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My wife is in a nursing home. She has been there for 10 weeks. She has dementia and periodically she has sundowners. I would say 70 to 80% she is fine. Although she can't remember recent events. Other than that we have a good life together. (except for the periodically sundowning. I'm 86 years old. Very mobile and active. I could walk a 6 mile day. My wife is 80 years old. She can shower, dress, put on make-up and etc. We have been married for 63 years. We're very attached to each other. We have a few years of life left. I'd like to spend those few years together. We both miss each other very much. I think about her spending the rest of her life in a secured area and I to feel lock in when I'm in an empty home surrounded by 4 walls. I would like to bring her home and enjoy 70% of our remaining lives together. I know that her condition will get worse. But when that time comes a descion will be made. But in the meantime we'll both have somewhat of our lives back. She is very difficult when she is sundowning which is about 30% of our time together. And it is very rough. But I'm looking at a trade off. 70% versus 30%. What do you folks think and perhaps your advise..

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donero: I, too, am praying for you.



“If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you” (James 1:5).
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While we have freedom to make choices, we do not know what the outcome of our choices will be, only time will tell. So we can do research, consider what others have done in similar circumstances and their outcome. It is a process where we have to evaluate our situation and make a decision, knowing that we will have to live with the outcome. Hopefully, we can strike the right balance.

Whether at home or at a care facility, little can be done to change the inevitable course of this tragic disease. Talking to someone in the Alzheimer's Association may help. This organization can provide many resources that can help in the decision making process. While no one can make decisions for you, this forum does offer interesting perspectives on how others have or are dealing with love ones with dementia. Consider the experiences and make your best choice.
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This is not a decision of the mind. You would say it's a decision of the heart. When I was a little boy I went to catholic school. A priest was teaching the class that day. He said that God knows everything. Even as a little boy I pondered that statement. How could that be? If God knows eveerything, why did He make bad people, have wars and etc. I brought that to the attention of my mother. She sat me down and said God made all of us with free minds to think for ourselves. He does not interfere. FREE MINDS. So in ed812day2 case his decision was to put her in a nursing home. Perhaps for the rest of her life. In his writings I know he loves her very much. Visits her 5 times a week. Married 53 years. I felt his feelings towards the end of his statement. I felt that I walked in his shoes. So maybe my decision will be to bring her home God made us with free minds. So one would ask since we have free minds why would you come on this Forum and ask for this advise. The best answer I could give would be " no man is an island." The reason for my delay is that I'm taking her to a psyciatrist to analize her. Her appoinment is on the end of this month. God bless you all. I'll be back to update all of you.
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smeshque Jun 2018
I so hope and pray you get to bring her home. I am praying for you.
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Donero,
Please lean on your children for help and advice. Talk to the nursing home and schedule a trial run, bring her home, maybe for a weekend, see how it goes.
I'm sure the staff is just looking to have her adjust to the new environment as moves are very very difficult, as is adjusting to a new place. Make sure your home is safe and you have help.
Enjoy your last year's together, but remember to take care of UOU!!
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So what did you decide? With all our advice? I think you’ll be very sorry if you bring her home...you will be exhausted beyond belief. Please believe me
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Thank you ed812day2 for providing the update with more information about how you handled your wife. It does make a difference, and can suggest perhaps others can work out something to keep the person home longer. However as you note (and I mentioned too), every case is different. What works for one may not work for another. There are certainly similarities in most dementia cases, but different causes can yield different symptoms and progression. As you summed it up, the challenge IS immense!

donero - no apologies needed. There is a lot to digest and a lot to learn and consider for making your decisions for the future. This IS a major decision. If you do bring her home (you implied that you are leaning that way), you also have to keep in mind that your son and his family (and others) may be against any decision to bring your wife home. Be sure they educate themselves and as you learn, teach them or step in when you have to.

Set up any assistance you need beforehand. Educate yourself so that you know what to expect and perhaps understand how to handle whatever issues arise. Although I am not a big fan of medications, I would suggest you have her evaluated by an appropriate medical staff and find if there are any medications that might "take the edge off." Have a secondary plan in place (this will likely be finding a place that you think she would like and getting on their wait list.) Unless something your wife says or does might impact her or someone physically, just go along with whatever she says/thinks. If she gets in a rut (agitated, fearful, repeating herself, whatever) work on redirection - trying to reassure her, agree with her, changing her focus to something else. Avoid anything that seems to trigger these funks. Mom tends to repeat herself VERY often... it does get tiresome, but until you can change the focus, just keep on answering it like it was the first time! Learn how to make little white lies (this was hard for me, as I believe in being honest, but sometimes it is the best course! Our mother has been making references/asking about her mother since November. There is NO point in telling her that her mother is long gone. It would hurt/confuse her and she likely won't remember it anyway! So long as the "lie" is used to comfort and not hurt, it is acceptable.) It is a new reality for her/others, and in some ways we have to learn how to live in the dementia reality.

I do hope things work out for you and your wife. You obviously care for her very much and if you can get this to work and salvage a few more "good" years with her, it should be good for both of you!
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Don, keep us up-to-date on what is happening. And please feel free to pop into the forum any time you want if you have a caregiving question or you just want to talk.

I hope this is a win-win for you. At least you can say you tired. Here's hoping for the best.
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Don, best wishes to you as you struggle with this decision. It sounds as if you will make one that most here would not attempt, including me. I cared for my mom for four years before she was placed in memory care. I was worn out and was not willing to care for her any longer, much due to treatment of me by twisted sisters.

Once I made the decision I did not look back. It would have been very difficult for mom to change her residence. When she was kicked out of the first place, the move causes a decline which was expected. It may have had something to do with her passing four months later, her husband also passed eight months before. Major life changes, very stressful ones in the eight months before mom passed.

Don, just make certain, if you decide to bring her home, that there is a plan in place should some major medical event happen to you. Make sure you have planned outside help so you get some time off. Plan on grocery delivery, med delivery, yard help, caregiving, house cleaning, whatever you need to get the assistance you are going to need.

Again, best wishes to you.
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Donero- i am so happy to read your last post. May God give you the strength and allow things to work out for you bringing her home.
Will keep you in my prayers.
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Donero, I’d like to thank you for being such a loving and caring husband to your wife as you diligently seek the best for her. Not everyone has someone looking out for them as well as she does and I’m sure no matter where the dementia takes her she in some place knows of your love and concern. No need for apologies here, we all hope you’ll find the decision that works well for you and your wife
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To those on this Forum and those that participated on my question, I sincerely apoligize. Please give me a little more time to address my descion. It's really not fair of me to ignore all this knowledge that was handed to me. Please bear with me because I have a few issues that has to be addressd. disgustedtoo----- I have gotten so much out of every word you wrote. I kept reading your statements over and over. Thank youi. I read all the responses day after day with tears in my eyes.I know I'm not alone. I must say this. I believe that I will be bringing her home. GOD WILLING.
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Very interesting comments. It is hard to suggest what one should do about their love one. I just wanted to share my experience. In my case, I read a lot about caring for persons with Alzheimer disease. Both of my wife's parents suffered from various stages of dementia. We kept her Mom for short periods of time. My wife referenced the book - "The 36-Hour Day" when dealing with her Mom. I referenced it in dealing with my wife. Yes, I had a fairly good life with my wife since her illness was diagnosis, over the last four years. Yes, the bulk of those 4 years were somewhat pleasurable. Yes, I did get to some enjoyment from my wife's companionship. But is was very difficult at times. Even now, I entertain the thought of bring her home. So, I understand, to some degree, how donero may feel. But, I know that my wife is ill and it will get worst. I visit her at least 5 or 5 times a week. The visits are usually good. The anger and irritability against me has almost ceased. She does have some issues with other residents at the facility from time to time [anger and irritability]. I try not to second guess myself or anyone else about what to do about love ones with this terrible illness. It does not appear to be a win win situation. This is a great forum to get divered views on the subject. Keep searching...the challenge is immense.
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donero has not returned to update us. If he does or there are others in this or a similar situation, please realize there is no one size fits all answer to any such question and not knowing the details makes it even more difficult for any of us to make any suggestions.

Yes, as others have pointed out, ed812day2 had some wise insight to provide, but also note that it would appear that he kept his wife at home for about 4 years after Dx, noticing the increases in memory loss, confusion, agitation, etc. He did not move her until the issues escalated. Were the bulk of those 4 years somewhat pleasurable? Did ed get to enjoy his wife's companionship until she drifted over the edge? He does not elaborate. We do not know any of these details about donero's wife:
- is/was this "to-do" a one-time occurence or was it common?
- was the issue escalated by those who are unaware of how to deal with dementia?
- is/was she on any medications?
- was this a case of sun-downing gone awry?
- what is the reason she is in a nursing home (or is it MC)?
- what reason does the staff provide for suggesting restricted visits?
- why would the staff refuse outings or home visits?

If this was a one-time occurrence, she should be thoroughly evaluated and if possible provided with treatment/medications that could help control any outbursts (our mother is usually easily redirected and distracted, but we now have a VERY low dose of anti-anxiety 'as-needed' for those few times she becomes unreasonable - in our case this was due to UTI. Classic sun-downing, she'd be fine in the morning.) The same anti-anxiety can also help with the sleep issue (helps them sleep through the night better.) It was NOT enough to keep her "drugged", just enough to take the edge off. It may take some time and juggling, but if you can find the right medication(s), it should "handle" a good part of that 30% of the time that she is "difficult." Learning all you can about dementia and the "tricks" of the trade can help with those times as well. Even if it was not a one-time occurrence, it CAN be the result of not understanding how to "handle" people with dementia (don't argue anything with them or contradict/correct them, agree/go along as best you can, redirect, refocus, whatever it takes to NOT get them more riled up.) Learning how to manage those with dementia and sometimes appropriate medications can alleviate most/all of this and allow the person some dignity and some quality of life at home. Once they cannot be managed and/or personal care becomes too much to handle, then a move (or if one can afford it, 24/7 home care) can be made - meanwhile those options should be on the table for research - look for places NOW, don't wait until it is needed!

The suggestions for getting help are valid, as one cannot do it all at ANY age without it taking a toll, much less trying to do it in one's 80s! Since she can still take care of ADLs, assistance would only be needed to help out in other ways, say yardwork, house cleaning, and perhaps laundry, to take some of the load off of donero. That would free up donero (or whoever) to spend quality time with the wife/SO. More assistance can be added as needed, but at least from what he has told us, this should not be needed for some time (of course, every patient has their own timetable and different forms of dementia can progress at much different rates.)

We chose to move our mother to MC. She refused outside help, did not want to move to NC with one brother (thankfully, but that is another story...), the other brother is still working and I could not physically care for her. However, given a loving relationship and the desire to be together, so long as one has help and support, it should be doable (at least during the early stages.)

Until such time that it becomes more cost-effective to use MC AND/OR the care-giver can no longer provide the care needed, even with outside help, it should not be that difficult to make arrangements, prepare the home for the interim to have the patient return AND give donero and his family members time to "bone up" on dementia and how best to handle those who have it!

At the very least, I would suggest finding out WHY the restrictions are in place (no stay over in a semi-private is understandable) and if need be, find another place if she really needs to be in a "safe" environment. I personally would raise red flags over a place that only allows me to visit once/week and not allow any "outings."

Also, for donero and anyone else who does not understand "dementia talk" - I do not think you really know what 'show-timing' means, based on your response. You say:
"No she is not showtiming. My wife is a very simple person. She would not know how to showtime. She is meek and mild."
Show-timing has nothing to do with being meek, mild or not, nor is it anything about being simple or highly intelligent. In my experience, this occurs usually in the early stages of dementia. They know something is amiss, but don't really understand what it is. Put in certain situations, they can hold up their end of a conversation or answer questions and sound "fine." It is kind of like acting, but they can often fool anyone who is not really familiar with them into thinking they are fine (doctors do not see them often and this is when they can often do this, so doc thinks they are fine or only mildly impaired cognitively, but in reality the lapse and other signs are much more prevalent)  Frequent visits by family and friends, we see through this charade - however she and others can sometime pull the wool over your eyes too!

Side note:  although it is not always the answer, has she been checked for a UTI?  Based on the little information we have about the "to-do", my suspicions lean toward son/family members not knowing how to "handle" dementia patients and perhaps in trying to defuse whatever went on with donero, they just made things worse!  Asking donero to take a walk was probably a good idea, but then mom should have been allowed to regain composure, and direct the discussion elsewhere to avert escalation.  One of my brothers is very inept at this and just pisses mom off even more.
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It's been almost 2 weeks since we last heard from donero, the writer of the original question. Hope everything is ok.
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I noted that the OP mentioned a "new home" that his wife was interested in arranging. Big red flag! People with Alzheimers don't do well with change--and also tend to think of "going home" as going back to a long past place. She might easily have problems dealing with a new home that she doesn't have ingrained familiarity with. If you can arrange with the NH for you to spend significant amounts of time with her, that could be an ideal situation. I also had a relative that spent most of his days with his Alzheimers' wife until she passed. If the NH is a good place that you are both comfortable with, that might be the best answer. If it's not, she shouldn't be there now.
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donero, if you do bring your wife home you also need to consider the cost. Make out a budget as how much it would cost to have the same care at home compared to the cost of Assisted Living/Memory Care and the cost of a Nursing Home.

You need to remember you need to save funds for yourself when and if you ever need these facilities.

Example, my Dad had to budget $20k per month for 3-shifts of caregivers who came from an Agency that was licensed, bonded, insured, and had workman's comp for their caregivers in case one would get hurt on the job.

Then my Dad moved out of his house and moved into senior living. Eventually he was in Assisted Living/Memory Care which cost him $7k per month. That cost included housekeeping and daily linen service, plus meals. And Aides who would help him bathe, get dressed, and make sure he was feeling good.

When my Mom was in long-term-care/nursing home, it was costing her $12k per month. Mom forgot how to walk, stand, to feed herself, etc :(
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ed812’s post above should be given much consideration. He’s experienced many similar things to our OP and has real wisdom. And let’s not think because a loved one lives somewhere other than in home that the family isn’t doing caregiving. It’s then that husband and others are called upon to be vigilant in making sure everyone involved is doing their job, and the care is all it should be. My mother’s nursing home care was no doubt far better due to our family being involved and present at the facility.
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Don’t become her caregiver. You’ll be resentful, angry and sorry. If you bring her home you need help probably live in. Are you ready to set your clock alarm to change her diaper every night 2 a.m.?
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Was your wife in the nursing home because of illness? I know you miss her. How is her health generally, besides her dementia? How would you feel about assisted living? Most facilities allow married couples to stay together in one unit. Then you’d have backup during the sundown episode and meals, housekeeping, laundry, possibly transportation and medication administration is all assisted with, plus bathing, dressing, toileting.

As your wife gets worse and your own health starts to go, it will be difficult without assistance to handle daily life.
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I recommend asking her where she wants to live. If it's at the nursing home, then I'd leave her there. If it's home, then I'd get a home caregiver to help out.

Light therapy can help with Sundowner's. Get full-spectrum lights. Keep them on during the day. Turn them off after dinner. Also, make sure she gets sunlight in the early morning. Light will help regulate her body so that she sleeps at night and is awake during the day. That should help her from getting irritable in the afternoon/evening.
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Three weeks ago I placed my 94 year old father in a skilled nursing facility. It has been hard on both of us. He pleads for me to bring him home. He believes he can live by himself (though he has lived with me for 3 years and was not able to totally care for himself. Our main reason for placing him was the contant night roaming. My husband and I were not getting any sleep. It is so important not to get sleep deprived. I know it’s not easy but letting her stay at the facility is the best choice. I see my father any time I want. So you might consider checking into some other facilities. 💕
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donero: IMHO, I think you should bring her home so that you can find happiness in those remaining years.  You may find it challenging (the 30 %), but the 70 % could balance it out in joy.
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Bring her home and enjoy what you have left. Maybe you can get some help at some point to deal with difficult times. Best of luck and God Bless you both.
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Bring her home. Life is short and it’s not always easy. But definitely worth the time spent with your precious wife.
I can sense from your post that this is what you want, so make it happen!
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Do you have plans in place so you are prepared if she starts to get "rough" with you again? If your family thinks she needs to stay there, then that is where she probably should stay. It is so easy to slip into denial. Especially when you are lonely. The woman you loved is slipping away from you and that is so heartbreaking. However, you are 86 and you don't have the strength and stamina of the young person you are in your heart and mind. I know, I am going to be 84 next month and the girl inside isn't that old. My hubby is 86. Maybe like others have said, you need to move her to another place or at the very least have a long talk with the admin staff where she is. If you do, I would suggest you bring your son along.
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Donero, read Ed's experience carefully, then re-read it. He has gone through the same thing. It took courage and especially LOVE to come to the decision to place his wife. One of the most difficult things is for us to admit to ourselves that care provided in a facility is necessary. There comes a time for most of us that we have to admit to ourselves that we cannot provide a safe environment or the proper care any longer.

Also, each move will cause another decline. Your wife needs stability and routine. To move her again will be very hard on her then also YOU!
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Very interesting and diverse comments. I have a story too. My wife is in a memory unit of a senior living center. She has Alzheimer. She has been there 3 months. I too question whether I should bring her home. She ask me to bring her home each time I visit her [4 to 5 times a week].
As I ponder the question of her returning home, I think about how and why she is there. It has been about 4 years since she was told by the doctor that she has Alsheimers. I have noticed the increase in memory loss, confusion and agitation resulting in out burst of anger, name calling, threats of bodily harm to me. I have seen in her restlessness, anxiety, wandering-especially in the late afternoon and at night, sometimes in early morning.
Three months ago, she started calling the police, saying I was a threat to her. She would wake up in the am [2,3,4,5] get up and turn all the lights on in the house, and then started accusing me of stealing her money, abusing her and she decided she could not stay in the house with me any longer. Later that same day, she could not remember her actions.

Although there were keyed dead-bolt locks on the doors, she went out of the window, to escape from me [she believed I was trying to hurt her]. To shorten the story, the APS [Adult Protected Services] got involved and I received a court order from a judge to provide a secure environment for my wife outside of our home for at least 20 days. It was somehow expected that things may improve during that time at the facility.

When, I visit her at the facility, she is pleasant . She does not appear to be angry with me or fearful. I am not a threat to her now. but, I tell myself, she has Alzheimer, and thing will get worse over time and not better. The environment at the facility may be a sort of "safety net". That could change if I bring her back home, going back to the way things were before entering the center. I would not get any rest, Sleep deprivation is bad for your health. I have been told that I need to stay healthy so that I can care for her, even from afar.
So, while I missed her [been married 52 years], retunring home to just me and her in the house may not be a good idea [two adult sons out of state]. While the facility is not perfect, I believe it can care for her better than I can by myself. Of course I do a lot of second-guessing. I think that is normal.

Before she entered the facility, I had arranged for expereinced people to set with her. She resented it. So, for now, she is stiil in the memory care unit. It breaks my heart everytime I visit and leave her there.
This a an awful condition that requres hard decisions to be made.

Well this is my story, and it continues.
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Donero- Interesting you call the place your wife is a "Nursing Home" Is it an Assisted living center? If you make a plan for home care there should not be any resistance for taking her out and bringing her home. Get her an alarm bracelet so you know if she leaves the house or needs help. Have someone trained in caregiving there during her known difficult times of the day. If she is on any ALZ medication get her off as the side effects are usually terrible and letting it progress just gets you over the angry phase quicker. Watch for Urinary tract infections (in elderly they don't usually show as symptoms other than erratic behavior. Keep special things she still recognizes around her and learn the way to divert conversations and change the subject and remember it is not her speaking or acting out but the illness. Have been where you are- and I think the at home healthcare is so much more tolerable with dementia patients since it is not a revolving door of untrained or poorly trained caregivers. Reality is however that she will not be returning to "Take care of you, or the home" but to be there instead of in the home. You will become a big part of the caregiver routine and it is a strong love that can do this. 63 yrs is a long marriage! But 80 for a physically healthy woman is now young. My moms dementia started at 80 and she is still alive at 92, although mentally mostly gone other than occasional pops up out of the rabbit hole. The cost of keeping her in a home could be transferred to home health care.
Good luck and hope this was helpful! Milesaway
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donero

A tough decision indeed, let me tell you my story:

My wife began showing mild signs of dementia about six years ago at age of 77 years. Six years later at the age of 83 she was in the very latter stages. Could not dress herself, could not most of the time carry on a conversation, could not remember the past, and in short was definitely not the loving person I married sixty three years ago after going together for the four years of high school. I had taken over the jobs normally did by a housewife. I cooked, dressed her, did the laundry, cleaned house, grocery shopped and endured 32 hour days.

In Jan of this year she fell and broke a hip. After a new hip replacement, two weeks in rehab, she was moved to a private care facility. She did well for the first couple of weeks during rehab at the facility and adjusting. She still had many memory problems and did not know me most of the time. At the end of the first couple of weeks she began to go downhill in every respect. Could not follow rehab directions and stopped eating, talking and losing almost all aspects of memory.

She was admitted to the care facility on Feb 19th and died on Apr 3rd.

Life since then has been a living hell with all types of second guessing. Should I have brought her back home? Would she be better off in the facility where she could get professional care or what?  Did I do every thing in my power to take care of her?  Did I do the absolute correct thing? Yes a living hell on earth! I chose to leave her in the facility.

Would I do that again? I do not really know after all this time even tho I believe in my heart that my decisions were in her best interests and I made the best decision possible. If, as you say, you wife can still perform many of the every day functions, knowing what I know now, I would probably make the decision to bring her home. But! my wife was far beyond that point.

Second guessing is hell on earth and only you can make this difficult decision you are faced with.

In Your case I would vote a "definitely" yes.

Dementia, in my opinion, is one of the worst sickness that can befall one. For both people involved. At some point you will even begin to question God and at times express anger. I think this is normal.

My prayers and thoughts are definitely with you my friend,

Ren
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Bring her home, but get help.
My Mom is home with advanced dementia. She qualified for hospice/palliative care because of the dementia. They are wonderful support, and will help as much as needed.
God bless you & your wife.
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