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She is always miserable, negative, uncooperative and has no quality of life. I stopped in to see Mom at AL today. When I walked in the room, the smell was horrible - she again had diarrhea - and it appeared she did it in her pants and all over the toilet. She had all the windows open and the air conditioner going full blast. Her slacks were in the garbage, her shoes and purse on the bathroom floor next to the toilet. (She has the runs a lot because she ruined her bowels with milk of magnesia) She has depends and pad, but doesn't use them all the time. She refuses help in AL, refuses to shower too.

Worst of all SHE LOST HER HEARING AIDS AGAIN! This is about the fifth time. These aids were only 3 months old - cost $3500. Just two weeks ago I took her to have them calibrated and he fixed all the problems. The AL aides put them in in the morning and take them out for her at night because she can't do it. NOW SHE IS COMPLETELY DEAF! Whining, crying, on and on. She has diarrhea when she gets upset. They said they have looked everywhere for them and can't find them, don't know how they could be lost between the time they put them in and took them out. Heaven knows how she could have lost them unless she took them out and threw them away herself. And what upset her the most? She didn't want them to know because she is afraid they will put her somewhere where she will have to do what they tell her to do. Of course she doesn't remember they were in her room yesterday, looking for them. And they were also in there because she had the runs then - claiming she was embarrassed because "it has never happened before" HAH!

She is in such a nice place and it is so sad she is totally uncooperative, we can't reason with her, she won't accept help) I'm so afraid she is going to be kicked out and end up in memory care walking around deaf and raising Cain because she is locked in and "taken care of".

We can't keep this up, buying hearing aids for her to throw away.
She is almost 101, mobile, able to dress, go to the bathroom, do things for herself. That is what makes this so frustrating, this is nothing new - even before the dementia she complained constantly, wouldn't accept help, etc.

This has not been a good day - just learned my dear, kind, wonderful brother-in-law is in hospice, dying of a brain tumor - a man who loved life and was loved by all. And here is my 101 year old mother - creating misery for herself and everyone around her, especially me - it doesn't seem fair that the one who lives is the one who is never happy.
I even brought my sweet puppy, who jumped up on the bed and walked up to her, wagging her tail and giving her a kiss - and she elbowed her out of the way.
This has not been a good day!

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AmyGrace: Is Grace your middle name, if so it certainly fits you. You bear your burdens with a great deal of grace, patience and kindness. You are a role model for me and I bet others here, too. You are doing a great job with very difficult circumstances and getting up there in years yourself. We may not be the 'Greatest Generation', but we can claim to be the butt wipers for them, huh? :-)
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I'm so sorry for your loss on your brother in law. Life doesn't seem fair at times. I guess we will figure out what all of this means some day. Hope so anyway. Also good luck on your 3 week trip. We went out of town for 7 days....well, supposed to be 7 days but was cut short because I needed to come home early due to my dad getting sick and no one else to take care of him in his apt. I'm the only one. I hope it's a wonderful get away.
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AmyGrace, my heartfelt sympathy to you and your family regarding your brother-in-law.

Maybe it is time technology went back to when there weren't any hearing aids but one would use an ear trumpet that one would hold up to their ear. Of course, a person couldn't do that all day, but only when someone wanted to talk to them.

Just think, these things are too big to roll up in tissues, or flushed down the toilet, or stuff in a pocket. They could come in all colors and patterns.

I am serious here, too many elders losing hearing aids because the the small size and the fact the elder wants the smallest size so no one would know they need a hearing aid. Maybe start a new fad among the elders with these trumpets :)
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Sometimes just being listened too and supported is all one needs. I've been learning that there may be things my dad chooses to do that I don't agree with or is best for him but I don't fight it. If he's not in danger, so be it. I'm not in control of it, so why get myself worked up. I don't fight every battle. I think to myself sometimes, "if he didn't live near me, like in the past, and I didn't know what was going on, he'd still survive. I can be responsible to my dad but not for him. That has saved my sanity many times over. Good to hear that things are somewhat better now.
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Amy, that is so hard to have to deal with this and the loss of a close family member. My heart and prayers go out to you. The only other thought is having more of a cognitive evaluation done if you would be willing to consider getting a guardianship, which might or might not make it more feasible to insist on some of the common sense things you need her to be required to do. There may or may not be anything you can do about the whining and negativity at this point - personality plus widowhood plus depression she won't accept treatment for, plus dementia don't add up to anything good! Your devotion is a real gift even if she never seems to appreciate it for as long as she lives...
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Hi everyone,

You are all dears, very wonderful to have so many loving people who understand and thank you so much for caring and responding. It helps just to be able to let off steam.
This is what I did. Today I went back to the AL and took my mother to get ear impressions made. The new aids have a warranty for replacement but we still have to pay 25% of cost plus the ear molds. We are not paying $200 each for a 1 year warranty on each one. No way!

Mom is unsteady and weak but I got her into the car and up the audiologist's ramp and we got it done. (she refuses to use a walker, only a cane)

She has two old hearing aids, one doesn't work and the other barely. That is what she has to use until the new ones come in. Impossible to explain that to her, no matter how many times I tell her (or write) it is her fault because she lost the new ones. I give up!

I tried yesterday and today to talk to the executive director, I even asked him to call. (He is avoiding me, thinking I am going to complain about the nursing staff or to sue them or something. I have no respect for his cowardice and I had no time to hang around and try to catch him again.) Instead I had a long talk with the head nurse. It seems (in our state, in AL, she explained they cannot take the aids forcibly from Mom when she says no - it is a violation of patient rights. Nor can they force her into the shower against her will, so she just stays dirty until such time as she stinks, and then either my sister and I force her, or she gets put into the mental care or nursing home system). She told me Mom has been refusing to let the aide take them out or take them away and they can't, by law, do it by force. Mom is refusing them, although they try every night. That is why she had them and lost them. She says she needs them in case the phone rings (which she doesn't answer anyway.) It is the same thing with the walker, which she desperately needs - they give it to her, and she throws it out in the hallway, they can't force her. NY stinks with its "human rights" laws.) What I was trying to find out from that jerk exec director is if there is some legal paperwork I can get to give them authorization to simply take the aids away at night, but I haven't found that out yet but I will. I have a lot of lawyer friends, and I'm sure I can get some sort of guardianship papers.

I explained to the staff that this is the way my mother is. yes, she has dementia, but she has been a stubborn difficult, selfish, fidgety person forever. If she doesn't want to do something she wants her way. That is her personality more than it is dementia, which just makes her worse. I explained that because she has never had any interests or hobbies, she rambles around and fidgits with things because she has nothing to do, which is why things move around in her room and she puts her hearing aids in different places. She doesn't even watch tv or read any more. She goes to events and then leaves in the middle because she doesn't pay attention. The beautician told me she can't give her a perm because she is too fidgety now. Of course the dementia makes it worse because she has no short term memory. She absolutely refuses to accept she needs help and she is totally uncooperative.

I did my best to befriend the nursing staff, not blaming them, but explaining that Mom is very very difficult and selfish and she always has been and she has given us a hard time for 20 years. (For example, she refuses to wear anything but blazers and button down long sleeve blouses - guess who has been doing her ironing for the past 10 years! I try to replace them, but she is 90 pounds with a hump on her back, and I have to scour the nearly new shops. And she will wear the same filthy clothes for weeks. She may have a closet full of clothes but only certain things she will wear. AL has to get them off her and wash them and she grabs them back up and puts them on again. So, they wash but I end up ironing the blouses because she is too lazy to hang them up - she is capable of handing them up but throws them on the floor or leaves them in the laundry basket.

We also conferenced with the aides, very nice women, and all agreed, that for the next week they will tell her whatever they think might work at night - that 1)they need to take them to clean them every night or 2) resort to telling her its the rule they have to keep them at night if she wants to stay there. Hopefully, they will convince her so that by the time the new ones come, she will hand them over. I've told them that if she loses the new ones, thats it, she will be deaf because we are not getting one more set.

Also, once that has been settled (hopefully) we will have the doctor prescribe a walker and she will be sent to occupational therapy to learn how to use it. Then I am going to put a big sign in her room - use the walker or you will be kicked out of here (well, not quite that mean, but.......)

She is not quite ready for mental care - she can get herself up, dressed, make her bed, get to meals, etc. And, we can't afford the memory unit there - we would have to move her to a cheaper place - and frankly, we are all seniors ourselves, I'm exhausted, my sister is grieving - Mom is relatively happy there and we simply don't have the energy or desire to move her again so soon and put up with the cr _ p she gave us all in Feb. Since she is healthy and mobile and self caring, she is not a candidate for a nursing home.

I'm sick of her, sick of her selfishness. I'm sorry she has dementia and I try to accept and be kind to her because she is old and feeble, knowing she is worse because of it. But the truth is, she has been a wet blanket at family gatherings for 20 years and a whining, negative pain in the neck forever. I have never quite understood what makes her tick - she has mental problems obviously. When my Dad died of cancer, she was 59. She took care of him, was a devoted wife, but less than a month after his death she was sleeping with a friend of his because she was in such desperate need of a man (not sexually) but emotionally.
Mom's diarrhea is under control - she gets it when she gets upset, or her routine is disrupted and because she abused Milk of Magnesia for years.
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Just double checking on the diarrhea...has she been checked for C Diff? It gives folks bad diarrhea and is hard to cure.
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I will say some prayers for you. So sorry about your brother-in-law. Life is not fair. Please take care of yourself. It's always hard to get ready to go away, but it will do you good. You have a lot on your plate.
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3 things.....

1....If she's in assisted living or even Dementia/alz. facility, while she is asleep, other residents can be coming in and taking things, not on purpose but just because it's there. They wander at night. My mother used to be a pacer before she fell and became wheelchair bound. Would get in bed for about 30 minutes, get back up, wander, go back to bed, 30 minutes and so on. Many times I would find her "empty" red purse (we kept it that way but she loved it) in someone else's arms. It's possible someone came in and took them.

2. I completely understand about the hearing aids. My dad has worn them, had trouble with them and when he does it's miserable. He's also pretty deaf but if I yell loudly enough he can hear and forget talking to him on the phone. I would definitely look into hearing devices from radio shack. Yes, I know they won't be great but they might help enough for people to communicate with her. There are different ones and you would just have to go on the website and see.

3.....I would be livid about the diarrhea issue and her not being cleaned up along with her bathroom. You/she is paying for that and that is not being taken care of. Plus, I'm sure the smell is seeping out into the hallways or will. I would charge down to Director or Nursing along with the Director of Facility and voice my concern that my mother is not being watched or taken care of. And yes, my dad just got over 8 weeks of diarrhea but the dr. gave him a prescription that helped a little BUT what we found that really helped was probiotic pills. One a day. Seemed to fix him right up. My mom is in alz/dem. facility and the aids are so good. My mom might have to wait a bit to be changed but if there was a problem they would jump on that RIGHT away. You said it was a very nice place and I hate to say this but you might have to look elsewhere for you mom if they can't handle her or her situation. It might be that aids are understaffed and can't keep up.

I'm really sorry about your situation along with your poor brother in law and wish you all the best in getting this figured out. Good Luck and God Bless
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Amy Grace: I've been through all of this. My daughter's 69 y.o. MIL loses her 2 aides all the time or if she does find them, she refuses to wear them! My late Mother, whom I had to live with for the last part of her life in Massachusetts (I live in Maryland and sure, I had a life!!) had lost her olfactory sense. I was wondering why I had to wipe up the pooped-up bathroom floor EVERY morning and I had to wipe up the toilet seat BEFORE I COULD EVEN SIT ON IT! Then I found her hand-washed underwear drying in the bathroom towel rack. I asked why she had washed them (she washed them repeated times). Her response=O! She was waiting too long to get to the bathroom and also she had a shower seat in her shower stall so guess what didn't get washed? Yep, her butt! But we have to remember that these are the elderly that we're talking about. Get some of the concentrated room sprays sold at Bath & Body Works (Slatkin & Company brand name) or at Yankee candle stores. They cancel out the toxic odor quite well, but be careful to pick a good scent. Plus, get your Mother some Imodium to squelch the diarrhea.
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When husbands Aunt was in a NH the nurses took heer aides to the nurses station at night bringing them backin the morning. His Aunt constantly played with them. To the point she couldn't hear. She wasin her 90s. I wouldn't buy another set. I would ask about the ones that stay in the ear but I hear they r expensive. The AL in my area has an Alzhemeimers/dementia section. I think ur Mom needs more help than an AL alone can do.
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AmyGrace--
I am so sorry to hear of your dilemma--I too do not get why some people hang on forever--when young beautiful souls seem to go too soon. (I have recently lost 3 very young friends--yet mother, who is willing to go, hangs on....)
As far as the HA's--yes, if you are PAYING for this kind of care, the aides should be removing them and taking them for safekeeping. They cost as much as a diamond ring!! My old client would routinely lose her glasses--every single day. And I only worked 3-4 days a week, so unless it was a day I was "on" she walked around w/o her glasses for days on end. I have a knack for finding stuff--and this family (she lived with a daughter in what can only be described as a mansion) would never do anything for her care besides providing meals...so every Monday I KNEW my first task was to find her glasses. Which I did. Every single time. I have no idea how they got some of the places they wound up--and hearing aids are really small. I think the idea of the magnet *may* work, but it does not seem unlikely that she may have flushed them away. Do her linens go out to a central laundry? They could be tangled up in the bedding? They could be between the mattress and box springs...arrgghh..now my OCD for losing stuff is kicked into high gear.
As for the bowel issues...oh wow, yeah that generation was obsessed with regularity. My lovely Grandma used to ask to tend my babies for a couple of hours. She was so amazingly capable--and she would always report to me if the baby had moved their bowels. I sure didn't care--so, Def a generational issue.
I wish you luck. I know you don't want to move her to a "higher level" of care, but, I think you might be there. Losing hearing aids and having massive diarrhea episodes that she can't control--those are signs that she's ready, maybe to move up a step--a yes, it's unbearably expensive. So sorry. I truly wish I could come look for those hearing aids for you!! (At least she's not living with you, right? That's some solace........)
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fist off, sorry about your loss.
2nd, I am surprised you mom isn't in NH.
This will help in hygiene areas as she won't do it herself. For her own health you may want to consider this.

My mom goy

Hearing aids...I have been in the same exact situation.
I found two solutions but these are no guarantee either.

I got hearing aids with a replacement guarantee. One time only.
The hearing aids I got were ordered with a little cord attached to them. At the end of the cord was an alligator clip. I would pin the clip on her blouse collar or behind her head. Think of when you were a kid with mittens and mom had these clipped to you coat so you won't loose them. I asked the hearing aid place what did they do for 4 year old children that needed Hearing aids, This was it.
I also suggest getting hearing aids built into her glasses. I assume she wears glasses at her age.These are built into the frame behind the ear. For some reason mom never forgets her eye glasses.
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Your Mom most likely took them out herself & now does not remember.
My sister who is only 71 & has Alshimers has drowned her one hearing aid twice & her hearing aid for her other ear keeps hiding it.It istoo costly to have them fixed all the time. I have placed her in a home & she just talks loud now-- I am not spending that kind of money to fix her hearing aids
because she hates them to begin with--It goes with her dementia.She has no family & I am POA of her health & welfare.She is happy without them.
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We had the same experience with a loved on. An audiologist suggested we use hearing aid clips which clip to the clothing. An audiologist can provide these. This really helped!!! While she still took her aids out in various places they were much easier to find with the clips attached.

She hated how they looked at first but as her dementia progressed she really didn't notice them. It won't completely fix the problem but it helped a great deal.
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Amy, this is certainly a rough time for you. I hope you manage to set aside some respite time just to unwind and relax.

I'm sorry to learn of your brother-in-law's death. There's just too much happening for your family now.

The VA keeps the impressions made of ears so that new aids can be made from them if the aids become lost (or as things belonging to the elderly often do - go on vacation somewhere and forget to come back. It's amazing how many object like hearing aids, small eye drop bottles, glasses, checkbooks and more like to take these impromptu vacations and disappear for weeks.)

If the hearing aid company from which your mom's aids were bought kept the impressions, perhaps they can create new ones from these ones taken earlier. That would save you another lengthy trip.

Harpcat's nursing sister makes a good point - is this really an emergency and can it wait until you return from vacation?

I was wondering also if the hearing aids don't have to be set in the small dehumidifier jars overnight. The VA provides us with these, so the aids go in every night to be dehumidified.

I realized it would might be an issue to train your mother to put the aids in the jar every night, but it's that's possible, at least the jar is larger and easier to locate.
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Oh Amy, im so sorry to hear about BIL! But yes, there is another way to do the molds. Call the audiology place and tell them that there is NO WAY to get mom to their place. Work on the facility for transport and pick up at the same time. This is the kind of assistance that they are supposed to provide. Plus, it IS their fault that they are missing in the first place. So they get to be inconveniebced, not uou. Otherwise, let it wait till you return. This is not your emergency.
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Another thought, is can you arrange for the audiologist to come to her place to take the molds...of course it may cost more but then so does your fuel and time to go there.
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I'm sorry about your brother in law. It is so hard to put ourself first when we feel like all we do is put out fires. I want you to promise you will go on your trips as though it were a doctor's prescription. Does her ALF have transportation that could take her to the hearing aid place to get the ear molds made assuming they don't keep the molds for a short while on hand? Here is how my sister talks me down off the ledge when I'm thinking I have to jump to attend to dad's current "situation, illness, complaint, etc". She says (she's a nurse) "if he's not bleeding from an orifrice or not breathing, can it wait?" Of course she is right. Her loss of hearing aids is NOT an emergency and she can survive without them. So do you need to add that 80 mile trip to your busy agenda? People didn't even used to have hearing aids not that many decades ago and they made do. So ask yourself if you are reacting to something that can wait.
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I will say some prayers for you. So sorry about your brother-in-law. Life is not fair. Please take care of yourself. It's always hard to get ready to go away, but it will do you good. You have a lot on your plate.
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Thanks everyone. I'm feeling a lot of stress, not sleeping. My brother-in-law passed away last night. Such a great guy, not fair!
I'm steeling myself to see the manager of the AL and asking them to file a claim for the aids. The aids have a warranty, but we still have to pay 25% of replacement, plus cost of making new molds, plus another warranty - about $1200 total. I checked with a lawyer who said they should be responsible if we have been paying them to maintain them for her. So, then I will begin the ordeal again 80 mile round trips to take her to get new ear molds made, then waiting for the replacements to come in, then fitting - all this must be done before I leave to visit my daughter out of state next Sat (4 days), then leave on vacation in 3 weeks (I hope!). Also need to spend a day making sure my substitute is trained to do my part time job, etc. I also have three doctor appointments for my own health. I am so sick of this - I have been through it so many many times with Mom. And booksrme - you are right, she will bitch and complain and be unhappy either way. That's another stressor - trying to be nice and kind to Mom when she is driving me nuts - and I want to just scream at her! This has been going on for years!
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My mom always lost her hearing aids when she was in long term care. I finally gave up on the hearing aids, and she forgot about them. You are being very hard on yourself. Sounds like your mom will be miserable with or without the hearing aids. Some things are what they are.
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If you find the hearing aids again or have to buy another set, get a box that they can put them in and a TSA luggage lock that has a code you give they ALL staff. It will also come with a small key. You keep the key and the code, they lock up the hearing aids nightly. Just like there are medication dispensers that are locked (my dad has one). This was they will always be in the box for the staff to find and mom to stay out of. Hugs to you. This is such a frustrating journey. As my dad tells me often, "we are just living too long".
I'm very sorry about your brother. My mom died from a brain tumor at 64 and I used to ask that same question about why the good die young and mean evil people live forever. There's no answer and it makes no rational sense but then life never does really. Blessings to you.
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Check out comments on amazon: How would this be for finding lost hearing aides lost in a bed room. Bounty Hunter Metal Detector $53.87
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When I bought my hearing aides they came with a lost hearing aide insurance which provided replacements for very very low cost. I forget the time period it was several months.
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hi Amy - I apologize I have no suggestions but I'm sending you a hug instead. hang in there friend.
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Consider either a personal amplifier system rather than hearing aids, or just a chalkboard to write on. If they find these ones, they don't need to be leaving them in her room overnight either. I wish for you and for her both that the finances were more favorable, because she really is at a point of needing more guidance and care.
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Sunny, Mom can pretty much take care of her personal needs. Even before the dementia she was difficult. Even when she was mentally ok, but needed help with housecleaning, she refused to let the woman in the door. The doctor and AL believe she is not ready for memory care because she is aware, knows people and can take care of her basic needs. Also, it is twice as expensive, and we can't afford it until absolutely necessary. She refuses any help, except putting the hearing aids in and taking them out, but they remain in her room.
I just spoke to the nurse and asked if they can trace whether they went missing in the morning or at night - AND THEY DIDN'T KNOW! And I am paying them an extra $450 a month to give her medication once a day and take care of the hearing aids.
AZlife, good idea about the imodium. When I go up there and raise you know what about the hearing aids, I'll find out if the diarrhea is regular, if so I'll contact the doctor.
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Re the poo issue, you might talk with her doctor and find out if she can take Imodium along with her other current medications. My Mom is incontinent and used to have diarrhea often -- largely due to anxiety, I think -- but her doctor okayed her to have up to 2 Imodium per day, and this has made the diarrhea mostly a thing of the past (she still occasionally has a day or two of it). She usually takes 1 a day with her morning medications.
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It's a difficult thing to deal with. I've had similar problems with my cousin's eye glasses going missing. Sometimes they place items in places you would never expect. She could have given then to another resident and they are in that person's drawers and they have no memory of it.

I will say that I think that based on your description of your mom's dementia, it is very likely she would misplace another hearing aid. Whatever you decide to do with regard to the hearing aid, I would wait until your mom is settled before purchasing another one. It could be a continuing problem.

I'm not sure why you believe that a higher level of care for your mom would be a bad thing. You mom's reasoning doesn't seem to be sufficient to determine if she is getting the proper level of care. If her memory is so bad, she won't remember what the staff is telling her what to do or not.

Also, I don't think your mom is being difficult on purpose. She isn't able to do any better than she is doing. It's not her fault and she doesn't seem to be able to have unlimited access to the hearing aid.

Sometimes, the dementia makes it unsafe for the resident to have medication, mouth wash, air condition thermostat etc. at their immediate disposal. In dementia care, things like that are not allowed to be in their rooms. It's kept safe as you would for a toddler.

You say your mom has no real memory, is having toileting accidents and is losing items. I think I would meet with the resident coordinator or director to discuss if the facility can meet her needs. I know you just moved her there, but if there are daily mishaps that disrupt her so, I can't imagine they would think she's in the right place. And you could discuss the missing hearing aid.
If you are far away, do it by skype. If you are wondering if she will be able to stay there, then I bet they are too. I would do my homework to find alternate options, just in case you get the call that they can't keep her there.
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