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

I think the prison thing might be common. my 88 yr old mom who lives with us thinks the ceiling light "moves" because it has cameras. Total spy kind of stuff.

We constantly refer to the memory care as home. If she asks where she is we say you are at home. When we are walking around the facility and return to her room we say we are home now. For now it seems to make sense to her.

Do they ever stop asking? I was not prepared for this and unsure I will ever be prepared for the pleading to go home! Initially I was reading they will settle (not necessarily all from this forum). I’ve started to believe, that maybe they do not settle but we settle and give out and tune out or stop going to avoid our own personal pain or to keep from witnessing the pain we feel they are experiencing. Maybe both!

I too get heartbroken and some nights I toss and turn wondering how he is doing and if he is getting adequate care or if it’s just another version of the care he was receiving at home with the exception of getting meds on time and meals.

All I know is that last night even reading this post made me very, very sad and I could not handle any input until today. However, I was glad to see truth that they may never stop asking and read some fresh ideas from others. I have to mentally prepare for my visits and if I ever find a way to make other arrangements I may or may not try.

I'm so so thankful for you posting this question first of all and thankful for those posting with honesty!

https://teepasnow.com/blog/how-to-calm-a-person-living-with-dementia-who-is-wanting-to-go-home/

Today mom called me and told me she wants out of this place. She says there’s nothing wrong with her and she needs to go home (I guess she doesn’t know she has dementia). I told her to ask the caregivers there if they know anything, says they tell her they don’t know anything, but they say there’s a pandemic out there...and she doesn’t care, she needs to go home. She tells me to talk to the dr, and then says “let’s go to the house on Monday and call the dr. and ask if I can go home” ????. .I just said ok mom.
This is getting harder to deal with. I know I just need to keep putting her off, but it gets harder. Mom has always been pushy.

The best advice I rec'd when my mother started suffering with memory issues is the following. Join their journey. What does that mean? Try to get into her head, if at all possible. Stop feeling guilty. She is well cared for and safe, and that's what is important now.

You don't have to avoid all conversations just because they don't make sense to you. Yes, you can redirect and deflect and avoid the topic, but maybe you can also just have the conversation. You also don't have to tell the truth, because you know she's not going home, but she doesn't know that. You could say, "in a couple of days".

Do they ever stop asking? There's no way to predict this. My mother never asks this question, but another woman at her facility asks it constantly.

Visit your mom, try to find something pleasant to do with her while you are there. Be in the moment with her, because that's where she is. Be with her, in the moment. Join the journey.

Imho, when they ask "to go home," they may be referring to their childhood home, et al. Just keep remembering that your mother has a broken brain and as such, it's common for her to be repetitive.

My brother and I fib with partial truth...we told our mother that she wanted to get a smaller place that she could easily maintain, since the house was too big for her to clean and mow the yard and she liked this place (where she is currently at). We also told her since moving her into her new apartment the house has since sold and the couple who purchased it, is now living in the house....Basically, it is all true except the part she picked out her new place for her to live.....My mother asked to go home for 3 years after being place in a memory care center and we tell her the same story above. She doesn't remember what she was told each time she visit her. She also talked about needed to drive to go get some groceries or just to go shopping and the same story my brother and I would tell her, don't you remember you let Aaron (brother's son) borrow your vehicle so he had a way to go to work since his car is in the shop and they had to order a part and he is waiting for the part to come in. My mom answers Oh yes, I remember and sometimes she will add it sure is taking a long time for the part to come in. We just agree with her. She doesn't remember that she hadn't drove in over 5 yrs.

yes they will keep asking, just tell her that as soon as you get with the doctor to find out when it is okay......she has to stay there. then talk about something from her childhood in hopes it will take her mind off of it (but probably won't)... just keep answering the same way. wishing you luck.

I am also an only child with a Mom who has been in AL for almost 3 months.

I've become such a liar...but here are some concrete 'lies' that have worked for me so far..

I tell her I am actively looking for a house in the neighborhood that she calls 'home'...."haven't been able to find one yet...and have you seen the price of housing these days??" Then show her (using a website) what she can get for the money she has.

I told her she burned down her kitchen (grabbed a burned kitchen picture off the internet) and we are still doing repairs....

When she begs me....I just respond with "Mom, I promise you I am doing everything I can to help you". "I'll do my best" "hopefully it will work out" and so on and so forth.

The lie about the Dr. saying she can't go home yet doesn't really work for me, she just insists I call him right that minute and get him to release her.

The good thing is I can tell her something different each and every time...because she doesn't remember the lies I've already told. :(

What a horrible disease. It helps me to think of it not as guilt...but grief. I am so sorry that my Mom has to deal with the broken brain, and I miss the Mom I used to have. I am grieving who she used to be.

I am sorry this is happening to you, too.

Hugs.

I asked the same question a few months ago because my dad keeps asking me and his PT the same question over and over again, this has been going on for 2y 7m. My siblings keeps telling me I should tell him the truth and by instinct I never told him that this is his permanent home, I am terrified he will run away again or give up on life. What I tell him is that he needs to get better before he can leave and only a dr can approve him leaving. So now every dr I take him to he asks when he can go back home. His dream is that he will buy a pickup truck place a mattress on the back and go prospecting gold and stones. He tells everyone at the facility that he is leaving next month.

As I know for over 2 years now is that it is all he remembers, what he used to do when he was healthier and younger that has been his hobby for as long as I can remember.

If your mom has a neuro dr talk to the neuro so the dr plays along with the waiting to get better.

It is not easy but it is part of this terrible and cruel illness.

Best wishes to you and yours

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."

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.

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.

"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.

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?

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.

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.

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

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..

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.

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

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.

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.

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.

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.

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!

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

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.

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.