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Me and my family is passing through a very difficult phase right now, very sorry to say this and I know this is not a proper way to start a discussion. But, my situation prompts me to start like this. My mom who is now 79 and was diagnosed with Dementia three years ago. She is cared in her home by my 86 year old Dad and I care both of them. Unfortunately, for last couple of weeks mom is making some strange behaviour. She is wandering round and makes loud or strange noises etc. I have two little kids, who is very much scared while seeing all these things. I don't have any idea on how to deal this issue. Yesterday, my hus told me about Prestige Care in Arizona , which is a dementia care center. But, I feel very upset when I think of leaving her alone there and my Dad also have the same opinion. I need to find a solution to it now. Do I need to take her into that care center? I would love to hear your suggestions on this.
Thanks!

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Hi, Although have replied already few days ago, I would like to add the following. I am now 63 years ONLY. But since 6 years live is very tough for me. I have had a very hard job (home caring for elderly people) and sometimes I had to lift people of up to 123 kilos out of their bed / chair etc.. because of their illness (heart attack / brain problems or severe dementia, as a result of which they could not help in any way to stand up / sit down). Doing so for several years, my back is totally damaged. I had several operations and now have a neuro stimulator. This helps a little bit, but also have to take heavy drugs (opium derivates) to have my pain a little bit under control. However I still have days, sometime I have periods of up to 7/8 days that my pain is so severe that I can hardly leave my bed or sofa to go to the toilet or the kitchen to fetch me something to drink or eat. My eldest sun is now 41 years, and I will NEVER accept that he or his wife would give up their jobs (even partially) to take me in their home so that they can take care of me. My other children life too far away, so that is not an option. Now I live in my own flat and have elderly care at home 4 x 4 hours a week by 2 different women, who are fabulous. If necessary, I will have to sell my flat so that I have enough money to take more home care, and hire a small flat. So I still can go on for many years. Or I could live in a "service flat" (here and in Holland as well) this is provided by the city / government). The flats are rather small, but they have lots of facilities, such as direct alarm with the 24/7 permanent supervision. Furthermore, I can go to the restaurant for my hot meals every day, weekends inclusive. If necessary, they bring the meals to your room. Furthermore, there is always a nurse present. Also lots of amusement is foreseen. For instance, each week some artist comes singing songs which were hits in our young years, or playing all kind of games, people who come and read books or articles from newspaper etc. Also one can take a bath 2 or 3 days a week in a jacuzzi, with a chair lift. Furthermore, services as hair dresser, pedicure and manicure is provided.
I would prefer this above a nursing home, because in my flat I still can decide whether I sleep until 0900 hrs, and in a nursing home, everybody is to get out of bed at 0700 hrs because breakfast is served between 0730 and 0800 hrs. Also I wld be free to look television until 20 / 2100 hrs. So a lot a personal freedom. Moreover the rent is depending on your income, and you have not to pay enormous amounts as for a private flat, so that no money is left for food, buying new clothing, presents for the grand children, etc.. I do not know if this system is known in U.S. but I find this a super solution for people who don't have serious dementia and still can walk a bit in their flat. I even could keep the people who are coming now each week, so that help from outside is possible. In case such service is unknown in U.S., may be it is a matter you can take up with the the city where you live, the government of your state etc... I am very happy that my sun, despite his 70 to 80 hrs work weekly is still doing some shopping for me, taking care of repairs, painting, etc..
As stated previously I have taken care of my husband with Alzheimer's until I was rock bottom. And then I also had to take the decision to place him in a good nursing home. Very very painful. But as my doctor said : take care of yourself as well. When you have a complete crash, you can't take of your mother either. With all my best wishes and a big hug.
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I promised... I will take care of her until one of us dies... This may not be right for everyone, but it's been the two of us against the world all of my life. I owe her this. as painful as it may be. At least for now we have the resources to keep her in my home. I pray it will always be so. She worked all of her life up to age 99. I'm one of the lucky ones who can get help and she saved her money. Good luck everyone who is going through this tough time and keep in mind that one day each of us may face this dilemma. If Mother was able, she would still be working and taking care of herself and helping out here in the house. This is not her fault. Old age sucks.
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Wow ypu All gave wonderful answers. First off your in tge right place here Your asking questions Take iy one day at a time with her LOVE her Emjoy het bring ol pictures out Show ypur kids Who she Was explaining the situations as u go i Take advice from here BThis can be a Road Make it Lovingly Don't let it beat u Your mom is just as scare. Help your dad ddon't just take over Enjoy your parents. I just lost my pops .mom n dsd married 64 years he was in his illness since 08 .i moved in with mytwo chchildren to help he passed 10/14 miss him and i would do it all over again . Get advice and take it fromherei did god bless
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Hello, Feel very sorry that you are in such a difficult and painful situation. It are your parents, so I understand that it hurts even thinking about a care center. I have a few minutes ago replied to the question "my mom has memory loss. Where does she really belong ?" and you will certainly have an answer to your question as well. Take steps in due time, don't hesitate to visit several centers. Seen the age of your father, something can happen every day. And then you stand there, totally unprepared. And please, please, please : don't blame yourself for not being able to care care of it any longer. You are also a human being, and as grateful as we must be towards our parents, we also have the right on a decent living. Specially while you have small children, they need your care and attention more now. And certainly don't traumatize them by seeing your parents in bad situations. With all my best wishes and a big hug.
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I also promised my mother that I would never put her in a nursing home. Two of my aunts died in a nursing home. They regularly lost their clothes, their teeth. A friend's mother lost her $3000 set of hearing aids. This same lady died from complications of a UTI that she got in the nursing home and it was not addressed. All 3 nursing homes had an A+ rating.
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My Mom has end stage dementia. Was diagnosed about 7 years ago. She is 86 and my Dad is 89. He is an awesome husband. They've been married 64 years. They live alone. I, am 58, and I have 3 elder siblings. I call them everyday and I visit at least 4 times a week. My siblings call all the time and visit during the week too. I am the designated "emergency responder" because I live the closest and I choose to be there for them. My Dad cooks, cleans, washes the dishes, feeds and bathes Mom. I have promised him that I would never put them in a nursing home (by any other name is still a nursing home). We're all doing the best we can since all the children are grown. You have a lot on your plate..husband and children..and mom too. If you decide to put her in a nursing home please do a lot of research. Many facilities, at least in NYC, present a nice front. You should ask around about the facilities, check with others who have family there, etc.
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Really, the first thing to do is to check for a urinary tract infection. My mother had one for over a year with nightmares, strange behavior etc. It's well now and she's mostly herself again.
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Yes, no matter what you have to do, find a memory loss place and apply for medicaid if you qualify and find a place that accepts medicaid. Otherwise, yes, get your courage going, look at the distress and fear everyone is under and do what is best for mom and everyone else. God Bless, don't be afraid to do the right thing.
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The one thing I have learned from being the sole caregiver to my mother, while my 3 Sister's never comes is that I will never put this on my son. My Aunt is with my Mom for now because my husband is very ill and I had to come home. I doubt my Sister's will help my Aunt because they didn't even respect the fact that I needed time to grieve the loss of my oldest son. First thing I did when I got home was talk to my only living child and told him that I was going to have my own plan put into place and will not distrupt his life. My heart goes out to everyone of you. After reading everyone of these answers, I am seriously considering relinquishing my POA. I honestly don't think I can mentally or physically handle anymore decision making for my mother's living condition because she doesn't want to help herself. Her demintia is from malnourishment. She has and ileostomy and I got 10 lbs on her in a year. When she found out I had to come home she stopped eating and is back at the malnourished state. I couldn't cram food down her. In this case she has chose dementia over living because she is angry my father died. She is 76 and is healthy other than nerve damage from back surgery. I have nerve damage as well and have tried to teach her tricks that I have learned through the years that help me deal with it. She flat refuses. Instead she just wants to tell everyone how much she hurts, and that they have no idea what pain is. OK, going to stop here because this is where I get stressed. Prayers for everyone that is living with a heart wrenching decision, or those that need a break and has no one to give it to them.
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As I have been reading posts for a lot the past few days, it occurs to me that so many people are struggling to care for family and it appears that many do NOT know about Medicaid, VA benefits, hospice, or even the fact that in most big cities there are small individual care homes for elderly. It seems that almost everyone does not realize that Medicaid, once qualified, will pay for helpers coming to the home, so that an elderly person can stay in their own home either. This is sad, because so many are giving up their own lives, and even their own health and their family relationships struggling with elderly parents or others, all alone with no one to advise them of any of these possible support systems that are out there. And I imagine that most think there is no way their loved ones would qualify for any help when the reality is that anyone who has less than $2000 in cash on hand, plus a house they own and one car, ARE eligible for Medicaid. The less resources there are, the faster the approval process. Seems to me that the first advice we should give ANYONE we hear about who is taking over care of a parent or other elderly person is to invest the money for a few sessions with an elder care attorney. Generally the first consultation is free of charge....and one could walk away with a plan and list of resources to help themselves and their person. Because I've been there, I do understand that once you start with the caregiving, you are generally so busy, and so stressed and so tired and so 'in the middle of it all' that you cannot stop and figure out anything....so I suggest right at the beginning of facing this, stopping long enough to get some resources, make some phone calls have a few meetings with people who can advise. If you have other family members, and you are doing the caregiving, get them on board with pulling together the resources....and always remember....what it comes down to is making decisions that help keep these parents or grandparents SAFE. It cannot be all about doing what they want, or making them happy or not having a fight with them.....the first assessment has to be whether or not they are SAFE where they are! I think of how hard it's been for me, when my parents had a plan and I was given POA and all authority....and my heart aches for those who don't even have this much and are left with the responsibility and the 24/7 caretaking!
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I still support giving medium chain transfatty acid supplements in the form of coconut oil 3 X daily. Mix it with pudding. It must be the cooked type of pudding 1 Tbsp per serving. It tastes good and has been proven by experience to help Alzheimer's.
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I'm a little confused: You say that your 86 year old father takes care of her in their home, & then say you care for both of them. Is she living with you or with your father?

The care for your mother should not be based on what your kids think. Explain to them that your mother is old, has medical problems & is sick & may do things that may not seem right. Explain to them that there is no reason to be scared of what she does.

You don't say anything other than the fact that she is wandering around & making strange noises. This, in and of itself, is not a reason to put her into a facility. Can she bathe herself, feed herself, get around the house by herself?

She should definitely have a visit with her doctor to check out the reasons why she may be wandering & making noises. Like others have mentioned, UTI's in the elderly manifest themsleves in odd ways sometimes.

My firm belief, being a nurse for over 25 years & caregiver for an 86 year old mother, is that people do the best in their own home rather than a facility. While some people don't think twice about throwing their parent(s) in a facility, unless I physically could not care for her myself or get enough help to care for her in my home, I would not put her in any facility. Everybody always says "Go look at places, interview the staff, blah blah blah". The truth is, in this day and age, no matter what a place looks like, they're all the same----unbelievably understaffed, food that isn't so great, huge risks for the transmission of communicable diseases, lonely, huge risks for falls, etc. Long term care facilities are for-profit places----they cut corners, scrimp on pretty much everything to maximize their profits, have as little staff as possible so they don't have to pay the salaries & benefits. People want to be where they are comfortable---in their own home, with their own "stuff", food that they like & people that they know.
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There's lots of great advice here. I would just like to add that if your elderly relative fell and broke her pelvis (scary example), would you feel like a terrible person for taking her to a hospital and to a nursing facility? Her mind is "broken" and she has a terminal illness that you cannot repair, no matter how much you love her! You are showing love by getting her the best possible care, and unless you are a nurse with training in every aspect of patient care (like lifting and bathing, etc.) and are prepared to work 24/7, you will be in for a superhuman challenge. Let me repeat, nursing home/memory care is not giving up on someone with these issues--it's doing the best possible thing for them!
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Humm. Ok I have a Mother who has Dementia she is also 86 I feel the same way to leave her in a strange place with people she don't even know I would think it would be scary for her. It wold be for me if i was like that. I didn't like the Idea ether so I took care of her all by myself the rest of her kids didn't care only about themselves. When she could talk she told me she would die without me to look after her and care about her she told me she tries to be strong she hated the way she is. She was crying. I did it as long as I could which was like 5years before she got to I could handle it alone . So everyone tell me this? what do you do with someone you love so much that you have to put them in a "Nursing Home" because you can't afford to put her in a proper place where is belongs? I had no choice here in this town the Nursing homes are ALL BAD most of them ALL. My mother almost died do to Nursing Home Neglect! like 4 times I have to move her in another one she ended up in ICU because of it. She did not deserve that. They charge way to much to put her in a memory loss place like an Alzheimer's Dementia place. I went through a lot all alone Nobody cared or wanted to help my mother or me. I had a hard time finding a nursing home that there was an opening to put her in cause I needed a brake I was Not mentally or physically well after taking care of her, as much as I love my Mother. From what I know most can NOT be trusted you have to be there on and off to see how she really is like at least 3 times a week. These people with Memory loss need to be in a proper place for memory loss. Not a Nursing home ether. And to me whether they can afford it or not the Government should give them the care they need not just because of the age but because they were a Mother and or Father at one time they all deserve the Very best care! My mother is sad to say she is In a nursing home. And she is Not getting the proper care she needs. I finally found one that she is doing ok in, but to me its like being in a (Concentration Camp) . I hate that she is there but I just can't do it all alone anymore. Good luck Miss I wish you the best in the World I do. They all tell you shes doing fine great the Nursing homes but they Lie she was not.
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I agree with the checking out of the UTI. My mother went down hill for over a year before we discovered that she had a UTI. She still forgets, acts a little strange, but not demented, but the UTI can go on undetected for years. This is the first stop in the process. I hope it's that and you get your mother back.
Also, since Dad is sane and cares for Mom, think about an AL facility so they can be together and independent. If she is not violent and does not wander this might be a good alternative to separating them.
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It depends on the person, but some dementia patients have behavior that make it very stressful to be around them for long periods of time. IMO, you have to have a certain temperament and patience to handle behavior that is demanding, repetative, and bizarre.

For many people listening to someone ask the same question 60 times within 60 minutes, is too stressful. It's not their fault, because they don't recall they are asking the same question over and over. I handle it pretty well for an hour or so, but my parents have a hard time with it. You may also have to hear the dementia patient constantly talk of doing things they should not be doing. You have to decide if you should address it or ignore. For example, when a wheelchair bound person says they are going to start walking without assistance. It's tough.

You have to protect and learn to redirect and that can be a constant duty with some patients. That can be very challenging, especially if you have young children around. It's so stressful for me, that I would not expose young children to it for more than a few minutes.
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Watch for UTI we had a trouble alwsys he never wanted meds and it is pAinful he would act out . We had to put him temorRy 1ti 2 weeks in home by iv.
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I and my mother have cared for pops he just passed 88 years old. I mobed in with them i explained to my children about pops that he had dementia they helped they would call him camel when he would hold his liquids and then spit.TThey would follow him and say ALERT gpa is on the move we got walkie talkies . They miss him they would play restraunt and take his orders but they would put there orders in what they wnted on w i explainwd to them of his illness hang in there we miss hum and it was not easy
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Like above, if there is a sudden change in behavior there may be something medical going on such as a UTI, pneumonia or some other other illness. You can also check into an adult medical day care for your mother. I find them to be a wonderful resource. You can contact your local Area Agency on Aging, Senior Center or Bureau of Senior Services for information on options for your mother. There is nothing wrong about looking at a care facility. The long-term care ombudsman can assist with information regarding facilities and the above agencies can guide you on how to admit your mother to a care facility. There are also in home programs that could assist you in caring for your mother at home. Dementia does cause stress especially when it worsens and behaviors increase. It is difficult if someone wanders and exhibits strange behaviors. Being a caregiver is stressful and dementia only worsens. Look at all of the options that are available then discuss the options with your family and pick the option that is right for your family. You may want to try the medical day care and in home help to see if it works, and if it doesn't then you still have the option to move her into a care facility. I commend you for asking questions and caring enough to make sure you are making wise decisions regarding the care of your mother.
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I have been caring for two parents with dementia for almost 3 years. Two years ago we had to place Dad in a Memory Care unit. We are also in Arizona. Mom is still at home. This is a tough road to walk, and the first thing everyone has to get in touch with is that your main responsibility is to keep your Mom safe right now. NOT keep her happy. Not do whatever she wants. It took me a LONG time to figure this out, and lots of talking to by others...so I just say it up front to people now. Second, what decisions to be made can only be made by whomever in the family has the power of attorney or other legal authority. If it is her husband...your Dad, then he is the only one to decide and you can only support him. IF she may soon need a facility, then hopefully Dad and you kids understand that there is a lot of financial prep to get in place because these facilities are expensive and Medicare or medical insurance does not pay. Family will need to pay privately until she qualifies for Medicaid, so you need to get ready for that process. And third, I would say, is it possible to start by keeping her at home, but hiring in some home care helpers? This is what we did with my Dad, and we kept him at home for quite a while until he started throwing things and yelling and not being safe there. You can hire someone part time. If you go through a home health agency you can hire someone for as little as 4 hours a week, and then book more time as it's needed, but at least you have some support and advice. My parents also had an alarm system installed, and now, I can activate an alarm when Mom goes to bed, and we have two cameras so I know where she is in the house and whether or not she is OK. The alarm will notify if she leaves the house. You may have to have locks if she starts to wander or get into things....and remove stove knobs if she keeps trying to cook and is not safe etc. but some helper coming in can see that she is bathed and goes to the toilet and stays with her while family gets a break or goes shopping etc. You may also need to consult an elder care attorney to help with getting qualified for Medicaid. If Dad is VA eligible, there is home care payment for Mom from the VA, but all these things need to be applied for and can take months to get approved. I also urge you to go with Mom to the doctor; see if you need to get her to a neurologist to get worked up and diagnosed for whether or not she has an infection that could cause current symptoms. Some infections, like with the bladder or kidneys, really do make dementia much worse all of a sudden. It also helps to understand exactly which kind of dementia she might have, and whether or not some medicines might slow down the progress. If you would like the name of the eldercare lawyer or law firm that has helped us here in Arizona, please let me know. They have given me just so much help, I cannot thank them enough! Helped set up a trust to protect my parents assets, so both could be taken care of until death; have helped with all the application/paperwork for Medicaid/VA; put together the POA and durable health care proxy for me, and helped me handle their investments and bills AND assign a case manager to keep all this stuff organized and happening in the right way. This is a hard walk for all family members ....and I say start with in home help while starting all the paperwork.
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Yes, check to make sure her behavior isn't caused by a urinary tract infection or something along those lines.

Then consider the fact that her behavior -- if it can't be controlled -- is upsetting your children. This is a heartbreaking situation for you and your father but I think your children have to come first.
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Perhaps you could give Dad & family some respite by exploring Adult Day Health facilities in your area. No overnight stay just daytime program. They will provide meals and activities for her too! The home health aid could be good too. Contact your local VNA or State Home Care.
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I have been caring for my 98 yr. old mother with Dementia for 8 yrs. She started wondering, which was not a problem until she actually got out of the house one morning at 5:oo. We were sleep and the police called. Thank God she just made it around the corner. She knocked on a neighbors door and he cared for her till i picked her up. Since then, we have installed an alarm. That happened about 4 yrs. ago. We've had no problems with that since. She had a lot of confusion and talking out of her head, she didn't make since in the things she was saying, i took her to the doctor, she had a uti. She still can't be understood when talking, that's because she had multiple mini strokes. I had 4 small grandchildren, they didn't understand what was going on with great great grandma. I explained to them that she was sick and they shouldn't be afraid of her. They watched her all the time, and sometimes would laugh at her behavior. I told them not to laugh, because she could not help what she was doing. I began to see them helping me with her. If one of them saw her trying to get out of her chair, they would run to help her. They held her hand when she would walk, if i needed to change her depend, they would race to go get the depend for me, When they saw me fixing her food, they would get her tray and place settings.It got to the point where they would ask if they could get her water. I turned their fear into understanding. At the time they were 3-5 yrs. old, now they are 6-8. My mom has a habit of spitting, she will spit anywhere at anytime, she still talks of going home after 8 yrs. I was fortunate enough to be able to keep her and work here at home. I'm a home health aid and she is my client. If i put her in a facility, i would not be able to see her much, because a home health aid schedule is hectic. So this works for me. You can get an aid to come in and that would take some of the stress off of you.
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My heart goes out to you and your family. My mom had dementia, it takes it's toll on the family that cares for them. My mother had gotten so she just wanted to die, always threatening to stand in the road and let a car hit her, or take a gun to her head. She even went so far to fine her pill box and take a bottle of pills. She needed 24 hr round the clock care, something I could not provide for her. On her last trip to hospital after taking those pills, the state stepped in and took the burden off me. Due to my health declining and mom needing more help then I could provide and placed her in a nursing home that was equip to take care of dementia patients. I felt guilty at first, then after seeing my mom interact with people her age I rejoiced, it was the best thing to happen all way around. You have to think of your health, I am sure will you agree the stress is taking its toll on you and your family. Don't feel guilty for placing her in a home, it really is the best thing to do. You can take your dad for visits and enjoy each other company. God be with you all thru this.
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Your mother is passing into another stage of dementia and making "strange noises" is a typical symptom, and you do not say what other strange "behaviors" she is showing. If you cannot explain the behaviors to yourself, you will not be able to with your small children. Please know that if you decide to put her in a memory care facility she will not be alone. Between staff and her family visiting she will have a lot of people who care about her. Her memory loss is going to take her personality, her ability to recognize family and then her body will lose the ability to support her life. This is a terminal illness and you and your father need to make some decisions about her care so you and your children will be able to function in a "normal" environment. Know that loving families put loved ones with dementia in care facilities because they know it is the best place for them, under professional care. But, whatever decision her husband makes about her care should be best for all. Best wishes!
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Dear Kinsterwill, the one aspect that hasn't been addressed is your ability to make this difficult decision. No matter how "right" it may be to move your mom and possibly dad into a care facility, we, as the caregiver have to manage the decision process and that can be so hard. If you can take the "emotion" out of the decision, you'd see that getting the appropriate help for your parents makes sense, but we typically have that thought that we have failed if we move our loved ones into a facility. That's just not true. You must watch out for the entire family, and although it may make you feel bad to make this decision, it won't for long. You can remain active with your parents while they are under the care and watchful eye of professionals in this field.
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It's really hard to have to make the decision, but what about some respite care to start with, to see how you all feel about that.I work with elderly dementia patients and to me it's the best job in the world ( and I also have the advantage of being able to go home at the end of a working day) . If you find a good care home, your mother will be loved and cared for, have social activities to enable her to keep her personality for as long as possible, and you will be able to visit when you want to. I've found that care staff love their residents as if they were their own - they certainly do at my place of work, and there are trained nurses on hand 24/7, with the local GPs just a few minutes away should and when medical needs arise. The families are always consulted about the care and medication, so it really is a case of making the emotional leap bless you - hope this helps
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Excellent advice above. have her medically and psychologically evaluated before making any big decisions. While this behavious continues try and keep your little ones away from grandma. this will make a lasting impression on their young minds and they are too little to understand.
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Sudden changes such as making odd sounds. First take her to get checked for a UTI!
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Go and look at the facility. Don't make up your mind and say NO without at least taking a look. In fact, look at several places and compare them.
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