Follow
Share

I just moved my mom out of her AL to a group home with six residents. The move was made because my mom was falling frequently and the AL was not staffed to keep an eye on her at all times. The new group home is 3 minutes from our house, spotlessly clean every time I've been there, and all of the residents appear clean, content and well cared for. The owner and her staff are kind and compassionate and seem to be truly invested in the residents and their well-being. An added benefit is that her cherished little dog can once again live with her. The home was recommended to us by our nextdoor neighbors who had their mother there for several years.
The first couple of days seemed to go well, but the last week and 1/2 has been hellish. My mom started insisting that the staff was abusive, dragging residents around by the hair, fighting with each other and showing her containers of cocaine. She became hyper-vigilant with her tiny lapdog who never leaves her side. She insisted it need to have a leash on literally all the time and acted as if someone was going to steal or hurt the dog. When her sisters were here to visit this weekend she refused to go home, became belligerent and was calling anyone and everyone horrible names etc. Ultimately we had to call EMS and she was removed from our house in restraints. She told the EMS crew that we had her living in a crackhouse. It was unbelievably awful. Thankfully the EMS guys were fantastic. Compassionate, gentle and patient. The hospital did a full medical work-up and pysch eval and determined that it was dementia related and nothing else. They did prescribe seroquel, but so far she has only had one dose and is refusing to take any more. Tonight she escaped the house when the overnight caretaker thought she was asleep in bed. This is the first time she has done something like this ever, and the operator of the home indicated they will have eyes on her all the time now.
This is a long story to get to my question. My mom has never been happy anywhere she has lived, including in her own home. She simply doesn't want to be old, and is in denial about her dementia diagnosis, but these wild and detailed stories are a new development. I really feel like they are delusions or hallucinations, but can something like that carry on for days and weeks at a time and take on a life of its own? She has created a whole story line around the abuses at this group home, but I can find no evidence that they are true. The staff would need to be doing a phenomenal acting job if it's really as Jekyll and Hyde as my mom portrays. However, it's hard to not worry that there is some truth to any of it. Anyone with similar experiences out there who can provide some advice?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Their brains are broken. They have thoughts that connect in bizarre ways. My mother-in-law has end stage parkinsons and is on hospice. She will tell you that she walks about the facility and the trips she takes with famous friends. Check into confabulation. It is real to them. Also have her checked for urinary tract infection, those can cause delusions or delirium
Helpful Answer (7)
Report

Thank you. She has been checked for UTI, medication interactions and had an MRI. I'm thinking the big change of the move caused something to snap, but who knows for certain? This is a wild ride for sure.
Helpful Answer (6)
Report

I have been thrown into a family members delusional world view for almost a month now. My family member is in his 30's.

This is part of what I have learnt. Long term psychosis causes permanent brain damage, the long the psychotic state the greater the damage. My son has been hospitalized for 2 full weeks and is no closer to reality than when he got there, even under the care of a psychiatrist and on medication.

I know this is not what you want to hear. But coupled with the damage that leads to dementia, until your Mum is on the right medication, she may remain in psychosis.

You say she is generally not a happy person, but perhaps it is also time for her to stay in her new home and not be brought out for visits, or she may have to move into a secure unit where unfortunately she will not be allowed her dog.

We are dealing with a dog too.

It is heart breaking, it is exhausting, it is scary. My heart goes out to you. Make sure you take care of yourself. I had to have a tooth pulled yesterday, I had been clenching my jaw and grinding my teeth so much at night that I cracked it right down the middle.
Helpful Answer (11)
Report
SnoopyLove May 2021
So sorry to hear this, Tothill
(3)
Report
See 1 more reply
With dementia, any traumatic situation can cause a change from which they may recover, but in my mom's case, she never does.

When my dad -- her rock -- was diagnosed with inoperable cancer, she started talking about her first high school boyfriend, a guy she'd never mentioned before. I had to move her to a nursing home a few days after my dad's funeral, and suddenly the old boyfriend was "visiting." Four months after my dad's death he was completely forgotten, and Mom and the boyfriend were "married." This has been going on for 2 1/2 years now, and she carries on both sides of conversations with Dan the Invisible Man. (In reality, the last time she saw this guy was in 1944, and he's been dead since 2009.)

Fortunately, my mom isn't hysterical or psychotic as it sounds like you're dealing with, but her fears and disorientation at moving seem to have morphed into living at a crack house. I'm so sorry.

I would suggest not bringing her home for visits and having her stay at the home so she can become more acclimated to her new surroundings. Visit her there, and if she wants to go home, tell her repeatedly that she is home.
Helpful Answer (10)
Report

It sounds as though your Mom is deteriorating and her condition worsening. You have already had the workup I would recommend, and it may take a bit of time to tell if her new medication will work or if she requires something "other" of something "more". Drug cocktails can work but they are difficult. There's a difference between delusions (wrong beliefs) and hallucinations (actually experiencing a screnario that isn't happening). The former can be permanent tendency and the latter more a visitation of something that can pass. But the docs will work on the medications. Sadly the Mom may not get better. Sometimes meds that help with mentation tend to make seniors less steady on already compromised mobility, and falls increase. Sometimes the only answer is increased care such as memory care, but that of course means sometimes a doubling in cost, and certainly less good living circumstances. I am so sorry you are going through this. Each situation, each sufferer is as unique as his or her own thumbprint. There really is no one answer and even doctors struggle to know what is going on.
I am assuming a UTI is ruled out as urinary tract infections can have profound affects on mentation, esp something to consider if this is a sudden change.
Helpful Answer (9)
Report

My mom, in MC, has been saying for 6 months that she does not get called to, taken to, or provided with meals.

This is simply not true. I have come in when she is at meal time. I have been sent other pictures of her eating at meal times.

She is in a beautiful setting, with caring people. I trust them.

Sigh. It's all so hard.
Helpful Answer (6)
Report
CathyS May 2021
Yes, it is.
(1)
Report
It is so hard to watch our loved one suffer, especially as extreme as it sounds in your mother.

I agree it may be time not to take mom away from her new home. My father used to assist at church services at the nursing home grandma (his MIL) lived in, There was one time Mom and I visited her later that Sunday and she was all upset and rather angry - I HAD NEVER, EVER, seen this woman upset and angry (and I was an adult when this occurred). When we asked what was wrong she said dad asked if he could take her to dinner after church and wheeled her to the dining room and parked her at her seat and told her he'd see her next week. Well either she thought he was staying and eating with her or taking her out for a meal - she actually called dad a "worm" . While mom and I were sorry for her distress - and we were, but even now it makes me laugh to the point of tears - this sweet woman who never called people names. Of course when Dad heard about it he felt horrible. (I haven't thought of this story for literally decades - who knows what brought it up now.)

I also seem to remember that the nursing home had a rash of pregnancies of several elderly women - it was like a group delusion.

There was another time dad brought grandma home on after services for dinner - she was very agitated about being away from the nursing home. Nothing calmed her and dad had to load her back into the care and take her back to the facility. It was the last time she was ever taken off the grounds.

ICU stays were a problematic area for her during the nightime hours to the point that either my mom, my aunt or my dad would spend the night in the ICU waiting room - much to the amusement of the ICU staff (after all who can't handle a sweet little old woman) - until Grandma went off the rails and one of the nurses would go an retrieve whoever was there - they were the only ones who could calm her down to the point she went back to sleep. Once out of ICU she was fine.

I don't know if the above stories have any real point, but for some reason your troubles and maybe someone else's post brought up these memories.

I believe routine at this point is going to be an important factor in your mother's care and that is no guarantee against delusions and/or hallucinations.

I hope your mom's Docs can find a cocktail of drugs that help calm her down. Maybe there is an as yet undetected infection swimming through your mom's body. I'm so sorry she hasn't been happy living anywhere and the denial of aging - I believe fear also has a bearing on how those in the throes of dementia behave.

My prayers are with your mom, you and your family.
Helpful Answer (4)
Report
CathyS May 2021
I enjoyed reading your story. I got to laugh a little. My story isn't funny yet. Some of it will be someday. I look forward to that even with the sorrow that will surround it.
(2)
Report
See 2 more replies
Roxi, one thought. Is there a dedicated inpatient psychiatric unit or senior behavioral hralth unit in the area?

Sometimes psych meds take some time to tweak and geriatric psychiatry teams are the best folks to do that.
Helpful Answer (3)
Report
roxynicole1 May 2021
Thank you for your response. We do have a geriatric psych unit in mind if the current dosage of seroquel doesn't help bring things back to a more stable state. The group home and her dr. are on board to move that direction if necessary. It's clear from our experience with the hospital this weekend that beds and psychiatric support are few and far between. I feel for anyone dealing with psychiatric challenges right now.
(3)
Report
It seems so real when she tells you these stories because they are real to her. You know when your mom is telling you the truth as she believes it.
It is her reality so it seems like it must be true. She must work with her meds to regain some peace in her life. Thankfully she is where she will be monitored and has you to help her see the right doctors.
Helpful Answer (3)
Report

Yes, delusions can go on seemingly forever. Some of my mom's dementia related beliefs are now permenant to her. It will not get better. Just know that. I wade through all of that and just work at having whatever positive relationship I can with her. It changes constantly. I remind myself often that she doesn't know reality much anymore and that helps me deal with it. And I only have a Financial POA to help her pay bills, etc. So I have little say so with medical decisions. If you can still get a POA and want to be that involved, I would advise doing it as soon as possible. I can't do that for medical now because of my mom's diagnosis. And no one will tell me what that is because I don't have POA rights for it. I know her medicine changes because I pay the pharmacy bill. She was recently put on Haldol for hallucinations and delusions. This tells me that I am right about her level of dementia. Just know that you are not alone in this. We are all experiencing what it is like aging in our society.
Helpful Answer (6)
Report
roxynicole1 May 2021
Thank you! It is so helpful to know the length and power these delusions can potentially take on. I do have guardianship and conservatorship, so I am the decision maker on all counts. Knowing what I am dealing with will help me feel more secure in my choices.
I am sorry for the situation with your mom. It must be so hard to have to piece everything together from the outside looking in.
(2)
Report
In my experience, the delusions may never go away. My Mom went into Memory Care last December when she had delusions and was diagnosed with Alzheimer's. The delusions have continued and deepened in their detail, very similar to what your Mom is saying. I think it is my Mom's confused way of making sense of where she is and how she misses her old life.
The staff at her home is very responsive to her needs and concerns and to me, and we keep reassuring her and redirecting her to more positive thoughts. I do explain that her condition is affecting her health and outlook, and sometimes that helps.
My Mom isn't happy, even though her Memory Care unit is lovely and the best in the area. But she's always been critical of everyone and everything, even when she was well.
I've been told that "safe trumps happy," here at Agingcare.com and it is sad but so true. I wish everyone who faces this with their loved ones the best. It takes a long time to accept what's happening and to make the best of the situation.
Helpful Answer (7)
Report
roxynicole1 May 2021
Thank you. Safe trumps happy may need to become my new mantra.
(4)
Report
I’m slower than everyone else here, my instinct was get her out! Lol I’m learning.
We have spent the last year trying to chase every lead, find answers to all the things going on with my mom. She’s fallen again and now I understand simply she can not be in AL, though she insists. I’m still getting her permission like a dope for every decision.. Then in a care meeting for new place they mention she’s bipolar and her mental illness? Meds not being taken for it, been diagnosed several years? What? Later I found medication in a zip lock she wasn’t taking but “saving for when she needed it”!

I do not envy anyone on this site except the ones past this nightmare. Truly you start to doubt your own sanity.
Helpful Answer (7)
Report
Aunt Angie May 2021
Hello,
I wanted to bring it to your attention I posted a response to your concerns.
it is listed as Aunt Angie. Hope it helps
(1)
Report
I am so sorry to hear you are experiencing such a difficult time with your mom. I took care of my husbands aunt for four years. She would wave in and out of episodes like you are describing. I remember just crying with her in my frustration. Only to realize she had a UTI. I know this isn’t always the answer but for her it was... the angry, belligerent behavior became my signs to know it was time for antibiotics. It was difficult to get her to take them when she was out of it too. I did find an herbal tea that kept the UTI’s under control... as long as I didn’t run out. ( which I did multiple times) again symptoms would return and once I got her back on the tea she would get calmer and the strange symptoms would lessen and often subside. The key was not to run out of the tea! I would serve it warm with honey and cream and as iced tea. ( I don’t believe sugar is good for UTI’s)

Again I know this may not be your moms issue but it is worth $20.00 to try it. I am going to look up the website for the tea and post it in a minute.

I pray this is helpful for you and your mom. It was an answer to my prayer!

If this isn’t helpful, I pray that someone would near you would be able to help with a permanent solution.
Blessings!
Helpful Answer (1)
Report

My husband, who is 67, has been diagnosed with Parkinson’s dementia and depression with psychosis. His delusions involve a cartel which I am sometimes part of and other times I’m the victim of. He’s called the police because he thought the cartel was breaking into the house. But then he accuses me of hiding money in the house for the cartel. He also has a whole host of delusions about his body, imagining that he can’t process food correctly and so he stinks very badly. So he doesn’t interact with anyone at his senior residence, takes all his meals in his room. We have upped his Seroquel, but that hasn’t changed anything. When I look back on it, I think the roots of these delusions go back several years. And without being too pessimistic, I don’t have much hope that they’re going away. What I’ve done, and perhaps what you should look into, is join a NAMI group for support and now I’m taking their 8 week (free) course. It has helped me understand how to deal with somebody with delusions. I’ve stopped arguing, I’ve stopped trying to prove that his delusions aren’t true, I’ve stopped telling him he’s delusional. It’s hard, but I’m slowly learning some tools for how to deal with this.
Helpful Answer (5)
Report
roxynicole1 May 2021
Thank you. This is helpful to hear, but I am so sorry for all you are dealing with.
(2)
Report
See 1 more reply
Search Dr. Schultzes Kidney Bladder tea.
there is a website you can purchase just the tea or a whole cleanse. I tried the whole cleanse and found the tea worked fine on its own.
Helpful Answer (0)
Report

Moves are stressful to people with dementia. Feelings of anxiety and illusions are not uncommon when people have dementia. Illusions can last for a long time. But with dementia, things can also change from day to day and her condition may continue to decline. Don't think of her as being "in denial" and understand that some people don't know that they have dementia, they are not able to think logically about themselves or how to care for themselves. Talk to her doctor and discuss what has been happening and the medications that were prescribed. Finding the right medications to calm her can be a trial and error process. Some may not work well, some may have bad side effects. Also talk to the staff at the place where she is staying about how to get her to take the medications that have been prescribed for her anxiety and ask them if the medications seem to be working. The staff may have ways to disguise medications in food, etc. Speak with her case manager at the place where she is staying to find out if they have other ideas about how to get her to calm down and get adjusted to the new place. Visit her as often as you can and at different times of day if you can, so that you can observe more about how they are handling her. If her place allows you to visit without an appointment, and if you can go into her room when you arrive, this is the best way to observe. It might be better not to bring her to your house or even take her out of the facility untill she is in a calmer state of mind, if she gets stressed about changing locations. Check her facility's ratings and if the ratings are consistently good and if what you are observing seems good, you may want to give them the benefit of the doubt.
Helpful Answer (2)
Report

I find usually there is some truth mixed in with their stories.

No place is perfect, clean yes, but no one knows what goes on behind closed doors.

The only way you can get a glimpse is to have a camera installed in her room if she has a private room and watch and see for yourself.

Also, make sure you have her checked out for a UTI Urinary Tract Infections which can cause Big Time and cussing and name calling.

When my Dad gets a UTI, he starts with non stop talking, eating less, then starts hallucinations then Hellish Hallucinations with seeing all kinds of people in the room and then thinking everyone is trying to kill him and won't eat or drink saying we're just trying to trick him and Poison him.

Went through this more than once and it was very scary.

Once his Non Stop talking starts, I'll have his Urine checked for an Infection " UTI " and the Dr starts him on Antibiotics and within 3 days you can tell he's getting back to being his normal.

He takes the Antibiotics for 3-7 days depending on the Antibiotic and the Infection he has.

Deventually is sad for all.

Prayers
Helpful Answer (1)
Report
sp19690 May 2021
You really think there is truth to this woman's mothers stories? Which part seems believable to you ?
(3)
Report
As others stated hallucinations, delusions are a part of AD and Seroquel helped my dad tremendously, he was seeing spiders all over his bed, the walls the ceiling, on the hallways, in his food and on people. He completely destroyed his mattress removing the material trying to get rid of them.

The wild stories to my dad are real and there is no dissuading him; I learned just to go along as to avoid stress on both of us. I explained this to the family members who calls or visits him and now we just enjoy the ride. :-)
Helpful Answer (3)
Report

My mom lived with us when she developed Alzheimer's. She had hallucinations, illusions and delusions. Some people with Alzheimer's feel that the CIA is after them. My mom thought she worked for them! Since she lived with us, I knew there was no abuse going on; it's a more difficult situation to verify when they're not with you. Does her group home allow cameras in their rooms? It's stressful, I know. I even wrote a book about Hubby and I taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." When she had illusions, I had to remind myself that "ill"usion was the right word, since Alzheimer's is an illness, but it was very hard to deal with. As others have mentioned, sometimes other things, like UIT's, can cause symptoms to worsen. Maybe she needs a complete work-up with an internist and a neurologist and/or a geriatric psychiatrist. You might want to email the docs before hand and mention any concerns, since it's often hard to do that right in front of your mom. It's often hard to find the right combo of treatment: medicine, psycho-social intervention, etc. Best of luck.
Helpful Answer (1)
Report

My mom had horrible stories about people, places and she was always the victim. This was unusual and became so bad that when she had a aggressive interaction at church, 911 was called and she was baker Act’d (FLORIDA). They stabilized her with giving her her normal medications which she was not taking correctly or at all (hypothyroid pill -not at all). They put her on Zyprexa (10 mg) and in a week she was herself except she still remembered her stories and they were now her new facts. We took her home and she was put on 5 mg Zyprexa (or Olanzapine is another name) and she did well. Since this was an unusual incident, the doctor decided to wean her off Zyprexa.....in 4 weeks the symptoms came back and we were afraid of her. I called the doctor and she is on it again, it took about a week to really get her settled. She was in agony with night terrors and fears and anxious thoughts. She is in assisted living and I put a blink camera in it (I turned off the blue LED so she doesn’t know when I check on her). Mom still has stories (mostly when she is tired or in the evening) but they are not ugly stories; just more of her filling in the blanks of what she did during the day. She thinks the miniBlink camera is a speaker so that is working for me and her. She is in denial of her dementia but I just let her struggle for words and when she does, I say, “that is okay mom, this is who you are now. Remember God Loves you and you are in a safe place.” I have also said, the doctor said that this is a symptom of dementia but it is okay, you are loved and safe.” Since I let mom struggle with finding words, it seems to resonate with her(at least at this time.).
Helpful Answer (2)
Report

I have not read through all of these but check for UTI since it came on suddenly
Helpful Answer (0)
Report

For the last your and a half of my dad‘s life (he passed away last April) he was in several facilities ranging from skilled nursing to type A and type B assisted living. Though I never suspected any abuse, nor did he complain of any, I was aware of the need to be vigilant at all times. It is recommended that you make “surprise” late night visits, for example, at various times.

However, my best tool was the use of my Echo Show which offers video calls, including “Drop in” which allows you and others (with permissions set up) to connect via phone and see and, if desired, talk to the person at the other end. Our whole family (all of whom live far away except for me) would video call my dad and be able to see him and he see them. It was a wonderful way for the family to communicate with him.

The other way I used this, however, and as his condition and awareness deteriorated, was to just “drop in” without showing video of myself and be able to observe my dad and interactions with the staff. This did allow me, on several occasions, to notice things that needed to be attended to and call the front desk to have the staff send someone to my dad’s room.

I should add that I had checked into the rule at most facilities that requires signage that there is a video camera in use in a resident’s room, but determined that this device does not meet that criterion because its purpose is for video calls, and there is a tone that sounds when the call first connects. (However, when I didn’t share video of myself, the screen on the device in my dad’s room would remain dark, as though not in use, and I would often just keep it on for a couple of hours to observe his status and care.)

Good luck! Especially with her having wandered away from the facility once, you’re lucky that they have not required you to provide her with an overnight (or 24 hour) sitter.
Helpful Answer (4)
Report

Best way to approach this is to consider her delusions as "awake nightmares." They are not reality but she experiences these "thoughts" as reality. Ask her doctor for a geriatric psychiatrist referral. The psychiatrist might be able to recommend therapy or medication to help her and everybody else cope with her delusions.
Helpful Answer (1)
Report

Hello. There is an easy-to-read article in psychologytoday.com about anosognosia that you might find interesting.

it seems to me that it must be a very common condition but I'd never heard about it before and have thought it might be good to share it with other people who might not have either.

best wishes to you.
Helpful Answer (1)
Report

From my experience of taking care of my First husband , who was schizo affective disorder, a delusion can last for a lifetime, or it can be temporary if properly medicated to bring the patient’s mind back to reality. The same goes for hallucinations. The thing to remember is the patient believes it to be true. And they arę in great fear and act out that fear. It’s heartbreaking to see and frightening to deal with, because you don’t know what they’re going to do. Work closely with her doctor and medical team. Hopefully the medicine will work and this crises will pass. If one medication doesn’t work they will try another. I’m sure the staff there is quite used to this. I wish you the best.
Helpful Answer (1)
Report

For what it is worth, my husband has been on two medications at two different times that caused him to hallucinate. We took him off those, and the hallucinations stopped.

Having said that , he had a different mental problem --seemingly unrelated to depression--that went away when he took an anti-depressant.

So, meds, right?
Helpful Answer (0)
Report

You are such a good daughter. Stay strong!
(yes, yea, u can't see it, but we can😊)
Helpful Answer (1)
Report

I do feel your anxiety and distress. As others have pointed out, there may be an underlying medical condition that may take time to sort out. In my mother's case it was too much insulin and not properly taken. Her prescription had not changed as her failing knees gradually forced her into a life of much less physical activity. She went from a water aerobics class 3 X per week and daily walks to sitting in a chair in front of a tv all day because her knees could no longer support her and other conditions made her a poor risk for surgery.

She slipped into a coma several times from taking her insulin when she got up but did not eat breakfast. During that time she kept having the same delusion/hallucination that there were people living upstairs (she lives in a 1 story mobile home). These people would demand that she fix them meals, but then would leave without eating them. This lasted for most of a summer.

Finally we managed to get a doctor to listen to us. We ended up with Mom taking no insulin at all, but with a much more carefully monitored and restricted diet. Or at least as much as we can manage without being there. We finally got a new doctor who reviewed all her medications and reduced some of them and removed others. Her original doctor had insisted that all the medications had proven good when originally prescribed and would not consider that Mom's changing lifestyle required changes. It took several months to get her used to her altered meds and schedules, but she has not had the delusions/hallucinations since her medications were reduced. That was in 2018 and she has done much better since then. That summer, though, was really horrible. I would not want to do that again, nor would I wish it on anyone else. I hope you can manage to get some medical guidance to ease your mother's distress.

In Mom's case the delusions were obviously delusions. Perhaps you could get a granny cam to put in your mom's room that would be pointed at the door and the area near her bed and chair? You could be assured that you could monitor activity concerning her but still leave her some privacy. This may help with your mental health while you get more information on your mother's health and mental issues.
Helpful Answer (6)
Report

First and foremost the dog should not be in her care since she is losing it and could hurt him.
Helpful Answer (1)
Report

My husband has fixed paranoid delusions caused by Frontotemporal Dementia. He is on Olanzapine and Nortriptyline. They help him keep the delusions from tormenting him. He was only correctly diagnosed when a Neurologist ordered a PET scan that shows function. Hopefully this information will be of help to you,
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter