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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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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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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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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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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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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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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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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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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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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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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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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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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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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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-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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Thank you all for your insights. It is supportive to know others are going through this stuff
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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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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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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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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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She needs to be in a memory care center, for both your sakes. The one here negotiates price when asked.
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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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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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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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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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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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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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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 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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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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