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Today he got physical about it. I made the mistake of taking him outside the facility for fresh air. He said he would NOT go back in there and he would either drive or walk all the way home. Grabbed for my purse and pulled on my arm before staff came to the rescue and calmed him down. First time I've heard that packing is something a lot of residents do. The first time I unpacked him, hung up the pictures again, and so on. This second time I did not. It must be exhausting to keep doing this. Does it ever stop?

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My LO is in a SNF, and I was suggested off the bat to not take them outside or off the grounds to reduce the risk of conflict and confusion.
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Earthgrammy Mar 2022
Yes, same here. We were just sitting outside on the front porch of the facility, but "technically" it was beyond the secured door. Bet they won't allow us to do that anymore!
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Packing & rummaging is part of advanced dementia for some. When I worked in a Memory Care ALF, we had a resident who'd pack her bag daily, put on her hat & coat, and sit by the doors to the lobby and wait for her 'family to come pick her up.' She'd sit there for hours on end, until it was time for lunch, and then a caregiver would come tell her, and she'd trot off to the dining room. She wouldn't come back to the chair again until the next day, but there she'd be the next day, waiting once again. She wasn't upset either, just waiting with her bag next to her on the floor.

Some dementia sufferers do this in their own home, too. They pack their bags, thinking they need to get to a different home, so they're packing to go there. "Going home" is a common thought that many elders get stuck in a loop on when they have dementia. As their disease progresses, they may have access only to their first 50 years, then 40, then 30, and so on, until they go back to their childhood memories. This is not an orderly reversal – the person may remember more or less on different days and at different times during the day. Therefore, when they're back in time to being 20, they're looking for the home they had at THAT TIME; saying they 'want to go home', meaning that home they had at 20.
Ergo, why they're packing their bags all the time, if that makes sense.

Your husband may remember the home he shared with you and want to go back there, honestly believing you're there TO take him home with you. You just don't know what they're thinking when dementia is involved. You're best off not taking him off the grounds of the MC at this point, and limiting your visits to inside the building. If your visits are going to upset and agitate him, you may also want to cut down on them for a while. His doctor should be alerted if this is new behavior and perhaps a mild sedative can be prescribed. My mother (with advanced dementia) was greatly helped with .25 mgs of Ativan when she was very upset insisting her 'mama and papa' were in the MC building waiting for her but she couldn't find them. She was stuck in that loop for quite a while before I insisted on a sedative for her. It helped a lot.

Dementia patients go through different stages of the disease; so your DH may stop packing his bags at some point, and he may not. It's impossible to say. He may trade that habit for a new one later on down the line, who knows? He may enjoy being given a 'job' such as sorting nuts & bolts at the Memory Care; lots of men enjoy that, or even folding towels or washcloths. It keeps their hands occupied and their minds OFF of the OCD type thoughts that sometimes plague them

Here's a great article to read all about dementia; it's a 33 pg article and a free download:

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580


Wishing you the best of luck with a difficult situation.
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Yes.. he must be very distraught as to where he finds himself. He probably doesn’t need all his things put back up. Of course he might enjoy the repacking later or at least give him something to do.
It will pass as his dementia progresses.
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It might help to keep a special 'packed' bag by his door so you can praise him for being ready to go... tomorrow.. and tomorrow...
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Ever see the Twilight Zone 1962 classic "Kick the Can?" It shows a resident doing exactly this and getting into son's car. (Son managed to get him back to the facility though. Hey it's Hollywood.)

To you, the outside excursion seemed like a humane break. After all, the MC is not prison. But to him, it triggered his hope and then insistence on going home to not only a place, but a place back in time. It already got physical when you were dropping him back off at the MC. What happens if he starts doing that to you in the car?

Instead of taking him out, try visiting around the MC's special events. Ice-cream socials. Parties. Pet therapy. That is now you guys' special occasion, your special time out.
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It took my mom about a month to stop. I was told it is a phase. Tough to watch and hear but it will pass. So sorry,
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Sorry honey, the house is torn up, we will have to wait for the plumber to finish fixing the toilet.
Sorry honey the roof leaks, we need to get it fixed before you come home.
Sorry honey, the street is torn up and we can't get there today.
Sorry honey, the carpet cleaners are in today and we have to wait for the carpet to dry.
etc.
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Mine was a beautiful, fashionable, well dressed woman when she entered Assisted Living, and she almost immediately developed a technique for “escaping” that she refined so deftly that the facility had to post her photo in the receptionist’s office to prevent her elopements.

In our particular, specific case, it became necessary to limit visits to a very brief period of time, sometimes as brief as “Hi, on my way to……..See you tomorrow”. Then LEAVE, to let the staff manage the fallout. We knew very soon after arrival that getting “fresh air” was a low priority for his ultimate adjustment.

Your husband needs to learn that he can (and must) relay on the AL staff to do things that he can no longer do on his own. You can’t help him or do this for him, except by supporting the staff and not lingering with him as he escalates.

If the residence staff includes a psychologist/psychiatrist, ask for a consult. A cautiously prescribed medication eased my LO’s anxiety and helped her to establish a comfort level with her surroundings.

She had entered AL in the spring, and by October, after a medical appointment off campus, we were grateful to find that she wanted to “go home”, and she meant her residence.

I wouldn’t enter into the packing-unpacking process. An uncomfortable and really pretty useless procedure on your part and possibly more distressing for him.

This does pass, and my LO grew to enjoy some of her time in “the hotel”. Hoping DH adjusts soon, for himself and for you.
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you don’t say how long he has been in MC. When we first brought MIL, she was going through this. We did not take her out even though we wanted to, not even onto the patio on a beautiful day for fear we would not get her back in. At times she would call us and tell us she was packed and going to take the bus home, we would just say ohh we were coming in the morning.
7 months and we thought we were passed this but recently there has been some disturbance on the MC floor which is now making her start all over. Ugggh
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When my mom did this, I didn't have any clue about life with Alzheimer's and I used to try to reason and unpack her, every. single. day.
Much wiser and experienced now (sadly). Mom passed 12 years ago and now my sister has the nasty disease.
Now I would just say things like... oh why don't we put these things back till tomorrow and we'll go then. My car is full of things for the farm. Or, I am on my way to the doctor, but will be back in the morning... "therapeutic lying".
Good luck.
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My father is in MC now for 1 year and he wants to leave all the time. So, this is what I do I do my dad laundry and when I go and take them back, I get his dirty cloths and tell him I have to go to his laundry, and I will be back in a couple days, and he says (to pick me up right) I just say ok see Ya later. This is the hardest thing I have ever done but I know Hes's safe. Take deeeeep breaths I know it's hard
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2 mos in MC and my dad is still packed up, but is rarely begging to go home. He mostly refers to going home in the future. One KEY thing, he has stopped packing his toiletries and hearing aid charger and daily essentials, which I put notes all over "leave unpacked". This has helped since he would claim he didn't have or couldn't find these items, and I would spend the first 30 min of my visit searching for the charger and waiting for the hearing aids to charge so we could talk! Maybe focus on unpacking just the essentials, or give him a special bag labelled for those items, or label one drawer "leave unpacked". It might not work, but it would be less exhausting than unpacking everything, and it's easy enough to try.
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Lymie61 Mar 2022
This is a great idea! Leave stuff packed that he can unpack as he needs and just unpack the essentials like toiletries they way you would if you were visiting for a few days. This way he is making himself at home rather than it being done for him and maybe as he needs things and finds a place for them he will slowly get comfortable settling in as well.
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This just made me think twice about taking my husband outside the facility for fresh air. Mine was doing this at home and actually tried to jump from the car on the highway when I was driving… TWICE. He thought I was an imposter and holding him against his will. The whole thing is heartbreaking 💔
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MIL asks to be removed from ALF all the time and that she is in prison. She cannot come stay with us. She can’t go home. The house was sold, because she wrecked it with her hoarder ways and her dog peed and pooped everywhere inside the house.

We simply don’t visit. It sets her off, because she is perpetually angry. We’ve asked the ALF to provide a psychiatrist or neurologist to evaluate her, because we were not able to get her to go to a doctor prior to entering the ALF. They wanted us to take her to the doctor. Since MIL is combative with family, we could not do it. Finally, a psychiatrist visit was scheduled and she is on medication. We still can’t visit. She would persist with cards begging to be removed to DH. Knowing her past behavior, he’d throw the notes in recycling without responding. I finally sent her a card telling her that her requests were falling on deaf ears - her son throws her notes away. It is frustrating for him because the relationship with his mother has been poor for over 20 years and any interest in interacting with her went out the window when his father passed almost 2 years ago. He wanted to write her off at that point, but was the executor to his father’s estate and had to sell his father’s car and take care of some financial items for her.

Since I’m on the POA with DH, I push him for basic issues, but visits are out. Medical care for her is a priority, which she is now getting. She doesn’t have the forethought to pack her stuff up and try to leave on her own, which surprises me.

MIL would have ended up in one of the state run mental institutions without prodding to get her into the ALF. The ALF is a better place for her. She keeps her dog, and it is a nice place even if she hates that she can’t continue to be the hoarder she was before.
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Earthgrammy: "Going home" is a mantra (and the associated preparedness) shared by many patients suffering from dementia. Perhaps it's best not to take him outside the facility, else he may believe in a false idea of going home.
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The packing thing is a stage and it does pass. My mother did it for about a year. I took away her suitcases, then she used trash bags. I took those and she wrapped things up in a shirt or hat. It's their last ditch effort to feel some control in life. The begging to take her home was the most painful stage. It passes too. Medication helps! Mom takes antidepressants (Zoloft) and Seroquel daily. Trazadone also works well for her. Don't reason with him. Try to distract or divert his attention. Say, "How about a nice cup of coffee/cookie?" "Let's watch the ball game." You'll notice it gets worse in the afternoons (sundowning). I had it timed perfectly where I'd give Mom a Trazadone BEFORE the sundowning started. The minute she said the word, "home," I would plop a pill in a cup of coffee. Good luck.
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Update: A phone call with the neurologist helped today. He gently explained that the disease is progressive, although at different rates. He said, "First you need help. Then your wife needs help. That's where you are in the process." Simple but it got through, at least for now. He's staying for now, although he may forget that by tomorrow. Thanks for all the feedback y'all.
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Llamalover47 Mar 2022
Earthgrammy: Thank you for your update.
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