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Hi,


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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First of all, she may have a UTI or medication reaction that could explain her acting odd. But, if that's not it, then I would say:

Do you know anything about her type of dementia, medical history, health issues? Normally, providing care for someone with dementia is a huge job. It's very stressful and involves physical issues as well as mental ones. I can't imagine an 86 year old handling that kind of thing. It's also very stressful. They may insists on odd things and make irrational demands.

Dementia patients do have memory issues, but it's much more than that. Dementia patients may ramble, roam, obsess, have paranoia. They may even become violent. They may harm themselves, because they lose the ability to recognize dangerous things, like spoiled food, heavy traffic, over medication, etc.

I would read as much as possible about dementia, so you can understand the condition. Dementia doesn't improve. It can't be reasoned with. You often can't make a dementia patient happy. If they are happy, they may not be in 5 minutes. Every day is different.

Mental decline may be gradual and then a sharp decline. I would get her in a safe place where she can get care BEFORE you have a crisis, like a fall, fire or getting lost. Often something big happens that lets people know their loved one is not managing well with the dementia.

Normally, an evaluation is the best way to determine what level of care a dementia patient needs. Don't underestimate the level of care. I moved my cousin, who has severe dementia in a Secure Memory Care wing, recently and she has been VERY happy there. They know how to handle her. Making odd noises is not unusual in a Memory Care unit. She is much more relaxed there than in a regular Assisted Living facility. She has friends and is doing much better.

I would check out the Memory facility you mention and see if they think it would be a good fit for her. In some places, they have a Secure Memory Unit on one wing and a regular Assisted Living on the other end. If her husband went, perhaps they could stay under one roof and be able to see each other regularly, without him having to care for her. Eventually, she may not recognize him though. I would prepare for that.

I wouldn't think of it as leaving her alone. They have professionals who care for them, ensure they have mentally stimulating activities, social events, good food, medication administration, etc.

Her mental state will eventually be such that she is not operating with the same expectations that she has previously. The more you read about it, the more you will understand what I'm trying to describe.
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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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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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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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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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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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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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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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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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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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