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

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.

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'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!

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 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.

I wouldn’t cut down on the time you visit…but I’d have more of the visits be at the facility.

IT IS 1,000,000,000.00 WRONG AND IT MAKES ME WANT TO VOMIT!

 Answering a question ‘drowning’ in the answers to my last post: “Isn't that a system issue? If they had more options outside of SNF MC or bust, then people who are not really a candidate for SNF MC would not be placed in such places”. The answer to that is "will YOU pay more taxes"? Assisted Living is very expensive, and it generally isn’t government subsidised. It aims to look really good, not just basic. Make it cheap or free, and yes a lot of people would move in.

OP says “we all ...work fulltime jobs”, but they have still opted for care that is medicaid-subsidised. Perhaps the trade-off for them all is helping the facility to function the way it is intended to.

I don't think bring her home is a wise choice. Her Dementia will worsen and literally, it can happen overnight. I have seen a women who was doing OK being on her own with our Nurses checking in on her and family members till one day she would not allow the Nurse into her house. She kept saying that she was not at home. Its called an episode according to the Nurse. Family immediately had to find her a place.

We've heard it many times here that one child agrees with a parent staying with them as long as everyone else pitches in. All goes well until the excuses start and the help starts backing off leaving the one who has the parent now doing all the work. You placed Mom for a reason don't forget why.

I'm in the majority here, maybe because I have a deep appreciation for the value of routine.

I'm going to be in the minority. Take her out when you want to take her out.

There will be a time when you can no longer take her out.

Think of what this does to mom when you take her out for a weekend.
She has to get back into a routine that has been disrupted by y'all taking her out.
If you and the family would like to visit en masse then go visit her.
Sure you can ignore the request to limit the times you take her out but if by taking her out it disrupts their care and she becomes more difficult or depressed then they can ask you to find another facility.

Reading Margaret's response I agree, it does not sound like mom belongs in MC, Assisted Living maybe.

I read from the beginning about how much you would love to have her home with you, and how much M loves coming out with you (‘loves it, she gets see her grandkids, children, friends, and family, sings, reads children books to her grandkids, laughs, tells the same story of how her and dad met etc’). You “already feel bad enough that we cannot take care of her at home despite having so many hands because our jobs do not allow us to do”.

It reads to me as though M does not really belong in Memory Care. You can’t or don’t want to pay for the most appropriate level of care. You are taking her out so often because YOU feel guilty.

The staff are not the ones causing the problems. This facility is not designed for your mother and your family issues.

Please bear with me for I am not eloquent with my words but I tend to agree with the others giving you advice.
I am so sorry for what your family and your mother are going through.
I have been dealing with my dad for at least 6 years. 3 have been in the nursing home.
We helped him to stay in his apartment as long as we were able to safely. I also moved him into my house so he was able to be with his family and familiar surroundings.
He didn’t do well with any of the choices we made because he still is lost inside.Their mind and thought process changes constantly. We are no longer dealing with reality as we know it.
They no longer know what they want and what is best for them.
You chose the care center because you knew it was beyond your control anymore. Now you need to trust your decision to help your mom and that you made the right choice.
You can’t change your mind and go back and forth with her. Her mind isn’t strong enough to comprehend what is going on.
Everyday & every minute my dad changes his thoughts and emotions .
But I do know, the more changes in his routine, the more he suffers. He is unable to comprehend what is happening and it scares him, making it more difficult … not for the care center or you but for his own peace of mind.
There isn’t any logic to dementia, we don’t control it, it controls you.
You have to make a very difficult decision to trust someone else that is trained to look out for her best interests. That is why you chose them in the first place. They are not a daycare center, they are trained to give your mother the care that she needs.
My thoughts and prayers are with you. It is a long and difficult journey. The dementia doesn’t get better , it will only get worse. The only thing we can do is make them as comfortable and safe as possible. The care center is there to help you and your mom through dementia. You need to trust the process.

I would take her home as often as you can. Then take turns going back to facility to see how she's doing after a few days at home. If she still enjoys being around family in her own home, why take that away from her.

Ask them what they mean by 'resets' and getting rough with staff? Maybe she just complains to them about wanting to be at home and they should be able to deal with that.

My mothers MC had someone who kept going into others rooms,terrible. Mom's room was at the end of hall where the fob was needed to exit, they thought going through her room was the way out. My mother became bedridden and there were poops floating in her toilet! Wasn't her,what the heck! It finally got to the point where I requested her door be locked as everyone had the keys to get in anyway. I got worried because mom couldn't defend herself. With her dementia she thought people were taking her things, that stopped that fear also. I'm sure they don't want to lock your mother in her room but it might come to that if she doesn't settle in. If the staff has requested your help, please help. I'm sure you placed her for her own safety and they're trying to keep her safe and free to roam around her community area. She is not the same person you know and love,that person is gone,just loving memories. She has a disease that progresses and you can't fix it. Thinking you can make life better for her is not sensible,it's denial.

Payingforcare: The staff and administrators at your mother's Memory Care facility understand the importance of routine for a patient (your mother) with dementia. You could be upsetting the routine.

Boy, been in your shoes. I.do understand your feelings but, also from experience, I understand the staff too. My mom for a time, could go out and it was fine. The more her dementia increased the harder it became for her to adjust to going back into the facility.and made it more difficult for staff and my mom. Best of luck and God Bless.

Why not just bring family members to visit her instead? Or just take her home and out for other things for a few hours and not overnight. I took my late husband with frontotemporal dementia to church, out to lunch, to view sporting events in a sports bar where we'd eat and he could have a beer (not allowed in his long-term care center, but they said if we sat in lawn chairs off their grounds in a nearby area they couldn't prohibit it). I also took him to our long-time dentist and optometrist as long as I could get him into my car (they did a much more comprehesive job than the ones that visited the facility). I even took him for haircuts at the salon where the woman who visited the facility 2x/week for haircuts because she made more money there than what she charged at the facility and we could afford it. He would sometimes ask about going home, so I drove him to the house where we lived before downsizing to a condo (where he only stayed until requiring long-time care). I said, "See, there are children playing in the yard and they have a dog." (We didn't have a dog, but had two cats.)

Bring the family to visit your mom. It may be more detrimental to your mom to be going back and forth.

I have to say I think every case is different. My mom has been in MC since Jan 2024. My sister and I have been taking her out 4 or 5 times a week to eat dinner or grab a drink or run into Dollar General. She loves it and she is also happy to be back to her home. My mom is very "happy" at MC but I have no doubt that if we never got her out of there, she would deteriorate so quickly into the state of the other residents there. I know she will eventually end up living almost like a shell of a human being but I intend on helping her delay that for as long as possible, If she had problems readjusting, I would reconsider but thank God she is not unhappy to return. As for the idea that taking her out is purely for my benefit, that is just not the case. It is hard work when i take her out. Like really hard.
So I think you need to follow your gut. I appreciate that I am in the minority here and I am dreading the day every visit will be in her MC unit for the following reasons: 1.it is always so hot inside there! I get why but sometimes it makes me feel ill 2. The random moaning or screaming can be disturbing 3. I am nervous when the other residents want help with something, like standing up or going to the bathroom and I try to find someone who works there because I don't want to be responsible f\or someone falling but it is hard to not just help them 4. Her MC smells as fresh as any MC can but there is always a note of urine or something that cannot be masked 5. Again the heat makes spending time there really unpleasant. Probably my age or something.

Yes! MC recommending this because it is in your mom’s best interest. They want to be able to provide a continuity of care for her and these away for a weekend visits totally disrupts this.

Please pls reread NotGoodEnough, JoAnn’s & BLueEyed very thoughtful and written from experiences posts.

Something I’d like to add…. If in the future your mom’s level of care gets beyond what this MC can do, the next step is a NH / SNF. For NH away overnight not medically necessary visits are called THV aka Therapeutics Home Visits. There are regulations regarding THV and if they exceed the allowed “away time”, bed-hold will be revoked. NH have to pay close attention on bed holds, both for THV away day’s and also for hospitalization away times. Neither will be allowed indefinitely. Timeframe depends on your State.

Like my State, Louisiana, allows for a 7 day hospital related bedhold & 15 day annual maximum THV days bedhold. So if in a hospital 8 days, NH bed hold stops and considered discharged by the NH. 16 days of THV considered discharged by the NH. Discharged with their room cleared & bed totally available for next person on the NH move in list. The only option family has to get beyond this would be to pay full tilt private pay rate for that NH bed.

Why - to me - this is important for you to be aware of, is the NH will get the MC notes. A NH will see in the notes that every week this family coming over to take mom away for overnights and every week the MC is dealing with getting mom resettled to the rhythms of the MC even though family has been asked not to do this. It’s a red flag. A NH, if they have 2 choices of future resident, may opt to take the other one. Just sayin’….

Is it possible for the family to go to her at the Memory Care facility?

They generally have conference rooms or larger gathering areas that can be reserved for larger family visits.

I am sure she loves the company and attention and benefits from the opportunity to stay connected via frequent family visits.

We had a doctor advise that every single time you move a person with dementia from one place to another - you are compounding their agitation and frustration and confusion. And each and every time it gets harder and harder for them to move.

When you say "trained to deal with stuff like that" what do you mean? If she were coming and going with no issues - I highly doubt they would be asking you not to take her out. While yes, they are trained to deal with additional agitation and changes - perhaps they are more concerned with how it impacts your mother to return.

For a patient with dementia - it is entirely possible that each time she goes home - she is happy and content and enjoying her time because she thinks she is going home permanently. And when you return her to the facility - she has to start all over again with processing that she isn't returning home at all, just visiting. And that is frustrating and upsetting for her.

I can certainly understand where you're coming from - you want to take mom "home" on weekends, because she seems to do really well and really enjoy herself.

That's 2 days out of the week.

I have to think if the facility is requesting you NOT do this - that is, take mom to your house every weekend, thereby giving a likely weekend-short-staffed facility one less person to have to take care of for those 2 days, it's because your mom is so overwrought once she's back that it's harmful to her. At what point do you decide that her "happy" time is being outweighed by her "agitated" time? If she's agitated for one day after? Two? Three? When is it "too much" agitation?

You asked about the facility being trained to "deal with stuff like this". Well, I think of this example - an ER is trained to deal with a toddler who has burned his hand because he grabbed something hot off the stove, but I would imagine most ER personnel would express it would be far better if that toddler had never burned his hand in the first place.

Are the few weekend hours that your mom is happy at your house worth the hours she spends agitated once back in hers? Even if the facility is able to calm her down relatively quickly, why do you feel it's a better choice to put mom through this every single week?

I don't expect you to answer this question, and I fully expect you to be really angry at me for asking it, but I'm asking it anyway - are these weekend trips more about alleviating your "guilt" for realizing mom needed more care than you could provide for her in your home, and so you did what was necessary for mom AND you, and placed her?

Payingforcare, welcome to the forum. Even though my Dad was a sweetheart, easy going, and was loved by all the Staff members at his senior living facility, I knew that "routine" was the best for him. An occasional outing for doctor appointments were fine.


One time while visiting my Mom at a skilled nursing facility, it was Sunday night and some residents were being brought back to the facility from having a day out with relatives/friends. I sat in the common room and saw how difficult it was to get the residents ready for the night. I heard one flustered RN say to herself "Jesus, give me strength". So unless you witness the aftermath of elders "routine" being disrupted, then and only then will you understand what the Staff has to go through.

With a Dementia, people do better in familiar surroundings. Their world becomes very small. And they live in their minds. We would take my Mom out and she was ready to go home in an hour.

This is so hard to explain. Your Mom has become like a toddler. She has no understanding that you are taking her home for a visit. Then u turn around and take her back to this strange place. Yes, even after 10 months its a strange place. Dementia does not allow for this back and forth. They don't adjust well. Like said, you bring the people to her. She has to come to a point, this is her home, her safe place.

Part of the issue is probably that many/most MC residents do not get taken out, especially for every single weekend. So, I bet the staff is really not that used to the retraining that has to be done every time they come back from being "home". I guess it's kind of like what you hear happens with kids of divorced parents. with shared custody. It can take days to get the kids back on track after visiting with the ex.

I'm replying to something you said earlier a few times, in case you are still reading. You've mentioned that if you leave your mother alone she'll just watch TV. You also mentioned that the activities she was offered were not very stimulating. I am wondering if this is typical of memory care in general or if hers is especially weak in this area. In assisted living and even in the non-memory care SNF, there are usually some good group activities, which may include group trips outside the memory care. Does her memory care offer more interesting/challenging activities than the ones you have mentioned? If so, while the memory care staff can't force her to do this, you could ask them if they could put more effort into getting her to participate in some of these activities.

Alternatively, at this time, perhaps she does not yet belong in memory care, based on what you've said she does when she's home. If I understand correctly, you would have put her in assisted living memory care if it were possible, but since Medicaid normally does not pay for assisted living, she has to have memory care in a SNF. Perhaps she could be reevaluated to see if she could move out of the memory care and into the regular SNF location there. There would almost certainly be more activities, including some physical activities, than it appears are available there. You've mentioned she's talkative, and she might have more people with whom to talk if she were in regular extended care.

I wonder if your mom would eventually begin to engage more if she didn't get disrupted. You mentioned she has now been at her current home for 10 months or so. While that seems like it should be enough time to our thinking, brains work differently depending on what ails them. Plus, she has had so many times away from her current home that it may become brand new to her each time she returns to the facility. If you give her a good long while to have to get used to her current home and her neighbors, she may form relationships with them that do not involve sticky fingers (something her neighbors may not appreciate right now). Cognitive issues are so hard. But why not be more patient with her (even if she looks like she is not engaging for a long time) and the experienced people at the facility? Heck , you may find that you can even let go of some of the possible guilt you might feel for needing to place her somewhere safe - if only you all take a much needed, extended time out. Things are so dire when we are in the midst of things. If you step back, you could give their recommendation time to work. The time just likely won't be aligned with the time of people without these types of cognitive issues. Good luck and may everyone find peace.