• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Really missing who my mom used to be


Registered User
Nov 29, 2014
West Midlands
Im so sorry for being/sounding selfish and silly but im missing my mom, the person she used to be so much the last couple of days, i keep crying and i feel like im falling apart. I know im very lucky compared to some people, i do still have my mom here but its just so hard. My mom is in a care home, doesnt know who i am, most days shes not too good, crys a lot, gets aggitated quickly and sometimes a little bit aggressive. Saw her tuesday and she was having a really good day, very smiley and happy, it was so good to see but its just made me miss her even more. I really wish i could call her up and have a chat to her but my mom cant communicate much anymore. There is a lady in her care home who has just died from alzheimers, younger than my mom, it brings it home more what we're still more than likely going to go through. Im sorry for feeling sorry for myself.


Registered User
Oct 19, 2009
It's not silly or selfish at all, Jellymac. It's not just anticipatory grief, grieving for your mum now, before she has died, during the long, slow decline. You are grieving for the loss you have already suffered. You've lost the mum you could interact with, could go to with your daily doings, chat with, the mum who would and should be there for many years yet. The loss of those family times that you won't now have. There's nothing silly or selfish in grieving over these losses.


Registered User
May 30, 2017
Italy, Milan and Acqui Terme
Why shouldn't you feel sorry for feeling sorry for yourself?
Do only the others deserve empathy and compassion?

When people have dementia, we feel we have lost them (or at least a part of them), before they die.
A friend of mine used to say about his mother "the lights are on, but there is nobody in"
That image conveys the sense of emptiness we feel.
You are not selfish, only very,very sad
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Registered User
Oct 19, 2016
Completely understand how you feel, it's how I feel too. The losses are incremental aren't they? In recent months Mum has stopped using my name, I still think she knows who I am though as her eyes convey quite a lot of expression. I tell Mum I miss her. A friend of mine who's Mum also has AD said something which chimed with me about 'wishing she could have her Mum back, even just for a day', what a gift that would be, to be able to chat, reminisce, have a laugh, ask her more about her past ...?

The sadness I feel sometimes is so overwhelming, and I try to tell myself I'm lucky I still have her. Never anticipated I would lose my lovely Mum like this. I'm sure that's how many of us on TP feel.


Registered User
Apr 13, 2015
Don't apologise for grieving jellymac, it is so hard to watch loved ones deteriorate :( I always feel there is a bitter irony with dementia - Mum doesn't recognise her family anymore and when I see Mum, I don't recognise her as my mother as she has changed so much :(

Scouts girl

Registered User
Jan 18, 2017
Oh yes, just one day to have them back and be able to tell them how much you love them and that they can understand why you could no longer look after them and had to get the help needed and not wanted. Just one day to see my mum smile again, go out and have a nice lunch, and a good old gossip like we used to. Just one day to bring her back again to my house, sit in the garden and talk about all the happy memories we have shared for nearly 70 years and what a wonderful life she has given me.

But of course, not to be. I miss my mum terribly watching her deteriorate day to day. It is so overwhelming and you do feel you are experiencing a bereavement although the person is still here. Please don't feel selfish, you are grieving now, as LadyA says. It is a long and difficult journey we are going through and just hope that the journey will end peacefully. Lots of love xxx


Registered User
May 12, 2017
Hi I remember reading a posting on another thread where it was suggested that you write your loved one a letter, opening your heart to all that you feel. Obviously she will never read it but when you see her it may help you to feel you have had the conversation you so need & been able to unburden yourself. Also it's there to reread & add to as you wish.


Registered User
Nov 29, 2014
West Midlands
Thank you all so much, your kind words do help. Most days although it hurts i can deal with it but sometimes it just gets too much. Im 37 and my mom was diagnosed 6 years ago, i feel ive missed out on so much (please dont take me the wrong way because i know it doesnt matter what age it doesnt make it any easier, less devastating). I think of all the things i could be doing with my mom and now i cant, i just want to be able to chat to her and hear her tell me its ok. Moggymad thats a really good idea, thank you