Mom tells me things about her assisted living facility. How do I check to see what's true & not true when I can't get in because COVID?

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Mom tells me things about her assisted living facility. How do I check to see what's true & not true when I can't get in because COVID?

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Mom is on hospice in assisted living. She refuses to take all of her meds. So now shes hallucinating, angry, paranoid, etc. She tells me things that are so unbelievable, like people shooting guns at her, ducks being let loose in her room. Then she tells me things that could possibly be happening, like catheter is leaking & her room smells like urine, they aren't giving her breathing treatments but once a day, etc. I have talked to the nurse at facilities & she has shown me signed charts of when they gave her breathing treatments. How can I make sure that shes really being treated well, when I can't get in to assisted living to check because of COVID?

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Not having to thankfully deal with caregiving in a Covid world, I sympathize with you. My mom had dementia and so of course she made many statements that were clearly outrageous and inaccurate, much as described here. BUT I did feel her moods and sentiments were an accurate barometer of what was going on with caregivers, etc. In other words, there was a grain of truth in a sea of outrageous statements. All this to say, is that I would gauge what is going on by her general state of being. Is she steadily becoming more upset? Is she deteriorating? Are there signs she is not getting good care? It is really hard to judge, but I always tried to err on the side of caution. Assuming you know your mom reasonably well, you can hopefully gain some clues from her general demeanor. Go with your gut.

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Video camera. Speak to the director. If he/she says no. Find the fine print that validates that no. Since COVID has upset our Elders living arrangements and wellness. I would think you could get whatever you would like to make sure your mom is okay. Good thoughts your way for a solution to your peace of mind. Sincerely.

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How will anyone know where there is a nanny cam? Things taped without the person's (being taped) knowledge may not hold up in court, but you will know. And the administrator should be informed as well as the Director of the Ombudsman program for your state. I go to the top. Always.
Be well.

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Great answer! They are there to help and make sure that the elderly are being treated properly.

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Don't know how you can confirm what's going on in your Mom's facility. Can tell you that a family member is an RN at a combination facility and her reports are far from good. Her own mother needed rehab recently and went to the facility she works at. Pulled her Mom out almost immediately. They wouldn't allow her to see her own mother even though she worked there. All physical and speech therapists were laid off. Patients got meals & meds delivered, beds changed and that's it. None got the attention they truly needed. Visitation is limited to 20 minutes, outside the building, by appointment only. If something happens (rain, for example) the visit is cancelled and you're stuck back at the end of the line waiting for a new appointment. Some patients haven't seen any family members for 4 months.

My own mother was a CNA at a nursing home for many years, working 2nd and graveyard shifts. She always came home angry about the condition she found her patients in at the start of each shift. That was decades ago. From what I can gather, absolutely nothing has improved in these facilities. They're cash cows for the owners. Period.

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Exactly!👍

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If you live in Ontario Canada , you need to get yourself a Covid test . When you have the results and they are negative you are allowed in to see your parent one day at a week for 30 minutes. Some places this is only allowed outdoors. I saw my Dad twice in the last two weeks. Good luck. You could also ask Staff to check on her more often and report back to you. I have done this as well.

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At the very least, skilled nursing facilities and assisted living should provide a RING-like device. If loved ones can't visit in person, there needs to be a way for their advocates to be aware of the conditions. I read a description by a woman whose mother was in a SNF. Her mother had fallen out of her wheelchair in her room and was lying on the floor. A close family friend came to "window visit," saw the mother on the floor, took a photo and sent it to the daughter who called the facility. What if her friend hadn't been there that day? How long would that poor woman been on the floor? There are so many ways in which Covid has challenged the disabled and elderly and their loved ones who are caregivers. The facilities of these frail individuals need to wake up and put the needs of their residents as a first priority.

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Imho, of course the complete fabrication of tales of firearms being used and waterfowl inside a care facility is just that, e.g. an untruth. Of the important things such as a catheter leaking and omission of breathing treatment, check with facility to ensure that these are being facilitated.

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I only read some of the responses. It truly is the hardest call and why I took mom home - After mom’s stroke she couldn’t speak. I stayed till late at night and all day - I helped with all of her care - I witnessed how they rolled her and her head would hit the bedrails during changing - I watched food tray be delivered and sitting beside her (when she couldn’t swallow), I heard her roommate get her medication, I watched medication mix ups, I saw and heard people begging to be changed , buzzing the aides from their call button to which I would hunt down and find someone to help them because they were ignored for long periods of time. These places are understaffed and under trained in some areas. Her roommate told me an aide said to my mom at the overnight changing “you be nice to me and I will be nice to you”. My mom at that point couldn’t speak - was mostly not alert- could not move her body at all and I also found a bruise egg on her head (from them changing her and smashing her head against the rail and not putting a pillow there). I slept there in shifts with my husband and she wasn’t left alone until I was able to get her safely out of there. I’m in Palm Beach County Florida. What I saw was disgusting. It is hard - I had meetings with everyone over and over - nothing changed - stay overnight in one of these places and you will be sick to see what goes on. I’m not saying there were not great ones mixed in - there were but not enough to risk mom’s safety. What I have taken on is strictly because of what o saw in these places. One day when I have my life settled I will give my time to making sure that stuff stops - I’m saddened at what I witnessed. My local EMT told me they have reported that place over and over again and how nothing changed
I don’t know your mom’s place but the hardest part is to know what is going on - we did look into a camera but for some reason I think we were unable to place one.

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There are always going to be places that are less than ideal. While there can be lapses in AL as well as NH, keep in mind that OP's mother IS in AL and is refusing to take her medication, which results in hallucinations (guns? ducks?) Of course some of her "complaints" could be real, more than likely they are not. The best way to judge is to see for yourself, which was the case before the virus led to lock-downs.

NHs are likely better than they were 50 years ago, but there's always room for improvement. All too often NHs are overpriced and staff are underpaid and overworked (cut costs to ensure the investors and/or owners get their cut!)

The place I chose for my mother is a non-profit and consists of IL, AL and MC. We can only hope she never has to go to a NH, but the more they see family and friends, the more likely you'll get a little better care, maybe...

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I wonder if it is legal to put in nanny camera's in your Mom's room? Otherwise it is hard to know if what your Mom is saying is true.

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With covid, there may be things allowed that weren't before. There has always been an issue when sharing a room with someone about having a camera in the room. I would definitely ask about this.

A rehab my mom was in had specific wording in the contract about hiding a camera in a one patient room - if they find it, they would remove it. I thought that was kind of odd. After being there to observe the goings on, I found out pretty quick why they didn't want a fly on the wall. Unbelievable crap went on there. Understaffed but kept a huge sign in the front that they were hiring. People applied, no one got hired. All staff allowed to work full shifts and extra time when they had onsite state workers investigating something or for the regular facility reviews. Once the suits walked out the door, extra staff sent home and back to one person to handle about 12-15 patients.

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Why try to figure this out. If you can bring mom home do so, and continue hospice at your home. The best care is from a loving family.

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Your reply is so compassionate but not always possible for families.

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This situation has two aspects to it and both are most likely true. If she is halluncinating paranoid, etc., she has dementia and that is how they are and it is horrible and they can't be fixed. So you ignore attempting to make that right as there is no solution. However, and I speak from experience since I live in assisted living for 12 years and am an advocate for all people here - I see/fix problems - and management responds because I have proven over and over again I am l00% with it. Most places are underpaid and understaffed and they just can't and won't keep up with things the way we often want. I see that day after day and thankfully I do what they don't do because I make myself do the impossible. It is quite possible that there are problem areas and not getting in is awful for families. What I would suggest you do is this. First, talk in detail to the very top administrator and head of the facility and she will call in the people who are responsible and check what is going on. Document everything. Then if this keeps up, contact the local county Ombudsman who is with the Office on Aging. They have clout and can come into the place and will check further. I don't know what else to tell you but there is quite possibly truth here.

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"...I make myself do the impossible." But you didn't do that for the person you were POA for who did "things" you didn't like and most likely didn't understand... Dumped the person and distanced yourself...

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Omg! I’ve been thru the wringer this week trying to find additional home care for us because my mom (93 in tcu after surgery) kept telling me they ignore her and if I don’t get her out of there she was going to find a way to do away with herself and they would be on my conscience for the rest of my life! yesterday I called and asked her if she’s ready to go home tomorrow and she said no - she needs more therapy and I couldn’t take care of her by myself. Tomorrow she will probably call and say she wants out of there again. I’ve come to the conclusion that I should not call her in the late afternoon or evening when she is tired and starts getting loopy.
She has been there just short of 2 weeks and even though she’s been tested for Covid she can’t do window visits until 2 weeks are up. Hoping to see her in the next few days. We are very close and this has been a real challenge for both of us with the quarantines.

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She could have a touch of post-surgical dementia. Avoiding the afternoon/early evening is a good idea. Between being tired and possible sun-downing due to the possible dementia, you will notice odd behavior, thoughts and comments! If she is okay in the morning, this is most likely sun-downing. Hopefully she wasn't already experiencing some early dementia and it is just due to the surgery/anesthesia. If she seems "rational" in the morning, keep calls and visits to mornings or very early afternoon! If it is due to the surgery, it could be days, weeks or even months that she might experience this. Often it does get better - maybe not 100%, but better. If not, a mild low-dose anti-anxiety given in the afternoon, preferably before the symptoms show up can keep her more even-keeled. We had to use this while mom was treated for a UTI. She was already into dementia and MC, but had never had sun-downing episodes before! She hasn't had any since either. Now UTIs show up as night time bed wetting... Nothing to do but be aware of that and test/treat ASAP!

Hope all goes well for you and your mom.

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90% of what my mother tells me about what's going on in her Memory Care ALF is a bald faced lie. I fact check EVERYTHING she says and then let her know I've done so, and what do you know? She THEN backtracks on the lies she tells me. Let me give you an example: she's telling me how weak she is and how she can't move or eat or do anything, etc. So I just called over there and guess what? She's SITTING OUTSIDE IN THE GARDEN enjoying the sun.

Try to ignore the people who tell you how gruesome these 'horrible places' are, and how your mother is being terribly mistreated and sitting in her own feces 24/7. Contrary to what they're saying, nobody's filming a horror movie in your mother's ALF, believe it or not. If you know the ALF, and you know the staff, and you also know that your demented mother is a big story teller (and/or liar like MY mother is and has been for 90+ years), then rely on what the nursing staff is telling you.

That's my advice from dealing with all this nonsense since 2014.

Good luck!

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Funny you say this because my mom developed the worse bed sores ever every time she had to stay in one of these places

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100% recommend putting a camera in. My mom is at a facility and even with a camera you would fall down seeing how many things they do. I have so many pics of employees not even wearing masks, meals not being brought, her being left soiled, etc etc. At least I can see it and have it taken care of.

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Hey 1963, I'm chiming in here because I understand that End of Stage Renal Disease is the last stage of Kidney Disease right? This normally means that Kidney Dialysis is required, so with that said, would he be entitled to some sort regular care through Medicare? Im not American so have little idea of what you are entitled to there, but surely Elder Protection Services, Social Services maybe able to help with some kind of Home Health support? Sounds like you are a wonderful person to do what you have done and it is draining both physically and mentally when you are caring for LO's. I hope that you can get some well-deserved help.

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You're kind of answering your own concern. The ducks and guns stories would give me piece of mind that the rest of it is a fabrication, too.
However, to really set your mind at ease, call the hospice supervisor AND the wellness director at the AL. Have a conversation with each of them to make sure their assessment of your mom's state of mind is roughly the same.

I once stood in a residents room and listened to her tell her daughter on the phone that "I'm thirsty all the time and no one ever brings me anything to drink" as I watched her sipping on a glass of water that a caregiver had put in front of her two minutes before.

You're absolutely right that you're probably just hearing anxiety talking. Especially if she's off her meds.

Not being able to see our parents is maddening. I'm in the same boat – with a cruel twist. I can't go see my dad at the SNF where he lives, but I can walk right into the communities where I work and see other people's parents.

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So true. I had an elder call me to tell me how "exhausted" she was because of all the "exercises" staff had her do and then later in the same conversation she told me she isn't getting any therapy and it's a shame that facility gets away with it. Same lady told me "they" put her in the same outfit every day, so I asked which outfit? The outfit she wears "every day" was hanging in her closet - clean and ready to go. If they put it on her every day, then how could it be in the closet on this particular day? I took the outfit home with me for a while - elder thinks we outsmarted them.

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I would be very careful how you go about this. Our recent experience of dealing with staff and facility where our Mother was and she took a fall. It landed us with a situation where our Mother was given 30-day notice by the Executive Director of the facility and our Mother two days later whilst in a confirmed confused state signed a HIPAA document to remove us of her POA's. In my experience, if you kick up a stink about your loved-one treatment, they will make moves to make things difficult for you and your Mother. I would approach this very delicately. First speak with your Mother and speak with your Mother with the head of well-being in the same room when Covid is over. Do not and I repeat, DO NOT try to deal with this until you can confront both parties. I would also take someone else with you who can be witness to what is being said. The last Eleven months of our Mothers life a terrible situation occurred for us and I would not wish it on anyone else. Unfortunately, management have powers where they can do things which could be detrimental to your family unit.

It is important to get both sides of the story, in our situation we had a confused Mother and new POA's reluctant to share information with us as she became a trustee the last Eleven months of our Mothers life. This was all instigated by the facility in the first instance, it can be dangerous if you are dealing with non-compliant management within these facilities who have a duty to treat residents and family members with empathy at such a difficult time, in our case this was not adhered.

I wish you luck and please be careful with your endeavours to get to the bottom of the problem. If you have doubts, start looking for a new place and don't tell the facility until you are sure you will be moving your love one! Hope this helps

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It is so sad that management threatens family when it is their own negligence that is causing issues. I receive the same treatment at my moms facility. They hate that I have a camera but at least I have everything I need in case they threaten me.

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Contact your state’s Long-Term Care Ombudsman. Tell him/her your concerns. They are your advocate.

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My mom is also on hospice in an assisted living facility. Your hospice nurses should be allowed in and they can be your advocate. Ask them to check these items for you.

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Our Home hospice nurse told us, she has to call the nurses for updates on the inpatient hospice patients because she currently is not allowed inside.

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These are difficult times for assisted living patients and their families but there are a few things you can do to reassure yourself that your Mom is safe and well cared for in your absence. One thing you can do is research to find out if any complaints have been filed against the facility or if they have faced government discipline in the past for any similar incident to what your Mom described. You can find out online if Medicare has a record of any similar problems in the recent past ( just Google Medicare reports with the facility's name). You can also contact staff at the facility to inquire about her catheter and breathing treatments or request a doctor's visit to confirm her physical condition. While staff may not be honest if they were negligent, they will be more likely to correct a problem if they know you are aware of it. You might also pay a window visit or send a tablet and ask staff to help you Facetime with her so you can actually see her condition. Being more involved and present can help keep staff members "on their toes". If you've done these things it may be easier to seperate delusions from facts and you can reassure your Mom that you are on top of things and making sure she is cared for. I hope this advice is helpful and I wish the best to you and your family.

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You need someone trustworthy with access. Wondering if the Long Term Care Ombudsman in your area might help.

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My 94 year old Mother, who is in pretty good shape, has been in a very good Assisted Living Facility since just before the lock-down. She has been complaining about being lonely and the food, etc. But sometimes she says the food is ok, and when we ask her how she is treated, she says staff is nice.

I believe she is independent and doesn't like the feeling of being taken care of and not seeing family. Also, she likely knows she doesn't have much time left and wants to be by family. If not for COVID-19, our plan was to have here stay with us one week a month and another sibling one week a month. That way she would be with family one week a month but still have the care of Assisted Living. We had her here for one week and it was very nice but when she went back to Assisted Living, she had to be Quarantined for 14 days, so that ruined that plan.

We are now in the process of having her stay with us in out home, but waiting to see what home care & respite care is available first.

Best Wishes, Paul

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I think a lot of the difference in experiences is when ones loved on is self sufficient vs when they need assistance

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I would tend to believe you mother is being well-treated if that was her condition before COVID-19. Let me put this into perspective with a story from when my mom was younger.

My youngest daughter lived with my mother and dependent grandmother for a couple years while she was in college and my husband's military career required us to move a lot. My daughter would be doing the usual stuff that college students do: have outings with friends that went a little late, work on school projects (she was a fashion design student) and leave work on a table... It seems my mom had a hard time dealing with this. She would call me to complain about my daughter. I would ask my mom, "Have you talked to her about it?" and "Is she home now?" Most of the time she hadn't talked to my daughter and my daughter was there while my mother was complaining to me. So, I would tell my mom to talk to my daughter. I would then call my daughter and tell her, "Grandma is upset about...., please talk to her about it." My daughter would say, "Why won't she talk to me about it?" and "I'm home now, so why is she complaining to you." Granted my daughter is no saint but she did help take care of her great grandmother, she is neater than most college students, and she did manage to find her husband during that time period.

All that to say that when situations change, some people do well with the changes and others "act out" as a way of saying they want the "usual way" back in place. I would talk with the nursing staff about anything mom says that is concerning. They can show you her charts that display the care she is being given. Keep reminding your mom that you love her and can't wait to see her after COVID-19 is no longer a problem.

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On our last face-time, my mom (95, in memory care, on hospice) told me ‘they‘ were putting her in someone else’s bras!!!!!!! It was all I could do not to laugh. Trust the staff and your own instincts. If you can face time, you can also judge by appearance and attitude. The facility may also have a webpage that you can follow. My mother told me that for July 4th they made ‘stupid’ hats. On the web page, there were candid pix and she appeared to be laughing and engaged. If you can make window visits, that also gives you glimpses of how your mom is doing. Just a few ideas.

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You can only HOPE and Pray that they are doing a Saintly thing over there until you get back IN. Tell them you WILL be looking things over after you are able to Go back.....

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I think you should consider how happy you were with them before your mother started complaining. Did you have any concerns? If not, then consider whether your mum is reliable. It is very hard because with delusions and paranoia comes a loss of credibility. That makes us worry about the truth mixed in with the fiction but also some attention seeking too might be in there. It must be hard not having visitors.

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I would believe her fully (rather than the the nursing home workers) -about everything that makes sense.

Nursing homes are understaffed now, more than ever. The squeaky wheel gets the care.

If you don’t give her credibility, she may ‘give up’ and stop sharing her concerns.

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RING cameras installed! But don’t tell her.

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I went to ring website , I can use it inside? Sorry , I’m totally at a loss, my mom keeps telling me things are stolen, she wants to move , and often lies about it....insight please

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Oh!! This sounds so familiar! My mother was in a rehab facility and she said the same thing about the staff taking forever to answer her call light. I called the nurses desk many times and each time they said she didn't have her light on and they were just in her room but she didn't say anything to them about what she was telling me on the phone. It is so frustrating! How can someone who remembers every upcoming doctor appointment not know if her call light is on or not? Also, because of COVID I couldn't go in to confirm what was exactly going on. I wanted to believe my mother. She would get very upset if I questioned her about things and didn't like when I didn't seem to believe her. It was very heartbreaking and stressful for me. To her this was her reality even if it wasn't real.
I agree with Mysteryshopper. Having them call you when they turn on their call light will help to know if that is really happening. That is what I did when my mother started saying she wasn't getting her 8pm meds. It helped!
Since everyone on the forum seems to be experiencing this same circumstance, it must be part of dementia. It's so nice to be able to talk/encourage others who are going through the same things. This is all new to me.

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Oh yes. Let's see... Deer wandering in the courtyard (not possible based on facility layout), dogs living in her room, same food served every single day, all of her clothes are "gone" (check closet each time she says this, clothes are always there), it takes 5 hours for them to answer a call light, they haven't walked me in weeks, etc. I agree some of this stuff is possible, but make sure you're looking at it in context. Something such as the call light thing can be checked remotely by asking elder to call you the next time she needs to hit the call button so you can personally be on the line to see that it really, truly takes "hours" for someone to come. (This may not be one of the issues you're having, but it's a common complaint, so I'm mentioning it.) I was on the phone, elder hit the call button to get help for her roommate. Response was immediate - and sounded like more than one person responded. And staff would have no way to know I was on the line. The "not being walked" thing was also proven false when nurse told me elder was "refusing" to get up and walk. I asked elder if she had refused & elder confirmed she HAD refused! But she wanted me to make a report about her not getting walked? Wow.

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Mom tells me things about her assisted living facility. How do I check to see what's true & not true when I can't get in because COVID?

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