My mother's MC has requested our family limits how much we take her out, is this common?

I can only give you my experience, I don't have all the answers! We have moved our mom a lot - from her house, to IL, to AL, to MC. She is a mess after a move, like a toddler having a tantrum. She gets more comfortable the longer she is settled in somewhere. The MC has not complained to me about taking her out for a weekly lunch. Sometimes when we return she gets fussy and wants to fight or cry. When we visit her at the MC and don't take her out, she stays calmer.

I understand that you just want to make your mother happy. Remember though, that you can't give her the happy feelings of her past. Her mind works slower now, and contentment might be a better, easier goal for her and for everybody.

Please read the book “Finding Grace in the Face of Dementia” by John Dunlop MD
my LO is my hub due to aTBI that has now become end stage Alzheimer’s. The hardest thing for families is acceptance of the diagnosis and that this journey always ends in them passing. This book was an important eye opener for all our family and we no longer second guessed behaviors or what if. Hub has been in memory care for 1 year. He doesn’t know me or our kids, he doesn’t recognize family members nor himself in pictures. He now is incontinent and not feeding himself nor brush his teeth or bathe. This brilliant man is like a toddler, walks all the time and actually prefers gunsmoke to bingo, puzzles, gardens etc. his attention span is maybe 5 min and then he moves on. Always smiling and cheerful friendly and pleasant but as soon as he walks away that moment leaves to. He was no longer safe at home walking in neighborhood in early hours and pool in backyard an issue. Life as I knew it ceased when he was tboned by a distracted driver. He retired early to volunteer and I am a nurse of 48 years. We had plans and memories to make. All is lost. We tried last year to take a cruise with 5 family members as back up help only to have him get covid and I was isolated with him as caregiver. I’m mad and sad at same time and have no choice but to pick up the pieces and live. Life will never be the same and I have had to take over everything. I visit him usually Tue and Thurs and he thinks I’m there all the time. The book was a start and so is counseling for my mental health and group counseling with others living this same nightmare. The hardest thing is to realize this and pick up the pieces. Other family members have told me he would want me to live. You are in the same boat. It doesn’t mean we don’t love them less or don’t care, it’s the total opposite but it starts with acknowledging the loss. Initially I rationalized behaviors and always focused on positive experiences trying to keep life the same but I quickly learned it’s not the same. Though the accident was 6 years ago the cognitive decline has sped up after Covid and so at one point couldn’t remember how to even walk. I watch him in the memory care and he seems happier with others rather than me. Talk about hard when he walks hand in hand with others leaving me there by myself. He doesn’t know but he’s well cared for and his needs met, he’s safe and that’s all I can expect at this point. Nothing will change this journey at all and he’s aDNR. We had years ago discussions about what ifs…our sons wedding is coming up in a few months and he doesn’t know him anymore. I don’t plan on taking him out to an event that should be happy …family understands others not so much but would be just the opposite.. it’s not worth the turmoil for a family pic infront of a crowd that he doesn’t know or understand and is only interested in having a treat.
memory care is not cheap either and if mom has little to no money it usually falls to the family to cover expenses. if you feel she’s not that bad that you keep her the whole weekend but due to working need her there during workweek then maybe best solution is hired a caregiver while you work and resume her care with you on weekend. That way she is where you think she’s her best but you will still be able to work.
Did I feel guilty at first putting him in memory care , yep. Was I overwhelmed as FT caregiver Yep and I was physically starting to suffer to the point the rest of my family was worried about me. There is no easy solution but the book and soul searching truly helped. I see some of myself and many others in your experience… but until you really deal with this journey inc grieving will you find any peace … I still question Why and pray for Gods help and in the meantime I love him with my whole being

I'm going to suggest some things that may be counter-intuitive. I'm assuming that you would be more amenable to visiting your mother where she lives if she did not engage in exit-seeking behavior when you leave. I think you should be able to eliminate or significantly reduce that behavior.

My first career was as a behavioral psychologist, and I've had experience with people living in institutions. We act on the assumption that behaviors continue to occur because they are followed by reinforcement, regardless of the particular behavior. For people living in institutions, attention is usually a very powerful reinforcer--even when it's negative attention. When you leave, your mother probably experiences distress, which is normal. However, when she then exhibits exit-seeking behavior, she probably receives a lot of attention, first from you and then from staff who are trying to keep her from exit-seeking. She may experience scolding, efforts at restraint, and attempts to keep her from trying to leave. While some of this attention may be positive, a lot of it isn't! For her, though, in the institutional environment, all the attention DOES serve as a positive reinforcer, We know this because she keeps repeating the exit-seeking behavior.

So what can be done? Even though she may not understand, when you arrive, tell her what time it is and how long you can stay or until after what event you will stay; for example, after her lunch. When that time comes, tell your mother what time it is, say good-bye, and leave. You will need to have talked to the staff in advance so they will know to ignore your mother when the disruptive behaviors occur, If her safety is in question, they can matter-of-factly remove her from the unsafe location--no scolding/comforting at that time. Otherwise, no attention.

Critical to this effort is NEVER giving in, comforting, scolding, or chasing (again, unless safety is involved). If your mother's behavior is reinforced with attention occasionally, it will be harder to get rid of the behaviors than if everyone were attending to her each time she showed the dysfunctional behaviors!

Up until this point, I've only talked about getting rid of the disruptive behaviors by getting rid of the attention that's followed the behaviors. This is called extinction. Ideally, the next step, after she has calmed down (or gone back to her room without having exhibited any exit-seeking), is for a staff member to pay some positive attention to her, praising her for staying calm, etc. Thus, the new, positive behaviors will be reinforced by positive attention, which is an ideal way to build behaviors. If the MC permits, the staff could also give her a small amount of a favorite snack or allow her some time to engage in a favorite activity (even if that is watching TV!), etc.

There is one other thing that it would be helpful for you and the staff to do, which is to keep a simple record of when disruptive behaviors occur, how long they last, and whether attention has occurred when her behaviors are disruptive, This will provide some reinforcement for you and them, and it's critical to know when/how you are succeeding, If you are interested in the actions I've suggested so far, I will gladly help set up the record-keeping! Thank you for wading through this post, and good luck!

I will say that we never said "we are going home now". My daughter would say she was going to work. Me, it would just be a bye see you later.

I would suggest instead - go visit her on weekends at the MC. have lunch there with her Sat and Sun. Perhaps an occasional meal out at a restaurant. but no overnights.

Yes, they are supposed to be trained and capable of dealing with difficult residents. This is why they collect thousands of dollars a month to have your mother at their facility.

I was a supervisor at a very nice AL facility. We had residents who went "home" every weekend and every holiday. Some even went on vacations in the summer with family. Sometimes they got a bit ornery and difficult on Sunday nights and during the week. This is because they didn't quite get why every day of their lives weren't a weekend. The aide staff would refer them to me. Then we'd have a talk about how their behavior during the week at the residence will determine whether or not their family picks them up on the weekends. This usually kept things quiet during the week. Or sometimes a family member had to call and tell the resident themselves. The ones who got difficult and ornery were left alone until they calmed down.

Please, don't stop taking your mother home on weekends. Your mother should not have her quality of life diminished to make the work of the AL's staff easier. It's our job to do our jobs. Not yours.

You keep taking your mother out on the weekends. Try a few things though. Like put a big calendar in her room and write the name of whoever is picking her up on the weekends for that month.

Then ask the staff if there's anything she can "help" with around the place during the week. We used to do this all the time with residents. Give them little jobs to help out with if they're able. Small jobs like folding napkins every day for the dining room gives someone (even a person with some dementia) a purpose and makes them feel useful. Assisting other residents who are worse off than themselves does too. This will cut down on the trying to leave during the week and difficult behavior.

Or hire a paid companion to spend a few hours with your mother during the week at the AL. That can help to.

You love your mum and you hate to hear that she is disengaged at the care home, especially when she is lively and engaged at your home and those of her other friends and family. But that's how you feel, not how your mum feels.

Your mum enjoys being taken out at the weekend when, for a short time, one of her friends or family members looks after her with energy and positivity. But you can't keep that up. You and your family can't share the burden, passing your mum between you, and one of you can't look after her day after day without getting tired and low.

So, those odd weekends are like a holiday, a special time. That's what is so unsettling for your mum. She needs normality, routine, and stability. You aren't providing that.

You don't mean to be, but it's a little cruel to confuse your mum by taking her to your home, where I'm sure she'd rather be, then take her back to the care home and leave her there. How can she possibly understand? How can she settle and be calm when she goes back and forth like a yo-yo?

If you took your mum home with you, it would be lovely for a little while. Until you start to get burnt out and your mum's condition deteriorates.

I'm sorry that you're losing your mum, and that she's losing herself, but clinging to the image of the vibrant woman she was for just a few short hours, in exchange for her being distressed and disoriented for days after, is unfair on her.

Reduce the number of times you take your mum out. Make the most of those times and make some lovely memories to treasure. But don't fool yourself that your mum is better because she's re-telling a story, as opposed to watching TV. Her brain is damaged and it will get worse.

I'd suggest having some good picture books in her room for her to read to the grandchildren each time they visit. Develop a routine for things you do with or for your mum when you visit, such as painting her nails or massaging her hands, playing card games or doing a quiz together, looking through photos or reminiscing.

Your mum's world will shrink and trying to prevent that isn't helping her. Instead, do everything you can to promote peace and equilibrium, including having her doctor prescribe anti-anxiety meds.
You also need to accept this process, and what's happening to your mum, for your own mental health and wellbeing.

@Payingforcare:

It is interesting to me that you seem to know all your rights and all the rules, and that you seem to have such a non-cooperating attitude toward the facility that is caring for your mom. You make it clear that, even if a patient is hitting or yelling and disturbing others, if is a process to have a person removed from care. And that an ombudsman has told you that he/she wishes more people were as aware of their rights as you are.

You have here made it crystal clear that you intend to do exactly as you have been doing, exactly as you please, and that you know that as a Medicaid patient your loved one will be almost impossible to remove from the facility.

Given all of this, and this long thread with all its comments, all it attempts to suggest compromise, I have to wonder that you ever came here?
You seem to know it all already.
You seem utterly Immalliable to any ideas of change.

Given that I think I will leave you to continue to do exactly as you please.
I will tell you this, however. And it isn't a story that is new to people.
My friend Casey used to work in fast food.
She said that there were excellent ways around customers who worked hard to make themselves disliked. I leave it to your imagination, but I do have details.

People who work in care facilities are often underpaid and not well treated. I have found as an RN that--VERY SADLY--tended to be true in government-supported institutions overall.
Is it right? No. It isn't. Does it happen? Yes it does.

At this point, and with your attitude, I fear for your mom.
I do understand your love and your advocacy for her, but please, do consider how vulnerable she is at this time. That you "win" any weary war over a mountain you choose to fight upon is going to perhaps not be good for the prisoner-of-war?

I ask you to consider that. And then I am basically out of this thread.
It is the whole leading horses to water when they don't wish to drink thing.

I wish your mother the very, very best. I worry for her. In fact, I fear for her. I see this weary war as a power struggle between you and an institution you don't much like. And I assure you THEY HAVE THE POWER so long as your mom is the one held hostage.

My daughter started out as an LPN then became an RN. Most of her career has been in LTC. When we placed Mom in LTC I asked what should I say and not say. Do and not do. Because, you want the staff, especially the aides, to like you. Your Mom is not the only resident staff takes care of. I really think my Mom was well cared for because she was easy and I was easy to deal with. The staff enjoyed my mother. Your Moms behaviour just does not effect the staff but the people around her. Her getting out of hand causes anxiety to the other residents.

You do what you want but don't ever think they can't get rid of Mom. She could go to the hospital and they could refuse to take her back. It has been done. Its their word against yours. MCs do not take problem people. When a resident becomes aggressive to staff and residents, its time for LTC.

I agree with the MC facility on this. You take mom out, she either does or does not understand what's going on. So, she may get confused--and then you return her to the place where she is now living--and her brain may be saying "hey, I thought I was going home!"--or whatever she's capable of working through.

Then becoming belligerent and difficult for the staff to handle. You feel good b/c you've done a good thing for mom. The staff has to handle the fall out.

Yes, they have the right to do that. I would have an all hands mtg with the facility and ask exactly what THEY feel is best for your mom. Quite possibly she's being over stimulated and it causes issues when she returns. I can't imagine that the MC would care that she has so many people who want to come get her to go places--quite the opposite! But if it begins to interfere with her ability to reset her mind to living in the MC and these trips cause issues, well, you need to know exactly what to do.

They can make things harder for you. Not saying they're bad, of course, but what you are doing may be making mom more anxious and difficult to deal with.

It seems to me that this facility made a valid request of you - for valid reasons, which they gave - and you turned them down. But not only did you turn them down, you now seem to be doubling down on your position, which is creating more work for the staff.

Why did you feel the need to bring in the ombudsman for a request the facility made?

I just want to point out to you that when you are unwilling to work with someone now, they will generally be unwilling to work with you in the future.

Mom (and by extension, you) is going to need this staff way sooner and way more than they will ever need her - or you. Just how much do you think they will be willing to work with you, to agree to minor requests, to maybe overlook certain behaviors that they normally wouldn't? In round numbers? I think that's going to be zero.

If you live by the "letter of the law", you have to be willing to die by the "letter of the law". And if mom shows any sort of behavior that can be justified as means for removal from the facility, don't be surprised if that's exactly what happens.

I think you should listen and respect the policies of the facility. There is nothing wrong with a short visit maybe to go get ice cream for an hour. Maybe have lunch at the facility with mom. Get to know the staff.

Your mom is doing what is called showtiming. It actually takes a lot of energy to keep this up. When she gets back to the facility, she is overly tired and overly stimulated and acts out at staff because of it. This may cause comfort to your family to seem like her old self, but she is not. Learn to accept this for what it is. The most compassionate thing to do for mom is to love her enough and let her adjust to her new normal.

What is wrong with attempting a trial compromise to see if it lessens Mom’s distress? Why not bring her home a few hours on the weekend , then bring her back ?

I don’t understand the need to bring her back home for overnights . I agree with others that it may be too long of a lot of stimulation . Think of it as , I don’t feel good after 4 drinks so I’ll stick to 2.

Mom pays for it in the end with distress, ( hungover ). Think of it as a delayed reaction to stimulation . She can’t pivot from her two different homes well .

The other thing is if she’s a sundowner to begin with , bringing her back at that time of the day could be a problem .

Taking her earlier in the day , lunch with family and then bringing her back before evening may help .

I wish you luck , as you continue the overnights .. However , I think I would be trying a compromise to lessen Mom’s distress . What good is it for Mom to live longer and attempt to slow down the progression of the disease if she is so distressed each week ?

What your janitor friend is seeing is your mother in distress not the fight to live . He has no clue about dementia .
The doctors don’t see what she is like when she returns .

"End of the day the moment the staff becomes lax or ignores our mother's care is the day we get the ombudsman and our lawyers involved once again. This is their job they have no right to ask families to make it easier"

These are YOUR mother's caregivers you're talking about. Why would you NOT want to make their jobs easier???

You took care of your mom at home - would you not have wanted someone to help you make that job easier??? Isn't that the very reason WHY mom had to go into a facility?

And please, enough with the drama that this request means that they want you to "isolate" mom. They reasonably asked you stop taking her out of the facility for entire weekends at a time for a visit. Did they request you NOT visit her in the facility as well? THAT would be isolating her.

Do you expect the staff to entertain Mom? She is not their only resident. In Moms LTC and AL there were activity directors who were in charge of activities and entertainment. Mom was in the common room all day because of the activity. I told them not to leave her home alone in her room. Have staff tried to engage Mom and she says no? She can't be made to do. No staff anywhere is going to be one on one with Mom.

I think your expectations are too high. Mom will never get the care she got living with you. My daughter had to tell me what to worry about and what to let go. I will tell you now, you have made enemies. And this facility will find a way to get rid of you and Mom.


Engaging your Mom is not going to change the outcome. Her brain is dying. As each part dies Mom loses abilities. No one can help them come back.

I will be blunt. What you call advocating I call conditioning her future behavior. IMO, you're setting a bad precedent re: today vs the future progression and consequences of the disease.

I quote my MIL when she was locked up. It might provide some understanding of dementia thinking when the base survival instincts start manifesting -- "the angrier I am and the meaner I be means they'll kick me out. I get to leave this hell hole sooner if they hate me." This was right after "I have several good years left. You took those from me."

When it comes to dementia, we'd all like it easier. That's simply not possible. Especially with those that elope.

Assessments and plans are only a snapshot in time. Personally, knowing what I know, I would never recommend using the Attorney/Ombudsmen/Medicaid goodwill trio to die on this particular hill.

I do wonder why so many seem so against what paying is doing. She probably knows her mother's temperament and what she can and cannot handle better than any nurse or care facility.

It appears she and her family have found a solution that works for them. If I have to be frank who really cares if her actions have a negative impact on staff or residents. It is not her job to advocate for them or do what is best for them. Her sole priority is her mother not the staff or other people.

If families have issues they need to step up and advocate for their loved ones. Also, removing people from MC is not exactly the easiest of things. Once in MC they cannot just be thrown out on the streets. Families cave far too easily they still have rights and tbh not sure about other states but in my state to remove someone for no payment is also a process they have to go through standard eviction proceedings like everyone else.

They cannot just dump them at the ER and say unsafe discharge their entire reason for existing is safe discharge.

As Burntcaregiver has mentioned it is mostly scare tactics that people buy into because they don't want to rock the boat. Let's be fair they get our tax payer dollars even private facilities generally get some kick back from the state at the very least. Make them work for it.

If they don't want to work for it then they should stop collecting tax payer dollars and put them to better use maybe subsidize paid family caregiver programs or provide better benefits for caregivers in general to maybe help with retention.

You can either may the same or more working retail in my state verse being a caregiver. Our state for whatever reason also made it so caregivers legally don't have to pay more than 3 dollars over minimum wage. Yet people are Pikachu face when they are understaffed.

I think we should just stop posting to this thread. Seems like Pay is not understanding what most of us have been saying, and we have or now are caregivers, you can't constantly take a person with Denentia constantly out of their confort zone. Mom is not being allowed to get used to being in her new home. She is taken out of the MC back to her comfort zone, then pulled back out. She has no understanding on what is going on. Her brain has lost that ability. So she gets back to the MC and it is all new to her so she lashes out. It probably takes them all week to calm her down, then she is taken back to her comfort zone. This MC is being used as a babysitter not as her home. Once my Mom was in the AL and later LTC (yes I cared for her in my home before that) I never took her back to her home. To do so would have been cruel. My Mom adjusted well to both AL and LTC.

As long as mom isn’t refusing to go back to the mc, she does in fact get those two days with family. MC is not prison, and mom has the legal right to visit family and vice versa.