Mom in memory care for 9 months still asks me when she can go home. Do they ever stop asking?

I would think it should stop eventually, and maybe if you refer to where she is as home that might help.

My mother occasionally talks about her house where she lived for 50 years and where I grew up, but she doesn't ask to go home now. She's far enough into dementia that she often thinks she's 16 and in her childhood home, so the concept of "home" I think is kind of gone for her. My brother now lives in her house, so I can tell her the house is being well cared for on the rare occasion she mentions it.

Stop feeling guilty. As long as she accepts a calm answer “When the doctor says so”. “After the road work is finished”.
”When it gets a little warmer (cooler)”. And is comforted and satisfied by hearing it.

This is a pretty common occurrence among newly rehoused people with dementia, and normal, and also typically much more painful for caregivers than for their LOs.

After several months, my LO would often talk about how pleasant “the hotel” where she was living was. I was grateful that she was no longer searching for the place where she was born, 90 years before.

Yes
but it takes time

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.

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.

Some people do accept and adapt and some never do. There's no rhyme or reason.

Just don't feel guilty for making that hard decision.

Your mom may never stop asking because her brain is broken. Believe your husband and keep doing what you're doing. You have no reason to feel guilty. You are doing what is best for your mother and it is hard and often unpleasant. Be kind to yourself. It's an adjustment for both you and your mother.

I also think she thinks she is stuck there because of covid, when she went there from the hospital, they told her there’s a pandemic and she needs to stay there. That was their story. Tonite she said “this should be over soon (meaning covid) and then I can go home”. I just said ok mom. I’m not sure what else to say to her, I can’t say no mom you’re not going home. This is so hard to deal with.

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.

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”.

My 94 year old dad has been asking that since he moved to assisted living in 2019 and now in memory care. Makes me feel guilty and he is not aware we are preparing to have an estate sale and sell his house - it's been sitting empty for over 1-1/2 years. Insists he wants to go by there again to visit but I'm not so sure that is a good idea. I couldn't even get him in the house anyway with the stairs and he is wheelchair bound. He has to travel by wheelchair van. But in the next breath he talks about going to Seattle (where he lived growing up). The memory care told me to acknowledge him but move on with the conversation to something else. They take such good care of him and he does not understand the extent of his medical needs and care required.

Hi, I’m sorry for the issues you are having. While every case may be different, our mom was in an assisted living facility for dementia care for almost five years. She may have stopped asking as frequently but never stopped asking totally. We would visit daily and sometimes find that during the night she would pack up her things and take pictures off the walls and say she was going home. It is more than extremely sad and heartbreaking. I am sorry you are going through this also. We were told to tell her she was under a doctor’s care and he had said she couldn’t go home yet.

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.

While I was living in Texas I spent the last four years in Nursing Homes and to me it did feel like prison. There really isn’t much to do in those places. Yea they had some actives going on but not much. Maybe Bingo. You were lucky if you got outside otherwise you were stuck in your room in bed with just the TV to watch

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!

We wish so badly we could fix things and to make our parent happy but until we get to the point of acceptance and knowing that it’s impossible you will continue to feel like something is your fault. You must come to grips that there is nothing you can do to change their brain.
My dad often referred to his NH room as a prison cell and he lived with the other inmates. It was sad, but I knew this was his inability to accept what his life had become.
sad...of course it is. But you can only control your own self and no one else. Just continue with short answers and redirect her towards another subject or activity. This is one of the hardest journeys we will go through in life.

Recent personal experience Memory Care at this time post Covid, present government money awarded to STAY HOME people there are not enough good employees. Dreadlocks, long nails & eyelashes appeal to these so-called paid caregivers are more important to them than a client. Plus your Mom is likely an “in-between-er”. One whose mind is bad yet her good sense & sound body alert her to the lack of care & ignorance that’s going on around her. Better off at an AFC (Adult Foster Care home) than large Memory Care business.

Your mother may very well feel like she's in "prison" since she cannot come and go freely.
Maybe in conversation you and your mother could talk about "home" and things she would like to be doing there. If she liked gardening, for example, you could talk about wonderful things to have in a garden. Encourage conversations about your mother's "at home" memories and talents.

Alzhimers patient tend to always want to "go home" even when they are home. My MIL has never left home and she asked the same for years.

No, they never stop asking.
She doesn't like where she is so she wants to leave.
So sad but most can't live at home unless they can afford a 24 7 Caregiver or they live with a relative.

Prayers

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.

My mom also was in a strict locked down memory care facility... mom called it prison...we found an assisted living home where half is a locked unit ...half allows residents to have an outside patio they can access at will {fenced in} and there is a lot more freedom to move around the units. She is unaware it is for dementia...Mom is soooo much happier. We now hear her say its a great place to live..Look around see what other facilities you can find..

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

I tell my mom that they need more time to work on her and get her better before she comes home. She always says oh that's right, okay. I told her progress is very slow but I hear good things and she is happy. I feel like a heel but she is comforted.

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.

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?

"Do they ever stop asking?"
Sometimes. It may also morph into some previous home they lived in.

"Is this normal?"
Very often, yes.

For the prison comment, just pass it off and try to move onto some other topic or activity.

"She doesn’t realize she has dementia"
This is also common. Sometimes they will vehemently deny it too! I never used the "D" word around my mother. Her definition of it was wrong and she'd get angry just mentioning forgetfulness!

lealonnie1 said:

"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."

This is often true. Unless we can become detectives and explore where their minds are, we don't know where "home" is for them. For my mother, the first 9 months in MC she would hound my YB when he did visit to take her back to her condo (25+ years she lived there, about half of it with dad and half alone after he passed.) Out of the blue while I was visiting one day, she asked if I could drop her off at her mother's on my way home. She's been gone over 40 years! I had to think quick, glance at my watch, said it's a little late in the day, not exactly on my way home, maybe tomorrow. She said okay and then promptly asked if I had a key to the place in X, you know, on XXX road! That was our/her home for about 30+ years, but over 25 years in the past. I looked at my lanyard, said not with me and I'd look for one at home. She said okay and indicated she would go stay there tonight if she had a key! She also associated her mother with the place (her mother lived with us and mom's sisters her last few years, but it was never really her home.) So, memories became older as she regressed in time and also became mingled.

Babs75 said"

"The memory care told me to acknowledge him but move on with the conversation to something else."

This is often the advice given, both online and from staff. In many cases it works. It might take multiple attempts or time to achieve this, but it is best. You can't argue with dementia and win. You can't convince them their "reality" is wrong. Trying to do this leads to anger and frustration for one or both of you! Acknowledge it, indicate you'll look into/take care of it and do your best to move the mind onto something else - tasks, snacks, whatever diversions work. You need not feel guilt when doing this - it's to help, not hurt!

(some repetition but drives home the point):
My mother hounded my YB for months any time he visited, to take her back to her condo. She never asked me, thankfully! This is either because I had him and OB do the move (I took care of most everything else before and after!) or because somewhere in that mind of hers she knew better than to ask me.

That lasted 9 months, when she had a step back in time and was focused on our/her previous home, from 25 years prior. At some point, based on various conversations/discussions, I pegged her reality as being about 40+ years ago. We/she lived there 30+ years. Sometimes if you ask the right questions or get into the right discussions, you can figure out where "home" really is. Had she lived longer (she was in MC 4 years), there would likely have been further "step backs" in time/memories, who knows which "home" that would have been. It's different for each person.

The best you can do is give non-committal answers and leave them with some hope. It's false hope, for sure, but if it satisfies them, calms them and mitigates the current issue, it is worth it. Don't think of it as lying. True lies are told to CYA or hurt others. What we do isn't to hurt, but rather to calm them. We need not feel guilty or let others guilt trip us for doing this.

What you are describing is 100% normal. In fact, it is exactly what my mom said every time I saw her. Don't feel guilty. She is where she needs to be. She probably says "prison" because MC facilities are locked so patients don't wander out. Sadly, it will stop at some point when her dementia progresses.

In the meantime, distract her and enjoy her while she is still able to communicate somewhat rationally. It is so hard when they refuse to accept that they have dementia (my Mom refused to admit to any deficit). Hang in there. You're doing the right thing.

This is a difficult situation for her and you. All moves are difficult for seniors with dementia. Being in memory care may seem like prison for someone who is used to being able to come and go freely, eating when they wish, etc. Also, she may think that she can still be independent. Everything is more regimented in a senior facility. But there is a reason she is there. You can't reason with her directly; it's better to say things like the caregivers are saying - that she needs to be in a safe place during the pandemic and she needs to be in a place where they can take good care of her. It's more difficult when someone doesn't know they have dementia. They think they can still do everything. My mother was the same, and even did things like cutting off the wrist band that they put on her to set off alarms when she got close to the door. My mother was a wanderer and even got out of the locked area a couple of times. Sadly, eventually her mental and physical state declined, and it was only then that she stopped asking to leave.

People with dementia do not know they are repeating and are confused and will never admit to it or accept it. She wants to go home but she can't and you should not try to tell her anything - it would be useless. Just distract her or make some excuse as to the future. Don't fall into this trap. Once they have dementia, all I can say is "God help you."