Mum doesn't know me anymore

[Amber]

Well, I knew it would happen eventually and thought I was prepared but today when visiting my mum at her care home she turned to me and said 'sorry, who are you? I don't know who you are' There have been times when she hasn't remembered my name or I have seen in her eyes that she is searching her memory to remember who I was but today when I arrived I saw her stumbling with her walker up the hallway ahead of me, I called to her but she didn't hear and walked into another residents room and sat down on the bed, I went in and said hello mum! and kissed her and she was all smiles, I helped her walk to the tv room with me and sat her down, turned on the tv and went back to sit with her and that's when she said it, it stopped me in my tracks and I just wanted to cuddle her up and say it's me! your daughter! but I just said my name and she said oh! and then she focused on the tv telling me a man (Philip Schofield) was talking to me and shouldn't I answer him (!). I feel as though I have lost her now, all the time she has recognised me, even though she has been in a care home for the last year and isn't able to be in my every day life, I have still felt connected to her but today I feel as though it's a new phase. Mum is late stage vascular dementia so only end stage to go and I know that's where she's heading now. I miss her so much.

 

[Francine]

Hello Amber

Oh how upsetting that must have been for you.

When my poor Mum was alive, latterly she used to get me muddled up with her mother and started calling call me 'Mam', and hardly ever my own name, so I think she must have forgotten who I was. I don't think it really mattered, as I know she knew I was the person who loved her and cared for her so at the end of the day I told myself that was all that mattered.

So what I'm trying to say is that your Mum although she may not know who you are sometimes, will know that you love her and are concerned about her - so still carry on giving her hugs and cuddles! The fact her face lit up when you sat with her shows that she was glad to see you and that she still loves you. I do know it is hard, and can be so upsetting.

Take care

Francine

 

[angecmc]

So sorry Amber, it is so hard, my Mum only knows us as "her people" now very hard sending you hugs(()) xx

Ange

 

[turbo]

Hello Amber, I am sad for you because I dread this happening with my mum.


turbo

 

[kingmidas1962]

This is so incredibly hard .. losing someone before they've actually gone. I don't know if my dad knows who I am or not, any more. I get a faint smile when I see him but he forgot how to speak a long time ago.

I think, if I could, I'd try to take comfort in the fact that she is happy to see you as I know so many dementia carers have different experiences. You really do have a connection to her still - she may or may not know who you are (and that may change) but in there somewhere is the information that you are important to her, and that comes out in the way she communicates with you. I'm sorry if that sounds absolutely useless.

 

[Amber]

Thank you everyone for your kind comments, it really helps knowing there is so many of us going through the same thing.
Kingmidas 1962 - you say that your Dad forgot how to speak a long time ago, does he have vascular dementia? My mum has had that form for 9 years now, she can barely walk, can barely see and is doubly incontinent, she cannot cut her food or spread butter etc and has lost lots and lots of weight, I know the next stage is either forgetting how to speak or swallow and wondered if your Dad had these problems prior to him not being able to speak?
x

 

[thats life]

yes it is so sad, my mother always recognises me but doesnt know that im her daughter, I have said to her do you know May, my sister "no" well what about, tell her my name "no but i think know the name",

 

[kingmidas1962]

Thank you everyone for your kind comments, it really helps knowing there is so many of us going through the same thing.
Kingmidas 1962 - you say that your Dad forgot how to speak a long time ago, does he have vascular dementia? My mum has had that for for 9 years now, she can barely walk, can barely see and is doubly incontinent, she cannot cut her food or spread butter etc and has lost lots and lots of weight, I know the next stage is either forgetting how to speak or swallow and wondered if your Dad had these problems prior to him not being able to speak?
x

Well, dad diagnosis is Picks disease, but I have often wondered if its vascular instead / as well. The reason for this is that before his condition worsened considerably he had a couple of 'episodes' that were deemed fainting, at the time, as his blood pressure was very low - but its possible that they were TIAs which could have precipitated vascular dementia ....

...anyway, enough of my amateur diagnosis! ... dads mobility is poor - he can't walk at all unassisted now, and has been doubly incontinent for a while but sometimes that's because he either can't express that he needs the loo or cant make it in time anyway. He has never worked out how to use his call button but his room is next to the nurses station and they listen out for his every move so if he tries to get up they hear his walking frame scraping on the carpet and they're in there like a shot in case he falls!

His speech was almost the first thing to be noticeably poor. We do get a 'yes' or 'no' occasionally but after much prompting and his voice is so quiet now - barely a whisper.

He has lost masses of weight but it has stabilised at the moment. His appetite is good however, he eats a full cooked breakfast every day plus two other smaller meals and always eats the biscuits he has with his cup of tea.

He doesn't read any more either, that stopped about 18 months ago, although when I go and see him every week I take the paper in but I read it with him and help him turn the pages as he's not reading it - but its like he enjoys the feeling of 'doing' it.

If that all sounds a bit grim, I don't mean it to - he is very placid and seems content. Has always been very quiet man so there's no inherent change in his personality.

The staff at the care home LOVE him - in particular a giant of a male nurse who seems really to have taken him under his wing.

Sorry for waffling! I didn't want to hijack your thread xxxxxxxxxxxx

 

[Vesnina]

Just while ago my mother yelled my name because the other me did not answer.
I am here, I say.
Yes, I know, but the other one does not answer.

Two days ago late in the evening she had no idea who I was,
even my name had no importance to her.
In the morning she knew "everything" again. Me, all the past etc.

I am laughing on all this, but my heart literaly aches.

 

[2jays]

Today I visited mum

She looked up when I came in the room, then continued with what they were doing with the activities of the day.
She was busy, so I went to get myself a coffee.

A carer said hello to me and I replied. Mum looked up, tried to look past me, and said, "I can hear 2jays, where is she"

I laughed and said "I'm hiding"

She laughed and said "yes in that old womans body"

She is beginning to not recognise me, because I don't look like the 2jays she remembers when she thinks of me

so far, she recognises my voice still and can then put the "old woman" she sees and my voice together and then see me.

 

[CollegeGirl]

I'm so sorry, Amber, this is really upsetting, isn't it?

My mam doesn't realise who I am, lately. Yet when she's at home, she apparently searches for me, asking dad "Where's our CollegeGirl?" I think she's looking for me as a child. She can't relate that child to the 48 year old woman that I am now. It's so sad. She's loved me all my life and now she doesn't know me. How horrible that must be for her. How puzzled and confused she must be.

This is truly a horrible illness.

 

[Bramble68]

My heart aches when reading these posts, my grandma got to this point and I dread the day when mum does, too. She has always been such a calm, stable woman throughout our lives, no drama, always there for us, so the prospect of her not knowing her children will be like a knife in the heart. Hugs to you all!

 

[Wildflower]

Feel sad for you Amber, it's upsetting and I found it to be a huge loss when my dad first failed to recognise me as his daughter. He thinks I'm all different people now and sometimes 'The man in charge' (I don't look like a man) I've tried explaining who I am but he doesn't believe me, but he thinks I am 'Very nice' Yesterday he said he wished I was his daughter. I have come to terms with it now, but I think it is a bit like a bereavement. Thinking of you.

 

[retiredcopper]

I also feel sad for you too Amber. Although she's not my mum I have known my MIL for 30 years & I've cared for her since she was diagnosed 4 years ago. She hasn't known my name for a while now - if anyone asks her who I am she says 'She's my one & only' or 'She's my angel'. One day she shouted for me when I went out of the room but she shouted the name of one of her carers (who had cared for her for 3 years) - that upset me more than anything. The other day she asked me 'How long have you worked here?'

However, as Kassy mentioned, MIL may not know my name but she always tells me I have a beautiful face & she always makes me to promise I won't forget to come back so she knows I love her. What is harder is that she doesn't know my husband much now (her only son) - she either confuses him with her late husband or thinks he's a workman which really upsets him. If I feel upset as her DIL how bad must my hubby feel as her only son? I try to explain & comfort him but I know it hurts him so much so I know how you must feel Amber

This disease is so cruel & all we can do is smile through our hurt when our loved ones don't recognise us & hug them whenever we can.

Regards
Angie

 

[Nanak]

Out of myself my sister and brother, it was me that Mum didn't recognise first. Understandable as I live overseas and only saw her once or twice a year.
She always seemed to know my face but didn't realise I was her daughter. She couldn't remember my name.
I found the hardest thing though was when she introduced my sister to her (Mums) reflection in the mirror. That upset me more I think.

Kim

 

[sunray]

Mum hardly said my name for the last three years of her life but once when asked who I was by her carer said: "It's HER!" with a big smile on her face. That was about two years before she died. Someone asked me why I went to see her so often. I said: "She might not know me but I love her." and that has to be the answer.

I am not saying it is not hard I am saying somehow it is doable.

Sue.

 

[Pigeon11]

This is so painful isn't it? I really feel for all of you that are going through this stage. This terrible illness has some very tragic moments and I think this was the worst moment of all for me.

It's been a number of years since my dad recognised me or anyone else for that matter. In fact he has been oblivious to others or his surroundings for about 4 years now. I think I could just about bear it when he didn't recognise me but was pleased to see me just the same; but later he started to get hostile and would turn from me or push me away if I tried to hug him or hold his hand. Unfortunately he's stayed at this phase and even now in his advanced stage seems to resent any kind of interaction at all.

I try to console myself that at least if he's forgotten everyone, he has no awareness of his condition and probably isn't upset or scared (as he was when he still had insight).

Here's a big hug from me for all of you, as I don't know what else to do to help (((()))))

 

[Wildflower]

The one small consolation that has come out of dad not knowing who I am any more was when he went into his first week of respite recently, and I didn't have to worry about him missing me any more.

 

[Vesnina]

... Yesterday he said he wished I was his daughter. ...

Excuse me, please, but this is very nice for me.
He likes you in any case.

The one small consolation that has come out of dad not knowing who I am any more was when he went into his first week of respite recently, and I didn't have to worry about him missing me any more.

And this is such a beautiful thought.

 

[Wildflower]

Thank you Vesnina x