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This is an extremely dangerous and unhealthy situation.
From all you describe, you haven't got much of a choice.
Your mother AND you, need to have her placed in a memory care facility.
Contact senior social services in your area, or if a need for her to be hospitalized arises, tell them you can no longer care for her, and you will not be taking her home.
She will be safer and happier. You will be safer and happier.
There is no shame in knowing you have hit your ceiling and simply cannot be a caregiver!
You will not be deserting her, or dumping her on someone else....you will be choosing to do what is best for her. You wouldn't perform a surgical procedure on her, knowing you're not qualified.
This is not failure on your part; this is you doing what is the right thing FOR your mom.
Have the professionals care for her...THAT is what the right thing, in this case, looks like.
You can then return to being her daughter. You can oversee her care from a far better vantage point than from where you're at now.
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So sorry, but there comes a time when she needs more care than you can give her. Please, for your sake and hers, it's time for her to be in a facility .
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Get her in the hospital if you cannot manage her, check for urinary tract infection, and tell them you cannot manage her anymore due to stairs and other unsafe condition--so you cannot take her back home. The social worker will deal with placement. (PS if she is still able to walk and go into the car, take her to the Emergency Room yourself or you may be stuck with the ambulance bill!!!!)

It sounds like you need to get her in a nursing home. If your family does not like it--too bad..then let them care for her, and I would tell them so. Her safety is the main concern. Those stairs are completely unacceptable, because even with the best precautions, accidents do happen. They become obsessed with locks and will find a way out. What is going to stop her from escaping out of the window? You can't leave her by herself, and you cannot lock her in her room. She requires 24 hour supervision. Call the county about elder services to get placement started if you won't do the hospital placement thing.

My mom used to do the same thing, but I have a single story home, got alarms when she gets up including fall mats (most falls happen getting out of bed), and every single electrical appliance got disabled; even the stove unplugged. I stay with her 24-7. FIVE YEARS later..she recently became bed ridden, is kept alive with a feeding tube. I'm so used to the caregiver role I do not know or understand how to live my own life without it being centered around mom, so when she dies I will truly be a basket case and emotionally destroyed. You see mom had symptomatic Alzheimer's for 10 years now. The last five years, she started acting like you are describing (wandering and trying to escape the house). Just a few weeks ago she completely stopped eating and drinking so I got a feeding tube put in..and she forgot how to get up and now she is bedridden. But she will be 90 years old next week.

I do not regret taking care of mom, but I literally sacrificed my life for her. So please do not lock her in her room.
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Arleeda Aug 2019
Why did you have feeding tube put in? Refusal to eat is Nature's way (or God's, depending on your beliefs) for most of us to leave this world. At almost 82 and risk for Alzheimer's I have this in my Advance Directives--NO gastric or other feeding tube! Death via starvation seems harsh, but it is mainly hard on the family. Both my mother and husband had advanced directives against gastric feeding as it just prolongs the agony. Yes, it is difficult to watch, but doesn't seem to be difficult for the patient.
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Hire outside care for her on your behalf if you think you can't handle her
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I really do sympathize with what you are going through, it is not easy, and know that you are not alone.
We have my MIL (94) that wanders at night, and fell down the stairs, but luckily we only have 4 of them, and she fell on the last one, so she wasn't hurt, but after that we put up a baby gate so that she can't get to the stairs, but can still get around and go to the loo etc, it has really worked so well for us and she has no idea know how easy it is to open. Are you not able to put up something like this, or even a full size gate, to allow her some freedom, but prevent her from accessing the stairs?
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I’m so sorry to hear about your circumstances. I do hope you come to a peaceful solution soon.

You mentioned that your family doesn’t believe in nursing homes, what are your thoughts on them? It seems that you are the one caring for her and it’s led you to locking her in her room at night. It maybe a temporary one, but for her sake, it shouldn’t be a permanent one.

When we are caring for a loved one with dementia, they need 24 hour care for their safety. If she is hungry or needs to go to the restroom, there needs to be someone to readily assist her. I fear her being locked in her room could lead to trauma for the both of you.

Consider hiring or asking your family to cover the night shift so that you may rest. You can’t take care of others unless you are taking care of yourself first.

Whenever a loved one is moved to a nursing home, it is wise to plan daily visits from friends and family and even consider to hire someone to come by for visits regularly. I have found that this makes staff stay on top of things. Also, having a daily journal available for to write down any concerns they may have regarding her care. When you come to see her, you will know if there are any issues that need to be addressed.

We have to think what is best for your mom. Family will not always agree. If you have the legal control over your mom’s care, then you give her the best care possible, whether it’s in the home or a nursing facility.
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Who are these family members who don’t like nursing homes?
Where are they when you need help?
Tell them to mind their own business and place your mom for her safety and yours.
Find a place and take her without telling anyone, if they say anything ask them where were you when I needed help.
Contact DHS about help with finances and placement. There should be no guilt on your part, you have to do this for your mother’s safety.
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My mom had early on set dementia and to be safe I turn off the gas at night. It's a pain having to go outside and manually turn on the gas but it's the only way I can sleep and work with peace o mind.
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I recently attended an evening for people caring for loved ones with dementia. Of course it’s up to the individual to decide when it’s time to go to a nursing home but the specialists hosting the forum gave us a really good guide. If you are up at night regularly it is time to either get assistance through the night or go to a care home. The other was incontinence. I am not sure if your loved one is distressed being locked in at night but it obviously distresses you that you need to do this. Your mother needs 24 hour care and you can not offer her that on your own.
Best of luck
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We used a metal gate with a door to keep my MIL from going into the kitchen alone as it was the most dangerous room in the house for her. It contained a gas stove where she almost burned her hands, a cellar floor with steep stairs that she continually tried to access, a door to the outside and a trash receptacle that she would drive her hands into looking for “treasures”. The gate worked wonders to keep her safe. We also moved our bedroom downstairs to be close to her as she was on the first floor. Baby monitors helped a lot too. We also bought her one piece jumpsuit pajamas that zipped up the back to help with the issue of her taking off her pull up underwear and urinating in bed and around the house at night - the plus was that she felt secure in the pajamas and really liked them.

If you cannot place her in a nursing home, I would recommend using gates, baby monitors and back zip pajamas. All of these can be found for purchase online. I also recommend hiring someone to give you some respite if you can afford it. If not, call on your family members to take their turn.
I wish you the best!
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ImageIMP Aug 2019
Really good suggestions! I would never have thought of the back-zip pj's...
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I am dealing with the same issue as you. My mother is 84, has dementia/ Alzheimer's and does the same things your mother does to a tee. I put baby gates up at the stairs and even doubled them up and put bells on them. After continuously being woken up at night I moved downstairs. I have a bed in the living room and converted the dining room into her room. I have an eat in kitchen so it was just a matter of storing what was in the dining room. It makes things much easier and if she doesn't make it to the bathroom clean up is much easier. With that said I have come to the conclusion that I still need some help during the overnight hours so I will be having someone come in from 11 to 7 a few nights per week so I get much needed sleep. It will take most of her social security but it will also give me some peace of mind. Your not a failure you just need some help. As I read you have extended family, you could ask them to each take one night a week on a regular basis. Unfortunately for me it's just me and I also have custody of 2 young grandchildren and a disabled son of my own. It's hard to ask for help but if something happens to you then who's going to take care of your mother? Best of luck to you.
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Please, B esmart, Here, Dear, Your Mom is going to end up to be her own demise and yours a swell. If anything should happen o her, God forbid, And Adult Protective Services should get Involved, they will hold you personally lible for the Welfare of Endangerment to an Elderly person. Please, make a game plan to get Mom into a Safe fcility or a caregiver who can com and care for her.
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You are in a very difficult situation. You need to check carefully about elder abuse in your state. If something happens to your mother as a result of being locked in the room-- it could be seen as neglect. Sounds like your mother needs to be in a long term-care facility.
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I like the camara ideas, but I also worry about the length of time for toilet needs without anyone checking in with your parent. I think someone would have to check in at least once every 2 to 3 hours depending on the sleeping patterns of your parent, which may make it impossible just for one caregiver. You might also consider moving her room near yours and getting a bed type of alarm that wakes you up when she gets out of bed. We had those with our mom and it's great for safety for them and to let you sleep while possible. I found that I had to sleep on my mom's schedule not mine. Eventually, we also needed help and couldn't do it alone. One does feel guilty for trying things out for self preservation and safety for them. And while our laws are good about coming to arrest you for elder abuse actions when reported, those same laws are not required to provide additional caregivers when it's too much for one person. Families are often stuck alone until they can't anymore or something bad happens. It's sad that we don't have more assistance with our loved ones with dementia! Facilities also kick out residents who are too difficult to handle, so it's not an easy problem to fix. To me, the State should be obligated to provide caregiving assistance to families who are alone taking care of a dementia patient. It's not fair to families to carry all the burden regardless of income. We had help and still it was the hardest thing I ever did in my life, so my heart goes out to families who are dealing with this alone. Facilities are not all that great either and some of our family members also get abused in these facilities, so the laws should require that help be given to families who take care of a dementia loved one to take care of them either at home or elsewhere.
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OkieGranny Aug 2019
The state doesn’t supply anything. It all comes from taxpayers and it is coming to the place where taxes will become crushing. There is no easy solution because people are living longer than ever, but they are also having fewer children. We could be looking at robot care some day.
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Put refrigerator locks on and cabinet locks. That stops the food issues. It also stops any other cabinets in the home being an issue. Then buy locks for the stove itself. Bigger issue is if there is a fire and you can't get to her, she will never be able to open her door. Honestly, it sounds that your mom has sundowners. There are meds to try to help with that, but you would have to make her take it and if she pulls bedcovers off and refuses to wear some type of adult pullup, then you will never MAKE her take the meds. Honestly, your only bet is to place her in a memory care facility. It is no longer about what your family WANTS. It is about the safety of your mother and your own safety. You cannot any longer look after her by yourself at the stage it sounds like she is in without your own safety, her safety, and anyone else that lives in the home being in jeopardy. I understand the whole problem as my mom has two types of dementia, chronic kidney disease, diabetes, high blood pressure, high cholesterol, and continues to be a stroke risk. My father also has the beginning stages of Alzheimer's with diabetes, high blood pressure, high cholesterol, is a stroke risk, and now needs two total knee replacements. It is only me taking care of them. My son is 14. My mom can't drive....I took the keys and the state has taken her license. Eventually, she will become bad enough that I can no longer care for her, even with my father's help, and he won't be able to help and I will have no choice but to make a decision for them both. I understand the cost is more trying to bring in home care in than trying to place in memory care. Honestly I cannot always do the cleaning and care of the home without hiring someone to help clean after her and also give meds and take care of food, all while still working and caring for a teenager who can't drive. I am finally coming to the realization that it is not up to the two of them when they are not able to care for the home all by themselves and look after themselves completely either. At some point, you will either be faced with doing the right thing and placing her or you will continue making the wrong decisions for you both. It is illegal to lock her in her room, but not illegal for a nursing home to lock their exterior doors because they have 24 hour staff to care for everyone. Either hire someone, or place her.
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Bigsister7 Aug 2019
Please skip the knee replacements for your father. As a retired PT with years of rehab experience, I can tell you it won't work out well. He is not a good candidate for surgery.
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I have no solutions, but I wanted you to know that I am impressed with your stick-to-it-ness to try to work things out so your mother can live with you. I think you have to do what is necessary for her safety...and your sanity. It sounds like you are working it through...best to you!
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Can you instead hire someone to stay with her at night? A Live in Aide, to give you a break, but still not make her feel like she is in prison, locked behind a bedroom door...she can do some major harm to herself alone in that room at night while you sleep, and with her mind the way it is...it just doesn't seem like a good idea...
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ImageIMP Aug 2019
Well, she said Mom doesn't realize the door has the locks, so she probably doesn't feel like prison? Maybe just thinks the door doesn't want to work for awhile! :)
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I wish there was a perfect answer for dealing with this issue. My mom lived in her own home less than a minute away from me. She started wandering after dark and would get lost. We did put locks on the outside so we could keep her in over night. She just threatened to crawl out a window. As a matter of fact she then went down to a bedroom and proceeded to do just that. I calmly videoed her trying to crawl out the window. After 13 minutes she gave up and calmed down. We talked about why the locks were there and she agreed to let us lock them at night and unlock in the morning. We never did lock them but her going out after dark stopped. She started walking around the neighborhood going to other houses and trying to walk in because she insisted she lived there, as well as loudly calling my name because she had forgot she could speed dial me from her home phone. I personally went to each neighbor and gave them my phone number to call if she was out of her yard. I also put up camera's in her house so I could monitor her on my phone. I saved all the phone messages from her neighbors alerting me to her behaviors. One day I saw on the camera she had just left her driveway. I rushed over in my golfcart and saw her. She walked right by me calling my name. I recorded this outing as well. I was just trying to get things recorded so I could use them to defend myself if needed as well as evidence that she needed to go into memory care. One morning as I was having coffee and watching on my phone if she was awake yet I saw her crawl down the hall into the living room. I was on my way over when she called 911. I got there 2 minutes before them and she was having a vertigo attack. 911 insisted on taking to the ER. She complied. Once there I told the ER Dr. I was in over my head and was no longer able to keep my Mom safe. I then played a few video's and phone messages for her. Of course in the ER my mother was Miss sweet and compliant showing no reason why she should not go home. My videos convinced the Dr to have her admitted inpatient. The inpatient Dr. saw the evidence and told Mom she needed to go into rehab. Mom said OK because it was Doctor's orders. Once there it was obvious she needed memory care and they transferred her to a locked memory care unit. She has been there for several months and all is good for her and for me. If she had not called 911 I was going to contact Elder Care in Fla and see if they could help me. My Mom's 911 call solved all that. Moral of story gather documentation so you can present it to someone who can help you.
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It is time to put her in a nursing home where they treat dementia. Neither of you can continue like this! As guilty as you might feel about this it is the safest option! Medicaid will pay for some if she can't afford it! Prayers for you! Life is so difficult as we get older and our loved ones do too!
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I understand that it is illegal to lock a person into a room for 8 hours.  But in a hospital, they would put her in restraints and that would be legal if she was determined to be a threat to her own safety..  The law seems contradictory.  Maybe you could hire someone to sit with her during the nights?  I know that when my father was doing very poorly, this is what we did.  As for your family's opinions, that seems incredibly selfish!  What you are going through is pure torture!  They should be ashamed!  She is a serious threat to her safety and yours.  I cannot believe anyone would be so selfish.  One of the respondents said to call the Alzheimers Association.  Do that today and find help.  Then start taking care of yourself.  You are of no help to anyone else if you are not healthy yourself, and it is not selfish of you--however, I again state that I cannot believe the selfishness of your family who would rather see you in this position, when they are doing nothing to help.  They should at least be helping financially, and you could then hire in-home help at the very least.  My heart goes out to you and I pray you will take action immediately to relieve yourself of this as soon as possible.  If your family will not support you, then so be it.  Better to not have them in your life if they would see you suffer so much!
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She's going to KILL someone. If she turns on the gas and your house explodes you're liable for neighborhood damages, and are accountable for the death of everyone inside your home. Minimally the risk is foolish.

Even if you dislike nursing homes, you have zero choice,based on what you wrote she legally needs to be placed inside a Nursing home STAT.....you're dedication is remarkable, yet she's going to kill someone.
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First off so sorry you and your family are going through this. Unfortunately your Mother does not sound like she can live in your environment any longer. She needs to go to memory care living facility.

For assistance you can reach out to case management and social services department in a hospital for information to provide guidance and support for you. In addition you may need your Mother’s doctor to assess and evaluate her to qualify for memory care.

Hope this is helpful.
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No one is talking about medication. Couldn't giving the mom some kind of medication make her drowsy enough to stop the wandering at night and let the caregiver get some sleep?
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We have lived all these things since 2006.
Since 2013 it has been better since have learned that the mind is in chaos, have learned the behavior triggers and found the right medication to reduce the chaos.

We have realized over the years that the strange behaviors are because the mind remembers fragments of things that need to be done, but also only fragments of how to do it.

My wife has FTD with all variants.

All dementias are not the same.

It seems that much of the medical industry does not yet differentiate.
It took 9 years for the FTD realization, and that was only by a chance phone call to a social worker who's husband had FTD.

FTD does not respond to meds and Alzheimer's cause adverse effects.
Sleep aid medication has no affect.
Christy is permanently hunched over and drools from Alzheimer's meds administered before FTD was realized.

Three main clinical variants are recognized: Behavioral variant (bv-FTD), Semantic dementia (SD), and Progressive nonfluent aphasia (PNFA).
https://www.nia.nih.gov/health/types-frontotemporal-disorders

I am typing this at 3:30 AM because I was just up with Christy as usual. She wets the bed at least once most nights, sometimes more often. Often the wetting triggers seizures.

There is no Rx for FTD seizures, but we found natural medication that stops the seizures instantly and affords a nice sleep for the rest of the night.
Christy used to sleep an hour, then be awake and active for 2 hours.
We use the same medication before bed when she is irritable.
Now she sleeps until she has to pee, usually 5 hours, and then right back to sleep with a pleasant wake up.
I enjoy my mornings with her.

UTI is a major cause of irrational behavior.

We do not use depends because it causes UTI. This is known. Our local university hospital does not allow them for that reason.

Much bedding is Polyester or blends. Polyester is a plastic, holds the moisture and bacteria, and is an irritant. Good hotels use ony 100% cotton bedding.

We use 4 x 4 washable bed pads with a 100% cotton cover. We have cut king sheets in quarters. It is easy to get her up, spray her underside in the shower, and replace the 4 x 4.
The 4 x 4 pads are an easier load than full sheets. I would do that a thousand times rather than one UTI episode.

Christy has no language comprehension or self awareness, She is a danger to herself and others and she is hyperactive. She has to be watched by a person within reach 24/7. She wanders without purpose. She would bump into walls if not redirected. Restraint enrages her and it is unlawful. We very gently redirect her from dangers.

We sit her down sometimes to feed her or when she is obviously tired, and let her choose when to stand. It is only moments of relief for us.
We are able to leave her space for the moment, but she will suddenly pop up and one of us will exclaim, "and she's up!"
Often it is because she has to toilet or has already done so.
She sits on the 4 x 4 with cotton cover. No depends.
I have realized that it is easier to grab the pads and throw in the washer than to struggle with removing and replacing a diaper. Better for the environment, also.

We toilet her every 2 hours, which minimizes accidents on the floor.
Facilities do the same.
Christy has to be hand fed and hydrated with a bakery syringe continuously all day, and often it is while she is shuffling, twisting turning, head hanging, drooling.

I used to dread her wake up, now I look forward to it.

With the medication, even in her emptiness, she can be a hoot and we laugh much.
It is like watching a toddler learn, only she can't retain after the moment.
She not changed since 2013 and is physically very healthy.
I have been providing this level of care 24/7 since 2013

Christy is exhausting and each night I wonder if I will have the will and strength to do it the next day.

But each morning I find myself realizing that I can do this for another lifetime.
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Mercedes2020 Aug 2019
EllerySir
You are an awesome individual and what a great answer you have given. For all of us answer I’m sure MissingEverything will draw some hope and actionable steps.
Blessings to you sir!!!
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Can you use a camera or baby monitors in her room, in case she has a problem? Dementia patients are kept in a locked ward, so it's not that much different. If you are her caregiver, I think you can also overrule your family and have her put in a dementia ward for her own safety and your peace of mind before she Burns your house down, and you with it.
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She needs to be in a memory care center, for both your sakes. The one here negotiates price when asked.
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Hi Missing Everything
So sorry for your situation but, you must place your dear Mom in a memory care facility.
Dont worry about naysayers telling how bad these places are because they are so regulated by the states they have to be cautious. You can visit her everyday for as long as you desire then go home to peace of mind. Make friends with staff and they will keep and eye out for you.
You will land in a facility if you don’t place her in one. You are her main caregiver so you have rights too. These facilities are improving their care because so many people are needing them and will need them so competition to improve.
Locking the door yes is illegal most everywhere from what I’ve read but try like someone said the AARP site.
Go to the local library if you don’t have a computer.
Research, research to find what you need.
Nothing lasts forever.
Its been seven long years.
You have paid your dues and can still be very active and helpful with more ways than you can imagine if your sanity in tact when she is in a memory care facility. It’s the loving thing to do. Prayers for you now, and many blessings to come.
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Misseverything, it's been my observation on this site that many exhausted, emotionally depleted caregivers are reluctant to put their LO's in a care facility because of family pressures. It's also clear that family members who aren't providing daily care don't always understand the toll that caregiving can take on a person's health, finances, emotional wellness - not to mention the impacts it has on any other family members who live in the home. Plainly speaking, your family's dislike of care facilities is not among the most important factors in making the decision to find a facility for your mother. The most important factors are her safety and health, and your health and wellbeing. Really, you've already done everything you can to avoid a care facility, but you aren't a superhero. And we all know that dementia isn't the kind of problem that will stabilize for long or get better; in fact, you can definitely count on her condition to get worse and harder to deal with. I urge you to reach out to the resources mentioned by other posters in this thread. If your family gives you a hard time, invite them to take her into their homes. If they can't or won't, proceed with your plan to find a care facility for her. You and your family can then visit her and advocate for her care. That, my dear, is what doing your best for the mother you love really is.
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I used a baby gate on her bedroom door bc she was falling at night while walking to the bathroom. She fought it for the first week. She screamed and cried and yanked on it but couldn’t get it down. I just talked calmly and explained that she is to call my name during the night and I’ll help her get to the bathroom without falling. That is eventually what happened and it worked well for a long time. I started limiting her fluid intake to get more sleep (both of us) and it worked pretty well.
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Is it you or your family that doesn't want to put her in a memory care facility? Quite frankly, if you're the one taking care of her (and no one else is helping much other than your son) then they shouldn't get a say in the matter - in my opinion. My grandfather was recently put into memory care. My mom and I took care of him for 5 years, however his dementia got so severe he started to attack us and he was also a danger to himself. He was so so bad that the first facility we put him in actually kicked him out after 9 days because even they couldn't handle him. But now, he's been in one facility for 6 months and he's doing so much better and they treat him great. We actually think he's going to live longer now because he's put on weight and is happy. I highly suggest you look for a memory care facility that specializes in dementia cases. It will help not only your mom but also you.
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