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Asking for advice on how to handle some of the questions we get from my mother-in-law who is toward the later stages of dementia. We had camera's and alerts set up on her door, but she was starting to wander out in the middle of the night half dressed. We live next door, so were able to intercept her. She was also having TIA's (mini strokes). We were taking turns staying with her around the clock. So a year ago we made the decision to have her go to Assisted Living. I've read where they say to fib or lie or re-direct them. My husband has a very hard time with this. But to be honest, what do you say to them when they ask to go home or that they want to go live with mom and dad? It's hard. She always has a response, plus she repeats it over and over. At first my husband would try to explain why she couldn't. That she was there because she was having mini strokes and we needed to keep her safe. Now we say 'You can't leave until the doctor has said that you can'. To which she says that she is better now. To be honest, we hear several of the other residents say they want to go home too. I believe it is a form of Sundowners. But I'm just wanting to know how other people have handled this.

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It honestly doesn't matter what you say at this late stage, because as you observed, she is not absorbing responses. She may argue, may cry but that is a normal response to something heartbreaking.

Allow her her feelings and tell her the truth. I don't find lies to be therapeutic in any way. Tell her that she doesn't have a good memory anymore, that she is wandering and needs to be kept safe. Tell her you are sorry she is sad, but this is her home now and she is safe here. Tell her that you will visit her, and love her.

Then do allow her to have her tears or anger. Life is sad. It is impossible to deny it. You didn't create this. You can't fix it. You can only make her safe.

And yes, for those with dementia in late stages things will be repeated over and over again. Think of it as having no memory bank for things just said and done. It is hard to see.

As far as wandering this may soon become a situation far too advanced for ALF and MC will be needed for safety. I am so very sorry for all the losses you are all enduring. I wish you the best.
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PeggySue2020 Apr 2023
This would be a lot for a demented brain to absorb. I personally would stick with “the doctor says you need to stay til you get better.”

And then I’d redirect. “Mom, the doctor says activities will really help so we are on our way to the activity room”
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It does sound like your MIL is past the stage of being able to live at an assisted living facility, especially since she's now wandering. A locked memory care facility would be better at this point in her journey.
When she says she wants to live with her mom and dad, you can tell her that they're out of town right now and won't be back for a while. And when she says she wants to go home(usually they're referring to their childhood home)you just tell her that she is home, that is her now her home. Or like you're already doing, when the doctor says she can.
You don't have to make it complicated. Just use whatever little(or big)fiblet necessary to keep her calm. And then redirect her by asking if she would like some ice-cream or cake or whatever she enjoys.
Best wishes in keeping all involved calm.
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They all "want to go home" which represents a place in time more so than a brick and mortar building. Dementia causes a person's brain to regress in time....to take them back to when they were much younger and happier. When they lived at home with mom and dad who they've forgotten are deceased. When we correct them or remind them mom and dad are dead in a futile effort to be "moral", we traumatize them repeatedly as a result. If I told my mother her parents were dead, I'd have repeated the story 15,000x just to hear her cry each time! Instead, I'd tell her her parents were in Florida for the winter. Or their phone was out of order. Or whatever words were necessary to keep HER calm, bc it's not about US, it's about THEM and treating brain damage accordingly.

When mom wanted to come live with me and leave her memory care ALF, I'd tell her the doctor story. When SHE says you're ok to leave, then we'll discuss it mom. Change the subject immediately and distract her with photos, snacks, a walk, a story, or anything else that catches your fancy. Ativan is also the great calmer for a dementia patient, and helped mom with the Sundowning agitation she experienced in late afternoons and evenings.

Your only goal here is to keep mil calm and relaxed. The 10 Commandments don't apply to Alzheimer's and dementia.
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I think your advice is the best Peggy Sue. Telling the 'real truth' can be upsetting. I find this approach works for my Mum who is in a MC Facility. She is always asking when she is going home. If I was to tell her that the MC Facility is her permanent home she would be devastated. Better to keep her calm and accepting by telling her the Doctor will make that decision - this has worked up until now and she does not remember having asked me that question 5 minutes or 2 hours ago (she has been in a MC Facility since October 2022 and has moved to a new facility closer to me). Yes, this is a fib but as other responses suggest it is about my Mum's peace of mind not mine. Imagine having to traumatise her time and time again by telling her the truth. Why would you do that to someone you love?

Carry on with your gentle 'fiblets' - this will ensure that her reality remains as pleasant as can be.

Good luck.
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I think you can tell them the truth or at least a version of the truth which seems to be exactly where you landed. It’s true that she can’t go home unless or until the doctors approve it. I know sort of but realistically if the doctors were able to solve her wandering and mini strokes and said they felt she was fine to live alone again your husband would at least consider that I imagine. When she says she better I would agree “I know you are doing so much better since you have been here”. When she says she wants to go home meet it head on and ask “This is home for now but which home do you want to go back to”? “What do you miss about it?” Meet her where she is and explore what she’s really missing. We often make assumptions without even realizing it about what our LO is saying or really wanting, when I do this with my mom and get feedback from her she still brings herself back to the present and often that’s enough. But sometimes it enables us to get to the thing she is really missing or wanting and it’s something simple we are able to provide. When she is looking for someone who has passed I don’t simply tell her Ma (her mother) or Gram (her grandmother) is dead, I talk it out with her, which I itself can be interesting because I learn all kinds of things and eventually she either brings herself back to the present by saying Ma died didn’t she or is Ma dead? At which point I can say yes and it doesn’t send her in a mourning loop, she simply accepts it as the fact it is. Don’t throw the simple hard facts at her and don’t be afraid of the conversation, that’s my approach. It can take time though so like remembering to drop what your doing and give a child your undivided time and attention you need to do a similar thing here. The repetition is likely to happen no matter what you answer so maybe it’s talking the time to move her focus is what helps do just that, IDK but worth a try.
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Getting old really stinks!
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I had dementia clients who would always say that want to go home and live with mom and dad.
My response was usually to tell them that they're grown-ups and too old to still live with mom and dad.
"Home" means different things to people with dementia. Many times going "home" means returning to a time in their life when their life was good. I never told a dementia repeating dementia client that their parents have been dead for years or their spouse. No need to upset them. Just tell her she's an adult and too old to live with mom and dad.
If she repeats over and over try to redirect her attention onto something else. If that doesn't work and she keeps on with the constant repeating, stop answering that question. Totally ignore the topic she's repeating on not her. It's a dementia loop and really the only way to break her out of it is to ignore it.
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This isn't a suggetion that you increase your optimism for recovery from dementia, but perhaps a ruse to comfort your conscience. We know it's highly unlikely that a loved one's condition might improve to the extent they could "go home", but one in a billion miracles occasionally happen. With that said we can take some solace in that there is truth in telling our cared for; "If the doctor says it's ok, then we can look at going home", despite the fact that it most certainly won't happen.
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BurntCaregiver Apr 2023
@Olie

What elderly person in our species entire time on this planet, was ever placed in a NH or MC who then recovered from their dementia?
No such miracle has ever occured.
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It's been many years but with my grandmother we tried giving her goals to work toward. She was not very mobile and had not been for years due to arthritis. We told her that she would have to be able to walk to the mailbox. My cousins and I would walk with her down a door or two and back. She eventually said to us, "I'm not able to make it to the mailbox but someday I will do it."

She was complaining about having green beans with every meal as part of wanting to go home. In her head they were serving them for breakfast too. She was a farmer's wife for decades. We told her that she could make a plan about what she thought they should plant instead of green beans.

It worked for quite a while. We would visit once a week and she would tell us that she had been thinking about what to plant that year. We then discussed that and it actually led her to telling us about my grandfather and some of the years when the crops were good or not good. It gave us more conversation points with her and for a while she thought she was working toward the goal of "going home."
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DILKimba Apr 2023
LOVE THIS!
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If a patient is wandering, then it's time for Memory Care. Some have installed Alexa for repetitive questions/comments. Please get her evaluated for Memory Care. Try to find memory care with an activities director.
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You simply tell her that she is home.
You remind her that she is safe.
You tell her that people are there to make sure she is safe and is cared for.
Often when someone says they "want to go home" "HOME" is not a place it is a time when they were well, they were safe, they were not afraid, they were secure.
So reinforcing that they are safe, they are cared for is sometimes what they need. This is not "lying" this truthful.
If someone asks for mom or dad or any other loved one that has died to tell them of the death it is like they are learning about it for the first time and it can be upsetting, devastating, heartbreaking. This is where a "therapeutic fib" come in.
"Mom isn't here now, she went to the store." "Dad had to take the car to get it serviced" "Mom is at work"
Some may call this a lie, and maybe so, but to continuously tell someone that their mom died, their wife or husband died and to have a person with dementia live that over and over is beyond cruel.
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Isthisrealyreal Apr 2023
This!
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It is very difficult and challenging to know how to communicate / respond to a person (/family member) with dementia. As well, it is a heartbreaking situation.

* First, it is important to know that 'you' need to respond to the changing brain, not the person you knew - for your entire life, up until dementia took hold.

* Setting clear boundaries is critical. Responses can be compassionate and short.

* When dealing with dementia, the GOAL is to keep the person as calm as possible and letting them know they are SAFE.

- This means:

1) NO ARGUING with them. You reflect back their words ("Yes, I hear you saying XXX and then you change the subject immediately / distract / refocus the person as best you can. And, yes, they will continue to repeat words / phrases, etc.

2) No talking 'common sense / logic' as they will not understand it or be receptive to it;

3) A person uses or believes in the notion of FIBBING when they believe the dementia inflicted person 'doesn't have dementia,' and believes that their brain is the same as it was for decades, until dementia took hold.
- This is both an intellectually understanding and an emotional / psychological learning/'gut' realization of what is happening. I would suggest that a person who has issues with what they consider 'fibbing,' is in denial of what is actually happening - it is difficult to accept that the person we have loved for our life time is not there / here any longer.
- Learning how to relate to a person with dementia requires education / training: Go to Teepa Snow's website (or call them). You will learn / find many (new) ways to relate / communicate with a person with dementia.

What I do . . . (it is my client, which emotionally is much different from family although the tools / responses are the same as this is compassionate communication)

1) Non-verbal responses are important cues: Smile (See #3 below).

2) Say
"Okay" ... "Oh yes, I hear you . . . "loud and clear!"
"Oh, I never thought of that ... that's a good idea."
"Oh yes, I understand
"I'll get back to you on that."
"I'm working on that."
" I'll check into it."
Respond in ways which leave the door open for her to believe you (1) hear her and (2) will or are working on it, i.e., making plans to get her home, for instance. Remembering . . . the key is to keep her calm, understanding she is SCARED, CONFUSED, NEEDS REASSURANCE(S).

3) Use non-verbal communication:
Besides smiling, hold her hand, make eye contact, perhaps rub her shoulders.
3a) Let her know YOU are there 100% focused on her.
4) Acknowledge her words while changing the subject
5) While my client talks gibberish, she seems to understand (some of) what I say. She will at times respond with a "yes" "no" or "okay"
I test her expressing a compliment and she responds in ways that she gets it.

Role play with your husband.
If he cannot shift the conversation and respond in ways to keep your Mom as calm as possible, he could say something like "I'll check with xxx (your name and get back to you."
- Develop a 'cue' sheet of responses. Depending on the situation, the sheet could be right there to use as a reference in real time.

Lastly, give yourself and your husband a lot of love, self-love, self-understanding and self-compassion. This is certainly difficult and heartbreaking. Dementia - learning how to communication with a person inflicted with dementia IS learning a new language.

- In addition to researching Teepa Snow, get a book or two. Seeing suggestions on how to communicate 'in black and white' is another way to learn / take in information.

Gena / Touch Matters
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The fact that they keep lying to her and to you should be a RED FLAG! These places are often filled with both neglect and abuse!

Please consider doing home care instead! It is the best option especially when you can keep an eye on things. Please do NOT trust these places. I have seen what the harm they have done.
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JaLuv511 Apr 2023
OP didn't say the facility staff are lying. OP said "she's read" where the writers say to fib and/or re-direct.

It sounds like you've had bad experiences with care facilities, for which I'm sorry. Not everyone is able to care for a LO at home due to work schedules, finances, and accessibility issues. An ALF also provides socializing and fun activities which aren't possible when the LO is alone at home all day while family members work. Hopefully, the key to better care for a LO is to visit them regularly as well as network with the front-line and administration staff.
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I don't like to lie to my LO so I understand your husband's situation. When Mom says she wants to go home, I explain the ALF is her home now. I remind her how much the workers like her and help her, how far she's come healthwise since moving in, how she's made new friends, how she likes her view of the sunsets, and how tasty the wine and shrimp are at happy hours on Friday. After remembering all the good things in her life now, "home" doesn't seem so good anymore.
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fluffy1966 Apr 2023
Accentuating the positive, as you do, almost always seems to "divert". I am just now reminding myself to Thank God (and to thank my mother in Heaven), that my mother had almost 3 very good years in ALF. When my siblings and I moved her there after huge health episodes, we agreed with her that if she "didn't like it", we would take her to her home and employ 24/7 care. One day after about 6 weeks of Mom living in ALF, she asked "Do you remember that you said I could 'go home' if I didn't like it here". My heart almost literally stopped at that point. I nodded and said that I did, indeed, remember. Mom smiled at me and said, "Now THIS is home, so don't worry". Wow, I am holding back tears writing this even 15 years later, but what a gift that was, that Mom recognized that she had friends and helpers around her, activities that she enjoyed (including learning Poker and Mexican Train), and not having to plan her own meals. Thank you, Mom, as I don't think I expressed to you what a gift your attitude was for me.
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My husband just moved to a Memory Care facility and he wants to come home. I am very honest in telling him I can no longer care for him myself. He has been angry with me for a long time because I could not do all the things he thought I should. Since I was already the bad guy, admitting that I cannot care for him in a way to make him happy is OK. He is still unhappy but he is receiving needed care and activities. I am content with the decision to move him to Memory Care.
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They all want to go home, usually a childhood home that hasn’t existed in decades. Tell her she can tomorrow, then repeat indefinitely.
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I am in the same boat. Had to move Mom into assisted living last December after she fell at her apartment and kept having memory and confusion issues. She took a while to adjust but appeared to have made friends which made me happy. However these women had ulterior motives. They were constant complainers, fibbed to her and made up extravagant stories Which upset her and at some point she was even convinced these things happened to her. I spoke with the Director at the assisted living facility. She said that these same ladies appeared to be telling stories and lies to multiple residents and had been reminded on multiple times not to do so. I have to remind mom all the time that some people tell stories just to make themselves feel better no matter how it affects others.
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I’ve worked as both a family member caring full-time (15 years) for two parents with dementia and as a professional in the senior care industry. As several have previously stated here, going home is not to a physical location, rather it is to a place in their mind that can never be achieved.

Therapeutic lies have been used for years as they prevent agitation, anxiety, delusions and other situations that can be challenging to your LO and their care team. It is not about lying to the person, but about keeping them calm, peaceful and as happy as possible. Our LOs with dementia do not hear every word we are saying; in fact, we are often lucky if they hear every third word. Explaining a situation to them can be very difficult for them to comprehend. Think about when you’re agitated. What you want to hear most is something that’s going to calm you down– bring you peace. Later on when you’re calmer and able to comprehend a situation better, you are receptive to the full details. The fact that your LO is saying I want to go home is a sign of agitation.

A person with dementia is never ready for an explanation as they are physically incapable of hearing and comprehending explanations. You as the family member are the trusted person who can resolve their personal challenges. Saying these therapeutic lies to your LO will give them peace, which leads to a happier quality of life and, frankly, better care from caregivers.

The most effective caregivers I have encountered, be they professionals or family members, are those that use humor as a distraction. They acknowledge what the person is saying – – I want to go home – – and then they add something silly to the statement. For example, when my Dad said he wanted go home, I would ask him about the time he and his brothers ….a funny story from his childhood home. Then we would recount the story together with me making suggestions to complete the story.

When my Mom repeatedly asked the same question every five minutes it drove me crazy and I would get impatient. OMG it drove me crazy until I learned to use humor and we were both much happier. “You need to brush your hair.” I had literally just brushed it two minutes before going into her room. “ Mom, I just brushed it.” Mom: “Well, you need to do it again” Me: “I’m trying to be fashionable. The latest trend is to have messy hair and to dye it a neon color.”
Mom: “ Well, I wouldn’t do it.” Me: “Oh come on, mom, can’t you see me with bright pink hair with lime green, lightning bolts going down both sides. I could wear my hair with a black and white paisley blouse and bright red lipstick and heavy blue eyeshadow.” At this point my mother would be smiling and laughing because she knows I would never do that AND because I said all of it with a big smile on my face and a lilt to my voice. It never ceases to amaze me what a smile, and a lilt in the voice will do to help someone deal with unwelcome words..

Your mom can’t go home and you can’t take her there. Distracting her and humoring her will make both of you happier. You will be surprised at how many silly situations you come up with and how many smiles you will see on your mom’s face.
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fluffy1966 Apr 2023
Humor and lighthearted kindness (which you expressed so well, MaddieMae) saves the day on 90% of being battered with repetitive or unwanted questions..Well-put, MM
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Josie1A: For the elder with dementia, the statement 'I want to go home' does not refer to any brick and mortar structure in their MIND, since that is broken. Continue to tell her that it is not possible to leave until her physician signs off on it. To truthfully answer her question about her deceased parents would be cruel, instead say, i.e. 'They've taken that cruise to Alaska,' etc. It may be time for memory care for your mother-in-law.
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I would tell my mom, “Mom, I have to go to work. I will be back tomorrow morning to help you get up and go to breakfast. Let’s get up, cleanup and go down the hall to eat. She would accept that.
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