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 email@example.com and we'll be happy to ask them on your behalf.
Don't beat yourself up about it! Saying things we wish we had not is a way in which we work out the anger and pain and come to terms with this nightmare. We have all done it.Why did I say such a crass thing
That is not the point actually. It obviously makes a difference to you. I feel much the same with Jan, but I go anyway, and quite often am rewarded by just a hint of recognition, or, as yesterday, a sentence of three words [almost unheard of now, and would have been missed - or never said if I had not visited]Would it make any difference to her if I never visited again
I don't think so. It just gets to all of us at some time or another.Have I finally succumbed and begun to believe "It's not mum".?
Oh Amy, sweetheart, this is so hard. It's ALL so hard.Amy said:I held up a top, dad said "That's not mum", to which I replied "That's the problem, it is not mum, mum has changed." To which dad said "It is mum still."
Why did I say such a crass thing? I know it is my mum. Why did dad feel he had to correct me; doesn't he know that I have never stopped loving and respecting my mum? Isn't that evident in everything I say and do? But what was I saying?
I feel quite out of the loop on TP at present - so much of what many of you are struggling with now are vague memories; the pain and anguish has passed. No more sundowning, no more getting lost, no more falling over, no more worrying about how mum and dad are coping during the nights, no more struggling to understand speech. No more anything.
So what was I saying? Have I finally succumbed and begun to believe "It's not mum".?
Yes it makes a difference to me, it breaks my heart. A hint of recognition? Never. A smile? Sometimes. And I love it, and its my mum and I love her desperately and how I yearn for her to know me and feel her love. But if she was dead then I would finally have to accept that she was gone. But I don't want her to be. If I don't see her, it doesn't hurt as much, unless I talk on here. But if I were to stop going so regularly I will feel so guilty when she does die, that I have thrown away time that we could have shared.It obviously makes a difference to you. I feel much the same with Jan, but I go anyway, and quite often am rewarded by just a hint of recognition, or, as yesterday, a sentence of three words [almost unheard of now, and would have been missed - or never said if I had not visited]
Rummy/Amy, I am feel like I am on 'catch up' tonight - last night I didn't have the energy to even sit upright at the PC ... how much longer can I keep up this physical 'running around'.. ? (I flopped on the sofa and watched the footie - that will be my 'positive' when I get to the Tea Room). Then after reading Amy's post felt I really should apprecaite (and do) being so exhausted....rummy said:.....when I will have to figure out what to do with myself once AD doesn't dominate my time, my thoughts and my emotions. Right now it seems like there is no end to this. Perhaps there is a good lesson in there, don't forget we have lives to live and try to stay in touch with the world outside of AD. Easier said than done !!
Take care of yourself !