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I was my mother's majority caregiver for three years, it got a lot for me personally so we all got together to find a placement for her. We did find one and for the last six months we have rotated taking her home for the weekends. She loves it she gets see her grandkids, children, friends, and family but no one single sibling is responsible fulltime. When I went to pick her up yesterday I was asked if we could limit how often we take her out because she resets and becomes rough for the staff.
I hate to be that person but aren't they trained to deal with stuff like that? I do not understand why they feel we should leave her? She loves spending time with us and we all would love to have her be home but I got burnt out and we work fulltime jobs.
Can I just ignore their request? Can they make things hard on us?

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I wouldn't just ignore it.
I would sit down with them and ask for FULL DETAILS as to what a "difficult reset" actually means. What behavior is she exhibiting that is troublesome to them.

YOU love this. SHE loves this. THEY are relieved of her for a weekend. And no one is even asking for a bit off the price of her meals.
I, to be honest cannot even begin to imagine what their problem is.
That is why I would ASK them exactly what problems she is causing them that they can with CERTAINTY attribute to her having love weekends at your place.
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Payingforcare Oct 19, 2024
According to them my mother starts to harass and barge into other residents rooms and becomes possessive of nearly everyone's time. She has no mobility issues and she can be a little sticky fingers.

She also becomes more exit seeking even triggered the fire door a couple of times trying to leave. Based off recommendations we did not visit much at first so she could adjust and after she appeared to adjust is when we started to take her out. In total she has been placed for nearly the year we placed her in Jan.
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This type of request by a MC IS common when the resident comes back and starts exit seeking behavior or displays disruptive behavior, yes.

Why do you not understand that taking your mother out of the MC every weekend causes her to become too disruptive for the staff to handle, and that's not a good thing for ANYBODY, including mom? The staff and the facility itself is your mother's home, and home to the other residents as well. Not a place where you drop mom off when you feel like it, and then expect the trained staff to just deal with her shenanigans caused by having her schedule and routine disrupted. Thats disrespectful to the MC staff.

Furthermore, your mom is exit seeking the MC now bc you're taking her out every weekend! She's not able to understand why she must stay in the MC now when she was just taken out of there for a couple of days. If she manages to elope, God forbid, you'll have a really bad issue on your hands due to confusing your mother with mixed messages her brain can no longer comprehend.

Mom being disruptive may be entertaining for HER, but not for the other residents or the staff who have to manage all the upset residents. Sticky fingers and barging into other people's rooms is harassing behavior in a place where everyone deserves to lives in peace.

That said, the MC can indeed ask mom to leave if her behavior doesn't calm down because you refuse to stop taking her out for sleepovers. Thats really an unheard of thing to do in MC. The next step is you try to find another MC who will accept her with behavior issues due to being taken home for weekends, or, you get her into Skilled Nursing.

Your best bet is to listen to what the admin is saying to you and stop taking mom out of there for weekends. It causes her too much confusion. If you must take her out, go out for dinner or lunch and bring her back there to sleep.

Good luck.
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Payingforcare Oct 19, 2024
She did show signs of being exit seeking even if we would visit her since she would want to leave with us and after we left she would go looking for us. She was pretty much only adjusted when we did not visit but according to the staff she really did not engage with others she kind just watched TV for the most part. Which played a role why we take her out.

She is already in SNF MC cause Medicaid in our state does not cover MC outside of SNF.

I get it may be rude to the staff but what other alternative do families have? Even if we take her and bring her back she will still give them a hard time because she will want to leave with us.

Really only fix to this problem is to not show up. If limting it does not work what is next they tell us to not come at all because she is disruptive to others?

Seems like a weird request I get it though but we also want her to be happy and live life not just exist until she dies. What else can we do if they tell us visiting and taking her out is just too much. Cause even the drop off can be messy because she wants to stay with us and it would be the same if we visit would it not?
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I guess you could hire someone to sit with her during her disruptive periods so the staff isn’t pulled away from normal duties
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These outings are obviously causing your mother to have to readjust to memory care each week . It is causing your mother distress .

Breaking her routine of where she lives is not helpful . Since taking her out at all is causing a problem with a messy drop off then do not take her out at all. This is not uncommon for families to stop taking someone out who needs memory care .

Have the family visit her in memory care instead .
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Payingforcare Oct 19, 2024
That is the unfortunate part she still acts up with visits she becomes exit seeking after we leave or wants to leave with us.
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I do hope that you are aware that disrupting a person with dementias routine is not only very hard on them but also those who care for them. So of course they want you to limit disrupting your mothers routine as it just makes it harder on everyone, including your mother.
Why don't you instead take turns bringing your families to her place and spend the afternoon together? That way it will be a win win for all involved.
Sounds like you may need to educate yourself a bit more about this horrible disease, so you're better prepared for what is yet to come, and won't be so surprised when the facility asks you not to disrupt your mothers routine so often.
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Payingforcare Oct 20, 2024
As mentioned we have tried that she acts up when we try to leave and once we leave she still becomes exit seeking. The visit also becomes more of redirecting her because she wants to leave the facility. Reality is only real way to stop her distress is not to visit and short of cut her off completely that is a hard sell to any of our family.

We 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.

Her routine is watching ION their words. That is all she did when we did not visit so she could adjust. We suggested things we do at home like karaoke does not care. Knitting nothing.

At home she sings, reads children books to her grandkids, laughs, tells the same story of how her and dad met.

It is 100% a night and day difference.
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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.
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freqflyer Oct 20, 2024
Lorenda, good point about each time she returns back to Memory Care it is like starting all over again learning about her current residence.
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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.
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Reply to Igloocar
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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.
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Reply to againx100
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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.
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AlvaDeer Oct 21, 2024
I thought of this, as well, JoAnn, later when I was off the computer.
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.
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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.
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Reply to freqflyer
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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?
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Payingforcare 2 hours ago
It is more so our mothers world is only going to get smaller we are 100% going to fight and foster whatever memory and sense of self she has left.

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.
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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.
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Reply to BlueEyedGirl94
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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.
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Reply to NeedHelpwMIL
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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’….
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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.
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horticulturist Oct 25, 2024
My mother's MC was also very warm, because the residents are usually much colder than more active adults are. Older people naturally are much colder, but inactive people are also colder. Both those things apply in MC. I'm sorry for your discomfort. Maybe you could visit with your loved one in their room and have a small standing fan pointed toward you.
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Bring the family to visit your mom. It may be more detrimental to your mom to be going back and forth.
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Reply to Onlychild2024
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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.)
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Reply to swmckeown76
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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.
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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.
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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.
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Reply to JuliaH
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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.
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Reply to my2cents
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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.
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Reply to GGDHelp
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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.
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Payingforcare Oct 26, 2024
No we cannot afford AL, and due to her Medicaid Assessment she does not qualify for medcaid assisted living because she is exit seeking when left alone. We cannot afford to pay for additional support.

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.
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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.
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Reply to Grandma1954
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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.
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MargaretMcKen Oct 26, 2024
If it's fairly clear that M is not really 'memory care' material, and taking her out is being disruptive to the memory care routine, the facility may terminate her occupancy. Especially if she is on 'affordable' Medicaid, she walks into private rooms and has 'sticky fingers', and the family's co-operation with solving the problems is to say the staff should be "trained to deal with stuff like that".
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I'm in the majority here, maybe because I have a deep appreciation for the value of routine.
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Reply to landscaping
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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.
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 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.
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WTFchoice Oct 27, 2024
I will say if our society is insistent in prolonging the lives of those that have progressive terminal illnesses that currently have no real viable treatment options outside of bandaid and treat the symptoms or throw large amount of man hours towards the issue.

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?
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IT IS 1,000,000,000.00 WRONG AND IT MAKES ME WANT TO VOMIT!
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Reply to Zmom1940
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I wouldn’t cut down on the time you visit…but I’d have more of the visits be at the facility.
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