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Mum doesn't know who I am

taliahad

Registered User
Nov 22, 2021
66
0
Hi, I share the care of my mother who has mixed dementia with my brother, we do three month shifts each, this has been going on for a year since my dad died. We're now at the stage where mum doesn't know who anyone is, not me, not my husband or any of her grandchildren. I wonder what goes on in her mind, she knows we are all familiar and safe but she doesn't know any of our names. She never talks about anyone and she doesn't seem to miss dad or my brother when he's away. I find it very strange that I'm in her house, doing everything for her and yet she doesn't really understand who I am.
 

Belgrave28

Registered User
Apr 16, 2022
11
0
It is hard when they don’t know you my husband got up one morning and told everyone that I left him so he still doesn’t know me thinks I’m someone in to look after him though he keeps trying to put me out of the house funny thing is he knows some of my friends can’t understand why they come to see me when they came to see her I always thought I would have been the last person he Would forget sometimes he knows our daughters and other times he doesn’t we have been married for over 40 years it makes things hard because he doesn’t know me
 

Lemondrizzle

Registered User
Aug 26, 2018
225
0
My MIL eventually didn't know who I was but fortunately always recognised me as someone safe. She broke my heart the day she asked me if she had ever been married as that had been the be all and end all of her life. However, she didn't remember her husband so never grieved for him and was impervious to the news that her sister had died (not my decision to tell her in the first place).
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,141
0
71
Dundee
I understand how you feel @taliahad.

My mum used to ask where Isobel was. I used to say “I’m here, I’m isobel’. She’d reply - yes but you’re not my Isobel. I found that really really hard.

Towards the end I knew my husband didn’t know exactly who I was but I always felt he knew that I was someone important to him and someone who cared for him and loved him. I held that in my heart.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,448
0
Yorkshire
My theory is that our folk do have an implicit understanding of us as people they care about and who care about them, though they may not recognise or name the human Infront of them: feeling over 'reasoning'

It may be that they retain some memory of a child but as a child or partner as the partner of their youth, so the 'image' no longer fits the mature adult but the 'vibe' is of 'family' .... and why eg a son may be mis-taken as husband
And there's the 'fact' that family are taken for granted so no need to work at keeping name or image, as we do with friends or acquaintances .... eg husband is husband no matter what he looks like so no need to look ... I remember my grandparents (no dementia) had so many grandchildren that at times they'd run through the names until they hit on the one that fitted but they knew all their grandchildren were theirs ... not explaining well
I think some connection is there, just not to be 'named' or defined

I was humbled that dad placed so much trust in me even though he may not at times have told my name or that I was his daughter ... we were still each other's at some deep level ... that was enough for me
 

DreamsAreReal

Registered User
Oct 17, 2015
425
0
I don't know if I've posted this before, but my mum didn't recognise my brother when he visited her and stayed for a few days (due to the pandemic, she hadn't seen him for over two years). But a couple of weeks after he'd gone home she said out of nowhere "isn't it awful? Bob was here and I didn't recognise him". So on some deep level, I think they do know who we are. Also, she wasn't afraid of him staying there, there's no way she'd have let a stranger stay.

@taliahad it does make you feel sad when it happens, though. 😢
 

doingmybest1

Registered User
Feb 28, 2017
8
0
Shedrech nailed it how I'm experiencing stuff with Mum these days and have been discussing this very issue amongst all of us who care for Mum.

It is a feature of Alzheimer's that they recognise you in some way but have lost touch with who you are but they know you are someone they can trust and you are a "safe" person.

My Mum has a family photo on her sideboard. She no longer can understand that the person in the picture is me. She keeps saying "that's <myname>". But has no ability anymore to realise that the person in the picture is the person standing in front of her. Yes, I've aged, and yes I've changed but it seems she can no longer relate to me in person as her brain can't compute.

I've been going round care homes, recently because I think we're now at the stage where we can't care for her anymore even though we have carers in 3 times a day.

The care home shared that if your Mum recognises you in the pictures with what she sees and knows in front of her is you, then she's middle stage alzheimer's. If she can't reconcile you with the pictures but still refers to you by name, she's late to middle stage.

If she looks at herself in the mirror and says "Who is that person?" then she's towards the end stage of middle Alzheimer's.

I've got 2 brothers (one just 5 minutes away) in addition to me who is 2 hours away. Agreement is that brother1 closest by, to when leaving work, drop in on Mum for 30 minutes chat and cup of tea Monday to Friday. I do 10 hours with her, on a Saturday do her cleaning, sorting stuff (feature of Alzheimer's), take her out (so she doesn't lose contact with outside world), do her washing, do her shopping with her (again me taking charge but so that she still knows what shopping is all about), make her food and so on. Brother2 does Sunday and does the same as me for the same period of time.

We've been telling brother1 for over 8 months now that she has no idea who we are but knows we are a "safe" person. Brother1 says -- "She knows exactly who I am, and it's because you don't see her regularly enough".

Brother1 had health issues and could not longer support Mum so we put carers in immediately to replace him at exactly the time he would have been there.

The result was that for a few days Mum would ask the carers - "Where is that man who used to be here?". She would sometimes ask me at the weekends "Why isn't that man seeing me?" But otherwise she just accepted that the carers going in were girls and that they were "safe".

Brother2 and I have accepted, as we did many months ago, that Mum has no idea of who we are. She knows we turn-up and look after her and sometimes get really angry etc and throws a hissy fit a bit like a 2 year old if we don't do things her way. Seems along with Alzheimer's is a bit of OCD.

It is a rubbish feature of Alzheimer's that they won't know you. It's hard to get your head around that but yes it is something you must if you want to protect your sanity. My brother2 and I talked about this all the time when we first realised this was happening. It hurt us both and we struggled to come to terms with it. In the end we both agreed that we are caring for someone who has no idea of who we are . Because we love her and she is our mother we need to take care of her and do the best for her but we're not qualified to deal with someone with Alzheimer's.

We've contacted her GP, Social Services and memory clinic and we've been told that basically - we're on our own. It's great that Alzherimer's UK provide this forum.

Azheimer's is a rubbish disease that seems to not be recognised by govt or have in place anything to support those of us going through caring for loved ones with this disease.

But the fact that you've asked this question and have already realised to some extent recognise that she no longer knows you and have reached out to this forum is brilliant. We can't give you positive answers but we can share experience and it's horrible to realise where things are at but it's fantastic that you've reached out and hopefully have a bit more information to help you and please realise that when caring for someone with Alzheimer's is hard on you, and please do take care of yourself.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,394
0
High Peak
I think before our loved ones lose who we are altogether, there is a 'muddled' stage where they see someone they know but can't work out why they are familiar. And even when my mum 'denied' me, the way she behaved towards me, the reaction she showed on first seeing me, told me that she still recognised me on some level.

As time went on she explained clearly to me that I couldn't be her daughter because I was far too old. (Thanks mum!) This showed her own regression to earlier times and also the idea that when she thought of her daughter, the image in her mind was of a much younger person. But her confusion was never simple or easily explained! She might introduce me (needlessly!) to a carer saying, 'Ths is my daughter...' then a few minutes later say, 'I know you're my daughter but I'm not your mother!' Erm, OK...

This continued and sometimes she would think I was her cousin or her sister. (Strange as she was an only child!) I stopped calling her Mum as it started confusing her and used her name instead.

Yes, it is hard to get your head round.
 

taliahad

Registered User
Nov 22, 2021
66
0
Thank you for all your lovely replies. It is a big comfort to know that I'm not alone on this dreadful journey. I hate dementia, I really think that it should be a priority of the government to deal with this issue because I dread the thought of how things will be in the future. I know my mum would not want to be as she is now, there is no pleasure in life, no quality time, there is just boredom and anxiety. What a way to live. It's not even life, it's existence.
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
My wife knew me on Sunday but Monday morning she didn’t. Told me not to touch “his “ clothes. And then we went several times to the hospital looking for “ her husband”. You can imagine her distress and you can appreciate mine.

To walk next my wife who refuses to acknowledge I’m her husband and I’m shouting across the car park “ I’m here, why don’t you know me” as we walk to a clinic and she asks reception “have you seen my husband?”
By the time we got home I’m almost having a nervous breakdown.
Non recognition is bizarre and scary