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?
- She was allergic to the live Christmas tree we bought for my parents (this part is real). But it morphed into a world where pollen was everywhere, and it was going to kill her. She threw away masses of clothes and blankets that were “infested with pollen.” The pollen was in the hospital, even, when the anxiety turned into an ER visit.
- The pollen aversion changed into a fear of…static electricity, I think? It was another invisible thing that terrified her. She wouldn’t touch water, she’d cover her entire body and head with a blanket to protect herself.
- Then, worst of all: she started being terrified of my father, her husband of over 60 years. They live in assisted living, and she would call for help, and try to “escape” downstairs. She was very convincing, and the facility had to put my mom into protective custody until everyone figured out it was delusions. In the meantime, she hit my dad with a cane a few times, and would pull his hair “so he would know what it felt like.” Occasionally she was frightened of her ex-husband (who doesn’t exist). We had to have my dad stay with my brother, and hire a caregiver to stay with mom 24/7.
Seroquel and a bit of Sertraline helped to end this horrible cycle, thankfully, and I have my sweet, loving mom back (her memory is terrible still, but her warmth and twinkle in her eyes is just the same). It took at least 3 weeks to kick in, and we had to work with her doctor to find the right dosage.
KNOW THIS, THOUGH: in the US, Seroquel has a black box warning (it can cause sudden death in elderly people, and increase fall risk). Because of this, the pharmacy would try to take her off of the medication every few months, and the whole horrible cycle would start again. Because the facility managed her medications, it took awhile for us to pinpoint that her medication had changed — and it takes 3 awful weeks for the medication to work again. My entire family agrees, after a few cycles of this, we’re all willing to accept the risk of this medication. She’s miserable, otherwise.
We have to remain vigilant, though, and have the facility notify us if anything changes in her medication, and then fight against it. This wasn’t easy during the coronavirus lockdown.
I hope you can find help in a similar solution. She was an entirely different person without the medication. My sweet mom was terrified, angry, suspicious and miserable, but the Seroquel changed everything for our family, and gave us our mom back.
Do you know what kind of dementia you are dealing with? My mother had Lewy Bodies and the delusions and hallucinations were very real to her. Once she got an idea in her head, she embellished. She was convinced she was living with her husband and his brother - prior to going into the home. According to her they were out to deprive her of her property; that was why she was put in the home, being held against her will. At one point we were contacted about this by a deprivation of liberty team, she was quite convincing.
Apart from the fact that my stepfather's brother could not have been living with anyone as he was dead at this point; my mother was convinced they were both called Ian and the property she was worried about was a hundred miles away and had been sold 40 years ago. The thing was, because she really believed all this, she was believable too - until the right questions were asked by people who did not know her circumstances.
It is very hard to deal with. The paranoia is real and there seems to be little to be done, other than listen and distract. My mother used to get noticeably less anxious as the visit progressed and normal things were discussed. Good luck.
She believed she had a fiance. They spoke on the phone daily. She, of course, was talking to the dial tone. She would sing and croon to the dial tone, and sometimes argue with IF (invisible fiancee). Their imaginary wedding was coming up and she would ask me regularly if IF had called me to set up details. I would tell her no. She would scream at me for lying. If I told her yes, she would scream at me about the imaginary details I set up. I was getting screamed at, no matter what.
As the wedding drew even closer, the phone calls became long sessions of love songs. She shared the "I Love You" song IF had written for her. At this point, I had entered bizarro world. Also regular, intense nausea.
Wedding drew even closer. I asked for her forwarding address and she told me that IF had already told me that, IF was taking care of everything. I pointed out that I had not been invited to the wedding and she screamed at me for lying.
She was transferred to a rehab hospital which also had a memory care facilty on the grounds. She told me that late at night, a group of men gathered outside her window to drink and sing to her. Then she told me that IF (based on a real life, reputable, local, orthopedic surgeon) came to the rehab facility late at night. I pointed out that he was not on the sign-in book, but she told me that he owned the place. When he came in the evenings, they had sex. She was in love. I was now approaching insanity.
When I asked again about where they were going to live, so I could come visit, she told me they would be living on an entire floor of a hospital with his parents. My mother was 95 and she was going to live with somebody's parents????
Along with the main delusion, was the constant refrigerator story. Back when she was still in her fome, she needed a new frig. We went and bought a perfectly fine one. It was installed. But she wanted the fancier, more expensive frig that, more importantly, would not fit between the already build-in cabinets. Somebody had to be responsible for the fact that the fancy frig would not fit so that HAD TO BE HAPLESS ME. Mind you, I was a university professor, there is nothing hapless about me.
So, first IF bought the new frig and it would be delivered on day X. Day X would come and no frig. This meant long arguments with the dial tone. Then, she said that my ex-husband was bringing the new frig by and he would put it in. When no frig arrived, more screaming at me. Then, she would call me to thank me for buying the new frig and ask when it would arrive. She never, not once, answered questions about how to get a too-large frig between the built-in cabinets.
She proceeded to get sicker and I moved her to a nice memory-care facility. She hated it. But one day, she slipped off the 12 carat diamond ring that IF had given to her and asked me to hold on to it for safekeeping. I had it appraised and it came back as a JC Penney's ring, valued at $20 or $25. Once, I pointed out that she had purchased the ring herself, at Penney's, but of course, I was screamed at.
If I used logic, I was screamed. If I went along, I was forced to come up with more and more fanciful detail, and I did not want to play, so I got screamed at.
Want to know how it ended? She died.
Sorry, but this is true and if I had not kept my sense of humor, I would have needed multiple medications to keep me sane.
She used to come to my home to gather pecans from my trees before she became ill and could still drive so of course, that became part of her delusions also. She would ask where was I the day before when she was here picking up all the pecans. Said I should have helped her. These stories were even told during the winter when there were no pecans or gardens and sometimes with ice on the ground outside her window.
She also accused the staff of theft and the other members in the MC unit. She did lose several things but, there were items in her room that were not hers. I took those items to the nurses desk to be returned. Never did find her other shoe. I simply bought an extra pair. Delusions are to be expected. My husband has began to talk about things that are not true or were not done. He gets violent without his meds. So, I make sure they are taken every day. And he did have a UTI at one point and it really wasn't fun. His dr asked me how I knew what was wrong after they got the test results back. My mom!!
If you are really worried, visit with some of the other clients and have casual chats with them. If it is bad there, someone else probably will mention it.
My 94 year old mother with dementia also on Seroquel but now I have to find new ways to crush & hide it. She’s been having these psychotic episodes…demanding to call police to look for my father (died in 1992) who she says went to work & never came home. Or call my grandma who died in 1998. Trying to escape from wheelchair &:or bed even though she can’t walk. Hugs 🤗
My mother's first UTI after moving to MC resulted in severe sun-downing. She was insistent that she had guests coming and HAD to go home! Not like your mother's wild scenarios, but clearly she was delusional. She set off every door alarm. They called me to come there, with me thinking what will I do? She's never had this before and was never under my care! By the time I could get there, they had finally gotten her into her room with a magazine. I let the sleeping dog lie. Sadly this started on a Friday evening and not one medical person was able to provide ANY help. We had to wait for Monday when she had an appt set already and staff had to deal with this every evening until then. She had to take an anti-anxiety along with the antibiotic, but only until the UTI cleared. Never had another episode. Subsequent UTIs showed up as night time bed wetting/soaking.
A move certainly can cause changes, usually negative, to happen. We often suggest moving someone to MC before it might be too late, as the move can upset the apple cart.
While they reported the situation is related to dementia, have they done enough testing to determine the underlying cause? Different types of dementia can result in much different symptoms and behaviors. It can also make a difference in what types of medications might work or would be wrong to prescribe.
Hopefully the staff can get your mother to take the medication. Many need to be taken for a given period of time before "good" results are seen, IF they can get her to take it for 2 weeks, but nothing changes, she might need something else. Hopefully they can take her into the psych unit and work on the right meds to at least tone this down.
It sucks getting old. It sucks having medical issues. But this whole dementia thing is just crazy! It would be nice if some research could figure out why so many are going down this path. Yes, age can be a factor, but it isn't the only one. Many people live longer lives now than in the past and they are fine. Some who end up with dementia aren't even really that old - a few who were in mom's facility weren't even old enough for SS!
p.s. As others said, there really isn't a "denial" of the condition so much as dementia lies to the person. Their self-image could be from years prior - I could tell from various comments and discussions that my mother was living her life from about 40+ years ago. I couldn't use the "D" word, as her idea of what that meant wasn't even correct. Mentioning the memory losses, she'd just say she's old and entitled to forget things sometimes. Sadly what's in their head we really can't know, but so long as we can safely do it, go along with whatever they say/think and distract/redirect their focus whenever possible to something better.
If conversation is even possible, you might be able to tell your mother that "you'll look into it" when she describes some hooror or abuse by staff.
Your description of the home sounds wonderful. I hope yours is the more accurate picture.
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.
(yes, yea, u can't see it, but we can😊)
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?
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.
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.
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. :-)
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
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.
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!