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Question for anyone. My mom has been in NH for 3.5 years. Has advanced vascular dementia. She daily cries and begs us to take her home. Obviously doesn't realize how long she has been there. We tell her 'a few weeks' if she asks. For quite a while what I've been telling her is that we will be able to take her home 'soon.' It's getting harder as she gets more and more persistent. Am I telling her the wrong thing? I don't want to give her too much hope but I also can't fathom telling her the truth, that she has to stay there indefinitely. It would devastate her and then she wouldn't remember anyhow and I wouldn't want to have to go through that type of discussion each visit. I feel terrible lying to her. I don't want to hurt her by giving her false hope but I also know if she doesn't have any hope, she will give up. She already told me from time to time she wants to kill herself. Anyone with experience with this type of situation. What is the proper thing to do? She now has atrial flutter with her heart and shouldn't be getting upset. I know crying is a big part of vascular dementia, but what can we do? Mom is 84.

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YES DEMENTIA SUCKS I WILL BE GLAD WHEN THEY HAVE A CURE THERE WILL BE A LOT HAPPIER PEOPLE ..TO LATE FOR ME MY MOM IS GONE ..SHE ALWAYS ASKED ME WHAT THE WEATHER IS LIKE & I TOLD HER THE TRUTH ..BUT A WEEK BEFORE SHE LEFT 4-1 -18
WE HAD SNOW CLOSE TO 2 INCHES WELL I TOLD HER IT IS SNOW THIS WILL BE THE LAST TIME YOU WILL FEEL IT I HAD A SMALL BOWEL OF IT ..WELL I TOOK HER RIGHT HAND THEN THE LEFT & WHEN I GOT DONE SHE HAD A TEAR IN HER EYE SHE KNEW SO STILL SHARE THERE LIFE OF THERE LOVES AT THE LAST TIME POSSIBLE THEY WILL MISS ALL OF EVERYTHING BUT IN FOR NEW CHANGES SO MAKE THE BEST OF THERE LIFE I HOPE YOU CAN KEEP THEM OUT OF A NURSING HOME & HELP THEM ON THERE LAST PART OF JOURNEY OF LIFE ..I BET WHEN WE MEET THEM AGAIN THEY WILL LOVE YOU MORE ..
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Thank you, everyone, for all the comments. I appreciate all the thoughts. Advanced vascular dementia is what my mom has, and yes, within five minutes of telling her something she doesn't remember it. It's so hard to know what to do, but I will continue to go with my instincts as many of you suggested. We see her doctor the end of this week, so I'll give everyone an update. I love this website and I love all of you. I'm so sorry that all of you have had to go through this stuff though, I wish that no one had to have any form of dementia, ever!
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This all boils down to hope.
From Miriam-Webster;
Hope;
To cherish a desire with anticipation.
To want something to happen or be true.
Trust or to desire with expectation of obtainment or fulfillment.
To expect with confidence.

We all need to have hope, whether it's to move back home, be healed from cancer or reconcile with an estranged loved one.

Especially with dementia, be kind to their delicate psyche. Never disillusion them or take away their hope. All that's left would be despair. How mean.
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When I was in nursing school 49 years ago, we were taught to always tell the truth and keep the confused or dementia patients oriented to person, place, and time. When my Mom started on her long slow decline with dementia, I would do just that. It hurt to feel like I was arguing with her every time we got together. A dear friend of mine that went to school at the same time as I did, told me this thinking has changed now. To never argue, just let them be in their own reality and when necessary redirect them. Correcting them and reminding them that a spouse, or family member or friend is gone does nothing but to upset them and make them agitated. Since doing this our visits are a lot more pleasant. I've come to realize what little time we have left should be as pleasant and loving as possible. It is actually entertaining to listen to her "memories" as she now thinks she remembers things.
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Dragonflower, while I really do understand where you are coming from and in most circumstances I agree that being honest is best I feel like your missing a big piece of the puzzle here. When you say "If she cries-well so what?" it males me think you are missing or forgetting that DanaLee's mom has advanced vascular dementia which more than likely means she wont remember from one day, maybe one minute to the next what her daughters answer is or that it was a lie. That in turn means her mom (as well as the daughter) will have to feel that pain and sorrow each time she asks and her daughter responds bluntly and honestly as you suggest. I just don't see the point in doing that if it doesn't have the possibility for any positive outcome. I mean the way it could for a child or adult with a normal brain that can learn and reason through the information the way you describe. The mom may or may not stop asking eventually as your dad did but probably not from acceptance but from an instinct that tells her that question is going to cause her great pain which doesn't happen unless a body has been through that cause and result enough to cause muscle memory. I'm guessing you either aren't as familiar with how conversations can go with advanced dementia patients or missed that the OP mom has that diagnosis otherwise your comments/approach do sound "mean" to me and I believe you when you say that's not your intent. I don't mean your feeling that being honest at all costs is wrong or "mean" it's the way you explain and present that above that feels abrupt under the circumstances.
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I think it's CRUEL to lie to our elderly parents and give them false hope. Why not tell her truthfully that her health situation is such that she won't be able to go home? If she cries - well so what? Our little children cry when we tell them things they don't want to hear - but as parents, we "get over it."

I went through a similar thing with my father. He kept wanting to go to the "coffee shop." This was a local donut shop where he and my mother would go during the weekday mornings for a cup of coffee and a donut and would visit with their senior acquaintances. It was the last place he and my mother had gone together before she dropped dead of a sudden heart attack. I know that it symbolized "belonging" and "share experiences" to him. I simply explained to him that he had several strokes, that mother was dead, and he was not healthy enough to live alone now. I stuck to this story every time the issue came up. Eventually, he accepted it - even though he did not "like" it.

I am not trying to be "mean" to you - but I sense that you are avoiding telling her the truth for your OWN emotional benefit - not for hers. It reminds me of my mother's wake, when my brother, who flew in from out of town, told my father, "You look great." I pulled my brother aside later and said, "Why did you say that to him? We both know that he looks terrible!" My brother said, "I thought it would make him feel better." I said to my brother, "No - it made YOU feel better - and that's why you said it." Brother admitted that was true.

I disagree with a previous poster who said that "hope keeps us all going." Not everyone's emotional makeup responds to hope. False hope, in particular, make a person feel that they have been "lied to." It would be difficult to trust anyone again who gave me false hope by telling me a series of lies.
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I must not have refreshed or something because I missed a whole page of responses here before writing mine. I just read through them and one more thought occurred to me. While so many things about having a loved one with this disease are more difficult than words can express for us to watch and go through, for me this is not one of them. I think knowing that you are saving her anxiety, stress, sadness...and giving her some form of piece and maybe even joy when you allow her to believe she is going "home" can and should bring you joy in knowing you are putting positivity in her life. Watching more piece in her face than the hopelessness another response would bring. She deserves to be surrounded by good feelings whenever possible at the end of her life and telling her she is home or wont be going home doesn't do her any good, there is no benefit for her there, the truth doesn't matter in this instance. She is unlikely to remember or grasp the actual "truth" and much more likely to experience negative emotions that may or may not linger but not understanding. I'm not sure I'm explaining this well, it's hard to grasp but when considering a "lie" and "truth" we are basing that on the way we receive the information and reality is they no longer receive information the same way. It's kind of like they speak a different language or come from an entirely different culture. Again this varies with each person and where they are in their disease but when you tell many dementia or brain afflicted patients they are safer here and they can be cared for here or they have peers here, these are things that are hard to hear but valid reasons to us so we can accept them. Very possibly all the emotions and reasoning we did when a doctor told us it was time and this is what our loved one needs but their brains very often aren't processing the same way. They aren't taking in that information and reasoning it out so the information isn't just hard to hear it's impossible which is why "hopefully in a couple of weeks" is the far better and more humane...maybe just more understandable answer. Perhaps the sobbing, arguing and general traumatic response to "the truth" people so often describe isn't non acceptance and stubbornness but more inability to comprehend and process what they are hearing. When sticking with the same line of information they have already formed, basically agreeing with them or giving them back the same understanding they just gave to you is giving them info their brain can process. I know my mom who has early dementia but significant aphasia as well, get's very anxious when she doesn't understand something. It makes her feel out of control and that makes her very anxious which in return often makes her shut down, become stubborn and uncooperative. Perhaps it's similar to what's happening with your mom and other's people talk about who have what looks like such negative reactions to information that is opposite what they expect to hear. It isn't the facts they are reacting to it's the inability to make sense of them, it's as though we are speaking to them in a different language suddenly and effectively shutting them out, taking away all of their control or even ability to express opinion about their own lives. It makes me feel good when I am successful in finding a way to present information or help her feel good about something, even if it means omitting something or fibbing a little because she is happy rather than having to go through useless traumatic emotions. But I don't lie to her or keep things from her she needs to or should know. It is still her life and I don't always agree with her decisions but I respect and accept them unless of course it's a safety or negative health issue. Then we find a way to work around things and so far so good... I'm very fortunate though as I have 2 brothers who share the load and we work well together. Sorry this go so long and confusing, my thoughts kept developing as I wrote. :)
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PrairieLake said it well. I heard the same sort of thing on a YouTube channel called Careblazers. She had a video on "How to respond to someone with dementia who constantly asks to go home". She said ask them questions about their home. As others have said, sometimes it isn't their last home. Ask them what did they like most about it. who was there. etc.
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I've been telling my mother this for the past 17 months, as she asks it every single time I visit, often many times for each visit. She wants to know how long she has to stay there. I give her the same answer every single time:

"Mom, it is no longer safe for you to be alone in my house. We cannot afford to pay someone to be there all day every day, it is much more expensive than this beautiful facility with folks around all day to talk to and to look out in case something happens. (then she says she was fine alone). Mom, if something were to happen to you in my house while you were alone and I was at work, I would go to jail, and you would have to be in a facility that the state chooses. So, you need to be here where I know you are safe until I retire (then she asks when will that be). In seven years. I cannot afford to quit my job"

One day she asked it for the third time in seven minutes and I said "what is my usual answer to this?" and she said "When you retire". So I said "if you know the answer, why do you ask?" and she said "because I keep hoping you will change the answer.".

My mom is still pretty high functioning, but her short term memory ability is gone, along with her ability to tell time or know what season it is, etc. So she is in a facility that is both assisted living and memory care (not a locked down facility) where she can stay as long as she is not a wandering risk, or on a feeding tube or permanent IV or a respirator.

It's my way of telling the truth, and giving her hope, and giving her the same answer every single time. Sometimes when I start my litany she says "oh, yes, I remember now."
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I'm so sorry is it possible to have in home care for your mother not knowing her condition . Or is she a handful and it is difficult for the family to meet all her needs. I would discuss it as a family and see what your options can be and see if as a team you as a family you can meet all her needs.
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I tell my mom when she asks that it mainly until her hand movement is much better - she looks at her hand & I give her something to squeeze as an exercise [some kid & dog toys from the dollar store] - she does it for 7 or 8 seconds then slows to a stop - she thinks her hand will improve but not at rate she does those exercises - I also massage her hands with lotion as an 'exercise' -

When she asks when she will be leaving then my answer is when your hand is better [arthritis] - I praise her when she does the exercise - it is also a good conversation starter and diversion when needed

Why take away a hope - use whatever you can for your 'prop' because then she will see that you are making a positive move for her by buying these items - you will be her 'helper' in the transition - this may mean that she will focus on something else too like her hand exercises not just the going home aspect - as with all dementia issues this will pass eventually
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Why are they in a carehome.
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My dad tells me when im leaving he is coming home with me. I have been fighting tooth and nail to get him home.It is the care home and others rub off on him, the min we outside he allmost back to normal. I have to gp through human rights now to get h home, before its to late.
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In my opinion, please give her hope. I absolutely don't see anything wrong with that. Please have peace with your decision.
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My Mom does that, too (and she is home!). She also "cries" most times without tears. With sundowners, with/or without dementia, you don't know where "home" is.  I usually tell Mom "maybe tomorrow." I have read where you shouldn't tell them that they are home, but it's hard not to. It doesn't click with Mom either way. Sometimes I will take her out and then back home and say, "We are home." My neighbor used to take her dad out the front door, turn him around and say, "Is this home?" and he said, Yes. Then she took him back inside. I don't think it is giving your Mom false hope. She probably doesn't understand. You are trying to keep her calm.
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I think you need to keep listening to your instincts. Your answer may change as her condition changes but since it can often be hard to know how much her condition has changed with dementia and because it will often change for the better and worse from day to day maybe finding little ways to check that out for yourself will help your piece of mind. For instance, asking her what she wants to do or what she pictures filling her time with most when she gets home could both help you figure out where "home" is for her at that time as well as give her something positive to focus on and talk about rather than feeling upset about what she can't do or where she is, focus her on dreams instead of regrets. You could ask her if she is remembering or understanding why she is where she is, does she have a sense of what her issues are or what she could be doing there for herself in a positive way. Is she aware of the "fun" or enjoyable things available to her where she is, is she taking advantage of them? For her who lives with her "at home" is she not feeling at home where she is because someone is missing? Do your visits remind her she isn't home or did you visit when she was home as well? Might changing something about her surroundings, photo's a piece of furniture for instance give her more of a sense of being home? Maybe changing the words used in conversation could help with this? I'm just throwing things out here. Where there discussions about moving to a facility at some point before her dementia reached a point that required it? Was she part of the decision to move her there at the time she did, was she moved there strictly because of the dementia or did, does she have other medical issues? For me all of these things might alter the way I approach my answers and discussions because to me there is likely a difference in her ability to make sense of it all if she was part of the decision at some point rather than having it all happen or there is a physical affliction that makes it up to doctors and tests to determine when she's ready to "go home", the topic and her feelings or resolve about it somewhere in her long term memory as opposed to only part of her shorter term memory since dementia has taken hold might make a difference. One offers the possibility of a conversation that helps her feel a bit more back in control the other might make her feel less in control and I know the sense of control and understanding what is going on in her life, day directly affects my moms anxiety level. It might be similar for yours. Whatever you try or helps you feel more confident in your instincts, because no one knows your mom the way you do in any given moment. So the best thing you can do for her is trust and follow your instincts even if they son't feel right on the money 100% of the time, your heart is obviously in the right place and approaching these things for and with your mom listening to your informed (consulting professionals and others with experience as you are) instincts from your heart is the best anyone can do and far better than many patients get. Your mom is a lucky woman and knows it even if she can't always express it well.
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I'm going though the same thing with my Mom. You are definitely not alone! I've tried the I'm looking into alternatives and that her house was sold. That just upsets her. She gets angry and says she didn't give us permission to sell her house. (We actually owned it). I guess telling her soon and that I'm working on it gives her some hope and settles her till the next time. But I understand just how awful that makes you feel. I never would lie to my parents before. We are going on 7 years and she thinks it has been a few weeks or months. I am actually looking into a much nicer place for her that just opened up to Medicaid recipents, but seeing the comments about those that were moved and missing old friends from AL makes me wonder if that would be a good idea.
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DanaLee, I agree with others who've said it's not wrong to appease your mom. My dad has been asking me to take him home almost every day for the past four years and what works best is for me to tell him it's too late tonight or I'm on my bicycle and can't take him right now and then follow that with "Get a good night's sleep and a good breakfast in the morning and then we'll go." He always tells me that sounds like a good plan. And then we go through it again a minute later, and an hour later, and the next day, over and over. He's 96 with late-stage Alzheimer's and believes his mom and dad are at his childhood home (except when he thinks I'm his dad, but he still wants to go home).
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Hope is in very short supply for those of us caring for loved ones with Alzheimer's, Parkinsons and advancing dementia of any kind. My wife has Alzheimer's and I have been comforted by a song that speaks to another kind of hope. My wife even sings along. You can find it on any of the online music sites like Spotify, iTunes, GooglePlay or Amazon Music. It is by Phil King and titled " Halfway to Heaven." Here's a link to it on Amazon Music: www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Ddigital-music&field-keywords=halfway+to+heaven+an+alzheimer%27s
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While reading Kate's post it came to me that HOME could be Heaven too. Those with Church in their lives call it "going home".
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As you can see we are validating your response to your mother. It is called a therapeutic fib. My dad has V. Dementia too and since moving to LTC (NH) he is so unhappy and cries a lot as he missed his friends from AL. He feels he is not as out of it as the others and wants us to move him back. We can’t because they won’t let him based on him being in a wheelchair and needing transfers. It breaks my heart. He is now becoming mean to me and saying awful things. In my opinion having dementia is far worse than cancer. And I know because my mom died of a brain tumor.
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There is nothing wrong with false hope. Why tell her the truth and what will you gain especially if she loses the little hope that she has now. This is so sad for you but it would be worse for your Mom.
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Dana, "Hope" is never false......telling your Mom that she is coming or 'going' home soon, is not lying......we all are going HOME one day.........I believe giving comfort and love and hope is the same, let your Mom kept her faith and hope that some day, one day she will be Home, and with you too some day.....this is all true. It may sound like semantics, but all the same, it is True.....Take care, sweetheart........
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First, It is very difficult and heartbreaking to go through this. I have been a speech Language Pathologist for 30 years working with patients in varying stages of dementia.
There is something called Validation Therapy that works fairly well with this situation.
You can research it, but if can also find a support group for yourself, others may have excellent things that have worked.
The idea is, first to validate their feelings. Saying things like, “I know you loved your home.” “What is the first thing you would do if you were there? “
“How would you feel if you were home right now”

Then if they respond with any type of positive feeling, go with that. So, if they say “I would feel safe” “Or “I would feel busy”
Then respond to that.
You can say things like “I noticed that when someone (holds your hand, brushes your hair, hugs you, wraps you up in a blanket) you look like you feel safe.
Or you can ask them who her makes you feel safe? What do they do that you like.?
Then you can do those things with them.
If they only say negative things, you can say things like “I noticed when you were home you liked to rock in a rocking chair, or you liked to listen to ____music, or you liked to fix things.” Then you find and do something similar with them.
If you say “This is your home now” that is very distressing as it isn’t their home.
Instead find the emotion(fear, anger, confusion, boredom, restlessness, etc). Then find what activity they used to do they enjoyed, and replicate that.
If you go online you can find things like busy aprons that can keep a person’s hands busy. It is an apron with built in zipper, a Velcro buckle, a large button, etc that a person can fiddle with if they are anxious.
You are the best person to problem solve this, because you know your loved one better than anyone. Look at Melissa and Doug toys-they have wooden fruit to slice with a wooden knife, and a variety of activities like that.
I really hope this helps a little. It is a kind validating way to interact. Memory books with pictures of favorite tools, garden produce etc can also be comforting, but you have to go through it with them. You cannot just hand it to them.

One more thing, the further into the dementia a person gets, the more creative you have to get. If they are restless and can walk,just walk with them holding their hand if they will let you. If they are non responsive, you can use mirroring, music to help them feel safe. No matter what they are doing, they are communicating something.
No matter what please do not discount what they are communicating with things like “You can’t go home@
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Tell her she will go home when she is well. It is not a lie. She will get well. It is said that death by natural causes is the ultimate healing. And heaven is our true home.
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You are not wrong to tell fibs to her....You are doing so lovingly. If she is able, you may be able to take her for ride in the car a couple of times a month..Other times you may say the doctor is on vacation for another week and when he/she gets back you will ask when she may go home. Show her a scrapbook of photos of old times at home. Bring her favorite cookbook or recipe and ask her some questions about how to make it. Is there a wedding album? If so, bring it and ask questions about the photos in it. Make up different stories of when she can go home in a few weeks, but not just yet.

Read easy stories to her...Read the religious things she remembers, as for example, Psalm 23 (The Lord is my Shepherd, I shall not want.)

When she jumps back on the "go home" wagon, listen politely and then say something like, "Guess who I saw at Walmart yesterday...."

To me, the ball is always in the court of the caregiver...Bearing in mind that the burden of the patient is very distressing to the patient, be thankful for the good years and also that God has given you a servant's heart to care for yur love one..

Grace + Peace,
Bob
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She is not remembering that you told her that she could "go home" "soon" or "in a few weeks" she will not remember if you tell her that she is home, this is your home now, a place where people can take care of you.
Many times a person will ask to "go home" it is not home but maybe to a time and place where they felt safe, well, happy.
I agree that the next time you take her to the doctor this needs to be discussed particularly if this is an increased agitation for her.
Just tell her that you want her safe, cared for and that she is safe where she is and cared for by people that know how to care for her. Then give her a hug and a kiss.
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I wasn't totally honest with my MIL. I would ask her if she wanted fruity ice cream and give her yogurt because she would only enjoy eating it if she thought it were ice cream. I adhere to the eight limbs of yoga, which states that the principle of non-harming overrides all other principles, including the principle of truth.

The question then is which is less harming: letting your mother know that she won't be coming home or telling her that she'll be coming home soon, when it's clearly not soon.
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need to tell the home about it!!!!!! tell them .b/c they may only have one reason they do not evaluate her is the in my opinion run & give them medicine to keep there cost down & so they dont have problems.. here a true example my mom was getting rehab for strength ..so the home had prescribe her a pill that will take care of urinary incontinence well her urologist before she even went there said not pills like that should not have them but they the home prescribe anyway but she had a catheter so she did not need them so they had them in case but they do not care about the patient they only care what makes it easy for them ..so if they do not help you then get her out of there & before doing that go talk to other homes & ask them if they will help ..& my mom use to say i want to go home & she was talking about passing away . so might have to take her to a psychiatrist to ....you might have to get her out of that home & take her to a psychiatrist then put her in another home ..but if your gut feeling agrees to what i say then it is true ..good luck
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Watch Naomi Feil on emphatic listening, she has several suggestions on how to answer what your mom is really asking you. I was impressed with the peace she speaks of when you really connect with what your loved one is really saying.
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