• 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.

Cry without weeping, talk without speaking, scream without raising your voice.....

Little Sis

Registered User
Jul 26, 2006
5
West Yorkshire
I know I will not be alone in mastering all of these abilities, trying to be the "strong one" all the time has taken a toll on me. My father has Lewy Body dementia and Parkinsons, he is 83 and has had a good life but I am still upset, angry,confused and all the other words you all know so well but, what really takes the biscuit is my beautiful, gorgeous, kind, gentle brother suffers from A.D. and as of last friday is now in a residential home........He is FIFTY SEVEN years old.........My head hurts, I mean really physically hurts with the whirlwind of thoughts and feelings and emotions that are rampaging through it. I try my best to be there for everyone, try to make them smile, help with whatever needs doing but inside I am screaming.......if only I knew why??????
 

cynron

Registered User
Sep 26, 2005
429
east sussex
says it all

Dear Little Sis.

I think your title says it for all of us.Keep posting you will find friends on here.

big HUG.

cYNRON X X
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Little Sis,
Welcome to TP - feel free to scream on here. Yes I think dementia is difficult to accept in the elderly, but at least you feel that they have had a fair crack at living, but when it strikes younger you feel that both your loved one and you have been cheated. There is no answer to the "Why" - it is just the way life is.
For your health, you do need to be able to weep, speak and scream - no need to put on a show here.
Love Helen
 

Kayla

Registered User
May 14, 2006
621
Kent
Cry, talk, scream etc.

This morning mum was crying and tearful and rather more confused than normal. She said that she knew she was all muddled up about something and couldn't remember things properly, but she didn't know what she was muddled up about. There seem to be more questions than answers with dementia.
I didn't know what to say to her, except that the anaesthetic she had in hospital could have affected her memory. I felt powerless to help her, but glad the NH staff are there to look after her.
Kayla
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Little Sis said:
I try my best to be there for everyone, try to make them smile, help with whatever needs doing
Hi, Little Sis, I don't mean to ask this to pry nor expect you to answer, but is there anyone trying their best for you? Whether or not, do you ever stop and allow yourself to do something that is 'best for you'? No-one can be or should be expected to take so much on without support in some form or another..... TP is one lifeline.... glad you have found it!

Love Karen (TF), x
 

Helena

Registered User
May 24, 2006
715
The LBD group on yahoogroups can be very helpful

Things like anaesthetics do seem to trigger real problems in LBD patients
 

Margarita

Registered User
Feb 17, 2006
10,824
london
My head hurts, I mean really physically hurts with the whirlwind of thoughts and feelings and emotions that are rampaging through it try my best to be there for everyone, try to make them smile, help with whatever needs doing but inside I am screaming.......if only I knew why??????




What happen is your brain is like computer when it has no more space for programmes it take up all the memories it can crash, where you are at this time its hard to swich of /on it can come out in anger



(If you look at programs as thoughts and feelings and emotions, hurt ,feeling ,sadness worries for the future)

This may not make sense to you, but it did to help me when I was told this by my brother CPN when it was happening to me

It’s good to cry and type it out, yes TP is great support for that.

The only way I can switch of is going for a walk, shopping coffee swim with one of my daughter,( I just have to find time for me ) sharing talking with them. I don’t get to deep with them, but there positive young energy seems to bounce back to me.
 
Last edited:

Libby

Registered User
May 20, 2006
625
62
North East
Hi Little Sis

If only there was someone to blame for this awful disease - you'd feel as if you could do something about it by ranting at them and shouting - WHY!! WHAT HAVE THEY EVER DONE TO YOU!!! But sadly there's not - how terribly sad for your brother to have it and at such a young age.

I really feel for you.

I think I've typed that sentence quite a lot in the past few months since joining TP, but I feel for so many people here

Scream and shout as much as you like - think of us as invisible friends.

Take care

Libs
 

Little Sis

Registered User
Jul 26, 2006
5
West Yorkshire
Thank you all xx

Just to say thank you to everyone who has taken time out of their hectic lives to answer my silent scream......Today was not so bad, I think just knowing that If I wanted to, I had someone (all you lovely people) who would not judge me or critiscise me, but who could quite genuinely understand me and from personal experience too......It really does help as I am sure regulars among you already know.......Thank you xx
 

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