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I had to use the bathroom at home this evening and when I finished, I found my mom standing near the front door. I asked her what she was doing and she said she was going home. I asked her where home was and she said "2890" which is the correct street address for our home. I asked her why she didn't think she was home and while she said she recognized rooms she was in, she did not think of them as home. Yesterday and today, I found her just standing for a few minutes before moving and also looking around the corner into rooms in the house like she was not sure what was there. Is she thinking of "home" as a concept now? I feel like she needs to go to assisted living in a memory care wing ASAP, but my father keeps saying she doesn't want to go and will fight it. I can't get him to realize that it doesn't matter whether she wants to go or not. Have any of you had this experience with a loved one saying they are not home?

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Some people express travel or going home as near death awareness. I witnessed this three times. Did you ask her about her health or if she is feeling like she will not be around much longer? See if you can get her to expand on her statement. I do not mean to scare you, but something to keep in the back of your mind.

If she is not a wanderer, and you are not facing burnout as a carer, there is no need for memory care.
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Reply to MACinCT
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I think this is very common. They don't recognize where they are as home and want to go there. Though I guess it really no longer exists in their minds since they are so confused. My mom is in rehab and also wants to go home. Which for the last 1.5 years has been AL in the same building she is currently. She looks at me like I'm crazy when I try to explain this to her. Broken brains and hard to deal with, aren't they? We just have to go with the flow and not make a big deal of it.

It seems like your mom is thinking about walking out the door to find "home". If you have any feeling she will or she tries to do so, then MC would be an excellent solution to the "elopement" issue.

I wonder if your dad is saying she doesn't want to go when in fact it's him that doesn't want her to go? Her safety needs to come first. If you guys can't reasonable keep her safe (without sacrificing your mental and physical health), then it would be time. Of course your mom doesn't WANT to go to MC. Everyone WANTS to stay home. But it's not always feasible or the right thing to do. When/if you are ready, you will need to get dad on board somehow and might have to use a therapeutic fib of some sort for both of them to get it to happen.

Best of luck.
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Reply to againx100
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Wanting to go home, for an Alzheimer's sufferer, means she's wanting a place in time when life was easier and she was happy and content, more so than a brick and mortar building. They regress in time back to when they were young girls, so nothing looks familiar to them now. Which is why they forget people's faces sometimes....they're expecting to see a husband of 22 instead of an old man of 80, as he is today. Most of us with loved ones suffering from dementia know the begging of "I want to go home" even when they ARE home.

Install a lock high up on the exterior doors if mom is at risk of leaving!!!

Mom may be seeking physical or emotional comfort of some kind when she asks to go home. She cannot express what she needs in words, most likely, so some detective work on your part is required. Offer her a hug, a back rub, a cookie, a blanket, etc. See if she needs to use the bathroom.

If you were to place mom in Memory Care Assisted Living, she'll still want to go home, nothing will change. Which makes people feel guilty for placing them, thinking they want to go back home, not realizing "home" is a place of comfort only. If dad cannot handle moms care at home and is burned out, then she needs to go to Memory Care Assisted Living asap. Or, if she starts wandering and getting lost, God forbid.

My mother wanted to "go home" for 3 years while Living in Memory Care daily. She'd tell me she was riding the subway to go see mama and papa. We live in Colo and mama would've been 137 years old living in NYC, in moms mind. Then she'd accuse me of locking her siblings (all deceased) in the closets and hiding them from her. She'd be wheeling around the building looking for them and would not be distracted. Ativan helped calm her down.

I've never heard of wanting to "go home" before death occurred. What my mother did frequently before she passed was dream about her mother. I think she was having visitations from grandma to prepare her for the journey coming up.

Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon. It's written in plain English and a very good book to teach you all about Alzheimer's and dementia and what it looks like. What to do and how best to cope.

Wishing you the best of luck with a difficult situation.
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Reply to lealonnie1
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Sometimes I think it is an easier way to describe feelings: of being unsettled, confused, in pain, worn out. Done with the day. Wanting to be safe, comfortable, at ease.

I want.. *home*
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Reply to Beatty
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From your profile:

"I'm one of four siblings who has been living at home since 2020 for multiple reasons. The first reason is my work history (being hired and let go). The second reason I have been living at home is to save money and to also help my parents. My mom is in the middle age of Alzheimer's, which her mother had. She has not been able to drive since 2020. She has no short-term memory, but still remembers a lot from her childhood. My father is still working and they refuse to downsize."

You don't mention how old your Mom is, but dementia is a progressive disease. "Sundowning" is a common behavior. I learned a lot from watching Teepa Snow videos on YouTube. She's an expert on dementia and caregiving and she provides excellent education on how and why dementia changes our LOs and gives techniques for more peaceful and productive interactions with them.

It will be up to you whether you want to be the 24/7 in-home, hands-on caregiver for both of your parents as they decline. You can't assume any of your siblings will step up to help, either. If your Mom has a PoA, this is the person who decides if she'd be better off in facility care or not. Not her decision since she now is less able to use reason and logic, and not her husband unless he's her PoA and/or is no longer willing and able to be her primary caregiver.

Is your Dad not taking proper care of her? If he's willing and able then I agree there's no need to transition her anywhere until this changes. Really the ball is in your court -- you won't be able to live there and not be the caregiver.
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Reply to Geaton777
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My mother was trying to escape out of the front door. Her doctor placed her on Ativan and Seroquel and she stopped trying to leave.

UTIs can also cause unusual behavior. Have her tested.
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Reply to NeedHelpWithMom
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Is this new behavior?
If so she needs to have the urinalysis right away to rule out UTI.
If not, it is time for a full diagnostic workup from her doctor.
It's time to get that arranged.

If there is dementia here then there are decisions that will have to be made.
Your father is either completely competent himself and will make decisions for/about his wife, or he is not.
If he is competent then you can only advise.

Eventually your father will fail under the stress of caregiving, or a crisis will come with mom wandering away. At that time you may or may not need to assume guardianship.

I think you would be well advise to discuss with with APS if mom is diagnosed with dementia.
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Reply to AlvaDeer
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tbevan25 May 9, 2024
Thank you for your insightful response. What does the acronym APS stand for?
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I feel for your concern,the wandering stage is very scary. If your father can guarantee her safety then what can you do? I was 5 minutes from my mom's to fix her computer (again) and she wasn't there!!! I called the police and while I was waiting outside the neighbor said she got into an unmarked car with a stranger! Police was lucky enough to track her down via her phone calls,she left her cell phone at home. She called a cab service to go to a Dr appointment she had the day before? The clinic was across the street from my work so I called them and there she was. She was waiting for me to get off work? Not on Saturday. I'm like, mom you knew I was on my way over? After placing her in AL, a few months later, everything was missing, stolen! She couldn't realize that she had a living room and a bedroom. She was in the living room and someone stole her bedroom stuff and vice versa. When she couldn't see things they were taken! So maybe your mom is confused also? Maybe it's time for you to have a serious conversation with Dad,Moms not going to get any better and she needs to be safe. My mom ended up in memory care because it's locked off and she can only leave the grounds with family. I'm telling you that fear stayed with me, is she lying in a ditch somewhere? She knew I was coming, where is she?? Five minutes, I missed her by 5 minutes (tears).
Do what you can, you know something isn't right.
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Reply to JuliaH
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Mid-stage, my mother was convinced that her house of 15+ years was not her home, although she acknowledged that her furniture, dishes, art, etc, were all identical to her home. She was certain everything had been perfectly duplicated and demanded to go “home”.

Here, and in care, she made attempts to “go home”, which she identified as the first home she bought with my father when they married.

Her dementia is advanced, she’s still in care, finally content, but sometimes she thinks she is in her childhood home, staying at a bed and breakfast, at a hotel, and sometimes she does recognize that she is in bed, but thinks she’s in a public space such as a funeral home, waiting room, or station, etc. When they bring her meal she thinks she has moved to a restaurant. Oddly, she knows she is not in her “home” and sometimes refers to returning to it once she finishes her travels.
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Reply to Anabanana
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"HOME" can be a place, an actual address. Either where they are living now or it could be a home from childhood, early marriage anything.
"HOME" can be memories. Memories made in any of the places that was called home.
"HOME" can be a feeling. A feeling of safety, a feeling of physical, mental wellness.
You can reassure her that she is home.
You can show her pictures, her clothes.
You can tell her that she is safe.
You can tell her that you love her and will stay with her.

The concern that you should have is
Can she get out of the house?
If she does get out what do we do?

You can put latches on the door high enough that she is not likely to see them but you can get to them easily if you do need to open the door.
You can make sure that there is a way to track her if she does get out unaccompanied. Air tags, a cell phone with the ability for you to track her (only good if she takes the phone and it is on and charged.) In many areas you can let the police know that there is a "vulnerable" senior. Some areas have a form you can fill out on line. So if she does wander they can notify officers and other surrounding areas. (I was told by an officer one of the times my Husband "went for a walk" that usually Right handed people tend to make Right turns. Turned out my Husband did not do things in the "usual" way)
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Reply to Grandma1954
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