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.