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Spouse is getting worse and now is having hallucinations-got out of house a week ago and found wandering by Sherrif who put her in the hospital. She's coming home on 8/17/2020.

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Has your spouse been seen by a neurologist and given medication?
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hooray Aug 2020
yes-she is on aricept;metamine and quetipine daily-biggest problem is hallucinations
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Agree with Worriedspouse that you should contact her doctor about the possibilities of any medications that might help her hallucinations.

Is there any leeway for hiring an in-home care agency to give you more time with her at home? Even for 4 hours/day would help you immensely. Otherwise you can arrange to transition her directly from the hospital to MC care in a facility...this is not easy emotionally, so I'm not making this suggestion lightly.

As her care needs exceed your abilities please do not let the promise hinder you from taking care of yourself. If something happens to your health from the stress of caregiving, your wife still will need you even if she resides in MC. Many people have made that promise not having any idea how difficult it would be to carry out. May you receive much productive help and peace in your heart as you make decisions for the both of you.
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hooray Aug 2020
i am going to bring her home from psych ward on monday and try again by hiring aide for night shift who can make sure she does not get out of house again.she is cared for by neurologist but so far hallucinations continue.thanks for your reply
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Has her doctor been notified about the sudden change in mental status?

Has she been tested for UTI?
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hooray Aug 2020
she has been tested for dementia but not UTI?
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Whatever you do NOW, and you have good advice below of what to check out, it does sound as though you recognize you may have made a promise you cannot keep. Forgive yourself. We are not Saints. Saints end up full of arrows, dead, being prayed to for eternity so that they can fix all that we humans understand cannot be fixed. You are a human with limitations. You comforted your wife with words she needed to hear then. Now is a whole different lifetime with two entirely different people living it. Were I the spouse I would, to my soul, understand.
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BurntCaregiver Aug 2020
Nicely said and true.
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It's easy to tell someone not to feel guilty about breaking a promise, but you have to. Having your spouse be mad at you is better then allowing the situation to continue until something terrible happens. There are assisted living facilities that will take care of your wife with dementia that will also let you live there too. Putting her in assisted living is an act of love to keep her safe.
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Sorry, waited too long to answer. Have you been offered rehab? If so, take it. Medicare pays the first 20 days of care 100%. This will give u time to find an AL and have her transferred there. If u don't have the money, then transition her to LTC. Where I live rehab and NH are in the same building.

The one thing you need to do in either case is protect your half of the assets. Your wifes half would be spent down allowing her to get Medicaid. Your half would make it possible to stay in ur home and the ability to pay bills. If you need care later than the spend down and medicaid. Not sure how SS is divided but some may need to go to offset her care once on Medicaid. This will be determined by what u need to live. A lawyer versed in Medicaid should be able to help you.
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This is going to sound flippant and/or cold, but it really isn't meant to be. It's just true. She won't remember your promise for long, especially if you made it once the dimentia began. And you need to keep her safe. That is the most important thing. Please dn't beat yourself up for taking care of your wife with more knowledge than you had when you made your promise. If her mind were capable of understanding how much that promise would hurt both of you, she would never have asked you to make it.
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This sounds similar to my husband’s condition. He started having hallucinations and then started wandering outside the house in the middle of the night. At first it was sporadic, a day here, then back to “normal”. Pretty soon it was more bad days than good. The hallucinations became more frequent and lasted longer, long periods of not sleeping, which of course meant I didn’t get any sleep. All the mechanisms in place, special door locks, motion lights, cameras were not enough. Medications were adjusted constantly. Soon it became unsafe for him and me. He was running outside during the pandemic, I was worried he might contract the virus on top of everything else. His hallucinations were getting out of control and I did not feel safe in our house. I had to call the cops a couple of times. Thank goodness the cops were wonderful when they came and were trained about dementia. I realized he needed professional 24 hour care that I could not provide at home. It was truly an act of love. Sometimes love requires sacrifice. It hurt me so much to accept that I had to place him in LTC. I felt guilty, there are days when I still second guess my decision, but now he is getting the care he needs and he is safe. An overnight nurse/aide may be a solution for you but in my case, it had become a 24 hour problem. My husband was sometimes up 2 to 3 days nonstop, then maybe he would sleep 24 hours. I found myself just waiting for the next round to start and dreading it. Once my husband was placed and I overcame the guilt, I have been able to sleep peacefully at night. When I visit him he looks great and is very loving. He wasn’t angry at me at all for placing him. I wish you well and know you will arrive at the decision that works for you.
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You made that promise based on what you knew and what you were dealing with at that time.  Things have changed.  If she was wandering and hallucinating at that time, I doubt you would have made the promise.  She needs safety and care and that is what you are going to make sure she gets.  You are still taking care of her. 

Make an appointment with an elder lawyer and start looking for a facility nearby.  It's going to be rough at first, but as she progresses, you will see that you made the right decision and it was in her best interest.

These times are very stressful and can take it's toll on you.  Good luck and take care of yourself.
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The woman you "promised" to not place her in AL or MC (Memory Care) is gone.
10 years ago if you both sat down and discussed possibilities for your lives if it came to a point where her health or yours would have been put in jeopardy by caring for the other what would the discussion have been like?
I told myself and others that I would keep my Husband at home until it no longer was safe. Safe for me to care for him or safe for him. What would have happened to him if I was hurt caring for him? Who would have cared for me? How would I have felt if I hurt him?
If she is safer in a facility that is designed to care for her properly with people there 24/7/365 that is the best place for her.
You are still going to care for her but in a different way. You are still her advocate.
She will not "remember" the promise you made.
If she does continue to ask to go home you can honestly tell her that she can come home when the doctor says she can when it is safe for her to do so.
Usually when someone says they want to go home it is not an actual home but a time and place where they felt safe and well. Reassure her that she is safe, you love her and you will keep her safe.
No one knows what track a dementia will follow. Some become violent, some wander, some remain as they were, some become docile. You never know what functions will be lost when. It is all about what part of the brain is effected when and how. The important thing is safety.
Another thing to remember...never doubt a decision you make when you make it given the knowledge, facts and circumstances at the time. Over time your knowledge and or circumstances may change but at the moment you make the best decision you can.
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You have 2 choices, have aides watch her 24/7 or put her in an assisted living/memory care facility. If she is home, you also need to elder-proof the house, maybe with alarms, extra locks on the doors, lock up the sharp knives and scissors, and have her wear a tracker, etc. It's very sad for everyone involved.
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Sometimes elderly illnesses become too much for a person not medically certified to deal with. Plans change and you have to do what is best for your spouse. If she has this bad of dementia...trust me, she doesn't remember what was said pre-dementia.
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Im sorry you are dealing with that. I'm sure it is very hard. Can you get door alarms put on the doors? A watch that monitors the person/tracks them? Can you get in home health care to help you?

Im sure she won't know what you discussed in the past. If you need more help, there is no shame in getting it. Your only 1 person and can't do everything yourself. Thats why nursing homes and hospitals have teams of people. Not just 1 person. Dont be hard on yourself bc you can't do it all. You should not be pushed to the breaking point bc you can't do it. You did the best you could. Dont beat yourself up over it if you need more help. Taking care of a person can be a 24/7 job, working, and taking care of bills and a household could be another full time job. No one on the planet can work 2-3 full time jobs. Your just 1 person. You need to take care of yourself too. Good luck.
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Did she go to a facility or did you take her home?

If at home now, there are some good suggestions here on safeguarding your home so she cannot wander outside again. If being home just doesn't work out, consider her dementia and ask yourself would she remember your conversation about facility care where you said you wouldn't put her in facility? If you have to take her to a hospital again, make the move from hospital to facility. There maybe repeated questions about when can I go home that can be replied to with 'when the doctor thinks you are well'. Another question is asking about what the house or a room in the house looks like because sometimes they want to go 'home' to a house they lived in many years ago and not the most recent residence.

Dementia is an awful terrible theft of memories. Bless you as you make hard decisions.
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If she is to the point of wandering off, you really do need to consider the memory care facility. My cousin was in the shower and her husband was snoozing in the recliner so she thought she could jump in the shower and get dressed while he was asleep. As soon as she came out, she saw the empty recliner. Needless to say, they put out an alert and helicopters were searching. He wandered through some woods and ended up at a person’s house and they knew what was going on and he was dehydrated and had not had his diabetes meds. He passed away that night. He was run down. They can slip off easier than you think. Good luck to you. You did not realize that your wife’s dementia could get to this point I am sure so go ahead and rid yourself of any guilt from a promise and do what is best for you and for her. We have another friend who is in a memory care facility by the way and her husband goes to visit with her and takes a grand baby for her to see before this virus came and it has been the best thing for all, especially his wife. You just make the best of it.
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I told my mother the same thing, but she also knew I would always do the best thing for her. When the time came, as it has with you, I had to do what was best. Even living with her, as I had moved in with her, I could not keep her safe. After research I found she needed to be in a secured memory care home. Secured was the important thing to keep her safe 24/7.

There was an adjustment time for her, but I knew in my heart it was needed. Now as caregiver for my husband with Alzheimers I know, I might be facing that again. It is a different time in their world with this disease. My heart is with you and others going through this.
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First addressing the question about UTI testing. IF this was an abrupt change in behavior (or any time in the future), then DO have testing for UTI done - preferably the culture, not just the dip stick test. When I first joined the forum, I was perplexed by all the suggested UTI tests... Until mom got her first one living in MC! Oh boy! She was out of control afternoon-evening (okay in the morning), had to get out, had guests coming, etc, and setting off the door alarms over and over! It started on Friday evening, so we could do nothing until Monday. Then it required anti-anxiety medication in addition to antibiotic. Once treated, she was fine and didn't need the anti-anxiety any more. Subsequent UTIs now present as night time bed wetting (at least twice now!)

As to the promises - well, we can promise the moon, but sometimes circumstances change and we might have to break those promises. You wouldn't be breaking it to be mean or nasty, but rather out of necessity. If she has reached this stage, she is a danger to herself and possibly to you as well.

Others mentioned adding safety features and removing some items, but it goes beyond door locks and knives. Think child-proofing. Chemicals for cleaning, stove, microwave, other appliances, throw rugs, tools, stairs, even outlets can become an issue! You really have to lock up/prevent access to so many things in the house! You can't really watch her 24/7 yourself.

We tried bringing in aides, to get mom used to them when still in the early stages, but less than 2 months later she refused to let them in (she was living in her own condo.) Although AL was in her own plans prior to dementia, that disappeared with the onset. She was adamantly refusing to consider moving anywhere, never mind a facility. In her mind she was fine. She wasn't.

So, there will be pangs of guilt, for having to place your wife and breaking your promise. It is natural, but please, don't beat yourself up! We want what is best for our loved ones, and sometimes it means going against our plans and/or promises! Also a good chance she doesn't remember that promise.

Once everything stabilizes (she might be a bit touchy in the beginning after the move - depends on how far her dementia has progressed and how it affects her) that will subside some. You still get to provide some care, albeit on a different level, advocating for her, visiting with her (when they allow it again.) My guilt wouldn't have been for moving my mother, but for anything that might have happened to her had I not insisted we step in and move her!

As others noted, each person responds to this move or where they are living differently. She may beg to go "home", but we don't know what home that might be - early stages, probably the most recent. Later stages, it could be a previous home, it could be a childhood home. The best we can do is leave the "door" open for them - when you get better, when the doctors say you can go home now, etc.

My mother harped on my YB every time he visited, but this only lasted through about 9 months. Then she asked me to drop her off at her mother's place (gone 40+ years!) and when I deferred that to "tomorrow", she asked if I had a key to the home they lived in before that (over 25 years ago!)

Since I haven't been allowed to visit and she can't hear on the phone, I have no idea what decade she is living in now. It was clearly about 40-42 years ago, based on several comments/questions. She hasn't asked for a ride "home" in a long long time. She just turned 97 and has been there over 4.5 years now.

I never promised to keep her out (again, it was HER plan to use AL!), but I also couldn't provide the care needed either in her place or mine, so this was the best I could do - find a VERY nice place, nearby so I could visit and advocate for her. Guilt would have only played a part if I did nothing.
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The best thing to do is use the phrase "It's per doctor's orders we're doing this, dear." Which isn't far off from the truth, and in reality, IS the truth because wandering outside the home is dangerous and can kill her, as it did a man I was caring for years ago. He wandered outside in the middle of the night, insisting he lived across the street, fell, suffered a subdural hematoma and died the next day in the hospital.

You can't 'promise' someone something that's out of your control. It's like promising someone you'll keep them alive or free from disease entirely. Some things become bigger than WE are, and too much to be responsible for. That's why Memory Care ALFs are popping up on every other street corner.........because most of us are incapable of caring for our loved one at home after dementia/ALZ reaches a certain point. Let's face it.

You can go visit her every day (most ALFs allow outside visits and/or window visits) and bring her goodies and small gifts. When I worked at a Memory Care ALF before the plague hit, there were quite a few men who'd come visit their wives on a daily basis and take them out for ice cream, or just sit and visit, etc. It CAN work and it DOES work, if you accept your limitations and MAKE it work.

Wishing you the best of luck with a difficult decision.
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If the dementia has progressed to that point, does she even remember the promise? Keep it as a "doctors orders" type thing, tell her "when she is better, then..." Make the AL seem more like a rehabilitation center, a place that is helping her recover strength, etc. Ask yourself, how much guilt will you feel if she gets hurt BECAUSE she is at home? It is not an easy decision, but it may help to do the two column good vs bad of each choice. Write down each option, staying home, going into care, staying home with outside help, and then put pros and cons of each.
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If she has dementia, that no longer applies. With dementia she should be in a facility, not with you. People with dementia will make your life hell - don't do it. Perhaps let the doctors tell her and you can tell her it is just "temporary" until she gets better. She won't know the difference. Or tell her she will be staying there as you have to go away for a few days and can't leave her alone.
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Imho, it's imperative that you add that it is the doctor's instruction and not your's .
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The fact that you told her you would not place her before has no bearing on the present situation. She has dementia and she should be placed. End of statement. I doubt she would have the slightest idea what is going on and what you said before. Just find a way to get her to the facility. There is no way or reason she should possibly come home. Don't do it.
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this just bothers me to see all these comments yes stick them In The home you can’t do it. Yes it can be done and please remember when it’s your time and your old and need help hope you remember telling ppl these things and then your family sticks you in that home. Your days coming as well.
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Tothill Aug 2020
Greymare, I am 54 years old with two elderly parents and three adult children.

I would never want my kids to feel they have to provide care for me in my home or theirs. It is not their responsibility, just as it is not my responsibility to provide hands on care to my parents.

Having the capacity to provide 24/7 care at home, is something that many of us do not have or care to have. For those who want to go this route, how many posts do we see complaining the siblings will not help?

It takes money, space, especially if over night care givers are needed, it takes physical ability, physical access, time, and much more to provide 24/7 care at home. It is even harder if the elder is not cooperative, the care provider is not getting sleep or cannot work due to the challenges of care giving.
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Keeping someone with dementia at home or placing them in a facility is a distinctly personal decision. This decision is not to be made lightly and there is no Right or Wrong choice or decision.
The decision should be made based on several things All under 1 topic:
SAFETY....If it is not safe for either the caregiver or the recipient then either placement or full time help may be necessary. And if it becomes unsafe even with help then there is no option.
If a person is violent. Wanders. Housing can not be adapted to make it safe. If the caregiver can not physically, mentally or emotionally cope with the role as caregiver.
There is no “shame” in admitting that you can’t do it.
No one should make you feel guilty.
You are not quitting or giving up, you are admitting that you need help.
And one more point..(personal opinion here..as this whole thing has been) NO parent should expect, demand or make them promise they will care for them or not make them move.
I have made an expensive decision to buy LTC insurance so I will not have to “burden “ family with my care. They have their lives and families. I want them to WANT to see me because they want to not because they have to.
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she may not even realize it. my aunt didn't realize it when her kids moved her. she thought it was her home.. in her mind nothing changed
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Dear hooray,

Hindsight is 20/20. There's many things we wish we would've done and many things we wish we shouldn't have done. Making promises is one of those we wish we shouldn't have done. But how are we to know? As a spouse we want to care for our LO forever, but sometimes that's impractical. We all reach our caregiving limit. You did what you thought was proper at the time. When it got to the point of my wife wandering, sometimes at 2 or 3 in the AM, I reluctantly and sadly decided it was time for a new "home" for her. Times change and the promise you made to her is overridden by the need for your and her safety and health. Realizing that shows your love and concern for her.
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Hallucinations can be controlled with medications. Speak with the psychiatrist at the hospital prior to your wife's discharge. These hallucinations should be pretty well controlled for them to be able to safely discharge her. If she really wants to stay at home and you want her to stay there as well, you might consider hiring 24 hour care for her, or a live-in companion/caregiver. The latter would most likely be less expensive than an ALF. She will also probably be more cooperative at home where she will feel safer and recognize more things in her environment. You may want to meet with either an elder law attorney or a case management service. Depending upon her income, there are some state programs which will provide funds for up to 50% of what it would cost to put her in a long term care facility. If her hallucinations aren't well controlled or if she's wandering and might leave an ALF, they won't take her. She'd be too much of a liability for them. Get some help from the Alzheimer's Association, the Area Agency on Aging, call 2-1-1 for assistance/advice/help (at least in CT anyway). Before making any final determinations be sure she has a complete physical exam and psychiatric exam. Is she taking medications for dementia? Depression? Anxiety? Go online and start doing some research. Go to GOOGLE and type in things like "how to care for someone with dementia at home" "case management services for dementia" "services available in (your state) to help keep patients with dementia at home"... I'm sure you get the idea. I'd start first with 2-1-1 or the 2 agencies listed above. Good luck to you!
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Harry, how is it going?

As a wife I want to tell you that I would never hold my husband to a promise made in ignorance. None of us can possibly know what we will need to do to ensure that our loved ones are safe and cared for. It is a lovely sentiment but sometimes it is not realistic in the least.

During covid everything is wonky and what used to be, well used to be. So, if you have to place her to ensure both of your wellbeing, find ways that help you feel like you are showing her that you have not forgotten her and that you still love her. This will help you get through the difficulty of having to place her.

Be prepared for the hardest thing you have ever done. It stinks to have to make a decision to place a loved one, you will second guess yourself, you will doubt your decision, you will cry yourself to sleep, but you will know deep in your heart that you had no other option and she NEEDS to be right where she is for BOTH of your wellbeing.

Be kind, gentle and forgiving to yourself during the transition. It will work out, because you are her advocate and you will pick the very best facility for her needs.

I am praying that you can get a good caregiver and that you can keep her home, but if not, may you find a fabulous fitting facility.
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