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Our mother is in late Stage 5/early Stage 6 Alzheimer's dementia. She's mostly confused and makes no sense, but she can "turn it on" for brief periods and sound relatively OK, although what she says/reports is likely false. She is in the best facility around, well cared-for, and with 3 of us adult children making great efforts to get her to appointments and get the treatment that she needs.


In the meantime, Mom manages to contact people who are barely acquaintances, and who have no idea about her real condition or day-to-day life (for example, she regularly calls 911 from AL to report that "they are killing her" and she is "about to die") who then do stupid things like take her to her home and leave her there alone (she can't cook and has left the gas stove on) or, this week, canceled her doctor's appointment and scheduled with a new doctor who has no idea of my mom's history, and clearly did not read her chart. (My mom has severe anxiety and is in pain from chronic sciatica, and the new doc sent her home with B-12 and D vitamins!!! SMH.) Today, my MD brother came to pick up Mom to take her to the appointment that he had scheduled for her (and taken a day off of work to accompany her) only to find that this "friend" of mom's had canceled it because our mom told her to. This friend has zero idea what is actually going on.


I'm not sure there is a real solution as Mom will just call someone else she barely knows and convince them that her children, the AL facility, and doctors are in a mass conspiracy against her. I'm just frustrated as hell and wonder how others have dealt with this.


My mom is truly in the best facility in the area, is given a lot of support from the facility, and has attentive children, even if we can't be there 24/7. (As a side-note, she relinquished her financial POA to her accountant because none of her bills were getting paid although she used to have a 800+ credit rating.)

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Is she reaching them by selecting the name in her contacts in the phone or does she have a written list? If she's using the contacts, can the names of the nosey nellies disappear?
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Oskigirl Apr 2019
She has a little address book (the old fashioned paper and pen one). She couldn't figure out contacts in her phone. :-). She goes down the list and contacts people that are acquaintances and tells them we aren't taking care of her, that no one at AL is taking care of her, etc. She says she hasn't seen a doctor even though she's been to the ER three times now in 2 weeks and nothing is wrong (other than the the ALZ). Couldn't pry that address book from her, unfortunately.
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Unfortunately the canceled doctor's appointment was the one where we were expecting that the doctor would confirm that she cannot make her own health decisions, in which case my physician brother would be the POA. That is what was so incredibly frustrating as we are back in this limbo until we can get her to the doctor again. Thanks
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Seems to me like your mom at stage 5 or 6 needs to be in memory care. Memory Care units typically keep a list of people authorized by resident's POA who may visit and who may not, as well as people who are authorized to remove the resident. An arrangement like this may be the solution to a very stressful situation!
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Oskigirl Apr 2019
I toured the Memory Care at her facility and they seemed mostly non-verbal/catatonic. She still has a bit before she gets to that, but I think it will be sooner rather than later.

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Lose the phone or take the battery out and tell her its broke. Tell the desk she is not to use their phone. She is abusing it. There is no reason for her to have it. The AL has to call you if she gets a finger cut. Moms POA is in effect. Use it. Have a list of who can take Mom out of the facility. Call her Drs offices and tell them you are the only one who can cancel or change appts. Don't tell Mom she has an appt until the night before if then. My Mom found out when I came to pick her up. I had made the staff aware.

My Mom was in an AL they didn't separate those suffering from Dementia from the general population. The door had a keyboard lock. Only those who could come and go new the code. They did not allow Dementia people out of the facility. They could be sued.
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Is she using a cell phone to call out or the facility's phone? If it's her own phone, I think there are phones designed to only receive calls but not let her call out.
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Oskigirl Apr 2019
She's using her own phone. She can barely manage it, but somehow still knows how to call 911 and call others who she thinks will do her bidding. It has been a game of "Whack-A-Mole" to contact those people and have them stop meddling. Most are on board, but then she just reaches out to others. I'll look into how we can limit her ability to call out.
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It's frustrating when distant friends try to insert themselves in the care-giving process and can even be dangerous. We've dealt with similar things and handle them one by one with a direct conversation with whomever is nosing in where they should not be nosing in. It sounds as if you mother may be in need of more care than she is currently getting in an assisted living facility. From what I understand of assisted living they are there to help only. Usually the care they provide is very basic and those living there are free to come and go as they choose. If she is as far gone as you are saying then it may be time for memory care or a full care facility of some other kind.
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Oskigirl Apr 2019
We are arranging additional care/supervision. Her AL does that for people with dementia who aren't quite "ready" for the Memory Care area. We are exploring the options. I think we'd have a full rebellion if we took away her phone (and computer). We don't have POA over her healthcare. Yet. That is what the canceled doctor's appointment was going to establish.
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It seems like the problem here is that these folks are allowed to take mom out of the facility. And cancel appointments on her behalf.

I'd get in touch with the doctors who are dealing with mom and have a note made at the front desk that NO ONE but you (you have medical poa, yes?) is allowed to cancel an appointment.

Second, you need to work with the SW, DON and the doctor at the facility to make sure that your mother is not allowed to accompany anyone but one of you out of the facility. They may well tell you (and this would be true) that the facility is not a jail and that your mother cannot be prevented from leaving. Unfortunately, that would mean that you might need to sue for guardianship and/or move her to a secure Memory Care unit.

But please discuss this with the facility and mom's lawyer.
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