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