How can a PWD remember to want to go home?

Toopie28

Registered User
Jun 7, 2022
342
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I've read this countless times on this site as well as experience it myself every-single-time I speak to Ma.

How on earth can a person with dementia remember to want to go home every day when everything else is mush.
I know every person is different but this seems to be a constant. I know that "home" could be anywhere but again, every day.

From the day I abandoned her (her words) in the carehome and left her without money (again, Ma) - every single day to every person she meets, she will demand to go home and tell them to tell me.

As I video called her yesterday and tried to change the subject 7 times, I kinda admired her resilience in remembering to want to go home. I mean, I'm exhausted don't get me wrong but my goodness, nearly 5 months later and nonstop.

Is it routine now? I know that's very important and always tried to keep that going. Does that mean that somehow you can re-learn something if you make it a routine every day for people who have dementia?
 

doingmybest1

Registered User
Feb 28, 2017
41
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Toppie28 sorry to say this is normal and it will continue until the point at which your Ma will no longer have recognition of her present, or perhaps even her past and does she actually know what she's saying to you and does it really have meaning?

My Mum went to a care home September 2022, but before she left her flat, she was always saying to me "where am I going, can I come home with you?".

Every day I visit her in her care home, she always tells me "I hate it ... take me home!".

And when I take her out of the care home she always says "Where are we going ... where do I have to go now Mum?". I'm her daughter, but I always take her out of the care home each weekend, because I think it's important that she gets out and about. But as her Dementia has progressed, and she no longer really knows who I am so whilst she's happy to go with me and we go out shopping and for coffee at M&S, she's no longer sure who she is with.

But for that brief moment in time, she's out there and back in the "world" and loves looking at what other people are doing whilst we have our coffee and share half a cake.

I take her back to the care home, and she wants to be back there because that's where she is most secure, but she'll always say to me "I want to come back home with you ... I hate it here".

My brother and I visited over 26 care homes before deciding where to place Mum. And we came across this issue with many care homes and residents saying to us "I want to go home .. this isn't my home".

Initially we thought it was a care home issue ... that residents were saying this and not being given support, and then we finally realised that this is part of Dementia.

It hurts when Mum says this to us. We want to do best by her and when she says this, it hurts. We thought that perhaps we'd got the care home wrong, and we needed to move her to another care home.

But now we've realised, Mum always says this to us everytime we visit. When we visited all the other potential are homes, they all said, don't worry, our residents say this all the time, it's part of Dementia.

We both thought -- so what? Surely you should be more compassionate and do more care after all Mum is paying over £83K per year and possibly so are other residents?

And so we spent time watching at the care home ... and saw how much the staff cared for Mum and we learnt about sun-downing and all the other issues that Mum had.

The staff said, your Mum will aways want to go home with you because you are the family who care about her and she still knows that when she sees you. But the moment you are gone, she switches to "current life mode", and she forgets you and we takeover and she switches a gear.

Encouraged by the staff, I've watched Mum in her care home after I've left and she's said "I hate this place .. I want to come home with you" ..

She's been so happy after I've left, and the staff have completely engaged with her.

I know they are looking after her. I'm 68, I still have to work as I don't have much pension, I live 200 miles from Mum, but I drive to see her in my car that's over 30 years old, 2 times each week.

Mum has no idea who I am when I see her. She knows I'm someone friendly but that's about it.

She will always say when I leave " .. I want to go home ..." and then when I say where is home Mum? She'll says "I want to go home with you ...".

My Mum looked after my Dad's family when they were old. Although she had 5 kids to bring up, we accepted Dad's family being in our house. Mum looked after all of Dad's mum, dad, aunts and said " .. when I'm old, don't you dare spend your time on me! Put me in a nice care home and leave me there!".

We've put Mum in a nice care home. But we've not left her there ... we just can't. But what happened with all of Dad's family was they were all good. They were physically struglling but mentally they were all good. So Mum looked after them all when they needed to be looked after physically. And with her care, and still at home with us, they lived until their late 90s, dying of heart failure.

I don't understand why Mum has a scrambled brain. She's never smoked, drunk alchol, she's aways exercisied, she's been a clean food person from day one and always made food from scratch.

It's very hard to understand what this disease is all about.

We can support our loved ones, we can care about them, and yes, we can appreciate they feel we have disowned them for that moment in time, but they then move on. But we don't, it lingers in our brain for ages afterwards as we question ourselves.

All the best to you looking after loved ones as this is just my experience and perspective.
 

Jale

Registered User
Jul 9, 2018
1,195
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Mum has never mentioned going home (thankfully), but when questioned by DOLS people they always ask where she lived before going into the home. Mum's answer was London. Mum was born in London but came to the midlands during the war when she was 7. She cannot remember the homes she had with my dad and later us (son and daughter). Sadly that has all gone.

I don't think that a PWD can relearn things, but who knows why some information is retained and something else isn't - that is what makes this illness so cruel not only to the PWD but also the families.
 

Calon Lan

Registered User
May 21, 2024
64
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Hi @Toopie28

it must be very difficult when you call your mum and she repeatedly asks to go home. It’s so hard to manage this type of problem. It’s really only distraction, diversion or delay which can sometimes help.

My mum has wanted to go home for at least three years. This first began when she was living in her own home, a house where she lived for about 60 years. She wanted to go home to her childhood home. She has lived in a nursing home for just over a year and still wants to go home to her childhood home.

I think I know what you mean, how can someone be so persistent and tenacious about going home when their memory about everything else is failing so badly? Its difficult to know, but I don’t think my mum is remembering she wants to go home - at least not in the way that you or I would understand remembering. It’s more that she is driven to try to go home by a fundamental change in her thinking caused by dementia. It’s almost as if she has a script that is activated when she suffers even a minor setback. The script is also triggered when she is sundowning. I think “home” for my mum is a place of safety where she is not distressed and unwell.

That’s a lot of guesswork from me and probably not a lot of help! Dementia is such a difficult and distressing illness for both sufferer and carers. Its no wonder you feel exhausted.

Sending thoughts and best wishes.
 

cymbid

Registered User
Jan 3, 2024
160
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my mum asks often about her childhood home. Do I have the keys? Does her son live there? She knows the names of all the old neighbours etc . She left there over 70 years ago, I showed her a google street map walk around her present house (65 years) She didnt recognise it . "No, dont know that place " she said. However if I ask her address she can come up with it . A bit like rattling off her date of birth.
 

Toopie28

Registered User
Jun 7, 2022
342
0
Hi @Toopie28

it must be very difficult when you call your mum and she repeatedly asks to go home. It’s so hard to manage this type of problem. It’s really only distraction, diversion or delay which can sometimes help.

My mum has wanted to go home for at least three years. This first began when she was living in her own home, a house where she lived for about 60 years. She wanted to go home to her childhood home. She has lived in a nursing home for just over a year and still wants to go home to her childhood home.

I think I know what you mean, how can someone be so persistent and tenacious about going home when their memory about everything else is failing so badly? Its difficult to know, but I don’t think my mum is remembering she wants to go home - at least not in the way that you or I would understand remembering. It’s more that she is driven to try to go home by a fundamental change in her thinking caused by dementia. It’s almost as if she has a script that is activated when she suffers even a minor setback. The script is also triggered when she is sundowning. I think “home” for my mum is a place of safety where she is not distressed and unwell.

That’s a lot of guesswork from me and probably not a lot of help! Dementia is such a difficult and distressing illness for both sufferer and carers. Its no wonder you feel exhausted.

Sending thoughts and best wishes.
It is a lot of help! Thank you. Every single response is.

I think you're right - like a script that's been activated. Every time there is a setback - every time she sees me (since I signify home to her).

I need to stop trying to figure out this disease and just try and survive it like we're all doing.
 

helpingpeggy

Registered User
Aug 6, 2019
81
0
Hi @Toopie28
I’ve just got home after a visit to my mum in a care home. She’s been there for 6 months and continues to ask to move out. It’s very difficult to deal with…and to know that she’s upset and confused about where she is on a daily basis. We’ve asked for a review by the mental health team to see if they can help and also the care home are arranging more 1:1 time with a carer who can help to distract/divert/reassure and take her out. I find this the hardest thing to deal with.
 

Toopie28

Registered User
Jun 7, 2022
342
0
Hi @Toopie28
I’ve just got home after a visit to my mum in a care home. She’s been there for 6 months and continues to ask to move out. It’s very difficult to deal with…and to know that she’s upset and confused about where she is on a daily basis. We’ve asked for a review by the mental health team to see if they can help and also the care home are arranging more 1:1 time with a carer who can help to distract/divert/reassure and take her out. I find this the hardest thing to deal with.
I'm so, so sorry. It takes it's toll, doesn't it?
I do think back to when she was at home and it was exactly the same - unhappy I mean.
And I do think it's mainly the dementia. Just the disease that effects them as well as the caregivers (us!)

Again today, when I spoke to Ma and got the shaky voice and "when are you picking me up". She then got upset and started saying I didn't care about her and wanted her to rot there. She's savvy enough to whisper this so only I hear (even though she is speaking Italian, doesn't realise it and the carers don't understand anyway).

I hope the mental health team and more time with a carer can help. Let us know please.
Sending hugs 🤗
 

helpingpeggy

Registered User
Aug 6, 2019
81
0
Thank you Toopie28. This forum is such a great support. I’m sorry your Ma wasn’t so good today either. Hugs all round 🤗
 

maisiecat

Registered User
Oct 12, 2023
445
0
Hi @Toople28, I think this "going home" is one of the most difficult thing we all face because we feel responsible for their situation. My husband is in a Nursing Home for dementia and is relatively young at 75 but is "medically complicated".
I always try to move the conversation to "when the dr's think you are better" so its not "my fault" but the truth is of course its not our fault.
We take a very difficult decision to keep our loved ones safe.It is painful,costly and if you contact frequently very time consuming.
My husband's conditions is variable but as soon as he is aggressive about playing golf (hasn't played for years) or he complains about looking after the chickens (we never had chickens but its a common hallucination) I know I'm in trouble and I try to keep the visit active and distracting to him.
 

Alisongs

Registered User
May 17, 2024
709
0
The past is another country, they do things differently there..... Going home, if you're a dementia victim, usually means returning to a place where you felt safe, happy, loved, young and fit. The process of losing memory means that newer, less ingrained memories disappear first. Your oldest memories, that you've thought about many times, even fleetingly, over the years, are deeply embedded and take more time to erase. You may be able to reassure your loved one by putting together albums of pictures (from the Internet)postcards, photos, souvenirs etc of places and events mum has known and loved, and discuss them, so you can add notes of her comments. Add in some pictures of where she is now and note down any positive comments, such as food or particular carers . Reinforce the good past, use it as a distraction here and now. Mum can revisit the past any time she wants, and discuss it with carers, family and friends
 

Angel55

Registered User
Oct 23, 2023
218
0
How on earth can a person with dementia remember to want to go home every day when everything else is mush.
I know every person is different but this seems to be a constant. I know that "home" could be anywhere but again, every day.

From the day I abandoned her (her words) in the carehome and left her without money (again, Ma) - every single day to every person she meets, she will demand to go home and tell them to tell me.

As I video called her yesterday and tried to change the subject 7 times, I kinda admired her resilience in remembering to want to go home. I mean, I'm exhausted don't get me wrong but my goodness, nearly 5 months later and nonstop.

Is it routine now? I know that's very important and always tried to keep that going. Does that mean that somehow you can re-learn something if you make it a routine every day for people who have dementia?
💗 It is very common as you probably have read on the forum.

I think home is a safe space, familiar and away from the muddle in someone's minds that really is a whole lot of anxiety, fear, frustration and probably feels all mixed up with emotions that are now just out there . It seems exhausting to be in that mind and not just for us. A mind can be incredibly strong when backed with the emotions that come with the illness too.

I said once just out of sheer tiredness... you know I don't know Dad, he looked at me , I don't know what to do Dad about this do you? He shook he is head and said no I don't know either but it needs sorting, I agreed and said I had no clue and we were in a bit of a pickle with it all really. He sighed and said we certainly are and that was it he stopped. The only things we get now are asking for odd things from the house which randomly pop up and if he gets anxious he starts saying he wants to move into a flat but not home anymore not in the way it used to be said.

I feel that phases come and phases go, then the same phase may crop up again and then disappear and whilst I sometimes try and logically work this disease out I generally try not too anymore. 💗

Look after yourself xx