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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.
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.
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!
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 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.
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.
Yes I would 100% agree to pay more taxes. Something has to be done. This is not a problem we can hope that will not get worse our nursing homes are already under staffed and over booked we need to take some action either accept the possible abuse that would come with right to death laws or we raise taxes to the point where we can afford to provide proper care for our elderly. Not leaving the children and families of loved ones with this disease holding the bill with little support because they don't meet strict guidelines that often go against what many medical professionals feel is proper care.
We are all told that families should not use their own money to provide care yet when families do people are quick to tell them they should not care..
The choices presented when it comes to this disease are often bullshit. They are largely a series of horrible choices and you have to pick the one you can stomach the most.
We cannot suggest families avoid using their own money then bash them or question why they complain when the subsidized care is sub standard. The care should not be sub standard no matter where someone goes. Healthcare ideally should not be a for profit venture. I get it profits drive innovation and progress but does not make it right.
Maybe it is time we raise taxes to a point where we can back up all the talk and suggestions like one should never use their own money for a family member that is poor put them on Medicaid. Fine let's do that, time to make medicaid care great then. Those who are poor deserve the quality of care of those who spend 20k a month.
If we cannot make that a reality maybe it is time we just speed of the dying process for many of these people cause what do they have to live for?
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.
There will be a time when you can no longer take her out.
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.
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.
SNF MC is all that she qualified for based off her Medicaid assessment. Sadly, I burnt from being her primary caregiver before her needs progressed.
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.
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.
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.
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’….
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.
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.
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?
I refuse to let her rot away watching ION and playing bingo every single day.
Sure it may be a weekend but it is a weekend of memories we will have forever long after she is gone.
End of the day I rather have more or the weekend memories over hanging out in a deary nursing home. As others have said nursing homes are depressing places.
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.
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.
Really, the family does no favor to someone with dementia by disrupting the environment. It causes agitation and increased confusion. The difficult readjustment that this family is creating for their loved one, while well-meant, could be doing a real disservice.
Your point is so well taken, and may be one of the most crucial point to consider in deciding whether or not to continue this.