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MIL packs al her clothes, pictures, toiletries at least 3x’s a week. She says she’s ready to go home now. I put a sign in her room telling her “you live here, don’t pack your clothes”. I explain to her she has lived here over a year, and this is her room. I have taken every bag, tote bag, Plastic bags, boxes out of her room so that she will have nothing to pack her stuff into. Instead she now just takes everything out of her closet and out of her bureau and puts them on the mini couch that is in her room. It would not be too bad if it was only her clothes she packed because, she can just use the mini couch as her bureau. But unfortunately she packed everything that is in her room, including all the toiletries from the bathroom, paperwork, hundreds of pictures, newspaper articles that were saved, you name it. I am just so tired of unpacking and re-organizing her room. Any suggestions?

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Another another great resource is the web... look up key phrases "elderly packing says they want to go home"... I find a lot of great information on tons of websites and also you can call the American hospice Foundation and get information on all types of different behaviors that people towards the end experience👍
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Hi there.. I am a hospice worker for 15 years now.. very experienced with what she is going through... please do not tell her not to pack her things.. let her do it ...that is a sign that the end is a littler nearer.. if they are not allowed to express themselves during the end time it can actually make behaviors worse.. people need to express what they are feeling... she is going through something that you may not understand but she does and if we do not allow our loved ones to go through this very natural and normal process it can delay the process or make them feel like they have unfinished business... we can make their passing harder than what it should be... what seems like unnormal to us, is normal for what they are going through and we can get in the way of their process by not allowing them to go through it... sounds like she may be ready for hospice and hospice will completely walk you through the what she is experiencing and it will help you get a better understanding as well to help her go through her process.. one of my ladies used to pack her stuff every three days... we just would bring her boxes and bags and whatever she wanted and that's how she kept busy all day as well and made her happy... it was just our new normal...
As long as long as she's happy and not in distress let her go through her own process naturally
💌💌💌💌💌💌💌💌💌💌💌
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Linda, how is the packing up everyday going while you are travelling? Has the change of scenery and living out of a suitcase shifted any thing?

I am praying that this trip will shift her actions and stop the packing up everyday when you get home.
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Lindajc2 Sep 2020
Isthusteallyreal, actually not a problem. We have 2 rooms w/adjoining door so alllll clothes went in my closet. Aside from continually asking why we are here, Sally has been quite agreeable. Seeing my sons & her sister in law had helped greatly as she got to talking and reminiscing about old times. What also helps is all the phone calls she’s getting. She gets excited to learn that so & so will be there but gets saddened when she realizes why they are coming tomorrow. She had a private viewing today which she handled very well. She liked making decisions about the flowers and where the guest book should be, etc... gave her some control over the situation. Thank you for asking. I am so grateful for this forum.......Linda
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My mother does this too and I've not found a way to deal with it that doesn't upset her and/or frustrate me. The packing up isn't so bad but she then loses things she needs (they've been put in grocery bags since that's what she uses to "pack"). I've just started allowing her to do it and figure anything missing isn't really missing since it's somewhere in the house, in one of the packed up grocery bags. My mother is very, very difficult, a lot of animosity towards me, stubborn and wants to go against anything I say or suggest so suggesting anything to her only ensures she'll find a way to do the opposite. She thinks her house, which I live in too with her, is an office and she wants to clock out every day at 5 and go home. Home is the house she grew up in 2700 miles away from here, 90 years ago. She waits on her mom to come get her - my grandmother died in 1993. She doesn't want to eat because she's waiting on her mom to eat with her, or because she's saving it for her mom. She doesn't want to leave to go anywhere because her mom will be looking for her. Her obsession right now is with her mother so her packing up also centers around her mom in some way. She's almost impossible to distract when it comes to her mother so I've stopped trying to do that. One of the hardest parts of this whole journey has been letting go, I kept trying to reorient her, to pull her back into reality, but it's not going to happen. Once I was able to let go things did not improve with her but became a bit easier on me. I suggest just allowing her to pack up, unpack, move things around, etc. I don't unpack for her, some of her things have been in grocery bags for 2 years now. As long as she's not able to move her things where they could be lost, let her do what she wants to do with them. Dementia patients need routine, the familiar, so if her familiar is packing up her things then allow her to do that.

And no, you are NOT a fool for trying to handle this in a way that makes sense to you - everyone tries to do this when dealing with someone with dementia, that's simply human. Thinking on the same level as someone with severely impaired thinking is not something that comes naturally or easily to us. It's taken me YEARS of 24/7 caregiving for my mother to just get to a place where I can let go of MY reality when dealing with my mom, but it has helped me because MY reality is no longer HERS.

Personally, I do not understand responding to someone going through this with condescension or rudeness. That makes me hesitant to ask questions or talk about my situation, which we caregivers very much need to do. The last thing needed on top of the stress and exhaustion and isolation of caregiving is judgment.
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Lindajc2 Sep 2020
Alpr323, I’ve posted that question over a week ago and have received so many helpful tips. Best one was to take out all the unnecessary items/toiletries. 2nd best: don’t unpack for her, eventually she does it herself or I’ll have the aide do it (she comes 1x/week)
thank you for your insights though...Linda
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How about you take everything away apart from the bits she actually needs and tell her you will put them ready for when she is able to go, but you need to wait for the Dr to say its the right day - if she is as far into dementia as to behave like you say with the packing then she will accept that answer every day you give it to her, and you can remove stuff she doesn't need or causes trip hazards etc. You can take toiletries into the when you assist her with bathing, and swap clothes after she undresses with the ones for the next day. It won't solve the packing up problem but it will make it a lot easier for you.
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Isthisrealyreal Sep 2020
Not every parent accepts answers from their caregiver child, many times they resist because of the parent child dynamic. Unfortunately!
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I can totally relate! My mom has sundowner's and living in a private care home. CG experienced ALL these situations, and explanations of "this is your home for 3 years now" didn't work. Mom says "no, my home is across the street, I can walk there, I just came up to visit". Mom had an answer for everything. Sometimes distractions work for a few minutes. For example, CG even drove while Mom "gave directions to her home".. but they ended up at the airport. They pick up something to eat on the way back, but Mom still says she has to go home. We're now trying Kava, an herbal supplement to in addition to meds.
It seems to help lessen her anxiety.
My heart goes out to you & hubby!
Blessings to you both for doing all you can.
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Realize that the dementia is 'doing all this.' There is no 'explaining.' So a sign won't help; it may just make her feel worse or more confused.
Change to the sign to "I love you" or "I love the view from the window" (if she has one so it may refocus her to go to the window . . . or something soothing.

* Take away things that are unnecessary in the room.
* Let her do it. If anything is in the way and causing a potential fall risk, remove it.
* Do not pack and unpack and re-organize. Just stop. You are allowing yourself to be led around / dictated by a brain that no longer functions normally.
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Lindajc2 Sep 2020
Touch matters, you’re correct and I’ve done just that. I know she loves music from the 50’s. Will set up an Alexa dot in her room when we get back next week..... Linda
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Lindajc2, you asked what "OP" stands for.  I'm answering in the main section just so it's easier for you to find.  It stands for "Original Poster", which is the person who created the thread, i.e., you.   Hope that helps!

Skimming through more posts, I wonder if you could make a game of it, by packing for different outings and different seasons only, and leaving the rest.    Pretend you're going on day trips.    It might it might be more of a game, and less stressful.  

I don't know if this could work, as she probably is packing for reasons she doesn't understand, but if you can combine it with outings (again, especially as Fall and the color changes advance), it might relieve some frustration.   Is there also a way you could categorize all the things she's packing so she only takes nomimal "luggage" if you go on outings?

I think SueNWPa has raised a very insightful observation:

"She stopped the rearranging once there was less clutter in her room. I think intially there was just too much stuff in her room for her brain to organize so she just kept sifting and sifting through all of it. "

Thinking it through, Mom is responding to and acting on a desire to organize.   Are there other things she could organize, to at least provide some diversification?  Something like magazines?  Books?
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Lindajc2 Sep 2020
Garden artist, well I’ve got her into the word find books and giving her the mail to sort (all junk mail), that’s still coming in her name. I get her up early and into the palor so she’s not in her room too long in the morning. That’s an interesting take you have on her sifting & sifting with too many things in her room. I have since downsized her room. Luckily her room is/was the only room she packed up, gotta find that silver lining each day, right?..... Linda
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What if you just left everything packed up?
Make sure the boxes are clearly marked so mom-in-law can find what she needs as she needs it.
What's your husband's take on all this?
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Lindajc2 Sep 2020
Maggatha, I have started leaving things packed, she does eventually put them back. Most are in Walmart bags, hard to label them. Bob/husband tells me what everyone here is telling me.... leave it be, stop driving yourself crazy and simply shut her door......Linda
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Lockett, please do not call Linda a fool, she is doing the best she can with her MIL and asking for advice. No one deserves to be called a fool on this site. We are here trying to help each other.
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Lindajc2 Sep 2020
Thank you
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Last year, my sister did a similar thing-packing up. She would take everything out of the drawers, closet and make piles, put into a box, bin etc. I go over to her place it looks like a yard sale. I ask-what's the plan here? Goodwill? reorganizing? Sis says other people did this-Who I ask? she says she does not know. Staff are complaining as they think is not safe-Sis will fall over stuff, housekeeping can not run the vac etc, sis can not find her items in the mess. Food was left out all over and in strange places.

I was over to see Sis every week, sometimes multiple visits to trouble shoot-TV issue, doctor appointments and fun stuff-out to lunch etc. Each time I would put things back in order-sis would do the packing up over and over. About this time-sis became more confused, angry, started wanting to "escape" the community-she was getting frustrated with staff and herself-becoming combative-resulting in several trips to the ER-not a long term solution for sis.

Sis ended up in psych hospital for med evaluation. Had to place her some where new due to "combative" behavior. We edited her stuff big time-New place said less is better-not as distracting, confusing for dementia patients. We did cut down about 50%-in all categories as she was not using most of it, a lot of clutter, when downsizing on the fly.....sis did not seem to notice at all, was not asking for XYZ-at the new place-only said the room had been painted-when actually at a new facility and smaller room. I kept her stuff just in case she remembered or really needed something-pictures etc. I have been taking stuff slowly to Goodwill-she moved again where all furniture is provided, no storage really for overflow etc-down to items she will really need and use. It was a process for me-emotionally-each move to make more decisions to purge-i still have way more to go thru Christmas decorations etc. Sis could not do this-it was up to me. I am hanging on to the piano for now-Sis loved to sing and play-this will be a big item to let go for me too.

Now I feel the "shuffle" of stuff was her way of trying to control her life?? as her abilities and mind were now in a different place.
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My 101 year old mother was constantly going through the drawers in her bedroom and messing everything up. I just very gradually started removing things like jewelry, clothes and shoes she never wears anymore, etc. She never noticed most of the removals. If she noticed something missing I just put it back when she was not in the room. She stopped the rearranging once there was less clutter in her room. I think intially there was just too much stuff in her room for her brain to organize so she just kept sifting and sifting through all of it. I quickly learned that signs do not help, She just ignored them. Her brain changed. Too much stuff led to too much confusion for her.
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This is such I tough time for you and your MIL, big hugs.

I remember my MIL doing this too, and when all the bags were removed, she started tying up her clothes in her dressing gown, securing it with the belt. Again and again. Then somehow she acquired some scissors and cut the pillow slips into strips to tie up her clothes... of course, to her perception, she wasn't where she was meant to be, and was doing her best to problem-solve that feeling.

I think Stiffkr's suggestion below to remove unnecessary items in her room, and give her a suitcase to pack, and unpack, and pack as any times as she wants - is a really good idea. I wish I had tried something like that.

This is a passing phase, even though it feels like eternity and purgatory. It probably feels a bit like that to your MIL too.

Wishing you all the best, be kind to yourself, breathe, and just do the best you can. And stay in touch with this wonderful forum for more support and advice, whenever you need it!
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its one of those things.  when my mother was recouping in  a NH for a broken arm, she was rooming with another lady who had dementia.  At least 1 time a day she would take all her stuff out of the dresser and put it on her bed.  when the night nurse would come in to get her ready for bed, they would just put them back in the drawers.  sometimes the lady would even put her food in one of the drawers cause she said it was her refrigerator.  you just have to either do it without saying anything because she isn't going to remember even with a sign......or just get her some small boxes and let her put them in there.  maybe if you let them in there, she might just unpack them and put them back into the drawers.  OR you could take her for a drive or do something else then go back into her room and suggest she unpack and put her stuff in her home now.  wishing you luck.
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Imho, you can not reason with someone whose brain is broken. It is a futile effort. Leave only the bare minimum within her boundaries. Prayers sent.
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Lockett2166 said it right. I just lost my mother and I wish she was still her for me to care for. Please, know this time will pass. Take care.
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Time for a change-- when she is at breakfast-- take anything except a couple changes of clothes -- home with you... then integrate what you have in a small way -- minus the junk back in the room. If she asks where it all is-- say it was relocated, not by you, but the management. And tell the staff to keep mum. Go on the offensive ! And stop letting yourself be victimized by the dementia. Dementia never fights fair-- why should you. And a white lie is the norm. Eventually she will forget she even had a home... question? Have you sold her place yet ? Get to work-- clean it up--- dump stuff-- give it to the Goodwill-- get rid of it-- clean up the house and sell it! You are the Power of Attorney ! Be that POA !
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Lindajc2 Sep 2020
I have since downsized her room. You’re right, less to pack up. Her home (1200 miles away) was emptied and sold. That was a fun time...NOT. Having to make decisions of what to bring back to my home, what to give away and what to trash. So many pictures of people I didn’t know, or my husband. What are we to to with all these pictures?! She is the last of her family, only ones left is my husband and her other son. Other son took what he wanted. So sad to just trash them. Of course I brought back a totes bag full of them for sally. But going forward, since I took out of her room a lot of unneeded/unnecessary items, she still packs, it’s just not ALLLL over the room now. Thank you everyone for your input
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You could try distracting her with photos of her childhood and family. I used to do this with my mother-in-law and it helped her forget about going home for awhile each time.
We'd also talk about her past, her family, childhood and young adult life. She enjoyed that.
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Lindajc2 Sep 2020
Destiny54. I found the other day a tote full of pictures I brought back from her home that I cleared out last year. She sat for hours just going through them. They do love talking about the past l, don’t they! .......Linda
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You need to face something. Your mother has dementia and she will keep driving you nuts day after day and you are the fool for doing what you are doing. You cannot stop her. The only thing you can do is mark her name into everything important and REMOVE ALL OTHER ITEMS. This is typical behavior and the nursing staff has their hands full dealing with it. But if there is nothing to pack, then she can't cause so many problems. Do not arrange, pack, move, etc. It is NOT going to stop. If it is special, then you take it home with you.
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tuffdecisions54 Sep 2020
OP has her mom living with her. Not in a facility.
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my suggestion, and I don't know if it will help your situation although it did help with my grandmother with Dementia, is to give her a suitcase and let her pack then leave the packed open suitcase on the dresser in her room. If the sign is not helping I would get rid of it. I don't know if there is any way you can make the room look like hers from her previous home (it might help with disorientation). I also would limit the number of items in her room (maybe only give her a weeks worth of clothing at at time?)
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Lindajc2 Sep 2020
i actually did try that, didn’t work LOL. She kept bringing the suitcase to the front door. ‘Sigh’. The downsizing helps though. Thanks
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Unfortunately this is a very common occurrence among those with dementia. Often it's a phase they go through, so one can just try to cope until the next "fixation" takes it's place.

We moved our mother to MC. She packed up items, mainly small items like pictures, knickknacks, wrapped in newspaper (she gets the Sunday paper!) They were in a bag, so I moved them to a little cubby in her room and there they sit to this day (she doesn't seem to go there.) I think she may have packed up clothes initially, but that stopped long ago. Staff would put the items back. She's just past 3.5 years there now.

The first 9 months she pestered my YB to take her back to her condo, where she'd been living alone prior to MC. About that 9 month mark, out of the blue she asked me to drop her off at her mother's and when I deflected that with "too late in the day" and "maybe tomorrow", she asked if I had a key to her previous home, sold 25 years prior! Her mother has been gone 40+ years. Last year she asked about one sister and when I said I hadn't seen or talked with her recently (mom is the only one left now on both sides), she said she's probably tied up with "that baby." I knew she was referring to my cousin's second child. Both were born with a form of MD, the second one totally disabled and mom's sister helped my cousin. That "baby" would be about 40 or so years old now (passed away after surgery error.) So, clearly mom is living her life from 40+ years ago. That will eventually slip back further as time and dementia progresses (she is 97 now, just recently had a mini-stroke, so she may not ever get back to a previous address.)

Although often it works to set up a room like one they had before, it all depends on what's in their mind. Even if it looks like home, it isn't and they know it. Reminders don't really help, and no arguing, explaining or correcting is going to change that. It will only frustrate you and perhaps anger her.

The best suggestions so far were to limit what she has access to. If possible, store only a few days worth of clothing, replacing them with others when the ones she has need to be washed. Limit toiletries and other items in the room. Keep just enough to get through several days. You might also take the suggestions about giving her bags or small luggage so at least the items packed up are "contained."

The artwork should probably just remain off the wall. Someone suggested screwing them to the wall, but she could damage the items, the wall or hurt herself trying to take them down. Since she is hell-bent on taking them down, they aren't doing much to help her "adjustment", esp since it's been a year already!

The less she has access to, the less she can pack and the less you have to "unpack." As staff has told other visitors at mom's facility, you have to live in their "moment." This is their reality and you can't change it, you just have to adjust yourself to it. For instance, if she's packed and ready to go NOW, gently tell her that it's a little late today, maybe tomorrow. Little white lies, vague time frames (they forget anyway!), something to assuage their anxiety and give them hope, even though you know it's a false hope. We use these fibs, little white lies, bend the truth to help calm them, not to hurt them. Real lies are told to CYA, hurt others or just spread untruths. This isn't the case with dementia. Often it's one way to calm them, until the next crisis arises in their minds! You can also just help her to live out of the suitcases, rather than putting everything back every day.

As annoying as this behavior is, it is rather benign. I would take that over those who become combative, aggressive, nasty, and those who refuse to do ANYTHING you try to get them to do, eat, bathe, toilet, meds, etc.! If she ever does start refusing to work with you, it might be worthwhile to hire someone to assist with tasks - often they will work with someone else, but not family.

Best of luck!
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Lindajc2 Sep 2020
Disgustedtoo. I do have an aide once a week. Working on getting more
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Have you tried having her write a letter to herself when she is having a moment of clarity? I often wonder if this strategy would help...
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Lindajc2 Sep 2020
WOW! Excellent idea
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Unfortunately my mother does this too. Even worse she takes her sheets off her beds so I have to remake her bed. I feel fo you. It’s very difficult and frustrating! My mom doesn’t read the sign anymore and when I ask her to read it in front on me and tell me what it says, she still can’t comprehend it. Her room looks like a tidal wave hit it. Not the cute space I had created for her, pictures off the walls, all her trinkets I had to lock away, even her mini blinds are all screwed up....again. Know your not alone, I haven’t found a remedy...good luck to you.
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Oh boy. I feel for you. I read a lot of nice suggestions, not sure if anything will work. Does she get out of the facility for short trips?

Here's a thought, that may or may not work. A neighbor had taken her Mom to the doctors. When she returned to her home, her Mom would NOT get out of the car. The neighbor was so frustrated that she was yelling, which caught my attention. I tried, but she refused.

I suggested to my very annoyed neighbor to take her for a short ride to go home. I explained to the Mom that her daughter was taking her home. And I would be there to help her get out. It worked! She had no idea who I was, but a very nice lady. I helped her get out of the car and her daughter and I helped her into her home.

You might try having her son take her "home". In the meantime, you can put most things back, but maybe save a few personal things for her to help you put them back, pictures, personal items.

Good luck. I hope this works.
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disgustedtoo Sep 2020
She isn't in a facility. From OP's profile:
"She's come to live with me and my husband (her son) since Jan 2019."
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My goodness you have your hands full. Take most of the items away and leave just a few. She is probably packing to go back to her childhood home, or the home she was at previously. Do you have any idea why she wants to go? My mother says something similar and most of the time it is when she is anxious or stressed over something. It may be because we want to give her a bath, do some exercises, or if I refuse to count her money over again after counting it about 4 times. She sometimes get red in her face and has a temper tantrum, which she never did before her decline the last few years. I am firm with her in a gentle way and change the subject or distract her. That works for us. I am tired too, believe me I am lucky I get out of bed in the morning and do not fall flat on my face. We need to take good care of ourselves as best we can under the circumstances, otherwise we will be in the grave sooner than later. Good luck and wish MIL and you the best. I commend you for being so caring to your MIL, you must be close, nice to see.
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Lindajc2 Sep 2020
Early bird, She’s not angry when she packs to leave 95% of the time. She says: ok I’ve taken up enough of your time. I’m ready to go home. In the beginning I’d tell her: you live here now and that was enough. Then it wasn’t enough, she wouldn’t believe me and get angry. I did the ‘explaining’ over & over. This forum though, has given me the tips & tricks I need to understand the what and the why about her behavior. Now, I’ve downsized and leave the bags packed. She’ll either live out of a suitcase or put them away herself ( or the aide will do it the 1x/ week she comes in.
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My Alzheimer husband did that the last two years he lived. (He just passed in July). My living room couch constantly had luggage on it. He would switch them out from time to time. He was ready to go "somewhere", but he didn't know where. A few times he had all MY ski clothes and paraphernalia packed in one of the pieces of luggage. Nothing else but that. Another time it was just shoes. My daughter would show up and say, "Where ya goin', Mom?" I'd say, "Unfortunately, nowhere". She'd say, "Where's Dad going?" I'd say, "He doesn't know". :-)

Yes, it is the most frustrating thing and a lot of work for you. But I'm sorry to tell you............things will get a whole lot worse than that. Bless you!
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Lindajc2 Sep 2020
Sister46, first let me say my condolences to you and your daughter. Thank goodness Sally doesn’t try to pack any other room but hers so the rest of my home isn’t in transition. Packing the shoes though, now that’s hysterical. I’m sure at the time you probably didn’t think so as you had to put them all back, but I hope you get a giggle out of it now. I’m aware things will only go downhill from here but I have this forum and it’s helped tremendously..... Linda
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We experienced this with my great aunt. Just a forewarning, don't be surprised when she uses her pillow case as a bag...that's what my great aunt did. They are very resourceful.
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Lindajc2 Sep 2020
Brielle, now, that’s funny!!! I just got a mental image of Sally with a pillowcase slung over her shoulder, heading out the door.
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Guys, a funny story a friend told me that his mom wanted to go home and the home still existed with family... overseas. He took her there to see what would happen. She loved it and he left her there with the family. I wish i could do that it would be the perfect scenario.
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Lindajc2 Sep 2020
Cye123,
does your overseas’ family have an extra room? LOL
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My mother in law use to do the same thing. Only she would put everything into large garbage bags and then call us for bogus reasons so we would make an extra visit. I didn't mind doing the visit but I put my foot down about the clothes. I let the staff handle putting everything away. She was in assisted living. Just told her she wasn't ready to come home yet or ask her why she wanted to leave her "apartment".
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Hi, it is impossible to understand where they are in their minds. They really want to go home , to their childhood home.
our mom does this all the time whenever she is alone. The only days she doesn't do it is when we have someone with her all the time, every second reminding her and even that doesn't work. She will laugh and say this is not my home.
we make up so many stories now - things that calm her down like ie. daddy left this house to you so we are here to help you take care of it. No note will work because they just don't get it anymore.
what i found that helped soooo much now is to get her attention away from thoughts. i bought an ipad pro - the big one and put on her favorite musical concerts - primarily andre rei and she sits there in heaven for hours and doesn't think about going home and we talk about stories of her life. I also bought google mini to play music quietly as it distracts her from thinking to go home - she sings along instead of thinking how am i going to escape. I do know that they can't be left alone with their thoughts as they are not current. It is a long road and an impossible climb but keep trying things and hopefully it gets easier. we did ask the doctor to prescribe a mild sedative - mild enough that she can function and so when she gets anxiety to go home - i give it to her teva-lorazem .5mg good luck
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Lindajc2 Sep 2020
I will try asking Alexa, to play only 50’s music. She likes that in the car. Thanks for the tip
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