• 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.

post AD

susan

Registered User
Aug 18, 2003
125
east sussex
Dear all
I send my best wishes to you all and i do keep in touch but feel rather isolated as i am now , with many friends on this site post AD. Today a dear friend lost her dad to AD and it has hit hard. Is there a possibility of a a thread for all of us that make close friends on TP and then find ourselves isolated after a dear one passes away? i know that i could do with keeping in touch without reminding those that are in the process of this evil disease being reminded of what is happening and if we can help, joining the discussion on support if we can help?
Does this sound too morbid - but sadly life!
I miss the contact and jokes we used to have - we hurt although still getting on with our lives.
Food for thought - just a suggestion - i know it's hard to think ahead, but sadly some of us are there - we miss the company and chats - well i do - does anyone else?
Sorry if this upsets anyone - that's why i am suggesting a post AD.
Take care all of you Sue
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Dear Susan, please check out "ALL DONE AND DUSTED". When you get to +8 posted by Snuffyuk you will find an echo of your words.
I think we are now at +14 and everyone seems in agreement that we still all post, and pull, together.
Sorry about your sad news, but please carry one posting , as usual. Love Connie
 

Mjaqmac

Registered User
Mar 13, 2004
939
I feel the same snuffy. I lost wee mummy 12 weeks ago and I keep coming back to the Alz site. It was the only place I was ever offered support, the only place where anyone understood what a living hell it was being a carer. It's not much better afterwards. I feel misplaced, underused. People ask me now what I do and I haven't a clue what to say. I actually took pride in telling people I was a carer but not at the beginning. I felt embarrassed (not by mum's illness but by society's standards of what constitutes a "Job") and told no one what I did, but I accepted that caring is a very valuable job and became proud of it.

I don't like to comment now on the site. I suppose I feel like a has been, but I miss the support and don't want to remind others of the inevitable. It's too hard for them.

Quite a few of us have lost loved ones lately. I don't know many of the names anymore on the site. I'd like to give my sympathies to all whom are bereaved, it's a very long and hard road, but we'll all make it. Carers are made of stern stuff either ex carers or current carers.

I wish strength and courage to all whom are still caring, it's the hardest, saddest job in the world and you're all worth your weight in gold so you are.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I don't like to comment now on the site. I suppose I feel like a has been, but I miss the support and don't want to remind others of the inevitable. It's too hard for them.

Hi Magic

I think we are all too aware of the inevitable, so there is no worry about reminding anyone. In many cases it is the time before the inevitable that seems worse. The truth is I guess that each stage is hell of some variety.

Sharing our experiences at all stages - including afterwards - helps us by starting to build foundations that enable us to at least understand that what is happening is not something that happens to us, alone. [grief, does that make ANY sense?]

Please do comment and use the site - everyone!
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear All,

It's exactly because we all have been through so much as carers until the end that we have so much knowledge and support to continue to give to new members dealing with AD. I can remember how difficult it was to find my way around the system and to learn to be a carer at the beginning.

We are none of us 'has beens', rather a collective mine of information.

Cheers,

Jude
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Hey, I still post if I think I might be able to help, it will be a year next month since Mum died. If I read a post and it's something I know about, I just post, I don't think about past/present/future, just try to help. There is nothing to stop us talking in a thread about our feelings after the death of our loved one is there if it would ease the pain felt by those left behind? Although I don't think another seperate area would be right for the reasons we have already bashed out on Snuffys thread. Love She. XX
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
There are no has beens on this site.
We are and always will be fellow travellers,some at the begining of the road and some at the end
Ones at the begining can gain information from all those in front farther down the line,those who reached the ultimate end can pass information back down the road.
Peg and I are well on our journey and I can give advice to those behind.
I am looking for help,comfort, and advice for what I have to come,and to hopefully make me more able to accept the inevitable.
Everyone please keep posting
Norman sad thoughts
 

Doreen

Registered User
Dec 3, 2004
50
Oldham
I lost my Husband 10 weeks ago and my sentiments are the same as Mjaqmac, I do read the posts, not as often, but I still take an interest, but somehow I feel on the outside looking in, as I am now in grief and not caring.

Doreen
 

storm

Registered User
Aug 10, 2004
269
notts
Hi all, Please all of you who have lost loved ones do keep posting you still have so much to give that will help others here if you feel able to talk about your loss it can comfort carers such as me that are frightened about the future and how we will feel when our caring roles are over. I feel guilty on a bad day when all i can think about is when will this all end what else do we have to face loss of yet more of mums everyday functions more loss of mobility? no one knows these things.Then on a good day i am scared not for mum but for my self what will i be what will i do when i am no longer a carer you give up so much to care but what happens after? That is the start of another journey and we will need past carers help more than ever,hope you understand what i am trying to say. STORM
 

Anne54

Registered User
Sep 16, 2004
147
Nottingham
Hello everyone I agree with storm 100% most of the time I don’t think about the future but every now and then I do and it scares me, that is when reading other peoples posts about after the inevitable happens and I am no longer caring is so helpful.
Please keep posting wherever you are on this journey.
Anne
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Storm and Anne,

Thanks so much for your encouraging comments on this topic.

Since my parents went into a NH three weeks ago, I do seem to be feeling a bit redundant. The first week was the worst because I was checking the clock and thinking, 'Oh, it's time to make coffee, or lunch,' etc - and then realising that they were no longer here.... Pretty sad.

My days are now being taken up by driving to and from the NH to visit them and packing up the house. At least it is keeping me busy. I haven't much time to sit and ponder whether I could have done things in a better or different way.

Ultimately, I have concluded that I have done absolutely everything that I could have done over the past 6 years. Still, there are a few 'what if's' along the way.

Jude
 

Anne54

Registered User
Sep 16, 2004
147
Nottingham
Dear Jude
There are always “what if’s” I have lots but no one can change the past we can just try to make the future the best it can be. Live for today and enjoy the small things that make it all worthwhile.
Anne
 

chrissieL

Registered User
Jun 22, 2005
54
69
Shropshire
Yes please keep posting, people like me who are just starting the journey of being a 'new' carer need all the help we can get. I personally can't read enough at the moment!
Chris.
 

storm

Registered User
Aug 10, 2004
269
notts
Jude, I totally agree with magic and i dont do what ifs we do what we feel is right at the time you dont look back whats done is gone today is enough to deal with.We do the best we can and who could ask for more.storm
 

Lulu

Registered User
Nov 28, 2004
391
I have found invaluable help here on this site. People going through the beginning stages of this disease, to the end stages and beyond. From this site, I have been given advance warning of all the possibilites of what life could now hold for both Mum and I. I have been able to make plans, consider things I never thought I would ever have to consider. In short, for the time being, I feel as though I am now one step ahead due to people's experiences who have gone before ... All thanks to the generous peole who write in here.
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Hi All,

'What if's' are a big waste of time and energy really aren't they? I'm weaning myself off that guilt motivating trip. Big waste of head space.........

Jude xx