD, that this is not repeated.
      Strength to you! Timothy Hudson

      Reply
  • May 20, 2019 at 2:00 am
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    What do you do with people you suspect have LBD- many of the symptoms- but are in total denial and won’t see a doctor to get a diagnosis? That describes my mother.

    Reply
    • May 21, 2019 at 2:18 am
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      It’s hard to know what to do. I’d try enlisting her doctor, or a family friend you can trust, so that it could appear to be someone else’s idea. If you provide the symptoms (and potentially any video you can get of symptoms, in case they’re sporadic, as is typical), I think many regular doctors would try to get her to go see a specialist. Sometimes it needs to be phrased as something that’s less upsetting than saying a dementia test. Could be a balance test, or reaction speed test. Hard to know, but testing is so important!
      You’re doing a good thing, Dana, advocating for your mother. Strength to you! Timothy Hudson

      Reply
  • July 8, 2019 at 3:36 pm
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    My beloved partner died three years ago from, we believe, Lewy Body Disease. All the complications you have described seemed to happen. i retained my love for him, but my sense of dis-connection became extreme, after he threatened to kill myself, the smallest grandchild and then himself. Somehow, the threat to the child, because he adored the little ones, made the most difference to my feelings. It was hard to overcome this and have faith that it was simply the dementia speaking. My question is, do Lewybody sufferers actually make such dire plans, then carry them out? I trusted that it was just an ‘episode’, but of course, and sadly, because he got much happiness from the children, I could not allow visits from the small folk, if there was only me there. I did not want them to be either threatened or to witness a distressing event. What a terrible end for such a beautiful family man. He had to eventually go to a secure ward in a mental facility, where i think he was moderately happy. I visited him every day, but was not sure if he knew me. Perhaps it was more for me than him, that i went. But, only a few hours before he died (in my arms) he smiled at me and said, “i want you to do something for me. Get a better man”. There isn’t one, and I am not looking. After I recovered from the extreme fatigue that years of caring seemed to bring, and began to understand more about the condition, I regained my love of the man that once was there, and in a way, found something quite special about the years of caring, which i feel sure, he would have done for me, if the situations were reversed. No regrets, just love.

    Reply
    • July 8, 2019 at 3:44 pm
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      That is quite a tale, that really embodies the roller-coaster aspects of LBD, Anna. Thank you for sharing it.
      I’m not a doctor, so I can’t comment on how likely it was that he could make plans to follow through on his very worrisome threats. I know that some people have followed through, but whether it was planned, or just “in the moment,” I’m not sure anyone could know with certainty. You definitely did the right thing having him in a secure ward, both for you and the little folk. Your own safety must always be paramount. And by visiting him daily, you ensured he was very well cared for. You were his angel.
      The final statement he made, that “I want you to do something for me. Get a better man,” is profound, and really embodies how the condition can fluctuate so drastically, from psychoses to lucidity, sometimes right to the very end.
      You did a good thing, and your lack of regrets will help you stay filled with love. It’s very inspiring.
      Strength to you! Timothy Hudson

      Reply
  • December 17, 2019 at 5:13 pm
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    Reading all this helps with me and my step moms situation with my 85 year old dad. I live in a different state, Illinois and they’re in California. I can’t help as much as I want, any suggestions?

    Reply
    • December 18, 2019 at 1:24 am
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      Sorry for how all this is going for your dad, and for your mom helping him, Patrick. The only suggestions I have are to visit as frequently as possible, yourself, and truly be “present” while there, and also to see about hiring help for your mom, so she can get breaks, and more significant periods where she doesn’t have to be vigilant. If he’s 85, she’s likely not young, and full time care for a person with LBD is extremely difficult. Whatever you can do will help. The more the better.
      Strength to you, and to your family! Timothy Hudson

      Reply
  • December 18, 2019 at 1:27 am
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    This article is not to cause terror, but to show that it is important to always have a backup plan. It might not have helped in this particular situation, since I have limited knowledge of it. But constant vigilance is needed, even if something like this is extremely rare — just like locking ones doors on the house, prudent prevention is better than an extremely rare bad outcome, when it’s avoidable. Strength to all! Timothy
    https://www.edp24.co.uk/news/crime/jury-to-decide-if-michael-hubbard-killed-his-wife-france-hubbard-norwich-crown-court-brooke-1-6426425

    Reply
  • April 13, 2021 at 2:54 am
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    I’m not sure if anyone is still answering the forum, and this is not meant to scare, but I feel I need to share my story. LBD tragedy struck my family over a year ago when my father took my mother’s life.

    My father was first believed to have Parkinson’s, but later they diagnosed him with dementia. I don’t believe anyone ever diagnosed him with LBD, but it’s extraordinary clear to us now that that’s what he has. Much like the previous post in the U.K. article, he is awaiting a competency hearing to see if he is competent to stand trial.

    Does anyone know of an organization that might be able to make a brief statement about LBD symptoms during his competency hearing? I’m not asking for a diagnosis, just a rundown of the symptoms and how they can be potentially dangerous. I feel that the prosecution and probably the judge know nothing about this disease and its erratic dangers, and right now, the psychological evals are based solely on regular dementia. I’m in the U.S. FYI.

    Either way, thank you so much for the helpful info on this website. I only wish my family would have stumbled upon it sooner.

    Please, if your loved one suffers from LBS, keep all household items that could be used weapons stored away. My father was a kind and gentle man. We never expected this. The risk is small but not worth it.

    Reply
    • April 27, 2021 at 3:29 pm
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      So terribly sorry for what happened, Nate. But thank you so much for posting, especially as a cautionary tale. Although this is far from common, it is not impossible, and I certainly wish that everyone would always plan for every possible risk. Staying safe is so very critical.
      I can’t provide you with testimony as an expert witness, since I’m a lay person, not a medical professional. But there are many geriatric psychiatrists, and neurologists I would expect could speak on this. The bigger institutions tend to have the most informed specialists, and I’d start there.
      I hope things turn out as well as can be, and that you are able to move forward, yourself, despite the multiple horrors you’ve been subjected to. And that the justice system proceeds intelligently, not just punitively.
      I’m glad we were able to have the offline exchange. Thank you for your candour.
      Strength and recovery to you.
      Timothy Hudson

      Reply
    • September 18, 2021 at 11:10 pm
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      I had a terrible break last night. The rage finally over boiled and I lost all self control. Because it comes and goes my family thinks that I’m having a sky is falling pity party again and again. I’ve exhausted my family, they have placed me in a independent living facility. I mostly enjoy it here I make friends easily. My youngest daughter has guardianship over me and recently we’ve butted heads over my finances, she has been on vacation and told me:
      ___________
      Dear C,

      I am very hurt by the way you talk to me and treat me. Everything I’ve done for you – bail you out of jail and keep you out of prison, for one – has been in the best interest of you. I have dedicated countless sleepless nights, hours and days of my personal and work time to serve you.

      You claim I’m not working with you but I’ve done everything you’ve asked me to do, regardless if I think it’s the best thing for you. You begged for us to place you on independent living at Pacifica. I did it. You wanted to sell the note of your mortgage. I did it. If I didn’t, and you were able, you would have done it months ago. You wanted to be under the care of hospice. I did it. And yet you complain I’m not working with you? You are never satisfied.

      I am legally obligated to keep you safe from yourself and others. I took this obligation on because no one else would. And now you’ve turned on me, like you do to everyone who helps you. I’m a constant target of your abuse, it’s toxic, and unfair. You are a victim of your own choices when things don’t go the way you thought or when you change your mind at the last minute. Your lack of self awareness limits your ability to think that maybe your problems are because of you. Not because of me or anyone else.

      So, as my last attempt to do as you wish, I will no longer keep a personal relationship with you. Our relationship from here on out will be at the obligation of my guardianship and purely transactional. When you need something, please refrain from texting or calling me. You can email me and I’ll respond when I am able. If I have questions, I’ll call. I suggest you review the guardianship paperwork so you can understand what you are legally able to do on your own and what you’ll need help with.

      I hope you find the happiness that you seek. That’s all I have to say.
      J
      ___________

      My daughter who has no clue what I’m going through put me in a mental facility after getting out of jail. I had been arrested while seeking help at an emergency room. The charges have since been dropped. I don’t know what to do? I can’t talk to my family for fear that they will turn their back on me again . I was in such a rage last night I hung up on the suicide hot line
      C

      Reply
    • August 22, 2022 at 7:53 pm
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      I’ve responded to another post on this thread… I have experience with an individual who was tried and sentenced to prison following a dispute with another individual with lbd. As you stated the no one in the court had experience with lbd and it’s dangers

      Reply
      • August 23, 2022 at 4:08 pm
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        What a punishing scenario for all involved, Terry.
        For a situation such as this, I’d see whether a neurologist or specialist at an LBD Centre of excellence could be engaged as an expert witness. A psychiatrist might as well, but in my limited experience, it’s only been geriatric psychiatrists that have the expertise with LBD.
        You add a very worthwhile cautionary perspective, and one others should benefit from.
        Strength to you. Timothy Hudson

        Reply
  • May 10, 2021 at 1:49 am
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    My Dad has had the illusions for a few months now, what worries me is he sees people that he is now categorizing in groups, the women that want to have sex with him, the men that are upset about it and are trying to hurt him and the couple that have powers. It’s pretty bizarre to say the least, and he sees them every night. I dont know how much worse the characters will get.

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    • May 25, 2021 at 6:32 pm
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      Sorry for what’s happening with your Dad, Donna. I wish there was a way to have certainty about the progression. For many people, things do not worsen significantly in this aspect, although this is definitely not universal.
      He’s very fortunate to have you on his side — you are his angel.
      Strength to you!
      Timothy Hudson

      Reply
  • February 21, 2023 at 8:50 am
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    My dad has LBD and it’s been a year that my family and I found out, we took him in and things haven’t been easy but we’re working around it, but lately his hallucinations are sadly getting crazier and he keeps thinking someone is breaking in: one day I was getting ready for work in the morning, and I guess I wasn’t loud enough, and he thought I was an intruder. I kept saying my name and telling him that it is me, but I saw that nothing was going to get through and he tried to attack me. My family was able to wake him. It’s sad that this has happened, but he was only trying to protect us. Now he has dreams that we’re disappointed in him for not protecting us, and he tried to leave in the middle of the night. Luckily, again, we were able to catch him and calm him down and stop him. We’re trying to be there as much as we can, but I have to admit it’s difficult and heart breaking to see this happening to my father.

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    • February 24, 2023 at 7:30 pm
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      Very sorry for what’s happening with your dad, Taylor. You are certainly doing everything fabulously, and your reaction to his thinking you were an intruder was wise, even though you were unable to convince him of your identity. I hope this will pass soon, and that he’ll be calmer in the coming period. There’s no way to be sure — but you and your family are superstars for keeping him so safe, despite the countless challenges and so many unpleasant surprises. He’s blessed to have you as his angel.
      Strength and courage to you.
      Timothy Hudson

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      • October 21, 2023 at 12:41 am
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        This is precisely the scenario that I have previously written about… LBD sufferer staying overnight in an unfamiliar home while medicated and binge alcohol drinking declares the presence of intruders and attacks the homeowner with a weapon resulting in his own death and the conviction of the homeowner. Court and jury unable to grasp the risk presented by lbd.

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        • October 25, 2023 at 1:47 pm
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          Indeed, that is horrific scenario, Terry. Few have a perspective on the psychiatric potentials with a condition like LBD. And although these scenarios are fortunately very uncommon, the impacts are so powerful they need to be actively avoided, at all costs.
          Strength and courage to you.
          Timothy Hudson

          Reply
          • October 27, 2023 at 4:10 pm
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            Timothy thank you for what you do here… is this thread/conversation available on your website lewybodydementia.ca

          • October 27, 2023 at 4:23 pm
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            Thanks for your kind words, Terry. Yes, this conversation is available on the LewyBodyDementia.ca website — I personally approve comments, so sometimes there’s a fair delay in them appearing.

  • January 12, 2024 at 4:09 am
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    I was in my office while I thought he was sleeping. He came in and started punching me on the chair. He would not let me up. Finally got up and went to living room and threw me on the couch and hitting me on the head with a metal water bottle. Was able to get free and ran to the kitchen to get into the garage to my car. He cornered me and started choking me. Got loose and got into the car and locked it. He came out and started to try and break the windows on passenger side with now 2 metal water bottles. Could not break the windows so he turned around to look for something else. I got out ran to the kitchen and locked the door so he could not get in. Now in a facility.

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    • January 12, 2024 at 2:58 pm
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      That must’ve been so horrifying and traumatic for you, Kathy! Thank you for sharing, to give a cautionary tale to those who need to be aware and vigilant if there are any signs in advance. Thankfully this is not so common in my experience, but certainly does happen, as you can attest. Were there any signs beforehand, such as aggressive behaviours, mistaking you for someone else, paranoia, etc?
      Glad that you are safe and that he’s now in a facility, and I hope they’ve got things leveled off for him with treatment.
      Strength and courage to you.
      Timothy Hudson

      Reply
  • February 17, 2024 at 11:29 am
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    These messages have served to open my eyes regarding the real possibility of severe and dangerous episodes regarding LBD patients. My husband has LBD and is in the early stages. He is on Quetiapine but continues to have hallucinations, delusions and active dreaming episodes. Though, his episodes are not as severe and dangerous as those mentioned above.
    The message where a wife says she feels disconnected from her husband is how I feel. He is very seldom the man I married 49 years ago. The love I had for that man is locked away and frozen in time. He has not been physically abusive but I’m afraid we’ve both lapsed into verbal abuse intermittently. Tonight he came out of the bathroom with a back brush ready to hit anyone trying to attack him. I yelled at him to put it down that there was no one or thing trying to attack him. He’s always accusing our kids or grandkids of attacking him although he never says they hit him. Even though he hasn’t shown any hostility at all when they’re visiting, I now realize I have to be aware of his moods constantly when they’re here in case he gets “postal”.
    The previous messages were very important and relevant to my situation and I want to thank you for posting them.

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    • February 17, 2024 at 7:33 pm
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      Contending with paranoid delusions and hallucinations can be very challenging, indeed. Sorry you’re experiencing this, Eleanor. You’re wise to be vigilant about it, because even with it not be what I’d describe as common, it doesn’t mean it could never happen. Being prepared and alert is prudent, especially if there have been times where things were distinctly “off” already.
      Strength and courage to you!
      Timothy Hudson

      Reply
  • February 19, 2024 at 8:20 am
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    Thank you for your words of encouragement and taking the time to reply. I will remain vigilant to any changes in behavior.

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  • February 19, 2024 at 8:23 am
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    Thank you for your words of encouragement.
    I will remain vigilant to any changes in his behavior.

    Reply

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