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I always tell her I don’t know. I know she can’t go home, she doesn’t. Caregivers there tell her covid is going on and she needs to stay there. I remind her that they are taking good care of her there. I feel guilty. Do they ever stop asking? Is this normal? Sometimes she says she’s in prison, not sure, if she’s joking or not... I don’t ask. She doesn’t realize she has dementia

IMO, nobody benefits from dementia; nobody is 'happy' or content, and the wanting to 'go home' is a constant reminder of it. My mother is 94 and living in Memory Care. She constantly obsesses about 'going home', wanting to be 'in her own home', or moving into my home, or having the family (who are all deceased) come take her to live with them, and on and on. She fluctuates with the dementia; one week she thinks she's living in 'a hotel', another week she's lucid and angry as a wet hen insisting she 'doesn't belong' with all the 'idiots and morons' in the MC. It's a no-win proposition for BOTH of us, in reality. I suffer b/c I did what I had to do long ago by placing her in a safe place when she lost the ability to care for herself but was too big a burden for me to care for. She's fallen 73x already in Assisted Living/Memory Care, and is wheelchair bound and incontinent to name a few of her issues.

I don't feel 'guilty' about keeping her safe & secure in Memory Care, b/c she'll be miserable & complaining no matter WHERE she lives. My mother hasn't had more than a day or two of happiness in her entire LIFE, in reality. I do feel sadness and a bit of grief for both of us b/c of the level of misery we're both exposed to on a daily basis, however. THAT is what's sad. There are some people who are happy at my mother's MC; they smile and they're content. And then there's my mother who's snarling and angry all the time, looking to create a problem even when one does not exist. And I am the only child and the only person in her life who gets to be the sounding board for ALL of it. She also refuses to acknowledge she has dementia or that there is anything at ALL wrong with her. Again, it makes for a no-win situation.

Even elders with dementia who DO live at home talk about wanting to 'go home', so knowing that should make it easier for you deal with what your mother is saying! "Going home" is more representative of wanting to be at a better place in time than an actual brick & mortar building, for those suffering from dementia.

My advice to you is the same as it is for me: let go of 'guilt' and know that you're doing the best and safest thing for your mother. Guilt implies wrongdoing. Our mothers are unhappy with their age and with their infirmities, THAT is what we're seeing and hearing, I believe, more than anything. And we're trying to fix that which is unfixable. Set down some boundaries for YOU now. When and how long you will speak with her; when and how long you will visit with her. When you will cut off the visit and/or the conversation when it becomes too toxic. This isn't ALL about our mothers. WE count too. OUR lives matter TOO. You are killing yourself right now cleaning out her house to finance her life in the MC, and still having to deal with the daily questions and complaints. It's a lot. And you're feeling sad, rightly so, so give yourself a break. As long as your mother is safe and well cared for, that's all you can do. You can't fix old age and dementia, much as you'd like to. And that's what this all boils down to, really. Things only continue to worsen as the condition progresses, too. Know that she's in the right place for the staff to deal with her accordingly. All you can do is love her and let her know it.

Wishing you the best of luck dealing with a difficult situation and letting yourself off the hook with the guilt aspect of things.
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shelola Jun 4, 2021
Thank you. You put my feelings into words "Our mothers are unhappy with their age and with their infirmities, THAT is what we're seeing and hearing, I believe, more than anything. And we're trying to fix that which is unfixable."
This is my struggle and everytime I hear her say she wants to go home, to her home of 60 years, I physically feel pain for her. It has taken a tremendous toll on every aspect of my life.
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Heaps of sympathy and empathy. Yes to everything above. I had a dreadful visit with my mother yesterday. As soon as she saw me she started on me: 'I've got to get out of this place. It's torture. I need to be at home with my family. I'm not staying here FOREVER am I? I feel as if you hate me and you've all abandoned me.' - on and on. (She's been there over 2 months so far and I thought she was settling in. Hmph). Usually I've managed to keep my cool in the past, but it was so painful hearing all this AGAIN that I ran out of things to say and just cried. Then she thought I was laughing at her!!! As if! After about half an hour I pacified her somewhat but she just kept saying pathetically 'As long as you visit me every week... I just want you, I don't want anything else...' But there's the thing, my heart breaks for her but she doesn't understand that the clingier she gets, the more it makes me want to push her away. I just cried all the way home and felt like hell for the rest of the day. I phoned the home later and she was 'fine' and having her tea.

She doesn't recall ANY of my previous visits. She wants to 'come home' but she's forgotten where we live (even tho she lived with hub and me since 2002). And forgotten how miserable and grumpy she was when she was here!

The carer I spoke to said she'd had a lovely day yesterday sitting outside in the sun - she'd had to persuade mum to go inside at 9pm! But mum only really lives in the moment now and that's so hard to accept, especially when my visits just unsettle her. My heart bleeds for her and for everyone here. It does help though to know I'm not alone. xxx
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disgustedtoo Jun 4, 2021
"But mum only really lives in the moment now..."

This is important to focus on. With you being there to visit, it is likely triggering some older memories, so she gets into that going home routine.

Clearly she's "fine" after you leave and is distracted/redirected by something, tea, coffee, snacks, meals, a little time out in the sun, etc.

Two months in really nothing in the scale. It could take longer before she might stop, although some continue periodically with the "going home" routine. It is hard, but reassure her that you're working on it with her doctors, or some other issue like home repairs, virus, etc (I know, it's not the truth, but if it works, why not? Some insist we be honest, but to what end? They don't remember and the merry-go-round spins again. Sometimes home isn't even what we might think it is!), then try to distract her. Bring items like magazines to look at, ask about long past events (you'd be surprised what you might learn from that!), snacks, a walk in safe outside areas, etc. Anything to push the thoughts back and get them onto something else. I often liken this to a scratch on a record, where it will play the same thing over and over until you can nudge it past the scratch.

Yes, it will come back, but we have to understand that and find ways to move the mind along onto something else. It doesn't always work, but as we get better at it, and the condition progresses, there should be less of the "going home" begging.
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My mom still asks, but we are at the point where I have no idea WHICH home she is talking about. The one she was in just before I got her into a care facility? The house she grew up in? I think it is because her dementia is at a point where everything seems unfamiliar. She still thinks her parents are alive, too--I don't tell her they are not, because it hits her like they just died all over again.
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My mother never stops asking and despite dementia, she still plots and plans to escape and comes up with some real doozies when she can manage to get outside people on the phone! She doesn’t realizes she has dementia - or - maybe she thinks she’s covering very well. The nursing home staff contacts me now and again for advice on ways to “make her quality of life better.” I have no answers for them! All she wants is to be somewhere she can never be. And there is no comforting her. Or me for that matter. I can’t even read the advice columns on “understanding your family members with dementia.” I just find them superficial. My only comfort is knowing she is safe. Anyway - I feel your pain and sending you my best!
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disgustedtoo Jun 4, 2021
"... find them superficial..."
I would agree. Some websites make it sound like it is SO easy to manage care for someone with dementia. The problem is it's not like any other medical issue. It affects each person in an individual way, depending on the underlying cause, what part of the brain is affected (which can change over time as it progresses), the person's personality, relationships with family and background. There is no real one-size-fits-all.

Certainly the information provided helps us to understand a bit more, know what we might expect, and provides a little information on how to deal with some aspects, but never will any one document or website be able to plug our LO into a slot.

Many point to Teepa videos. Perhaps some are useful, but the one I tried watching was just so condescending that I've never watched another. Patching together what I could learn online and monitoring my own mother's progression was all I had. I could see similar behaviors and symptoms in others, but I could also see different behaviors and symptoms in some. How to deal with them is as different as how we have to deal with various people we encounter in life, as no two people are alike. Dementia just makes it more difficult, as you might be able to reason with those without cognitive issues (not always!), but you can't always reason with dementia. Some methods work, others don't. We just have to try to "go with the flow" and gear our care and responses accordingly.
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Here's a cautionary tale. I do the same as many here. Give Mom a simple answer to satisfy at the moment and she'll forget anyway. However, you might read to take old pictures to help with memory. This can backfire and start the want to go home thing again. My mama was content but I read an article and decided to take an album of really old photos. We enjoyed going through it and had some laughs, but for the first time in a VERY long time she wanted to go home and it broke my heart. Home was the place she grew up. Long gone and not even a possibility but I had planted that in her heart with these pictures. This might not be true for all, but from now on Mom and I will stay in the present! Distraction almost always a good tool and keeping it simple good as well. Best of luck to you. Each dementia patient is different.
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My LO went from the rehab floor to the nursing home section of the same facility. We told her it was just a "new room" and she would have a roommate for "a while." The whole truth was that her rehab benefits were cut and we were preparing for Medicaid. We had no plans to tell her she was not going home. Eventually, however, we told her we were not taking her home - we were forced into that by a family member who insisted we "be honest." If we did not tell her, the family member was going to. Grossly unfair to all of us. Even after that, LO would tell the staff that all her life-long belongings were at a storage facility (not true) and she would be getting her own place again "probably a small apartment" (also not true.) In her mind, there was nothing wrong with her and all the trouble she had while living in her own home was just a misunderstanding of sorts and let's try it all again?? (Not a chance).

She does not realize how compromised she truly is. And I repeat that to myself often.

Heartbreaking as it was to pare down her prized possessions and sell her house, it had to be done. She could not live there anymore and it's a legal issue when nursing home and Medicaid are in the mix. Just today she informed me that her dear friend had recently been hospitalized, but she didn't go see her friend because "I didn't find out in time" that she was in the hospital. ?????? Nope. Not the reason. She would have no physical means to get to the hospital (other than an ambulette), she would need 100% assistance just to get to her friend's room, and she would be lucky not to have a fall or medical emergency herself while visiting her friend! Sad truth is that she might not even have remembered the visit - even if there was a realistic way to get her there.

I'm so sorry about what you're going through, but you made the right decision. Cleaning out the house hurts so badly as it seems so final.
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She is stuck in this particular phase of dementia and will eventually replace wanting to go home with another behavioral issue, like accusing you of theft, or becoming aggressive. I've never heard a caregiver of a LO with dementia say "this is easy" , even when their LO is in a wonderful facility. The emotional challenges you face will continue. But you can be comforted, instead of being guilt ridden, by knowing she's being cared for where she is. Don't feel guilty in providing her with the care you couldn't. We all have our caregiving limits and when we reach those, we look for the next level of help where our LO can live out their lives, because we DO care.

Her telling you she feels like she's in prison is certainly not joking, it's her perception of her environment. After all, MC IS a secured area. So deal with it as best you can, and what you and the staff are doing now is appropriate, knowing “That, too, will pass”.
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Oh my goodness! I could have written this! Going through the exact same thing. I wrote a similar post on this forum yesterday. My brother and I are in the process of packing up my mom’s house and she’s in a memory unit after falling and having a head injury. She also has early stage dementia. Almost every time I talk to her she says she’s “going home tomorrow.” It breaks my heart. We haven’t told her everything about having to sell her house but have mentioned it. She, herself, has said she knows she can’t live alone anymore but, of course, she still thinks she can go home. I, too, struggle with guilt and grief. Heading to Tennessee Sunday to do more packing. Being in her home without her there breaks my heart. This is a very difficult season for everyone effected. Please know you are not alone in all of this and that you are doing everything out of love. I tell myself this daily but it’s still hard. Sending big hugs to you.
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Daughter1999 Jun 4, 2021
I’m trying to pack her house now but I can only do a little each day. It too hard emotionally. My siblings aren’t much help, each with their own reason, so it’s pretty much me and my husband trying to handle this. I’m sure that when I have to sign papers to sell its going to break my heart, hoping I have a real estate agent that can handle a crying client.
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When they talk of home it is sometimes their childhood home. We had looked at pictures one day with my dad. Pictures of his early life. That evening he walked out of the house and said that he was headed to Texas. He thought that he was in Alabama. He was in his house of 18 recent years. It took me hours to talk him down and convince him that he was in his home. Finally asleep he woke up the next day and returned to his normal 95 year olds routine.
I think the pictures triggered something way down in his memory. It was scary for me.
He now lives in a memory care facility. When I visit I never say that I am going home when I leave. He thinks that I live there with him. I say that I need to go to the store and that I will see him later. He tells me BYE.
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answry Jun 5, 2021
I messed up and did this when dad first entered the nursing home (I better get home or I better get going). First time he said that right, let's get out of here and then I had to try and explain. Another time, I got him to his room and looking out a window and tried to sneak out. He caught me before I made the corner saying let him get his things. This last time, he would not turn his back and chased us down the hallway in his wheel chair saying he was coming with us.

This was the first time I didn't break down once I got in my car. That 87 year old was speeding in that wheelchair. I didn't know an 87 year old could make corners and speed like he was in that wheelchair. We had to duck around a corner and I heard him asking hey which way did they go.
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No they never stop asking (Would you?) I always told my Mother as soon as she gets better…..Do you ever take your mom out of the NH for relative visits or restaurants?
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Daughter1999 Jun 4, 2021
With covid I don’t think they’d let me take her out, and if I did, I don’t think she would return willingly.
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