im thinking of leaving this site...

[Saffie]

All I can say is that some of the people on TP have become my friends - real friends. not those that ask how I am and don't really want to know and to whom i wouldn't tell the truth anyway; not those who once professed to be my friend but disappeared once the dreaded word'dementia' was mentioned and certainly not those who never, ever ask after my husband as if he were dead.

Some posts I do not like, some I do not agree with but we are all different and have our own ways of dealing with our present situations. There is no compunction to interact with other TPers and obviously we all relate more to some than others.

However, without TP I can honestly say that I don't know how I would have coped over the past year, it has, and is, my life line. Thank you all. X

[Josieb]

I found this forum. I read and lurked for a while, then I joined and lurked then cheekily joined in a few posts. Then I felt brave enough to post a new thread, and people were very kind. I didn't feel I had the right to post as my lot was no where near as bad as most, so far. But no matter how bad their lot is they take the time to reply and make you feel warm and welcome, safe in the knowledge that you are not alone. A cyber hand held out to you, sometimes with a pat on the back and sometimes with a cyber hanky to wipe away the tears.

This illness is truly dreadful and no one wishes it. I certainly never signed up for it and I know my mum didn't, but here it is and here we are and IMHO this dreadful illness is made a shade more bearable due to the warmth and kindness of this community. I think of it as a puppy throwing its self on top of its litter mates and snuggling in for security.

Long may the kindness and compassion of this community continue everyone should take a cyber pat on the back. Hugs and blessings

[Butter]

My situation with my husband is so grim I have stopped posting. Early Onset AD started in his late fifties and a very fast deterioration. My mother who has not any sign of dementia is also now in care as she is ill too, and my son has had a nervous breakdown and is almost suicidal at times. Three traumas almost simultaneously and for good measure my beloved dog died at the same time that my husband was taken into hospital never to return to me in August 2010.
AD is like a curse from God ( that is if you believe in such nonsense) but it feels that to me. I am so bitter and angry and upset that some days I cannot sleep, finances are a constant juggling act and I too have felt suicidal at times.
My husband is in a secure unit in a special hospital, physically in excellent health but cannot speak,does not know me or indeed anyone; he hallucinates and if his personal space is invaded he becomes aggressive and abusive; he is doubly incontinent and requires 100% intervention in all aspects of his day. No words of consolation can make me feel better. I count the days and rarely visit him as it is so distressing, We had such a happy time together with very simple needs and lifestyle - all gone now.
I am trying to sell my home and move far away to a new area where nobody knows me and maybe, I can start again. I am still relatively young and even will try to find some work. So called friends have all but deserted me as they have their own lives to lead.
I know this is a very candid posting, but it's all true.

all this pain ... you know this is not so rare, I'm afraid. Not rare at all. I have sent you a PM as a gesture of solidarity.
I think this is an example of how just when you think things can't get any worse - they do.
I have to be grateful to TP for keeping me in contact with all the pain which gives me companionship, I think, in my own pain.

[scared daughter]

Hi Vinni

This site is VERY distressing because this whole process is unbelieveably cruel, sometimes I find my self feeling poverwhelmed byt he enormaty of what is happening to my family.

My advice is stick with it - I dont post much but read often, for me at the moment its all just too painful to talk about - but just reading other people and seeing you are not alone in iteself brings me a huge comfort.

I would say accept it is totally normal to find things on here overwhe,lming at times, everyone here is at a different stage and sometiemes reading about a stage you havent got to yet can be scary - but it is ok in a way it prepares us for whats coming.

Sending you a huge hug xxxxx

[AnnRCW]

I'd agree in using this site when you need support and feel it is the right time.

An earlier post reminded me that, while the consultants I see may be experts in Alzheimer's I am the expert on my mother and her behaviour and the experiences of others on this site reinforces that, which in itself is helpful.

Plus you can always choose to read selected posts that you believe will help, without being obliged to reply.

[Bodensee]

When I read that your mother was only 50 with AD I felt very sad, this is such a young age to be suffering with neurological problems and must be awful for you to have to deal with. What I find helpful about this website is that you read about many other people in the same situation, either young or old. I cannot believe just how many young people are suffering memory problems, what is brilliant about this website is that it enables you to read about research and developments that are underway around the world to find out why so many people are developing 'dementia' diseases and what are the possible causes, it also gives you an insight into what help and medication people are receiving that you may not have known about.

[NeverGiveUp]

There are some amazing answers in this thread, you have a complete snapshot of what it is all about, the diversity of situations/people, experiences and the feelings. Most of all it says that there is a place where everyone has something in common, where people understand. Dealing with dementia is a fight - the illness itself and fighting for everything else, it can be a lonely road, incredible when so many millions of people are affected by it both directly and indirectlly. The horror stories and advice are all imprtant facets, you are always allowed to think that the negative situation you face is unique, no-one else has ever had to face it, TP lets you know that you are not unique you are among the many. When mum was formally diagnosed in 2006 the sum total of information we were given by the doctors at that time was "it will get worse", we would have wanted to know what kind of things were possible, instead we found out the hard way. Places such as this are invaluable, read the posts and just hope that you don't have the same situation, as the saying goes 'forarmed is forwarned'.

I have learned a lot here, if the posts are depressing I think 'thank goodness we haven't been through that', I also feel that by posting on boards such as this it is a step towards fighting back in a situation which none of us has much control. Caring for a loved one has a large element of grieving for yourself and what you have become, it is depressing, it shows that you are human.

[Sinartra]

im thinking of leaving this site...im finding it very upsetting! do most people think like this when they join? i think i have been living in a bubble and after speaking with people in my shoes iv hit reality...

Hello, you must feel like i do sometimes, but you can look at support side on this site rather than take things as a negative with what you read..People deal with approach to support in different ways this could be looking at other peoples life expericences..or you may wish to participate in community face to face support groups etc.Not everyone feels like doing this but everyone needs to talk its the best form of therapy.(for me anyway)I live now with close family that have life threatening illnesses but we focus on today..we have fun and ignore negatives of illness and just simply get on with it..we have no choice.
Easier said than done i know everyone is different but keep talking never bottle up your emotions is my therapy, i hope a little of what i said goes a long way.
Good luck.

[Clementine]

What I like about this forum is, that nobody sits in judgement of the other, if you have an off day and you write, I really dislike my Mum or Dad or Husband, and I hate caring for them, nobody cries out in amazement or horror, they all can understand that you have these days, everybody is ready to support you, be it with good advice or good "vibes".

[NeverGiveUp]

Clemantine

Well said, sums it up in few, but wise, words of what it is all about.

[Trish_B]

I wish I had found this site many years ago while I was struggling with Mum and before I lost her at Christmas.

I felt very alone, was very alone and spent many days, weeks, months on auto pilot, caring for mum in the home, working, raising a family and making myself ill.

Use the threads to vent your anger, seek advice and eventually, to offer advice.

You'll never be alone while you're here and that is probably the most important feeling of all is that you feel alone and nobody cares/knows what you're going through.

Trish

[jackanory]

I hav e dementia and left for a year and this is my first post back , my sisters both were afected and i was down for a while .But the suport you find on sight is good and helpful i am on arecept and doing ok so dont give up jackenory

[jeannius]

When i joined I thought oh here we go and and as I work for Adult Social Care thought I knew a lot of the answers however with all the wonderful suggestions being made by carers whose relatives have dementia I have enjoyed this site and the love that exudes in people wanting to help other people. Working in social care you think it will all be so easy - I am not a social worker - but it isn't. I seem to have been left on my own to look after my mother and as we live in the same house I feel that with work and looking out for mum I have it 24/7 like a lot of you. I have had to put it on the line with my GP that I find the constant second guessing of what my mum is trying to say, my inability to be patient, resentful I have been left with my mum- I suffer anxiety/depression anyway - and the constant repetition of me keep saying things to her over and over and her repeating things over and over very stressful. I am lucky in that I am able to get out and about but for a lot of you that may not be possible.
So please try and see that although this is an upsetting site and disease the need to love your loved one, let your emotions out, be kind to yourself, allow any guilt out and if you are religious give it to God, even if you aren't give it to God to deal with the anger, resentment, guilt etc. I do,He can take it! I am not going to apologise for this statement because as a Christian I have nothing to apologise for. For earthly help make sure your GP and other agencies are be on board, if not fight and push for help!