How do you handle terrible hallucinations and delusions?

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How do you handle terrible hallucinations and delusions?

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I live with my mother, who has advancing dementia and the most unreal, surreal, completely out of nowhere delusions and hallucinations. I could never in my wildest dreams have imagined the things she comes up with. And they are all horrible. My sister and I are building some kind of torture structure in the backyard to kill her in terrible ways. There are people in the house who are going to kill her. My sister puts things in her ears at night so she can't hear. Etc.

In answer to similar questions about how to handle this, many posters have offered suggestions like check for UTI, get her on medication, redirect her and so on. None of these things work. Believe me, I've tried them all. (She is on Seroquel, which probably helps to a degree; who knows how bad it would be without it?) It also doesn't work to try to tell her these things aren't happening to her. I know this, but sometimes I can't stop myself and I lose my patience way too often. At the suggestion of another poster, I'm carrying a worry stone, in my case a small glass heart. Holding onto it for dear life gives me a moment to take a breath and calm myself down when things go completely off the rails.

I would love to hear from anyone who is dealing with a combative, impossible to redirect LO who is having hallucinations and delusions that go so far beyond the garden variety "somebody stole my purse" that they might as well be from Planet Xenon. In the meantime, I am carrying my worry stone with me at all times.

Alzheimer's & Dementia Delusions Hallucinations

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I think Mom is past the point she can be cared by you. If medication is not helping maybe she needs a stay in a Psychiatric facility. They can try different "mixtures" till one works.

How many people live in her house? Maybe part of the problem. Too much stimulant.

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Meds may help.

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Man, I feel your pain. Our LO isn’t having persistent delusions, but instead perseverates constantly about horrible things that may befall family members (car accidents, cats being hit by cars, kids breaking things, neighbors dying, etc). It is like having a miniature Greek chorus, always predicting the tragic end to any and every daily event. It has sucked the joy out of the most simple things, like sitting down to breakfast. It’s amazing. I never knew what an optimist I was!

In any case, we are going to look into a geriatric psychiatrist for her... hoping that there may be some medication that migh alieviate some of her anxiety. Have you guys consulted a specialist like this, or a neurologist? They can try a variety of things pharmacologically that could make continuing to care for your mom at home more workable. We are hoping for a similar outcome over here at our ‘happy’ house.

Good luck, and God bless ~

Andy

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My mom is in nursing home with dementia and she lost my dad two months ago. She started asking where did they move him as he was in the room next door when he passed. She got very depressed so they started her on meds to treat that and dementia which now she is seeing bugs on ceiling and getting more actively weird when she talks. I asked for uti check they said no symptoms so no urinalysis done.

I try to visit at least five times a week, but it is difficult when not sure if she knows you and she can say rude things. The mom I once knew is gone but will continue to visit.

Many days it is a struggle and I find a lot of similarities with a small child.

i feel your pain

melissa

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Melissa, I suggest revisiting the UTI aspect. I don’t know what symptoms they’re looking for but hallucinations and new bizzare behavior ARE symptoms of UTI. Sometimes there’s a strong smelling urine or may have a low grade fever, but not necessarily. Her first RN wanted 2 or more symptoms, but I’ve worn them down. My moms hallucinations are basically her only symptom, and she has tested positive in 90% of those instances. (The other times it was med induced, and the rest is insomnia/agitation.) They now test her when she’s seeing people or “back at work”. If you’re local you could even do a quick AZO test on her which if positive would give you some backup when you ask.

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I wish there was an answer - I fight it daily with my mother and my husband who are both in an assisted living facility and both with advanced dementia that worsens daily. My husband is the most combative - mom is just angry. It makes sharing time with them difficult despite loving them both so much. They are angry, combative, and don't want to hear anything contrary to what they think is real so I've learned to try to go with the flow and not ruffle feathers so I can go home at the end of the day and have some sanity left.

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Oh my God, I am so sorry you have to deal with both of them at the same time. I think I’m going to lose my mind with just one. You must be a saint.

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She needs a neurologist who can prescribe and adjust meds.

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I am going through the same thing exactly with my fiancé’s mother. It’s a nightmare. Everyday is a battle. We have changed meds several times. She is also on Seroquel and like you it’s hard to see if it’s working. She is also on Zoloft and lorazepam. She has three personalities that I have named. Before my fiancé comes home from work I send him a text to let him know which one she is. It’s either crazy Maria who thinks people are going to steal her things so she hides her stuff in drawers and in the closet and puts clothes and towels on top of them, she thinks her sister is coming to get her so she is always pulling everything out of her closet and drawers to pack, nasty Nancy who is just nasty and combative or Sally whom walks around hallucinating, seeing people, hearing things and just paranoid. She follows me all over and just babbles. I don’t understand her most of the time. She also comes up with bazaar stories. She thinks there is a lady that comes to pick her up and brings her to a house and brings her back. She says the woman comes through her bedroom window and goes back out the window. She sits on the couch and forgets where she is at and asks when we are leaving to go home. She goes to the door several times waiting for her husband to come home when he passed away three years ago. She is always falling and she calls her sisters at all hours of the night. She does not sleep well therefore I don’t get much sleep either. There is so much more that happens with dementia and so far there is nothing that helps her sleep. It is a nightmare trying to deal with this 24/7. My next step is a Phycologist to see what we can do as this disease gets worse. She is at the latter stage and I am told it just gets harder. I try my best to stay healthy. I have a gym and I walk my dogs as much as I can. I have always been an outdoorsy person and very much into working out. Having to deal with someone with Dementia is one of the biggest challenges I have ever faced. It draining and sucks you dry. I refuse to go on meds so I exercise and work on art projects along with refurbishing furniture. In the summer I do a lot of yard work while she sits on the deck. You are always watching and waiting for things to happen. They say it’s like taking care of a child. It’s not like that, it’s in a category of its own. A child eventually learns what is right from wrong. Someone with dementia forgets everything and the brain forgets what you told them. They do not learn anymore and they do things that will blow your mind.
So as far as anyone going through what you are, the answer is yes. People say one day at a time but living with a person with dementia is like one day running into the next. Always stay on your toes just waiting for the next disaster.
Good luck with your journey. When it’s over you can breathe again.

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This is so true. All of it. Sorry you are going through this.

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im afraid i dont have any answers for you but i have a similar problem. My mother lives outside a quiet village on the road to nowhere but to hear her talk its crime central with villains and thugs roaming around waiting to do harm to her. Besides these anonymous people, my brother is poisoning her. They hide her things for a joke and she fears for her life. I don't cope well because you cant reason and you cant go along with it. Its hard. I am looking for an answer but I don't think there is one. Just keep going, doing your best and be kind to yourself. Love and best wishes

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You hit the nail on the head about not being able to reason OR go along with it. It helps me to know others are experiencing this. Thank you for your reply

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I imagine Mom is on Medication for this? At any Rate, I know where you are Coming from. Been there and Done That, At a Few Nursing facilities. We just Ignored them, Tried to Comfort them, But of Course, We didn't have to Live with them.
You might eventually want to Consider a Nursing Facility for your Own at Home, Peace of Mind.

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My Mom had similar hallucinations; a red haired guy was climbing out of the drain in street and coming to get her. Many more besides that. She would hide in her closet at night she was so terrified. I put a mattress on floor in there for her to sleep on since could not get her to stop getting out of bed and would find her curled up in corner of closet. She would get in there and pile up all her shoes around her and other junk.
That went on for over a year. Finally got her on Trazadone at night and helped immensely. She was still very paranoid but not as bad. Also added Seroquel in am. That stage seemed like would never end. She was diagnosed 5 years ago. The paranoia lessened about a year and 1/2 ago. It is nowhere near what it used to be. Still sometimes she thinks her food is poisoned but much better than before. Hoping your Mom will pass out of this stage sooner than later. It will pass; many hugs in this difficult time.

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How did you get her to take meds for her condition? My mom absolutely refuses and doesn’t want to talk about it. She thinks everyone is out to harm her: poison, torture, watching her every minute, controlling what she can and cannot do. Stealing or destroying her possessions. How do you convince her to trust the doctor and take the medication?

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My Dad (88yrs) has dementia also. One day Mom (86yrs) called me frantic, she could not keep Dad in the house. Dad was insisting someone was picking him up for kidney stone surgery. Mom got Dad on the phone. I asked Dad "What is going on Dad?" Dad said "I am having surgery today." I said "well I don't know of that happening today" Dad got upset "Why does everyone treat me like I am crazy? I should just jump out the window on my head!" Mom and Dad were both suffering at that moment, I didn't know what to do. I asked Dad who the surgeon is. I told Dad I would get answers and call him back. I waited a few minutes and called back. I told my Dad that I called the Doctor and they had to cancel the surgery due to the surgeon having a stomach virus. That diffused the whole situation. Dad felt like he was right and not crazy. Mom was relieved...all over. I has been my experience that the dementia patients totally believe what they are experiencing is true, they do not want to lose dignity.

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yes. It does no good to disagree. During nursing school decades ago, Mom said that women were routinely given something called "twilight sleep" while in labor. These women had no awareness or memory of their actions. Some were known to stand on their bed and demand to go home.....while in active labor. Mom found the best way to help these patients was to go along with them and with a calm voice encourage them to lay down until their ride arrived. She diffused some difficult situations that way. Your example of "calling the doctor" and coming up with a reason that fits with their delusion is better....you're not doubting them. My reason for my illustration is two-fold. One, it isn't constructive to oppose your LO in this condition; that only increases their frustration and agitation. Two, even young, healthy individuals can have crazy delusions because of medication.

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I know the stress of things coming at you from out of nowhere. My mom was bedridden in my home with numerous medical issues. When she went on hospice it got a bit better. There was a difficult stage she went through with terrible hallucinations that would often scare me as well but I had to remain calm. She would yell in the middle of the night that furniture fell over in her room, someone was looking in the window, (particularly scary as it was on the first floor), or someone rang the doorbell at 3 am.....Particularly bizarre was the hallucination that a woman's head was on top of mom's TV spinning around. Where does this come from!!?? I would calmly tell her it was ok and she would eventually calm down. I also kept a low wattage light on in her room, but that may not work for everyone. I hope the hallucination stage passes. Please remember to take care of yourself with little things like a good cup of coffee or watching birds or a sunset at this time too! I went through tons of adult coloring books during this stage.

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Been there, done that, got the T-shirt! Went through the same thing with my father in early stages of Lewy body dementia. He accused one caregiver of sexual abuse; he imagined men trying to break into the house to hurt the caregivers; he insisted the microwave would not work until his outside security light came on, my brother and his wife were lying dead in the backyard, the neighbor kids were banging on his windows in the middle of the night, etc. This 80-year-old man would chase the caregivers out of the house to their cars, bang on the windows until they drove out of the driveway! After the third incident of this, I called the squad to have him taken to ER. They put him in a psych hospital for 30 days; that Dr had him on different meds; the hallucinations and car chasing stopped, and he slept through the night, but he was always stoned. I then found a neurologist to help us and he took him off many of them. He is still on Seroquel 11 yrs later, but has his regular personality. The psych meds are trial and error - you need a doctor to continuously tweak them - but they help. Good Luck!

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Wow! That appears to be the worst case I've either seen or read about. I'm glad you found a solution that worked. Have you ever told him about what had happened before the doctors got this under control?

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I’m SO sorry you’re having to go thorough this. It sounds just terrible and I feel for you. Several doctors who have worked with our mother, who started on Seroquel, wanted her off of it as soon as possible as it would not work for her paranoia (which has been diagnosed as severe, but diesn’t Sound as severe as what your mother is going through) and psychosis. Our mother also has ALZ. She’s been on risperidone for about one week now. She is in memory care now and because of her uncontrollable outbursts and verbal violence, we’ve been asked to stay away so she has time to adjust. We check in everyday and have been told be two separate care givers that she is showing good signs of calming. Not sedation, but calming, and we may be able to visit her soon. Maybe this can help? Please take care of YOU.

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Glad to hear your mom is improving. We may have to move my aunt to Memory Care in the future due to her ALZ. For now she shares a room with her husband in Assisted Living (they are there only because DSS took on their case and got them placed—with my blessing, I will say).

Please let us know how your mom continues to do in her new space. I pray she'll feel secure and loved. I can't imagine being a caregiver in a Memory Care unit!

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Try telling her that they're trying to torture you and your sister as well; that you have seen them and are doing things to protect all of you. Reinforced to her that it's not you doing it but THEM. Also tell her you have taken steps to have them captured. Tell her you don't want her to die because you need to her to protect you! Sometimes you have to go along with the hallucinations. If you tell her she has special powers and sees things that you don't always see, that may help.

The main thing you have to do as understand that this is normal and that you need to reinforce to her that you need her. I deal with things like this and much more with my 91 1/2 year old father. It makes him happy when I join in and tell him how much I need him. Reinforce that bond of love. In her own way that's what she's crying for.

Dad takes a low dose of zyprexa at night and it helps. What helps the most is taking time to show love and protection!

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I can’t imagine what I must be like for you dealing with this on a 24/7 basis. My mother too had delusions. Hers were that my father was harming her, including sexually. They are together in a graduated care facility. Her geriatric psychiatrist did put her on psychotropic med and it took a bit to find the dose that gave her peace. It was so hard to hear her accuse dad of these things, and staff had a hard time teasing out truth from delusion, as they felt responsible for her safety. As the medication finally started to work, fortunately for us, the delusions subsided. She still has exaggerated reactions to what she perceives as a negative tone from dad from time to time. But it is just as likely that within hours she will be singing his praises. But it does seem as though the worst of the delusions may have been “a phase” until whatever part of her brain was under attack from the Alzheimer’s was completely shut down. (My theory) I hope so strongly that you can find some relief. You seem fully aware of the options. None of us can tell you what is best for your situation, but as you note, this can be a good place to come for support. In that vein, I want to stress how important it is not to beat yourself up if your human side takes over and you react in a way differently than you had hoped. You are under terrible stress. Try hard to be good to yourself. Holding you in my thoughts for strength, peace, wisdom, and comfort.

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Thank you so much for this reply.

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Besides the Seroquel, is your mom on any other medications, and if so, how many? Polypharmacy (multiple prescriptions) is associated with cognitive impairment, delusions, dementia, falls and a host of other things. If she's on multiple meds, it's worth having her doctor assess her pharmaceutical regimen.

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First, read up on Charles Bonnet Syndrome. You will realize you and your mom are not alone!
Second...don't tell her she is not seeing what she is seeing. Tell her she is seeing past the "veil" and what she sees cannot touch her. This gave my mom some peace.
Third...tell her to think of them as a bad or scary movie! Moma never bought that but she was sometimes entertained by them.
Fourth...don't always assume she is hallucinating. People do bad things to people who cannot protect themselves.
Lastly...I spoke with a doctor who worked with Charles Bonnet patients for 30 years. He astonished me by stating that no matter what the education level, job type, financial situation all of his patients had the SAME bizarre hallucinations about things they had never had an exposure to, experience with, or probably even read about. Hence why we started telling her she was seeing past the "veil". True...I don't know, but I do know it was the only thing that gave her any peace. Heartbreaking for sure! My prayers are with you!! Hope this helps a bit! Jean

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Thanks to all for your compassionate replies. It helps to know there are others who are experiencing this situation. Mom spent a week in a geri-psych ward and they sent her home with Seroquel, Rivastigmine and not much else. There is one geriatric psychiatrist in our area and he never called back when both her primary care physician and I tried to get her another appointment, even though she was already in his system. I'm not so sure going through medication roulette will even help anyway. I'm afraid the disruption of driving her 30 minutes each way to doctors' appointments would be even worse. She's not very mobile and getting her in and out of the car is hard on her. Her primary care physician increased the Seroquel and she is at least calmer.

I think I'm just in for it as long as this lasts. I'm getting better at managing my own impatience (and anger, if I'm honest). This forum provides so much support. I thank you all.

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Hi Debbye,

I was in your situation a year ago, my mom had a stroke 16 years a go, and has been a decline ever since (now 86). We went through a lot of hospital stays, rehab facilities and a geri psych as you mentioned. There were the "someone took all of my money", instances, "look at all of the moths on the wall", nothing there, and the list goes on. It is very scary at times, the mid is playing tricks on them, but they think it is so real. As others have said, trying to reason with them only makes it worse. They get very defensive & agitated, that is usually when my mom flips me off & the swearing starts!
: ) She was not one to talk like that! They are a lot of nasty things that come out, but I try to only respond when she has something nice to say. Otherwise, I just change the subject. We had to put my mom in a nursing home last March ( almost a year) and she still "hates it" and tells me how horrible I am for "doing" this to her. Trying to explain it was doctor's orders does not help. It took me a long time to stop blaming myself and realize this was best for her & I. I know she is fed, safe & cared for. I couldn't be there 24 hours. I wish you the best. Use this forum as a tool. It has definitely helped me.

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I'm afraid there's really not much you can do other than nod and agree with your mother. The only thing you can do is keep working with her doctor. If she gets to the point where her hallucinations become very dangerous, worrisome or deadly, it's time to look at placing her with trained medical professionals instead of with you. She can hurt herself if left to her own devices.

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This is all too familiar to me. My mother also suffers from this...when she either has a UTI, hydration, or a change of environment. I have been called a witch and a liar...she gets so combative that she broke the cardiac monitor in the hospital by throwing things forcefully. She broke capillaries in her eyes because of her rage and her blood pressure went through the roof. She had horrible delusions, taken right off her TV and told us they were happening in her room. We had to get her doctor to prescribe anti anxiety meds. We also did not permit any TV of news, murder stories or violence. So that is one thing you can do. I would get her on some kind of anti anxiety meds if possible. Good luck. I know how awful this is.

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My mom's hallucinations and made up horrific situations seemed to be caused by her worries about taking care of her house, her money, and herself, even though others were doing all of it for her. Somehow by moving into assisted living the horror stopped, at least for now. She thinks some of the time that she is there to take care of the other residents and is actually very comforting to them. She helps in the kitchen and sits in on staff meetings.

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Been there. A few years ago my mom started out seeing men in hazmat suits and chickens in the neighbor's backyard and three little kids in her bedroom at night. Then after a major stroke in 2017, they became extremely scary - people emerging from the walls to taunt her, nurses making fun of her, a drunk man in her bathroom barking like a dog and now the staff is trying to kill her. Lots of anxiety, anger, crying, agitation. There's also an ongoing theme of boyfriends cheating on her and "girls" stealing men from her. She's been under hospice care with dementia (I think vascular) for 7 months now. Meds have helped a lot, but she still does have bad nights and bad weeks occasionally. Takes Seroquel, Lexapro, sometimes ativan, morphine, hydrocodone. There's also a HABR paste they use on her arm. I won't lie. It's rough seeing my beautiful, sweet mother with hallucinations and delusions, but it's the hand we've been dealt and I will see it through.

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My mom had delusions, hallucinations, (both visual and auditory) and illusions too. I had to remember that "ill"usions was an appropriate term, since Alzheimer's is an illness, after all. I used to try to convince my mom that coffee thieves were not coming through the second story window to siphon coffee out of her cup, but it was less stressful for everyone if I just went along with the hallucinations. If she said that women were coming into her room, ("The Golden Girls" from TV), I told her that since she was such a nice woman, other women would come to her for advice. If she was going to meet, "a man," down the street, (to clarify, my dad died years before, and this was a new man in her life, in her mind, anyway),I told her that he was visiting his daughter out of town. It caused me to think on my feet, all the time, which could be challenging and exhausting, all at the same time. My mom, too, couldn't be re-directed. She'd always circle back to the hallucination of the moment, and no amount of reason could get to this once intelligent, well-educated and articulate woman. I even wrote about it in a book, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Best of luck. R. Lynn Barnett

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Interesting thing about the boyfriends/men. My mom thinks she's been married and divorced several times. Doesn't know any of their names. Even the nurses have asked me about her marriages since she sounds so convincing. Truth is, she was happily married once, to my father for 54 years. He died nearly 20 years ago. Also a lot of talk about "getting some nookie," inability to find anyone who will "put out," wanting to "serve up herself" after serving him coffee! Most definitely not the type of language or topic we ever discussed in the home.

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Sometimes you need to try different drugs until you find one that works well. A geriatric psychiatrist may be able to help. My patient takes a very low dose of zeprexa.

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What about some music as therapy? - but only music with positive associations like some of the tunes from Fantasia or other upbeat songs like The Flight of the Bumblebee - even have her watch old light children's movies to possibly redirect where her thoughts are going - good luck

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Ask doctor for respiridone. Helped my MIL immensely.

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When my father had these kind of hallucinations I would tell him that I would call “the parents of the children who were tearing up the yard and hiding his rakes to let them know that the kids were not to come over anytime at all.” When they involved bad men I would tell him I was calling the police on them.
You with her accusing you and your sister of the torture device have it a little harder. I would suggest you tell her that you guys are going to take it down and burn the wood. Then if you are able to have a small bonfire and toast marshmallows with her. Make a better memory for her. This may or may not work, it usually did for my father until the next time something came up. The key is to remain calm and speak to her softly and gently, listen to her fear and make up a lie that will reassure her that you will take care of it.

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My mom is 83 and has dementia. She has been living in memory care for about 3 years, but lived with me for 5 years before that. We go through times when she doesn't remember her parents are gone and she is trying to get in touch with them. She wanted to buy my stepfather a Christmas present last year (he's been dead for 13 years). She thinks the sweet little old Italian grandma who has the room next to hers is in the mob and trying to kill her. She feels there is an organized crime ring among the residents of her facility and they make keys to get into her room and steal things from her. Coincidentally, she too is on Seroquel. I wonder whether this is a side effect that they don't tell you about. Occasionally, I can sit her down and ask her whether she really truly feels the stories she is telling me make sense. Sometimes I enlist the help of the facility staff who deny the crime ring and the plot to kill her. If she's having a good day, she will admit that she might have misinterpreted things people have said and done, however, if she's having a bad day, nothing I say will convince her.

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Not just UTI - ANY infection can cause or aggravate dementia. My dad was as bad as your mom sounds. He had a leg infection. His dementia went from zero to 60 in one day.

When his dementia didn't clear after the leg infection and got to the end of the spectrum, they tested for UTI. Negative. No elevated temperature or signs of other infection.

He had a contusion on his side from a fall. It turned out to be abscessed. After debridement surgery, his dementia fizzled out over one week. Our original dad's thinking has returned.

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It sounds like the OP has a handle on what is going on. I can't recommend considering an anti-psychotic strongly enough. It can be a small dose. Zyprexa helped my mother quite a bit. But beware of drug reactions. A few doses of Namenda turned my mother's paranoia up to 11. Turns out she was allergic. You'll want to watch them carefully once you start a new medication. Also no one has mentioned Celexa but that worked well to at least somewhat even out my mother's moods. As far as getting them into a geri-psych facility is concerned, I happened to mention to the psych nurse that my brother felt he had to hide the knives in the house and off my mother went, in an ambulance. If you feel they are a danger to themselves or others speak up.

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My Mom is on Zyprexa as well and it helped tremendously! Such a horrible disease. My prayers are with you.

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How do you handle terrible hallucinations and delusions?

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