For a long time now I’ve been worried about my mother forgetting who I am as her dementia progresses. She’s been living with dementia since 2012. There are several types of dementia that cause memory loss, it’s most common with Alzheimer’s, mum’s form of dementia.
Previously, mum knew who I was the majority of the day but forgot me during the evening. Now that has progressed to her not recognising me at all. She becomes more forgetful the more anxious she is. The situation has worsened thanks to Coronavirus self-isolation.
Being forgotten is such a small thing compared to all the daily issues I have caring for my mother. I do all her personal care, meds, meals, cleaning, and more importantly, I’m her companion. She constantly needs company, reassuring, & engagement to distract when anxiety or fear comes calling. Which they do more and more frequently!
Initially, it started with small changes, mum mistakenly calling me by my sister’s name. Then she tried to cover it by using affectionate terms like “sister”. It was always heart breaking seeing the relief in her eyes when she thought she knew me but called me by a different name. It’s such a shock when that first happens, sadness & grief hit you, you realise your mum doesn’t know you. You know it will happen one day, but nothing prepares you for it. You say stupid things like…
Mam, it’s me your daughter, don’t you remember me?
That’s always a killer, saying “don’t you remember me” – of course, she doesn’t, she has dementia. It’s surprising how many times I do things like that. I should know better but it just comes out without thinking sometimes. A tip I picked up from a Twitter user was to introduce yourself before mum started to struggle. So now I do that but, I can’t just leave it there so I add…
Do you recognise me?
My mum is wonderful and smiles at me like I’m stupid and says…
Of course I recognise you, you’re my cousin……
So far I’ve been a cousin, aunty, sister-in-law, daughter of her sister, everything but her daughter. What’s worse is she remembers my brothers and sisters, and I get angry about that. Why remember them when I’m the one caring for you every day.
That sounds very selfish, but it makes me feel like she doesn’t care as much for me. I know that’s not true but it feels unintentionally hurtful. I just don’t want her to forget me.
It’s not only that I’m not her daughter, but it’s also that she is not my mother. Recently, that had negative consequences when I tried to get her to take her daily pills, and she refused saying….
Why are you trying to give me your mother’s pills?
They’re not mine.
I can’t take your mother’s pills, she’ll get ill without them, take them to her – I’m not ill!
That started a whole verbal pinball with me cajoling her to take them, which she did then sneakily she spat them out. I realised the error of my ways and gave up on trying to give her meds for the time being. She’ll normally eat them as long as I leave her for a while and present them to her later on.
There is a funny side sometimes, to being forgotten. Mum remembers that she has a daughter but it’s just not me. She worries about all her kids even though we’re all grown up, so she’ll say things like:-
Mum: I’m worried about Kat, she doesn’t know that I’m staying here tonight
Me: I’m Kat
Mum: Not you, the other Kat, my daughter!
Not a lot I can say to that!
I’ve learnt not to contradict. It doesn’t help and can cause anger (my mum’s favourite saying is “don’t be stupid, I know my daughter!”
For me, the key thing I have to remember is my mum knows she has a daughter. She knows my name, I know that she loves me. I’ve learned to accept it. I remind myself that the part of her brain that identifies my face to her has deteriorated. I get fleeting moments when she’ll remember me if I leave the room and come back in again. But most of the time she has forgotten me and I live with that.
So if you’re a carer experiencing this, and feeling guilt, sadness or not sure how to cope, know you’re not alone.
If your loved one doesn’t recognise you, it doesn’t necessarily mean they’ve forgotten you, they may not recognise that version of you, or just you on that day or they may just retain an emotional memory of you.
In the end, there will come a time they won’t recognise you at all, but just ask yourself – does it really matter?
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