What's the best approach?

[beeves]

My mum has had Alzheimers for nearly 15 years - she's over 90 now and in a CH. A few months ago she stopped recognising me and my two siblings. She gets very confused when I mention I am her daughter and repeatedly says 'How do you know you're my daughter?', 'It CAN'T be'. When I saw her this week, I was particularly upset and wasn't able to stay with her for long (even thought I'd driven over 3 hours to see her).
I'm now wondering if it's best to pretend I am just another carer or a friend? The most I can do now is give her a few hugs and kisses, which always go down well. Any thoughts?

 

[love.dad.but..]

Dad got agitated if I said I was his daughter so I became quite vague...he never asked me who I was and probably thought I was a carer or someone who lived in his NH. I had the impression though that he knew I was someone important to his life. If your mum doesn't bring up the subject then just don't mention it yourself. If she isn't agitated by the thought that you are a carer or another resident then let her think that and try not to upset yourself it is such a common stage in the decline. She is still happy to give you hugs so like my dad maybe knows deep inside that you are important to her but she just can't recall who or why

 

[canary]

Hello @beeves and welcome to Talking Point.

My mum knew she knew me right up till the end - her face would light up when she saw me, but she often couldnt remember my name and relationships were difficult for her.
I found I could quite cheerfully answer to being her friend, sister, aunt or mother - whoever she thought I was, thats who I was. It was strange really because I always called her "mum", but she didnt seem to realise that this meant I was her daughter

 

[Distressed55]

It's a bit hit and miss with my dad. Sometimes I think he knows me, sometimes he calls me by my name, sometimes he's somewhere else. So basically, I just greet him with a bright hello and hold his hand, and let him guide things. It can be incredibly upsetting, but then it's not his choice to have this hideous disease. My sole reason for visiting is to hope that it brings him some comfort, and not to upset or agitate, although that is occasionally unavoidable.

So I wouldn't tell her who you are if she finds it distressing, There is no easy solution to this. But I think a loving lie is the way to go.

 

[KathrynAnne]

My Mum sometimes knows me but other times looks me straight in the face and asks me where Kathryn is. I used to say I’m Kathryn but this often made her embarrassed or she just wouldn’t believe me. So now I just go with her. If she knows me that’s great. If she asks where I am, and obviously doesn’t know me, I say she’ll be here soon and she’s fine. I treat it similarly to the love lies I use when Mum asks for deceased relatives.

 

[beeves]

Thanks all. And yes, love.dad.but, I do think somewhere deep down she knows I am someone important to her. At least, it makes me feel better to think that!

 

[Angela57]

I became a nice lady with my dad. At that point he still knew who my mum was, and he was always telling mum that I was a nice lady when we visited together. I just went with it, even though it was upsetting. Like canary, I still called him dad when we were conversing (not that they made any sense), but it never registered with him. It's hard to deal with at first, but it does feel less upsetting as time goes on.

 

[Fullticket]

Dad and I were the 'doers' in our family, so after dad died I became the go to person for mum to sort out all the muddles she got herself into. After the dementia I was recognised as the person who sorted things out and occasionally 'she who must be obeyed.' Sometimes she called me by my name and sometimes I was her best friend Jean, sometimes a long dead friend called Rene, sometimes I was Helen (never did find out who she was). But in all mum did greet me as a friend and someone she obviously felt at ease with. Difficult at first but as the disease progressed it became a way of life and, yes, I always called her mum and she never questioned it even though she would reply to Jean or Rene or Helen.

 

[karaokePete]

Thanks all. And yes, love.dad.but, I do think somewhere deep down she knows I am someone important to her. At least, it makes me feel better to think that!

Hello @beeves, welcome to TP from me too.

Even after a person reaches the stage where names/relationships are lost due to cognitive decline the emotions remain intact. This is why we are told to seek the feelings behind the behaviour when people get agitated or start asking about long dead parents or their childhood home etc.

I think it is safe to think that under the symptoms of her dementia your mum can still feel the love of your relationship, even though she may not have the cognitive skills to put a name to it. Don't test her, and annoy both of you, by asking for recognition that she can't provide, just be happy in the knowledge that she does feel you still.

 

[Grannie G]

My husband never asked who I was nor did I ever ask if he knew who I was. It saved him being put on the spot and saved me from upset. It was enough he greeted me with a smile, even if it was the same smile he gave all the carers.

 

[Bunpoots]

I'm not sure my dad knows who I am anymore. And I'm not going to ask him either @Grannie G

 

[Grannie G]

I'm not sure my dad knows who I am anymore. And I'm not going to ask him either @Grannie G

As I've said so many times before @Bunpoots, you know who he is and that's all that matters.


I've seen so many visitors in care homes arriving with a wad of photos and testing the person with dementia, asking them to name people. Its heartbreaking.

 

[love.dad.but..]

I always remember reading something poignant very early into my caring...

Please do not forget me when I can no longer remember you

I always kept that thought when I visited dad on the good days and the bad and it helped me to remind myself of why I was doing what I was doing...even when he told me to .... off

 

[Distressed55]

I always remember reading something poignant very early into my caring...

Please do not forget me when I can no longer remember you

I always kept that thought when I visited dad on the good days and the bad and it helped me to remind myself of why I was doing what I was doing...even when he told me to .... off

That's reduced me to a snivelling wreck! And it pretty much sums up my view. I remember. And I won't forget the way that the rest of his family have treated him, either.

 

[love.dad.but..]

That's reduced me to a snivelling wreck! And it pretty much sums up my view. I remember. And I won't forget the way that the rest of his family have treated him, either.

Oh I am sorry I didn't mean for that to happen. I too always felt it was a shame my 2 fairly invisible sisters hardly visited dad in his NH only every 3/4 months because 'they drove 3 hours and it was a waste of time'. We are all different I suppose. 18 months since dad passed away I am proud to say I stepped up totally when he needed me and never did forget him then or even now.

 

[Distressed55]

Oh I am sorry I didn't mean for that to happen. I too always felt it was a shame my 2 fairly invisible sisters hardly visited dad in his NH only every 3/4 months because 'they drove 3 hours and it was a waste of time'. We are all different I suppose. 18 months since dad passed away I am proud to say I stepped up totally when he needed me and never did forget him then or even now.

No, don't worry, I am quite an emotional person, and this morning I am particularly sensitive. It was a lovely thing that your dad said, poignant and bittersweet. I find that I am doing the same with my dad. My two siblings live just minutes away from me but never go to see him, so I go to see him every day. He has no concept of time, but I do. They are however, very interested in his money (not that not he has much of that, but it's more than they have). When this is all over, I will be able to look at myself in the mirror and know that I behaved decently, just as you did.

 

[love.dad.but..]

No, don't worry, I am quite an emotional person, and this morning I am particularly sensitive. It was a lovely thing that your dad said, poignant and bittersweet. I find that I am doing the same with my dad. My two siblings live just minutes away from me but never go to see him, so I go to see him every day. He has no concept of time, but I do. They are however, very interested in his money (not that not he has much of that, but it's more than they have). When this is all over, I will be able to look at myself in the mirror and know that I behaved decently, just as you did.

It wasn't my dad who said it..I had read it somewhere..dad drifted into dementia without realising he had it although no doubt he knew something wasn't right. He was only formally diagnosed after mum died suddenly at home and we found her on her birthday and dad confused sitting in his car but he was already in moderate stage by then. That was what I always said..if I could look myself in the mirror afterwards knowing that I took the tough decisions when needed for dad..that I did everything I could and more...then I would have no regrets. I visited every other day and at end of life I was of course sad but for dad rather than myself that demebtia had cheated him out of his final years...however I also had peace of mind that I did my very best for dad at every stage and right through to the end. You will feel the same and that when the time comes will give you comfort. Oh...and I have blubbed to all sorts of people during my caring years...bank official..kind random person on a train...opticians for dad...you get the picture you too know you cannot do anymore to help your dear dad than you are doing...sadly the sibling invisibles are a common theme on TP

 

[Witzend]

My mother stopped knowing who I was quite suddenly. One week her eyes would light up when she saw me coming, the next they were just blank. It was upsetting at first, but it was no use trying to explain. Occasionally she would think I was her sister - the one who'd been dead for some years and who she'd never really got on with anyway! though she did seem to have forgotten that aspect.

Mostly, though, I was just a 'nice lady' who made her cups of tea and brought her chocolate.

What did surprise me in the circs, and in the nicest possible way, was that she did really seem to 'know' my younger sister who,lives in the US and could only visit once a year, if that. She didn't know her name, or that she was her daughter, but she definitely knew she knew her - if you know what I mean - and was pleased to see her.
Given that I'd told my sister that she almost certainly wouldn't recognise her, it was lovely - esp. since it was the last time my sister saw her before she died.

 

[Distressed55]

It wasn't my dad who said it..I had read it somewhere..dad drifted into dementia without realising he had it although no doubt he knew something wasn't right. He was only formally diagnosed after mum died suddenly at home and we found her on her birthday and dad confused sitting in his car but he was already in moderate stage by then. That was what I always said..if I could look myself in the mirror afterwards knowing that I took the tough decisions when needed for dad..that I did everything I could and more...then I would have no regrets. I visited every other day and at end of life I was of course sad but for dad rather than myself that demebtia had cheated him out of his final years...however I also had peace of mind that I did my very best for dad at every stage and right through to the end. You will feel the same and that when the time comes will give you comfort. Oh...and I have blubbed to all sorts of people during my caring years...bank official..kind random person on a train...opticians for dad...you get the picture you too know you cannot do anymore to help your dear dad than you are doing...sadly the sibling invisibles are a common theme on TP

You blub at inappropriate times too? Oh I thought it was just me!!!

I've cried in front of pretty much everyone at work (which surprised them, I was thought of as a hard case), at the hairdressers (she asked me how I was), the nice guy on the phone at the Open University when I told him I was having to suspend my degree study, every single carer that I got for my dad whilst he was in his own home, every single carer at the home where dad now is living, my next door neighbours, every friend I have. I cannot stop. It's easier if people tell me to pull myself together. Sympathy just opens the floodgates!

 

[Izzy]

Oh @Distressed55 - you describe me to a T!

I was just like that as a carer and I am just like that as a widow (oh I dislike that word). Just please don't be nice to me!