I think to myself every night. Stay calm. Don't resist. Don't correct. Go along with it. But how do you do it, night after night without going crazy.
My dad is 94 and in good health physically, but mentally he is not doing as well. He is diagnosed with dementia. For the past few years he has had auditory hallucinations of people out to get him. Much worse lately. We sit in front of the television at night, and most times it has to be turned off, so he can hear what "they" are saying better, and he will go on and on for about two hours about what they are saying. When he asks me something, and I answer him, he gets upset because then immediately the "people" outside have heard us and they know what we're talking about. Tonight he went checking for wiring because "they" can hear us and can see us.
He was in hospital for a week after going off to find the woman who was calling him one morning. Since then they started him on 2.5mg Olanzapine daily. I was using it before, but only on an "as needed" basis, but as this was becoming more frequent, I had contacted Aged Mental Health (Australia) for help about this, but then he did the wander and ended up in hospital. The decision to use Olanzapine is against his Dr's wishes as she is concerned it could cause a stroke or heart attack. In hospital we discussed this but decided his quality of life was more important. He had been so scared he was barricading himself in rooms, or I had stoped him another night hiding in the garage.
So how do you not go raving mad coping with it night after night after night.
He's just gone to bed, but I'm waiting, as the usual pattern the last few nights has been that he gets back up again because he's scared of what they are saying. They are going to break the windows and come in and kill him.
I have no support really. If I'm really ready to lose it, I call a nephew to come over, but he's not always available. There is a meeting with aged care mental health this week and I'm hoping they can help me to cope better with dad.
So, how do you not go crazy yourselves?
Val.
My dad went through something similar although not to the extent your dad is going through. But it was horrible to watch, heartbreaking, and exhausting. We know there's nothing to be afraid of but what your dad is going through and what my dad went through is very real to them. I used to imagine what it would be like to know that there are people in the shadows who are out to kill me but no one will believe me. It's the stuff nightmares are made of.
The one sure way to keep from going crazy yourself is to get some distance from your dad. Get away for a day or two or three. Is there anyone who can step in and relieve you for a little while? You mentioned a nephew. Is he able to stay with your dad for a few days? If not, my suggestion would be to take your dad to the hospital the next time he begins hallucinating. Tell the nurse that you need a break, you have to have a break. Tell the Dr. Ask for a social worker and tell the social worker. Get them to admit your dad for a few days so you can rest. Don't take no for an answer. I did this with both of my parents and I was able to get a few days off. Tell the hospital that your dad isn't safe at home when he's hallucinating and you would like him stabilized before he comes home again.
Val, you need a break. That's how you don't go crazy.
https://www.agingcare.com/articles/hallucinations-delusions-and-paranoia-151513.htm
Now that he is using it correctly he is only partially better? Has he been on it long enough (12 weeks) to see it's full benefit? I have no personal experience with paranoid delusions, but many others on the site have mentioned the need to find a competent geriatric psychiatrist who is willing to add and subtract medications until the best drug or combination is found, it doesn't sound as though you have that. The poor man is living in terror and your life is h*!! as well, in my opinion rather than learning acceptance you need to push harder for a solution.
I had come across this site some time ago when I started googling delusions and hallucinations in elderly and really grateful to find real people dealing with this.That's why I decided to join.
The Olanzapine was originally prescribed by a GP in a medical centre after witnessing dad in an episode. The dose was actually raised to 5mg (2.5mg BID) after dad's GP discussed it with a geriatrician. It did work then and dad did much better. He ended up with an infection and went to hospital and the geriatrician then changed the dosage to "as needed". I really can't remember why, it may have been due to heart risk.
I'm a bit worried that we're only using 2.5mg this time though. He only started taking it daily 2 weeks ago, so this is still early days. It's just that this has been going on for years and I guess I'm just tired.
We are seeing a geriatric psychiatrist tomorrow and I'll go over drugs with him. I've spoken to him on the phone a few times and he sounds lovely but I'm very nervous about tomorrow and that it will make things worse. I'm a worrier on a good day.
Again, thank you very much for your responses.
I understand that people want to tell you that these experiences are not real, but it honestly doesn't help. What happens for me is that I have to deal with my hallucination and try to get people to understand the danger, because at the time the hallucination is more real than other people's reality. Sorry I can't be more helpful in a solution.
Just trying to understand. You mentioned you have to deal with your hallucination so do u realize afterwards that it was not reality and was a hullicination? I am trying to learn what to say and do with my mom. She has had auditory and visual hallucinations She is now in the nursing home. She's 72. I wanted her to live with me or in an apt 2 min away. That didn't happen She had turned on me. Jumped at me. Accused me of tazeing her all night long. She seems to not love me anymore. She was my mom 1 hour and looked at me with hate another. She screamed at me not to call her again when I called to check in her at the nursing home I never know how she is going to react with anything I say or do. It's like I'm afraid to call her and go see her She used to turn her tv around where the back would face her. Also she covered her mirrors with a blanket. Used to think people on her roof. People stealing from her. She didn't share with me everything she went through when she was living in her own. It must be living a nightmare when you're in that state. Always thinking people are out to get you. She takes saraquill.
I am so sorry for your situation, I experienced similar last year with my BIL, I know this may sound daft but have you checked for UTI? This was the cause of my BIL's behaviour.
Ok, to answer your question I have Dementia with Lewy Bodies, 95% of the time I can accept after my delusion has passed that that is what it was. Though while I was living it, nothing could convince me it wasn't real. One of my worst delusions is burning flesh (I was tortured as a child by my parents) and nothing at all will convince me that I am not on fire. People have to wrap me in blankets/coats to put out the fire and even after that I'll smell singed flesh for 2-60 mins. During that time this is 100% real for me. Afterward I can see that I'm not burnt, but it's still hard to shake the feeling. Some hallucinations I know are just that even at the time, though I've had to learn this. Elephants putting donuts in people's pockets during important meetings, a Roman soldier glaring at me in my pottery class, a little girl doing acrobatics on shelves of pottery. Others are harder, notices of sexually transmitted diseases around the necks of little old ladies, nuns, tiny children. Every time I open my front door I have to talk myself through the fact that the birds are not Secret Agents who will carry my location to people who will hurt me.
I would try to be positive about visiting your Mum, I know it's hard but she is locked away somewhere in the stranger you see. If she's ok enjoy your visit, if not leave straight away and do something you enjoy while remembering good times with her. This will help You not to always view visits with fear. Lucy
Gonna take her to a neuro guy and see what they can give her. She is very against medications and it is a daily struggle to get her to take her bp medicines and antibiotic. Even the nurses in the hospital had to give up one day.
You are a captive audience. When he hallucinates, to be frank, he's not talking to you--just talking. When my mother talked, she didn't even remember my name.
It's obvious your nephew doesn't want to help,for whatever reason. Don't ask him again. That's just irritating and frustrating for you. I'm not familiar with health care in Australia, but you need in-home help, even for just a few hours a day. The internet can help you research what's out there and available in your country. Until your Dad passes away, there will be no break for you. I'm am sorry to say that when I think about my mom now, front and center is the way she acted in the nursing home and that's not good. Get some help, any help for yourself as soon as you can. Hugs!
There was negligence in Personal Care in administering her eye drops, Mother was in end stage of Glaucoma, classic Charles Bonnet Syndrom. Her eye Dr. took images for two years before and for the six months after she was forced to give up her Independent Living Apartment to stay in Personal Care by the Facility and two absent family members when I was her POA and Caretaker. Neither Mother or myself wanted her to be moved to P.C. We heard it was a hellhole. Her eye Dr. did not want to stand up for her. He did not want to oppose the Facility. We went to a Glaucoma Specialist from a prestigious Medical Center who advised the facility that Mother needed an intervention with me giving Mother her eyedrops to try to stabilize her eyes. They cut my hours even more so that I would not be there to check on the administration of her eyedrops. About 2 or 3 months into Personal Care, I saw a Nurse in PC giving her Latanoprost in the morning. That was wrong. She was to get AZOPT. in the am. The Nurse coarsely told me to get a note from the Dr. I asked her for a printout of her meds. That Nurse was conversely giving Mother AZOPT the 5 nights a week when she worked night shift and no Latanoprost a full 5 minutes before the AZOPT.
In addition, her visual hallucination of a man's hand coming out of the closet led us to finding out that she was being sexually harassed by the maintenance man.
Her hallucinations were due to negligence at the facility. We moved Mother to another facility where she grown stronger and her eyes while damaged are stabilized and the Specialist is watching her carefully. If need be she can have a Laser Procedure.
I remember not long ago posting a photo of my dad online. He looks incredible for his age. A very good friend of mine said to me "It's all in your head, look at him, he's incredible for his age". That was the very first time I understood a bit of what it was like my telling him time after time that there's nobody there, it's just his ears not working properly. I was devastated by her words and yet I'd been saying the same thing to dad for some time.
My fuses are just so short nowadays. Nobody comes to the house anymore. There is one lady helping to walk my dog. She has been amazing. This morning dad was telling me he thinks she's involved too.
Val.
I have a carer who comes from 11am until 2pm. I get home from work at 2.30 on the 3 days I work. He's my Angel, and dad loves him. That had been sufficient as dad's issues were always in the afternoon or evening. Since dad getting out of hospital though, I've now found another carer who speaks Italian (which is important, as dad loses his English when stressed) for the mornings 7am until 10am. I do have dad's power of attorney and am using his funds to pay for this as Government would only have been able to supply 2 hours a fortnight because he is so physically able in himself.
Hopefully I'll be able to go back to work this Friday. I'm incredibly lucky to have a boss who allows me to do this. I know my weird hours put a real strain on the office as it's only a tiny place.
Again, a real special thanks to LucyCW for your replies.
Val.
I know it sounds crazy. I know. But we were also at our wit's end and it has been a marked improvement which is unusual in this disease. My dad is 90 years old in January and is the late stages of the disease.
The doctor labels it "distraction" but I think the music and resonance of the voice as well as the sensory touch and comfort of touch, has an impact on his brain.
He is much, much better. Sleep and some hours of quiet for my mother were essential!
I'm so glad that what I wrote was able to help. I don't know how long I'll be able to keep a foot in both camps and be aware of what's happening but for as long as I can I'll do what I can.
What I can say for people who are living in their own worlds without distress, there really is not a problem to the person who is not of this world. The problem is when you do get moments of "lucidity" and awareness that you have not been acting "normally." For those who are distressed, I found with my BIL last summer that if I joined his delusion I could often minimise the problem. For example he was sure there was a starving kitten under his hospital bed. I would get out of my wheelchair and bend as low as possible "I can see kitty, oh dear it is very scared. I think if we don't both look at it, it won't be so frightened so if you close your eyes I'll get it. (he'd close his eyes) come on kitty, no one's going to hurt you. This lovely nurse is going to take you somewhere quiet to eat and I'll take you home with me when I go." This totally calmed him when he opened his eyes we'd name the kitty and it would be forgotten until next time. The slugs that climbed the walls and curtains around beds on the ward I simply sprayed (invisible liquid just made a hissing noise) and swept up the bodies before throwing them in the bin. Same result, he calmed. If we tried to rationalise what he saw. or deny it he would get increasingly distressed and be that way for ages.
What we experience during our delusion is every bit as real for us as the reality of those around us. Their reality to us is a delusion.
Wishing you all well whatever your reality.
The geropsychiatrist came to the house today with the Mental Health Nurse we had previously met. He was lovely. I have such respect for those who choose a career to help the elderly. Dad's medication will now be increased to 2.5mg Zyprexa twice a day now, so double the current dose. I had used the extra dose a few nights in the last week as he was very distressed. The psychiatrist said I had done the right thing and not to feel guilty about using the drug to help. The GP had me very nervous about using the drug, but the psychiatrist has assured me this is one of the safest drugs to use. Of course there is a risk, but dad was (currently is again) living in terror and the risk is really not great.
Tonight was a bad night, but I feel more hopeful knowing I have these people helping me. Hopefully, once the UTI has been killed off, and the effect of the antibiotics wear off, there will be some improvement again.
Val
Moments of Sheer Terror: When People with Dementia Act on Delusional Beliefs
Colleen Millikin, Ph.D., C.Psych.
Department of Clinical Health Psychology
Faculty of Medicine, University of Manitoba
Delusional beliefs (delusions) are:
• false beliefs that are resistant to logic
• associated with strong emotions (fear, anger) that prompt the person to act on the beliefs
Delusions occur in:
• psychotic illnesses (schizophrenia, bipolar disorder)
• delirium (e.g., metabolic imbalance)
• dementia
Causes of Delusions
Mechanisms involved in delusions are not well understood
Theories involve:
• attempt by people with dementia to understand their environment
• related to mood changes
• caused by factors unrelated to dementia process
• directly caused by underlying brain damage
More theories:
• dysfunction in specific brain areas (greater asymmetry in brain atrophy)
• right hemisphere dysfunction
• neurotransmitter disturbances
• imbalance between intact attention and impaired memory/semantic processing ability
Not all people with dementia develop delusions but many do - difficult to predict who will/won’t develop delusions
Delusions and Dementia
30-40% percent of people with Alzheimer’s disease develop delusions at some point in the disease process (reported incidence rates in studies range from 10% to 73%)
Delusions common in Parkinson’s disease, vascular dementia, and Lewy Body Disease (70% of people with LBD have complex visual hallucinations and/or paranoid delusions)
Risk factors for development of delusions (not consistently found in all studies):
• older age
• female gender
• less education
• African-American race
Risk factors for development of delusions (more consistent evidence):
• more severe cognitive impairment (especially frontal and temporal lobe dysfunction)
• more common during moderate stage (compared to very mild or very severe dementia)
Other risk factors:
• delirium (medications, infections (UTI, pneumonia), low sodium, etc.)
• sensory impairment
• basal ganglia infarct (often sudden onset)
Common Delusions in Dementia
• Delusion that people are stealing or hiding things, most common, 22%
• Phantom boarder - belief that other people are living in the home, 20%
• Persecution/endangerment - others are “out to get me” or food is being poisoned, 17%
• Delusion of infidelity, 5% - related to memory impairment and fear of abandonment
• One’s house is not one’s home, 5% - related to inability to recognize objects/people
• Delusions that events on TV are happening in real life, 5%
• Believing that their mirror image is someone else, 5%
• Delusions of infestation - they or their home are infested by spiders, ants, lice, etc., 5%
• Belief that caregiver will abandon them or put them in a nursing home, 4%
• Capgras syndrome - belief that a familiar person has been replaced by an imposter, 3%
• Delusions of love - belief that a famous person is secretly in love with them, 1%
Common Delusions in Dementia: Behaviors
• Delusions of theft can lead to people hiding things, wearing several layers of clothing
• Delusions of persecution can lead to people barricading themselves in their rooms
• One’s house is not one’s home may leave home in search of “home”
• Delusions of infidelity can lead to aggression toward spouse
• Delusions of poisoning can lead to refusal of food and/or medication
In persons with dementia, delusional behaviour may be reliving of past experiences
Brain can’t form new memories, so it recycles old ones
Often triggered by events in the environment (e.g., time of day, activities, food)
Particularly challenging if person has a history of trauma (child abuse, war experiences, etc.)
Nonpharmacological Approaches
If delusion is not distressing to person with dementia, may not need intervention
If person is low risk to self or others, nonpharmacological approaches should be tried first
• remain calm
• distraction (e.g., discussion of other topics)
• frequent scheduled activities
• one to one attention
• remove clutter from the environment (theft)
• periodic separation from person who is the target of suspicions (e.g., spouse)
General approaches
• improve clarity of communication with person (reduce chance of misinterpretation)
• offer reassurance when person is confused
• assess possibility of depression (in some cases, delusions can improve with antidepressant medication)
• conversation about the feelings behind the false beliefs
Paranoid delusions
• be honest and keep any promises you make
• explain any procedures before doing them so person knows what to expect
• try to keep daily routine as consistent as possible
• avoid talking or laughing where person might see you but not hear what is said
• do not take person’s suspicions personally
• do not agree with person that you did something you did not do
DO NOT ARGUE with person (state once that you did not do what you are accused of and do not talk about matter any further for at least an hour)
• if food is an issue, serve food and drink directly in front of person - let person choose food from a tray of items that are all the same
• if person is particularly suspicious of one caregiver, avoid having that person provide care if possible
• have one caregiver listen to person for a brief time each day and validate person’s feelings
“I know you believe this is true, but it is not real. Sometimes people’s minds play tricks on them. It must be very frightening to believe that. No one is going to hurt you here.”
• provide reassurance
• recognize that you cannot talk person out of belief
• belief is real to the person
Examples
“This is not my house”:
“I guess it doesn’t look familiar, but this is your house.” (Then change the subject.)
• help person focus on familiar detail that does not rely on visual identification
• respond to feeling (“I know you want to go home.”)
“Someone stole my watch.”
“I’ll help you look for it.”
• have duplicates of important items
“You are not my husband”:
• reassure person (“I am your husband.”) but avoid arguing
• try distracting person with familiar activity
“My mother is coming for me.”
• respond to feeling of loss person may be expressing (“Tell me about your mother.”)
• do not contradict person or play along with delusional belief
Pharmacological Approaches
May be necessary in delusional disorder, especially if past history of psychosis that responded to medication
Antipsychotic medication usually does not take delusions away, but person cares about them less so is less likely to act on them