Anyone else's parent having Delusions due to COVID Isolation in assisted living?

Yes my mother 89yrs. was in hospital 2 days. In march then to SNF for 19 days ( doesn't remember ) for rehab then the " lock down" then to her apartment in independent living until now 3 months alone except for my visits to take meds.been out 3 times for Dr apps She has been watching so much. news of the protest and riots ant believes her and I went on a trip to LA and were there with protesters? Keeps asking why did we go on that trip. ?With out the regular activities and meals in your apartment she has gotten a mild case of dementia the loneliness is over the top.
I just have to keep telling her your not alone with how your feeling? Mom has always had anxiety problems for at least 45 years, we just need to pray for a better way of life for all!
Sorry just had to vent

starting in rehab my mother thing she is being held in motel somewhere. then we she moved to AL the first 14 days was really bad again. Now she does not understand about the virus is not sure where she is or how old she is.

My mother had NO cognitive problems when she went to the nursing home (March 4). Now, she's calling me in hysterics, saying that they've put her bed in the basement (there is no basement) with rows and rows of bookshelves that she can't reach, and then they put her in a room with glass cases full of cigarettes that she couldn't reach either.

Mind you, she was always an avid reader, and she is a former smoker, so I can see where some of this stuff comes from. And multiple repeating patterns are characteristic of her Charles Bonnet Syndrome, so I could attribute some of it to that due to sensory deprivation. The scary thing is, when she was at home with me, she would always accept my explanation that these things were hallucinations. Now, they're very real to her.

Last week, she interrupted one of these stories to start hollering, "GET DOWN FROM THERE! GET DOWN! YOU'LL HURT YOURSELF!" so loud that I could hear it echoing down the hall. She said there was a little girl in her room and she was climbing on something, and she wanted her to stop, and she continued yelling until I told her to hang up so that I could call the "head nurse" and have them do something.

Mom will be 88 in a couple of weeks, so I know that some degree of dementia was inevitable, but this has advanced so rapidly that I can only blame the isolation. It's heartbreaking, frustrating and infuriating.

Oh yes! Big Time! My mother was sent to the hospital by ambulance because her hallucinations had become terrifying, and yet, within 24 hours of being in a new environment (the hospital), she had cognitively cleared so much the hospital sent her back to AL without doing the neuropsychologist evaluation that had been ordered. Hallucinations came roaring back and now she has had the companionship of her cats taken away too. I haven't been allowed to visit her since February. I was out of state the end of Feb and once I'd self-isolated two weeks upon return, the lockdown was in place. Still. Her facility still does not allow residents to eat in the dining room no matter how separated they sit. My mother is almost blind so Facetime and window visits are not helpful and she has forgotten how to use the phone during this period of isolation.

medicating patients in AL is standard procedure. Look up the side effects of the meds she's on..and measure against her current most troubling symptoms. You have nothing to lose by keeping an open mind .You might consider watching "death by medicine" by gary null .. I work in medicine

Oh my.. your poor Mother. Ativan disturbs the sleep rhythms markedly. Add that to the numerous other medications she's on. The drugs given for dementia have side effects of dementia type symptoms. Its also almost impossible for a physician to determine if a senior is suffering dementia or dehydrations. You might check her daily intake of water. I would venture she is dehydrated. You can do the math. covid has nothing to do with it. She is in a state of acute toxicity. You might consider getting her medical chart, going through the names, numbers & potencies of her medications. And checking them against the symptoms she is being treated for. There is a definite dosage scale. And Ive seen over prescribed frequently. Polypharmacy (many drugs) commonly causes severe side effects. Once you understand what they are giving her, you can ask her dr the rationale. And request dosages be reduced slowly over time. Drug toxicity is very common among the elderly . They don't move around very much. Usually eat little. And have little water. Therefore, the drugs enter the bloodstream in concentrated amounts. And its difficult for the liver & kidneys to process & pass these poisons out of the body.

A tea of 1:1 chamomile and sage (you can buy the bags if you prefer..2 of each per cup) is effective at calming and soothing an anxious and combative senior. And enhances sleep. Doesn't disrupt it. And 2 or 3 valerian caps an hour before sleep will ensure deep restful sleep without any side effects.
Finally as Hippocrates said about patient treatment "Care Always"..which you clearly do. Love and Sleep are the great healers of body and mind.

My friend had this issue with her mother but, sadly, she was in independent living, not assisted living. They simply dropped her meals off and didn't check to make sure she ate them. When the the facility finally realized there was a problem it was because her mom ventured to the front desk and was totally out of it, delusional, whatever. They called her brother and they found mom curled up on the couch... probably 30 pounds lost and didn't recognize anyone. They brought her home with them and she's been doing a bit better but the doctor says she needs to go back to memory care now. This isolation is a big problem so I think all the video chatting you can do is really important. I was thinking it's time for my dad to do assisted living until I heard this story and decided to wait until all these restrictions are totally lifted and there is a vaccine or at least some testing that would allow social engagement for a very hard of hearing old man.

I hope your mom gets back to normal soon!

My friend had her mom in a super luxury independent living section of a facility. They didn't pay for housekeeping, just for meals which during lockdown were delivered to her door. No one was allowed to visit. This past weekend, her mom went to the front desk acting all crazy and the family was called in. They found food uneaten, sitting in containers all around. Mom had lost like 40 pounds and didn't know who they were, where she was, etc. Supposedly because she was in independent living, the facility has no responsibility.

Please also check for UTI. Mom’s having similar issues in her locked down AL. Got much worse so decided to check for UTI. Yes she has one, antibiotics were just prescribed hoping for improvement.

Havent seen my 96 year old mom since feb in her memory care home and she has gone downhill. She donesnt know us anymore and is getting to be a nuisance to the staff, setting off the fire alarm a few times and going into others rooms and getting their snacks. This week the caretaker caught her eating some hand cream. Not sure what will happen next, but I'm sure it won't be good.

My mom has had similar issues although not as extreme as your mom seems to be experiencing. It began about a month into the lockdown. She was suffering from dehydration and a uti. Her bp med also had to be adjusted because her heart rate was in the low 50s. The delusions did not completely go away once these issues were resolved. It was happening a couple of evenings a week where she thought she was in a different apt that she didn't like. She was prescribed 25 mg of quetiapine that she takes in the evenings. After 2 weeks, she seems to be doing better. Maybe ask about this med.

This is such a hard situation. On the one hand, we all want our elderly loved ones to be safe, first and foremost. However, this isolation is causing such horrific side effects.

My mother has AD, and is a memory/AL facility. No one in the family has seen her. Visiting through the window would only benefit the family, as, I am sure she couldn't see us, because she is bed-ridden. It has to be terribly confusing for the ones who can visit through a window or over a fence, though.

My father is in an IL facility. At first, I think he thought my brother and I were lying to him, about why he couldn't see Mom. He went into a depression, and would barely get out of bed or eat. I kept reminding him that we miss Mom, too, and that when her Birthday came and went, my brother brought some flowers to the facility for her.

Now their 69th Anniversary is coming up, and I'm not sure whether or not to even mention it. I contacted the facility and asked if there was any way my father, who has not been out of his room, with only caregivers visiting him, could go see her, if he wore a mask and gloves, had on sanitizer, and went straight to her room (where her room is, he wouldn't have to pass anyone else's room). Of course, he was denied, as I suspected.

My brother and I are Dad's caregivers PTL! so we are able to see him daily. Even still, he has always been a person of service, first in the military, then on the PD, and now an ambassador in the facility, so this isolation is literally killing him.

I looked up the symptoms of someone in the process of dying, and he had all but 2 of them. He is starting to hallucinate that people are visiting him, and is having extremely vivid dreams and memories. Twice left the room in his underwear, to trying to find his car, so he can go to work, which he says is the first day on the PD. None of this happened before the lock-down.

I have permission to take him downstairs to eat in a room not being used, if I close the door and sanitize the area afterward. It has made a huge difference! They are also allowed to go eat in the dining room once a week, 9 at a time, at a distance. The problem is, they are all hard of hearing and can't communication, anyway.

Others in the facility, are not getting out of bed. Ladies that used to pride themselves in getting dress up to go downstairs and eat, are not getting dressed, and not even combing their hair. Most of the men, like my father, aren't getting exercise, so they are out of breath and their legs hurt when they do leave the room, even at a short distance.

There has to be a better system of keeping our elderly safe, but helping them stay healthy mentally. This system isn't working, from my perspective.

Yes! My mom in AL aged99. Shortly after the isolation began my mom started having more and more delusions. If she was watching a TV show, she projected herself into that show. Would call me to come pick her up from the court house( was watching judge Judy) pick her up at the funeral place ( watching the news-reporting covid deaths), she was out on the prairie with the cowboys(watching a western movie) but the worst came when she was watching some detective show, she attacked one of the aides, thinking there were fugitives in the bldg and she thought she could over power them.
These have subsided but mom has declined rapidly, I think all the isolation is killing her. We have started hospice, finally hospice advocated for us to be with her as she is deteriorating so quickly.

There is no reason to assume this will improve once you can visit. Sundowning isn’t very common in dementia.

Sundowning is something that can change from day to day. Some days more extreme then others. Dimentia is a spiral that can keep the caregivers on their toes. Things that the person says or does is beyond what we know as normal. One should not be surprised at anything, but you will be!!

My mother did not know who I was when I was her caregiver in her condo, but when she was in the memory care home she knew me. Just a few nights ago, my husband's sundowning was a heart sick time for me. It was as if he woke up from a 65 year coma. He knew nothing from all those years. Not where he was, how he got here, etc. He asked me, "How are you going to get home?" I said, "We are home." He said, in quite surprise, "Are we married?" When I said "Yes, 60 years," he got so upset with his memory loss. This went on for hours. I remained calm, held back tears and used calming statements. I do know with this disease things can change in a second and it did, but what was he going to be like during the night or in the morning, I did not know. Thankfully his sleep was fine and he is back to his Alzheimers personality, but not like the other night. For this I am so thankful. So again, I am taking each minute as a blessing and continue reminding myself, the real person I fell in love with and always will, is still in there but the brain has just ajusted him a bit.

I have learned that with this disease we can not expect anything. Be surprised, and you will be with what they will say or do. What they know, what they think. Not to get upset with them. Try to remain calm. If you think you asked for patience when raising your children you now need to ask for a whole lot more. 😱 Remember to smile even when you feel like crying. Know you are doing the very best you can for your lived one, be it parent or spouse. Take care of yourself. Even when my Mom was the most ornery to handle, my expressing my love to her seemed to get through. Even though I was not with her when she passed in her sleep, I knew she went with the warmth of my love in her heart.

So in the times we are in now, where you can't be visiting loved ones in care homes. Any words, via phone, zoom, site through a window, cards, etc. sends warmth and love. Just keep on doing it.

Yes, my Mom seems to be developing some type of sundowning now too. It's been getting worse the longer the no-visiting requirement is in place. She doesn't have the same behaviors as your Mom but is typically quite confused later in the day and has started calling and crying around 4:30, even after having a video chat or window visit earlier in the day. Her facility never kept residents in their rooms (it's a SNF) so that made things better than they probably would've been. I'm hoping things will improve if and when we can visit in person again but am trying to prepare myself in case it doesn't.

These are certainly difficult times for so many of us. I can only imagine how hard it is for someone with dementia when they don't remember and/or understand why things have changed so much.

This is all really difficult. My 95 y/o FIL had been in memory care since May of 2019. He went with MIL who died in October. He was quite confused about why people were wearing handkerchiefs when that started. He had been declining weekly before lockdown. That continued although staff did their best with keeping them entertained in their rooms. He was hospitalized with UTI. He came back and died 9 day’s later. He was negative for Covid. He was on isolation after returning due to being in hospital. The facility did first round of testing the week he died. Prior to that one staff member was found to be positive. Testing revealed 6 patients tested positive and 2 more employees. One patient died. These were the first positive patients. I don’t know if they were people who had been there for a while or if there were new people who were recently admitted from a sister facility. We are relieved that FIL is no longer alive and being exposed. He was incontinent, wheelchair bound, unable to even stand and had stopped eating. So he was ready. So as inconvenient as it is, this virus is so contagious. I certainly have no doubt that isolation makes dementia seem worse but it is even hard to gauge that with such limited access to them. But the alternative is that many of facility residents would die without restrictions.

My sister lives in assisted living and I have not seen her since March. She has schizophrenia so always has the usual delusions but they have gotten much worse since the facility went on lockdown. She called me everyday with concerns such as people are stealing her clothes to they want to rape her. It is impossible to change her thinking. She was begging to come to my house and went so far as to pack her bags and tell everyone she was leaving. She says she gave away most of her clothes now and is begging for new ones. Now the facility actually had some residents test positive for covid 19 so she is now quarantined in her room. She had been arguing with her roommate prior to this so I have no idea how things are going because she can't use the phone any longer. Staff had to increase her meds to try and calm her down. I don't know if she will return to baseline when things return to normal or not. The change in schedule, not being able to see family, and go out shopping or to eat has taken it's toll. Not to mention the fear of getting the virus and being shipped out to the hospital never to return would be hard for anyone let along seniors with mental health issues. I'm sorry you have to deal with this with your loved one. I know it's a source of constant worry. I hope it helps you to know you are not alone and that it appears to be quite common. I hope things get better soon for all our sakes.

I take care of my husband at home and he is not super social, but not having church Wednesday evenings and SS and church on Sundays has been hard on him. We also ate out two nights a week. Somehow he believed he was no longer at home. He started seeing another white dog around the house...we have one Bichon. He was packing to go “home” and commented on how spooky it was our home looked almost like this place he’d been staying. I kept telling him it was because he was home. He also keeps talking about this group of people I have here. There is no group. It is just me. Somedays I think he sees me as an employee and not his wife. My neighbor is a retired nurse and thankfully she is here for me to vent. I keep trying to reason with him. Somedays he “gets” it, but come evening he wants to go home. It all started soon after the shut down. I came home from work 3/13 and have decided I needed to retire and be here all the time. Also, since the shut down he is unable to drive because he sees things in the road that are not there. I am not sure if he would have been better if the same routine had been kept or not. Might be progression that would have taken place, but does seem very coincidental for sure. It may have sped this disease up somehow.

But, we do not know when COVID-19's lockdown will end. My extensive prayers go to you and your mother to cope.

Boy, does this sound familiar! But my dad has always been a bit gruff and cranky. He is 93 and in AL. He loves to be in the lobby 'people watching' and visiting with friends. He also enjoyed going to the dining room and eating with others. He doesn't particpate too much in activities but I used to go there every Saturday and we would always watch the live entertainment they had there. We also had private caregivers 3 days a week to assist with his care, get him to appointments, the dollar store, out and about, and church. Since the second week of March, all activities have stopped, No church. I am no longer allowed for visits, no private caregivers. All meals are taken to his room and at one point, they sent him to the hospital which put him in a 14 day quarantine to his room when he got back. Home health was in a few weeks back to manage his ongoing issues with cellulitis and said he must be sent to skilled nursing. He fell 2 times the morning they were moving him and again another time in skilled nursing. Without the extra attention from caregivers and his socialization with others, it has 'tanked' his health. Since he can't be out and about in the facility, he has grown weak and can hardly stand, even with a walker. He had previous been diagnosed with compression fractures in his back and now a new one has happened. Skilled nursing sent him to the hospital for a week after that and now he's back in skilled nursing and all those assessments start again! The doctor has now said he cannot return to AL. He needs to be in memory care or a private care home so I am working that direction, although I have not given notice at AL yet. We are waiting for a written, final assessment as to his prognosis on Monday. I cannot believe how his health has turned in the last couple months. This is not good........ The lack of socialization and extra attention has definitely taken its toll.

Carolinechcs, for the most part I could have written your letter. The AL you describe is exactly like my mother’s. Her personality is very much like your mother’s. Although my mother isn’t very social either, she seemed to enjoy having her meals in the dining room with the residents she was assigned to sit with. She liked getting her hair done every week and saying the rosary with a group ever morning. Now there is nothing. My mother is clearly in a delusional state. The headlines in our newspapers focus on the number of deaths in SNF’s and AL’s on a daily basis. We live in NY state which is very slowly opening in phases; we’re in phase 1 right now, so these facilities won’t open until phase 4 which could be months away. This is so cruel and there doesn’t seem to be anything that can be done about it.

There are numerous studies showing social isolation is has negative cognitive and physical impacts on healthy people, and more so on seniors. Other studies show social isolation speeds cognitive declines. Although I'm not a big "social" person, the increased isolation from CV impacted me personally to some degree. So I believe most people in LTC will have been negatively impacted by the continued social isolation. In fact, I'm beginning to think CDC guidance needs to address how to "re-open" our LTC facilities (at least internally) given a vaccine in months away.

According to a friend who has a parent in the MC where my father once stayed, the MC has reopened internally, allowing residents to leave their rooms and use the common rooms and outdoor porches again for 2 hours at a time (morning, afternoon, evening). The facility tests everyone for CV weekly and has installed UV filters on the central HVAC (each room has an independent HVAC unit). Family has been doing window visits throughout the lock down but can now also "visit" across the fenced in outdoor porches/patios where a couple wooden fence sections have been replaced with Plexiglas.

I can see in FB posts a local AL has also reopened internally as they are posting photos of residents in the day room and large outdoor patio area. I think as soon as the tests became available and the state started requiring weekly tests of everyone living or working in LTC, several LTCs started getting their residents out of their rooms for some portion of the day. The AL posted a picture of residents dining with only 2 residents per table, maintaining proper social distance and stated in answering a comment they were rotating residents so everyone gets out of their room everyday - either to the patio/porch, day room or dining room.

My sweet mother with MCI and the beginnings of dementia had become insistent she wanted to go VISIT someone somewhere. A hour or so drive around the area 1-2 times a week wasn't enough. Even though we have children in the house and her great-grandchildren visiting daily she still wanted out. Last week, we resumed her adult day care schedule and after the second day this behavior just stopped.

If testing is available, the local CV rates are reasonable and resources allow daily cleaning of common areas, I think the internal interaction between residents has little increased risk.

Yes!! My mom is exactly like yours!! Her aggression and abuse to staff escalated so much that she’s in a behavioral unit an hour away but has been a real sweet pea being there, living the attention. They want to send her back because she’s not meeting criteria, I am at a loss at what to do now ! Her LTC does not want her to come back until she gets a psych evaluation and med adjustment.
My mom was admitted 2 times to ER after some falls, got put on isolation twice, that’s 28 days totally alone in a room with no social interaction it was devastating on her already declining mental health.

Yes my mom started having hallucinations about her baby doll after AL started giving her Mertazapine when she was admitted back in December. Locked down since March. Her moods do swing. She hates it there.