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Thank you all for your insights. It is supportive to know others are going through this stuff
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-Talk with the doctor about a medication that will make her sleep through the night.
-Get a plumber to look at your stove/wall connection to see if he can install some kind of cutoff toward back or side of your stove. Then even if she turns on a knob, no gas will escape.
-For doors that lead to exterior, a handyman may be able to install a lock type system up high on the door similar to those used in hotels. And, perhaps, a similar lock for your pantry door. A strap around the refrigerator could be used after kitchen closed down each evening.

When you say my family does not like facility care, do you mean a general consensus of your family including yourself? Or siblings/other relatives don't want you to put her in a facility. If it is other family members only, then it may be time to have a family meeting that includes a calendar of what days/nights each of them can cover. Let them know with notice of meeting that non-participation may result in you having to make a decision on your own regarding ongoing care because you can no longer do it on your own. Since it is not stated about her finances, you may also want to mention if these relatives cannot provide on-site care, paying for day or night care can be substituted and get payment in advance for their share of the day/night they would be responsible for.

Locking her in the room could prove disastrous if there was a fire. I'm quite surprised a nurse would tell you that since a nurse would be a required reporter to adult protective services if they came upon a situation like that in a home
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Best answer, you may need to seriously consider a nursing home for her if its that bad. Try looking up any local Aging & Disability services in your area for caregiver support & any other support networks. Are there some sort of Senior Services agencies available in you City? Call your local 411 for help. Then go to Google. Thats all I can come up with for the moment. I'm going to have to care for my own elderly Mom. Good luck. And keep us all posted on any kind of updates.
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Dear Miss,
It is PAST time for your mom to be in a care facility. You are "abusing" her and yourself by not getting her to one IMMEDIATELY. What I mean by "abuse" is that she is obviously not safe in your home. It is like you have a huge lap pool at your house and you are allowing a two year old to be in the pool area without you watching. A facility has no pool. No stove she can reach in her declining years. Once again, for your sanity and her safety it is past time for you to move her to a place that is designed for her at her age. Would you allow a 7 year old to be at a collage dorm room for a week? Of course not. A facility will not lock your mom in. She will be allowed to roam the halls 24/7. The difference is they have 24 hour staff that is wide awake and getting paid to do their job of keeping your mom safe.

Be good to yourself AND your mom, it is time for her to be in a safer environment.

About your family and their comments about mom. Don't let their guilt and displaced feelings about their mom force you to make truly wrong decisions.

My suggestion is to copy this whole post with answers from others and be direct and say, "I am sorry you do not agree with my decision, and I can understand your discomfort about a change for Mom. This will fall on me, since I am the one who is with her the most, therefore, I am the one who understands her needs the most. If you are not sure about my decision, please come sleep at my home for ONE week and I will leave. After the week is up, I am positive that you will agree with me about this change."

Once last thing, although I am certain it has been mentioned in other posts, please bring in OUTSIDE nurses, social workers, etc. to have a meeting with your family. It sounds cruel, but when they hear the EXACT same thing from a professional, everyone listens more. Instead of being annoyed at this happening, be happy that they are listening to SOMEONE that there needs to be a change for mom.

Good luck to you and your mom.
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worriedinCali Aug 2019
Locking her in her room at night is abuse as well.
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I would do the same in your shoes but probably earlier than you did - leave a few cookies or crackers for her in case she feels hungry with some water

You say your family doesn't like convelasant homes but then they are never at the top of anybody's list to places they want to end up in either - if you haven't been to one recently then you don't know how good or bad they are - there has been much improvement in the last decades - many say they wouldn't put their mom in one but have never even visited one rather are going on the rumour of what someone saw 40 years ago when the attitude of the public was it was a warehouse for the elderly - FYI ... they are called nursing homes now a days so that's why I can guess how out of date your information is

It is past time for your mom to get professional help 24/7 - think what would happen to her if you either got very sick or died - that's where you are headed with all your stress & deep down in your heart of hearts you know it too - start taking the steps now before you get too sick to have any choice where she goes because when [not if] the crisis happens then your mom will go into the first place with a bed available & it might not be the best one around

My mom always said she didn't want to go to the 'Sunparlour Home' the one in her town but she ended up near me & it had a different name - she blossomed for a while & went to 10 activities a week excluding religious ones - she painted, did bingo & hugely enjoyed the chocolate bar that was a prize, she had her hair done on site, participated in sing-alongs and many other activities

It is time to look at what not only she wants but she needs because she is endangering others with her behavior & that can't continue - there are resources & agencies that will help you through this difficult time so make use of them because most are funded by your tax dollar so now is the time to make that investment work for you - good luck but never feel guilty about this as you are securing her safety & well-being
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cwillie Aug 2019
Your comment reminds me of a story I've told before:
My cousin was visiting her aunt (from the other side of the family) at xxxxx retirement home and asked how she liked living there. The lady replied that she liked it very much, then went on to add how grateful she was that her family hadn't put her in xxxxxxx retirement home.😜
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I've noticed no one here has suggested a medication review and visit to her physician for help with this.
Obviously no one wants to go to a care facility but REALLY? Why does it all need to fall on one person? This is just plain nuts.
Reading posts like this makes me grateful for the "trip" I'm on with my dad.
I have no children...if I get diagnosed with Alzheimer's I will not go through this living hell. I'll be bailing out of here.
I hope you can let us know what your future plans are to protect your health, safety and sanity.
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What about some overnight in home care? Only if a memory care facility is financially out of the question. They can help get her up every few hours for the bathroom and make sure she's not causing safety issues.

I agree with others here, it's time for a memory care home.
Remind the family its rather selfish to put their dislikes above your Moms safety and well being not to mention your peace of mind, own safety and well being!
If the memory care and home health options are totally out of the question I suggest letting Mom help in the kitchen during the day. Have her wash fruit and veggies, fold kitchen towels, sort different types of pasta, etc. Maybe if she is addressing the cooking during the day it will satisfy her need to cook at night.
Point is, she needs more help than you can give her now. Your safety is at risk, hers it at risk. Go look at some of the homes, check out the options. Maybe daytime adult daycare a few days a week so you can at least sleep during the day.
Take charge here and get your life back!
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It's definately time for a care facility. When I was tending to my mom all through the night, I was totally exhausted.
If your family won't come sit with her overnight, they have no say. If you have reluctance to memory care facillities, visit some. I would find a place where residents are comfortable and safe, and they have many activities to pass the time. A place with common areas for waking hours is good. I would not choose a place, where residents are expected to stay in their room.
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I totally understand how you feel! This is a hard gig, maybe the hardest!

When my mom was living with me, we had to put a lock on the refrigerator door to keep her from getting up 'rearranging" all the contents, and partially eating bizarre combinations of food, and occasionally attempting to cook. I did find that it helped if I left her some snacks by her bedside, to eat when she woke up during the night.

I had a dog, that would wake me up if she was prowling about. That was a real blessing, and I have no idea how that dog knew that I needed to check on mom.

Anyway, let me recommend door alarms, bed alarms, and bells for her room, they are a better solution than locking her in her room. For your kitchen you can get locks for the cabinets and the refrigerator, and for the stove, you can cut the gas off at a switch that is under or behind most of them, or you can have one installed.

If other family want to tell you how to do this job, then they should pitch in and sit with her at night so you can sleep, or perhaps they would rather pay a in home care giver to take the night shift! If they fail to do that and you can't afford that kind of care (it's extremely expensive), then I suggest you ignore their input and do what is best for you and your circumstances. Putting her in a care facility where she is protected and you can visit often to oversee that she is cared for well, is probably going to be your best option. It will give you peace of mind and allow you to get back to being a daughter that delights in her regardless of her condition.

Finding a way to enjoy your last few years with your loved one is also important, and it will matter a lot more to you, than you realize when they are gone.
-MJC
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As I read your post, I kept thinking about a toddler and the importance of childproofing a home to get through those years. First, all the knobs must come off the stove and placed out of sight and reach. When it is time to cook, one knob is used to control all EYES of that stove. If there is a kitchen door it should be locked. Someone here suggested she could go to adult day care in the hope she will get tired out from the day's activities. How about taking your mom out, occasionally? I have a friend who takes her mother to the hairdresser every two weeks, to breakfast from time to time. Her mother attends adult daycare daily, and my friend uses a respite service as needed.

I think it is terrible that family members are adament about placement while allowing you to take full responsibility for your mom's care.

Good luck to you.
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This is a horrible situation and my first question is why on earth is she even home and not in a facility? And second, why on earth don't you stand up to your family? They are taking advantage of you and don't want to help and won't. You must be strong - no matter what the end result is - YOU MUST REMOVE HER AT ONCE AND PLACE HER INTO A SAFE FACILITY. This is pure insanity. No one like this should be allowed, regardless of why or who, to do what is going on. No one is exempt. When a "patient" starts showing terrible and dangerous behavior because of mental and physical problems and it is affecting those who are left behind to do the caring, then there is NO OTHER SOLUTION......SHE MUST BE REMOVED AT ONCE. Please face something else too so you are prepared. Sometimes in life we have families or friends who absolutely refuse to see and accept the reality of what is going on and yet they refuse to help and life becomes horribly sad and difficult. There are times that we must be strong, say no, and walk away and never look back. It could be the hardest thing you ever did or have to do but I assure you, from personal experience, if you are at that point and nothing improves, YOU MUST WALK AWAY AND NEVER LOOK BACK. You will feel bad for a while but with time one day you will wake up knowing you did the only and best thing you ever could have done and you will be grateful and happier in your new life. I know - been there, done that.
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SicilianLady1 Aug 2019
Riley, I want to thank you for your wonderful post.  All of these people who are talking about hiring sitters during the night and taking knobs off of the doors are talking about "band aid" solutions.  This poor woman whose mother is in such bad mental condition needs sleep and reassurance from a mental health person that she is slowly committing suicide. I'm not saying that a SNF is a perfect solution but my grandmother was in one for 9 years.  She was private pay and I learned that the secret of getting good care from the nursing assistants is visit as frequently as possible. I would pop in all times day and night but I was single at the time. I would bring inexpensive pizzas, etc. to the staff because I knew that they made so little money. As a little sidebar, 2 of my brothers (who never went to see her) got mad when I hired nighttime sitters using my grandmother's own money.  They thought that she should do without so that they could have a larger inheritance.!!  If this lady had money for sitters, I'm sure that she would hire them but the people who so  freely say "hire a sitter at night" are obviously as oblivious to money as the politicians who want to forgive all student debt and tell young people that they won't have to work. Perhaps she needs to find a  free or inexpensive mental health department where a psychologist will "give her permission " to stand up for herself without feeling guilty. I know guilt because I was raised Catholic!! 

My MIL had a friend who said "your parents took care of you until you were 18 years old: it's time for you to take care of your parents".  First, this is a "crock".  Taking care of a baby is easy compared to taking care of a grown up person with Alzheimer's. And in many cases, older sisters raise the younger ones, not the parents. I think of the crazy Duggar family.  Their utter selfishness in putting their older children in unpaid servitude so that the parents can keep popping out children is sickening.
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According to your description of your mother, she is mobile. She does not require nursing home level of care, but could live in a memory-secured (locked) unit of an assisted living facility.
I agree with others, that the stress her care is causing you (and it surely would for me as well) is the most important reason to have her move out. You need to care for you now and make the decision best for your health and your mother's care.
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elaineSC Aug 2019
Good advice.
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Memory care unit is a good idea if you can afford it.

Other options: adult day care program and sitter at night. My MIL has dementia and has a live-in caregiver in Hawaii. This works since she is loathe to leave Hawaii, we live in Florida and her other son's family lives in California.

If her mobility is not impaired, she probably goes shopping and to appointments with you. If her mobility is not the best, you might want respite sitters for your "around town errands."

If you go the sitter route, most want 8 hour shifts.
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I am so sorry that you are dealing with this situation. And trying to think it through when you are sleep-deprived makes it much more difficult.

I notice that you are in Los Angeles. I normally live in Amsterdam but have been staying in LA to take care of my mom who is in LA. (Too long a story for this post). In early 2018, when my mother was in a rehabilitation center after surgery, it became clear that she could not go back and live in her apartment. Not even with the caregivers we hired to help. The director of the rehabilitation services at the rehabilitation facility gave me the name of a service that could help me find an appropriate solution for my mother. http://www.thepassarogroup.com/ I found that it really helped to have someone with experience to talk it through with.They helped us find a facility that met our needs. We placed her in a homey residential care facility (Raya’s Paradise) that is equipped to provide memory care and has an LVN on staff. They also have activities that engage her mind and the small social interactions with the other residents and the caregivers have been very positive. My mother’s GP set up home health services (paid for by Medicare) so she has an RN see her about once a week.

My mom’s situation is not really comparable to yours. Every situation is different. In fact the same person goes through different stages. My family has have gone through multiple solutions since 2011 to support our mother in her aging process. Each stage required looking freshly at multiple issues - medical, emotional, financial, and logistical. An factoring in family dynamics. What may have worked in one stage may not work in another. My mother, brothers and I often had to reevaluate preferences and strongly held opinions about what we would and wouldn’t do. I hope and believe that we now have a solution that will last her to the end. But for the first time I am now having to make medical decisions for my mom without her input so I can appreciate how complex it is when your loved one’s mental capacity has diminished to the point where you have the responsibility of making such critical choices for them. It is confusing and a heavy burden. I wish you strength, an open mind, and a support system for all you are facing.
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Oh, please don't lock her in! It's dangerous, and may be illegal. Instead, put an alarm on her door, so you'll wake up if she tries to come out. You can get them at Walmart, very inexpensively. And put some snacks in her room, so she can have something to eat without going to the kitchen.

If there's a downstairs bedroom she could move to, that would prevent a catastrophic fall. And you might put child-safe covers over the stove knobs, and don't let her see how they work.

I'm sorry for your frustration... I know it's so hard. Good luck.
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Since your family is dead set against finding a nice place for her to be watched 24/7, you are just stuck unless the family can chip in to have a caregiver come in overnight. Remember too that if she gets in distress with an ailment, she is locked up and you won’t know it. You need to reconsider a facility or either get caregivers. Nothing else makes sense.
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If financially able, hire an overnight caregiver. Seems like your best solution until other arrangements can be made.
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Dementia is a debilitating disease, and not just for the patient. She is a danger to herself and those around her. You say “the family” doesn’t like facilities- but where are they in the realm of helping take care of her? It will only get worse over time. It never gets better.

She would not qualify for a nursing home, but there are memory care facilities that she might with the help of Medicaid. Have you applied?

I would contact your local Aging and adult CPS and ask for assistance.

You say your mom doesn’t like pull-ups, but you need to make her wear them. This is an unsanitary situation. My mom didn’t like them at first, but some things you just have to out your foot down. You are the adult now and she is the child.

Have you spoken with any of her doctors regarding her mental situation and the danger she poses to herself and others? They may have some suggestions.

I hope you already have Power of Attorney.

I sympathize with your situation. I took care of my mom for 7 years totally on my own and her property and all her medical business while trying to hold down a job. Then I finally retired early when it became evident she couldn’t stay by herself.

I hope you find a peaceful solution.
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I really got upset and on edge when reading this, my husband has
dementia, but not at this point. Be good if other family members can
help also
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Simply stated, I vote for placement in a care facility. Other non-participating family don't get a vote. You are in the midst of a lose-lose situation unless you relocate her. Be strong!
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I don't know if it is wrong to lock mom in her room at night as long as you are there in your room. It is for her safety. I partly took care of someone with Alzheimer's. We took his shoes away at night because he would go out wandering. At one point, he went out in his socks. Where did he go? Across the street to a 24 hour store to buy little cakes and pies! He had cravings at night for sugar. So I bought several of these and left them for him and that worked. He only ate them at night. You might leave little packaged treats in her room at night. Ask you Mom's doctor for sleeping pills if that is possible. She has to get into diapers! Take away other underwear. They go through phases but you never know what will be next. Really, she will have to go into care no matter what any one thinks or wants. What no one seems to accept is that one day she could seriously hurt herself and then everyone would feel terrible about it. You are 1 person. You need to sleep. You cannot be vigilant enough to prevent every thing.
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Even with knobs removed and adult can turn on the stove. That danger and the danger of a fall down the stairs does mandate more locks, I agree. But the "family's" determination against NH or MC doesn't fly -- unless there is a POA shutting it down. If someone other than OP has POA, Mom should go to him/her. Someone said you are in Los Angeles. I am in Los Angeles too (Granada Hills). We are thinking when the time comes for my MIL to go into a care facility, we would look at her home state of Idaho. The nursing homes in this area, Los Angeles, are just horrible. My dad was in one for a while. It was vile.
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After I left home, my mother's father started getting very bad with dementia. The family tried moving him around from household to household, but that arguably made it worse, since he was always disoriented. Finally, they put him in facility and everyone was better off.

I empathize with your situation; it is asking more than anyone should be asked to give. There are ways to get her into a facility even if your financial means are limited. It would be best for you, and your mother, for her to get professional care.
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Misseverything;

Your current situation is untenable. I did read through the first set of responses last night, but only skimmed the others. Some have pointed you to resources to seek help - hopefully you are taking notes on those.

Regarding the issue of locking her in her room, this is a temporary fix only (leaving out the legality or safety issues, you are already aware of them and can read others' comments.) You need a permanent resolution to these problems.

Without opening all possible replies to comments, I don't see any update or response from you. Please do update us about what you decide to do.

My questions are:
1) Is anyone currently POA? If so, is it you?
2) If no one is POA, it is probably too late for that now - will someone apply for guardianship?
3) Who are those you call "my family"? If they are so adamant that a "home" can't be considered, have THEY offered to take her in? If not, then they have NO say in whether she goes to a facility, you hire help or some other decision is made.

Due to safety issues (stairs, fire/other emergency if locked in, wandering, ruining food, etc) AND concerns about YOUR health, your mother either needs to be moved to MC or another family member's home OR you need to bring in outside help. Regardless of how ANYone else feels about keeping a LO at home, there are situations where is just doesn't make sense. Everyone is in danger in these situations. If it is you who objects to a MC place, please take time to check some out. They are not all the same and certainly not like the Nursing Homes of old (plus it doesn't sound like she is NH candidate, just MC AL.)

Meanwhile, until you can bring in help or move her to a safe place:
* For the incontinence, I didn't discuss the issue with mom. We took all her underwear and replaced them with pull-ups. The issue never came up when I have visited since then.
* Depending on the type of dementia, there are medications that can help. If it is just dementia (vascular, ALZ, not FTD or Lewy's), a very small dose of an anti-anxiety can take the edge off AND perhaps help her sleep through the night. I would discuss this with her doctor(s). Some people have mentioned Melatonin as well, but consult with her doctor(s) before trying to self-treat.
* Can you turn the gas off? It sounds like she is somehow able to turn the gas on without the controls?
* Anyone with a Microwave - press/hold the stop/cancel button for about 3 seconds - it will lock the control panel. Repeat to unlock (this also works on newer washers/dryers/stoves - I have to lock the washer/dryer as the cats might turn them on when they jump up and hit buttons.)

I personally do not like medications, however, sometimes they are a necessary evil and/or life-savers! Currently we only need these anti-anxiety meds for our mother if she gets a UTI, which can send her off the rails every afternoon and into the evening. One small dose and within 15 min or so, she calms down and will usually head for bed shortly after (at her usual bedtime.)

Summarizing - even during waking hours, this woman is a hazard to herself and you. She could fall down the stairs during the day, not just at night. She could decide to go outside for a walk when you aren't watching her every move every minute of the day (NO one can do that!) She could still take out food and leave it out, causing it to spoil.  There are just so many holes in this "plan" that is currently in place that I am surprised the boat hasn't sunk already. You *really* need help, both in caring for your mom AND in making the right decision for her future. I do hope you reach out to those who can provide help and ignore those who are adamantly against putting your mom in a "place." The alternative could be a graveyard (plus what happens to mom if something happens to you????)
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Have you tried over the counter sleep aid like Melatonin or can you get a doctor supplied sleeping pill? Something that may help her sleep.

And since your family doesn’t want you to place her in a home are they willing to help out? Someone sitting with her for a few hours early evening may be just enough to calm her and get her to sleep. Can they take turns so each person only has to come 2 or 3 times a month?

You need a support system! If you have siblings or friends or anyone who knows your situation and can help out. If your church goer don’t be afraid to put that out there. People may offer or know someone willing to help. My mantra is “do you know anyone interested in adult sitting”.

I’ve been caring for my mom for 8 years and have felt that “she’s going to kill me stress”. I have daughters that allow me to just get a quiet night in a hotel once a month to destress or have an evening out with friends. She doesn’t go out now and is on hospice. The aids that come help with bath can’t do extra time but they have friends that are looking for extra work. I am able to interview and hire them for a few hours on weekend. Any little bit of time to yourself helps, getting out of the house helps. When mom was more active I had to diaper her, put her in abdominal binder adult onesies and back zip pants to keep diaper on. Also used extra pad in diaper to keep from wetting furniture. (Buck and Buck for onesie)
I brought peri spray by the gallon and it helped with the adult urine odor.
Luckily she didn’t want to cook but go back to her house. Key lock dead bolts kept her in house.

Dont feel guilty about locking her in as long as room is free of things she can injure herself with, you are keeping her safe. I’ve had to come to grips with decisions people not in my situation don’t understand, but thought it through and realize that don’t understand and moved on.

Lastly my Primary Doctor is an excellent listener. She offers suggestions and some days just getting out the struggle helps.

Good of luck with your mom, or rather good problem solving, good decisions and as primary care giver your the boss so what you say goes until you come up with better options.
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Teresa914 Aug 2019
I think melatonin would be better than a sleeping pill. I just asked my doctor for something and she said she thought it wouldn't be a good idea because I live alone. It can make you unsteady on your feet. The OP s mother could fall and that would not be good. I take melatonin and that's what my doctor recommended. It helps me and doesn't make me feel doped up.
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A bed alarm is what they used at my moms memory care for those that wandered. Memory care was my moms choice 4 years ago  when she could make a choice , my mother passed last month but was very well cared for in a cottage setting  and in the end hospice came to visit.
Tell the family to take her for a while they will feel differently
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I get it! I have my 81 yrs old mother who has severe dementia . When my sisters and I decided it was time for mom to live with one of us, I was the only one to step forward. Once I did I layed down some ground rules , Since they both live out of state and will not be helping. I told them they can visit anytime, but they have no say as to her care. I will be doing whats necessary for all involved. They didn't help pay for the alarm system in my house to prepare for my mom or any other expenses. I researched a lot prior and was able to get with the state dept of aging and they helped so much. I have been able to get my mom in The Pace Program, which is a memory care program. They come pick her up 3 days a week from 8 am to 4 pm. This gives me time to breathe and more patience for my mom. . Look into your state programs if she has assets pay them down. But never feel guilty about doing the best for you all in your household. You said you have a son at home so you know this effects everyone . It sounds to me that your at a time when assisted living to become an option or at the very least nursing to start coming in and stay with her at night so you dont have to lock her in her room, making you feel bad. Also ask her doctor for meds to help her sleep. I love my mom with all my heart but my goal is to keep her home as long as possible, but I also recognize the time will come for me to allow people more trained than me to take over and I dont intend to feel guilty because I'll know I did my best and thats all you can do. Dont give into what the family wants unless they are prepared to share the responsibility . Stand your ground because you will be no good for your mom or your family if your exhausted. Find your State agency of for the aging.
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When the doctor's suggestion to my mom was to put crazy locks on the doors to keep my dad from wandering at night (and effectively trapping them inside the house without quick escape), we knew it was time for memory care. That is no way to live - rationally, safely, etc.

BTW, some of the residents in my dad's memory care have lived there for over 10 years, and one lady turned 101 this week. How long can a family live this way?
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Why is she in your home? Can you not afford care? Someplace she will be safe ? And they know what and how to keep her focused as long as possible? If she had a heart attack would you keep her at home? Dementia is an illness and needs professional care just like heart disease or cancer.
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worriedinCali Aug 2019
She’s in the OPs home because the family doesn’t believe in nursing homes.
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Is your mother on medication? My mom did that, but she would be in another world, seeing people sitting in the car outside. She would be trying to go to the barn to help her dad. We switched her doctor, and he immediately picked up on my mom's issues. Her previous MD chose to ignore it just saying is comes with age. After the new MD started slowing with meds... this middle of the night wanderings stopped You may want to explore her meds with a physician. We kept mom at home as her care givers for over 8 years. She just moved into a long term nursing facility in memory care.
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