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My mom called both me and my sister to tell us that her and her roommate made it back to the care facility and were fine so we wouldn't worry. She said they had been out all day doing things and they were exhausted. This is not the first time since the lockdown that she has told us these types of things. I just don’t know where this comes from. Is this a normal thing for Alzheimer's patients? I don’t know what her roommate is thinking when she tells us this stuff. I do feel like the change to her routine is really taking a toll on her mind and I don’t know what we can do to help it. We got her a facebook portal so we can video chat with her but we are so afraid that before the lockdown is over, she will be really bad.

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Yep, it's normal for Alzheimer's and dementia sufferers to confabulate.......to make up stories to suit their moods. You are wise to just go along with whatever she tells you, since arguing just creates MORE arguing! If she thinks that she & her roommate were out all day & having a ball, more power to her! The goal is really to keep her happy and content. Anxiety tends to prevail with this miserable disease, so anything we can do to PREVENT their anxiety is what we should strive to do. Whether that means making up 'white lies' or agreeing with nonsensical stories or saying whatever is required to keep them relaxed, then that's what we do. As long as we're not creating harm for them, you know? If you have a question about what is REALLY going on, call the facility where she lives and fact check. When my mother (who lives in Memory Care) starts telling me all about how they're 'starving her' or throwing peanut butter & jelly sandwiches in her face (with no other choices), THAT is when I get on the horn and fact check. Just to satisfy myself that all is well and she's just confabulating. Again.

Good luck!
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Davenport May 2020
God bless, lealonnie!
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Thank you! We do get weekly updates from the facility, which helps.
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disgustedtoo May 2020
She sounds like she had a good time! Why burst that bubble?

I've been pretty much stuck here, unable to finish the rehab of this place nor go anywhere for lack of funds, going on 2 years now, never mind 2 months! Just when the finances were resolving and I found someone who could get the labor needed to finish the work needed, along comes this damn virus!

Maybe I should start making up stories about how my day(s) go...

So, as others have said, it is common and you should just play along with it. This is her reality and it seems to be keeping her happy! Could be worse.

If you or sis are bothered by it, let her finish her "story" and then gently try to change the subject to something else.
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MyAngel80, there are many great resources online where you can learn all about your mom's condition and what to expect and how to handle things. Your mom's "adventure" sounds awesome compared to some of the things the cognitively impaired think is going on (my aunt is always confronting burglars and people with knives and is very distressing to her). It does't matter what her roommate thinks...she may be having her own delusions. Teepa Snow has videos online that many on this forum have recommended to learn about dementia/ALZ. You and your sister are doing the best you can considering the circumstances. Learning more will help ease some of that stress. May you and your family have peace in your hearts!
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Every person is different and the disease effects some quicker than others. As long as it isn't harmful or thoughts of running away, don't agree or disagree just get connected to the present with light conversation. Sometimes the activity department comes up with some pretty unique ideas to break the monotony with play acting different themed partys. While doing their best to make the residents life a little fuller, some confused patients can believe it to be the rea deal.l As long as she's not slipping off or constantly worried about where she is I don't think it's hurting anything. Don't worry about the future, she'll always be your mom no matter what. Read what you can on her specificate problems/issues from medical researchers to help you know what to expect. Talk with people like these on this site and take some time to read for your own emotional support. Knowledge is the only power you have over this disease so use all you can.
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I have a friend whose mother does the same thing. She now has mom write "a letter" to someone and tell them all about her day. She then shares the letters that have somewhat unique content with close friends via FB. It is very interesting to look into the mind of someone who is disconnected with their current reality. Her letters are so well-written that you could really believe she spent the day at the beach with her husband (who has been dead thirty years) when it was actually snowing that day in Ohio. My friend keeps all the letters with a note about what the day was really like. Perhaps your mom would be willing to write letters as well, something you would have as a reminder of her after she is gone.
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jacobsonbob May 2020
What an interesting and excellent idea! Your friend's mother has something to do to keep her busy, your friend can learn what's going on in her mother's mind and, as you suggested, this will make interesting reading later on (in addition to the present!)
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It's absolutely normal. For several months last year, my mother demanded to go home several times a day, and she was at the home she owned and had lived in for more than 50 years. We figured out that she wanted to go to her childhood home, and we discovered that promising her we'd leave later usually calmed her down. My point is that an Alzheimer's-impaired brain is going to tell stories that are off by 60 years, pure fantasy, complete fiction, or nightmares. It is all true to your loved one. Don't argue, don't try to prove them wrong. Logic is the first thing to go. So, yes, go along with it. Unless they're telling you they're experiencing something awful, which even if it isn't happening, is affecting them mentally and might require anti-anxiety meds or anti-depressants.
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Wendylou May 2020
Hi!
I'm going through the same thing with my 80 yr old mother with vascular dementia.
The only problem is I'm running out of excuses why we can't leave today.
In addition to that most of the times she gets really angry when I come up with an excuse.

I tried to distract her most of the time.
It's not easy. Especially when you're dealing with a woman with a very STRONG character.
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I try to think of it as her brain is trying to find connections that were once linear, but now aren’t. She was worried about something but can’t tell if it is her inner thought swirl or what really happened. Some things I have learned to translate. If we are out and about and she asks me several times if someone picked my sister up from school it means that she is overwhelmed and ready to return to the facility where she feels safe. Things just don’t process the same way. The restaurant we’ve had lunch at for years, while familiar is full of motion and sound that she can’t process in way that lets her file it away as background noise. She’s not lying, she is picking something out of the grab bag to provide an answer. In your case the best thing to do is to agree with your mother that it is a good or bad thing based on the answer provided to reassure, because she may not be talking specifically about her roommate but another person and her roommate walked by when she was talking to you or she saw something that reminded her of her room mate. She is trying to tell you that she was worried about something but it is ok now. Or at least that is how choose to interpret.
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Yes... this IS normal. I have worked with dementia patients for 25+ years. They make up things ALL the time and when they tell you things that you know are NOT true, please...... please.....please... do not correct them, do not disagree with them. They honestly believe that what they are telling others is reality. And it IS reality to them. You cannot change their minds.. you won't be able to reason with them. When you do correct them.. disagree with them.. all it causes it anger from them. Best thing is distract them when they get angry. As soon as they start making up stuff in particular that upsets them, distract them with something that will make them "happy". And it can even be the same thing over and over because they most likely are NOT going to remember you having brought it up before. Sad... but true. GOD bless. you.
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cedarbrook May 2020
Yes, you hit it squarely on the head by saying DON'T correct them. I've been caring for my husband for 2 and a half years. I have read EVERYTHING I could find about dementia. A neurologist said to me after a telephone consultation, "I think you know more about dementia than I do because you're living with it, and you've done a great job of responding to it.." That's one of the rules I've learned, DON'T REACT----RESPOND. Be safe.
CEDARBROOK
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Your mother may talk about things she imagines or wishes were true. They are real to her. Answer within her reality. "I'm glad you got back safely." "It must have been nice to go shopping." " thank you for telling me about your day. " and so on.
No need to contradict her. No harm done.
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Making up things, or confabulation, is a normal occurrence with dementia patients. Some have said they do this to be social or to fill in the gaps of memory or to make sense of confusing parts of life. In any case, it is the attempt of an impairment of the executive/judgment part of the brain to make sense of retained thoughts and new experiences.

So, the consensus it not to be oppositional with their line of thoughts. Better to let them know you heard them and agree with whatever true parts you can. if their line of thought is distressing to you, change the subject or get your loved one involved in an activity. Sometimes, you can have a wonderful conversation about their feelings and thoughts (realizing they are impaired) to validate that the speaker has value to you still.
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Your mom has probably been out (of her room) for the entire day (cafeteria, day room, etc.) and translates it to you to the best of her understanding or dementia related reasoning. When my MIL was in an assisted living facility she would ask us if we had "moved her" while in a different room in the same facility. Sometimes we must understand their language now has a different meaning.
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Yep--annoying as all get out, but normal.

If you saw my mom before 3 pm, you'd think she was pretty on point. After that, the slow slide into another world.

Nothing to do for it--she's on so many meds the docs won't give her anything. She's calm, so it's not like she's causing problems, She's just like a totally different person.
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Yes...made up stories often..fasten your seatbelt...you’re in for a bumpy ride. Hugs 🤗
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My husband, who never wanted to travel , has now had the most fabulous experiences all over the world . We’ve been on safari , climbed the Great Wall of China and had so many unique experiences in his mind . I just go along with it and say how lucky we were to do all those things . ( and it didn’t cost a cent ) We’ve also been to many famous people’s funerals and sat amongst both politicians we’ve loved and hated . I must admit I find these confabulations fascinating since , as I’ve mentioned, he sure wasn’t a guy who wanted to go anywhere .
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disgustedtoo May 2020
How cute! If I go down this path too, I want to share my time with someone like him! At least we all have a good time!! (well, maybe not with politicians, good or bad!)
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Yes, certainly any change takes a great toll. There is never any sense to arguing with a disease or a disorder. Be gentle as you can, correcting only what you need to, and gently. It is such a struggle for all our loved ones because often when they go wrong in what they are saying they are somewhere aware of that, somewhere embarrassed by it. It is hard to see and hear. My heart goes out to you.
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Just go along with positivity. "Oh, what were you doing?" and "Ok, that's good everyone is safe. How was the food today? How is the weather? Do you need a new sweater or pair of shorts? I heard one of your favorite songs today... etc" I don't encourage the made up stories nor deny them but I just confirm and agree that 'all is well, good to hear' and change the subject. All normal issues for dementia diagnosed individuals. Hang in there with daily phone calls if possible.
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Imho, that is quite amazing and very atypical of an Alzheimer's patient to be able to use and understand social media SUCCESSFULLY! Case in point - i.e. my sister in law, who is 3 years into an Alzheimer's dx recently totally erred on social media by posting a video that was her mumbling to the floor. What that did was to allow others (because her disease is kept on the DL by the request of her family) to post "emoji likes" and other views of NOTHING IN PARTICULAR.
Your question - do you go along with it? No. Redirect - i.e. "Isn't it a nice, sunny day today?"
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Hi all I care for my mother in-law my farther in-law passed away 3 years ago so myself and her son my husband over years we had notice things that were abit off with her behaviour and so forth since passing of my farther in-law my mother in-law started to act secretly and tried to keep us separate from rest family husband I trying figure out what’s going on so we had cctv we got alert on phone and checked in we could here her saying stuff to family members she that were completely untrue my husband sister we have been trying to explain to her what’s been going on because with us she was different and when she was with family she be different. Put it this way people in family believed her and family turning against us and no one was telling us what has been said one day my husband and I beg his sister to take her for night pls for first time in her life she did after couple of days she came home she started conversation with her son what she wants to do with house daughter wants to buy house and she only wanted to give my husband way less bare Minimal for house even though we had cared for dad who had stroke she was never around at all no help at all from her my mother in starts conversation walking thrue the door my husband in bathroom she starts conversation my sister in-law yells out her offer I said it’s not right time to discuss this my husband said no way talk after about it sister in-law left my mother in-law said u take offer husband said no as not right to discuss and I’m in bathroom she like yeah she offered u this much which completely different to what her daughter said I went outside my husband still avoiding it she starts screaming and yelling mind you not even half an hour of being home husband said pls mum not discussing this now any way she still yelling screaming my husband said me call my sister tell to come get her my sister law came to pick her up as soon as she went to door my mother law runs out crying hysterically and we sore them rush quickly to her car took off. My husband sent msg to his sister couple hrs later check on mum and asked his sister to come over so can have proper discussion she refused said had headache soo forth. Next day my husband went sister house he was speaking with his mum I speaking with his sister then bom shell hit my sister in-law husband after they pick her up she was crying hysterically she wanted to go police he takes her there she loggers statements that he had pushed off the bed and she fell back she said we had access to her bank account that her son stole money when trying organize payments to go to her when my farther in law passed away and so forth my poor husband got charged for family domestic violence she had just started taking tablets for parkinson police would not listen he got charged anyway she still stayed at her daughters house then finally she started to see what was going on her behaviour was changing cause she would act different and speak normally with everyone with us trying make sense what on earth she is saying thank god now some family members believe us now we have 24hr recording and sound cause she would cause trouble between me and her son she even hurts me chokes me I broke my finger and she actually grab hold twisted it she she even scratches her self says i done it if any can give me advise on how to handle her as I’m fearful being alone with her boy she is that strong it unbelievable and nasty
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I know you are looking for answers and from experience with my Mom and now my husband.....you will hear stories that are not at all true. Some you might smile at now or years later. Do not even try correct the stories. Agree with them, no matter how far fetched they are, as long as you know she is safe. It is like a child living in a dream world, where children make up stories. Those with Alzheimers have no control over what their brain does, while awake and dreams become real to them. To them it is all real.

When my husband started saying things that are not true, I sent letters to all family members, those in town and out of town, explaining what was occuring, how to handle it and not be surprised about anything he says. You really need to get into their world.

I always tried to remember to think as Mom did when caring for me as a child. Now it was reverse roll. Each moment is precious.

It is not because of the lock down. It happens and more often later in the day. Usually around 3:30pm, I found, called sundowning.
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Bella7 May 2020
The lockdown has made my mom totally worse but even got more worse when she had to go to ER after a minor fall then had to be put in isolation for 10 days, she won’t get out of there until the 30th. They are treating her like she has the Covid, and refused to test her. I doubt my mom will ever be the same after this
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Yes, but she probably thinks it's true. I don't think she deliberately lies. If she can turn her computer and web cam on, she must not be that far gone.Does she understand why she has to shelter? Or does she just think no one wants to see her?
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I have found that correcting them makes them feel humiliated and more confused. Over the last 5 years I have learned just to say "okay grandma". The stories are normal and they only get worse from here. Try your best to find the humor in it all, or it'll drive you a little crazy.
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I cared for my Mother who had dementia. She was mildly affected before she got sick and had to have emergency surgery to remove a blockage in her intestines. But after surgery, when she came home she was yelling at the home health care nurses and me. She didn’t recognize me at all, and thought I was one of her caregivers. She also told me that her sister (who had been dead for about 50 years) was coming over to get her and go over to her house. Sometimes she would actually try to climb out of her hospital bed and got her legs caught in the bars and screaming in the middle of the night. I was in a panic trying to free her leg so she wouldn’t break it!! I have learned from caring for both my elderly parents years ago, that life is SO hard and unfair especially when you become elderly. I am now 64 and having some serious health issues of my own. I hope you have fewer heartaches in life, and that your Mom feels better somehow. Tell her every day that you love her, and maybe if you have a photo album you can share with her of old photos of you both when you were younger? I just let my Mom believe what she told me, even if it wasn’t true. I found out that when I “corrected” her tall tales, it would upset her... even when she would be holding a wadded up blanket, thinking it was her “baby.” (Me). Peace and hugs to you hun. 🙏🏻💗
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I only wish this group forum existed when my parents were still alive!! But maybe I can show this too my daughter, who is about the same age I was when my Mom got worse and going downhill. I’m 64 now, and totally worried about my own declining health and mobility issues. Life for me has changed tremendously in the last few years. I was always pretty active my entire life, and now I have type 2 diabetes, spinal stenosis, needing a knee and hip replacement, and always in terrible chronic pain. And lately having shortness of breath and cyanosis on both my forearms at times. I am afraid of dying, and don’t want to leave my daughter and son. Even though they are 29 and 35, they will always be my babies.. 💔😔🙏🏻
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My mom does that too, telling me about visits from deceased family, trips to the store, even that her roommate was starring in a movie! I just nod and go along with it. Nothing else you can really do. It’s just like talking to a toddler who has a loose grasp on facts:)

My brother and I take turns window visiting with her and then exchange texts giggling about her tales.
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