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

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.

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.

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.

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.

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.

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.

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.

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 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.

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.