Where do I start!

[connie]

I am so mixed up. This week is the 11th anniversary of my dear husbands death. Nothing remarkable, you say, I would agree. I could go on grieving, except, THERE IS LIONEL
This wonderful man, who came into my my life 10 years after my dear husband died, has A.D. All encompassing ect.ect.

Everything I do, my children, bless them, do is enveloped by A.D. As is the life of all of you out there. I just want MORE. I do everthing in my power to give Lionel the life he deserves, but who is out there, battling for me.

My children have their own lives, and children so we go on.........and on. , Love Connie

 

[angela.robinson]

Hi Connie ,what A Painfull Day You Have Had ,life S A Bitch , What More Can I Say . Except, Where Are The 1000 Users Of Tp ,why Is No One Responding To The Crys For Help?during My Darkest Hours A Few Months Back I Received Replys And Support Almost At Once ,now There Seems Very Few People Replying .stay Strong ,thinking Of You .love Angela

 

[Jude]

Dear Connie,

The sheer relentlessness of dealing with AD day after endless day often feels like an enormous burden to carry. Knowing that we ultimately aren't going to win the battle doesn't help us to cope any better either. AD is a creeping, insidious thing that slowly encompasses every part of our lives, almost to the exclusion of everything else that we hold valuable and dear. Little wonder that we all feel beaten down and helpless in the face of circumstances over which we have no control.

Anniversaries, birthdays, Xmas time - all these important dates hit us very hard because they remind us of times past, in the good old pre-AD days before the roof fell in. Our memories surface strongly at these times and remind us of just how much we have lost. No wonder we want MORE - or a return to some sort of normality at the very least!

The realisation that my parents aren't any longer making any new memories was one of the most difficult aspects of AD for me to deal with personally. It seemed so cruel.... It took me a while to get my head around a partial solution to this, but I decided to create their memories for them and keep those memories alive within myself.

Maybe this will work for you too, Connie. Gather up all the brighter moments of the here and now and store them away in your own personal 'Lionel Memory Bank'. That way, on the dark days you will have access to a store of treasured moments to call on when you feel overwhelmed. It does help in some way to give that 'MORE' hit that we all need so much.

Jude xxx

 

[Jude]

Dear Angela,

TP is like a body of water - sometimes in full flood and then merely a small stream. The fluctuations in the flow don't seem to follow any set pattern, so far as I can see.

Perhaps people are away on holiday, out enjoying the sunshine or glued to Wimbledon! Whatever - there will always be somebody around to help.

Best wishes,

Jude

 

[Brucie]

Hi Angela

As Jude says, the membership of TP ebbs and flows as people's conditions change.

In any case,

• many of the members are more observers than carers
• some are carers who feel their role has now ended, for whatever reason
• some are deep in the throes of caring and have had to withdraw for a while from helping others perhaps because they are more in need of help themselves
• others are trying to rebuild themselves and need time away from the
  issues of dementia
• others may be on holiday [or as was the case for me the past couple of days, taking themselves away from home to try and have a short break]
• etc

Also, although there are over 1,000 members now, at any one time the number of active members - that is to say, those posting on TP, is much smaller. I have attached a chart showing active members during June.

Finally, some of the posts require more than a quick response. No matter how bad we feel our own situation is, there are always others that we discover are in a worse situation. It is very sobering.

No member of TP has all the answers, or maybe even more than a single suggestion for a specific experience. We're all somewhere in the mess that is dementia.

 

[Lulu]

Dear Connie, I have only just become a member as Mum was diagnosed with probable early stage AD a year ago. I read all the posts here now, and have gained such a lot from it. I have often felt like writing in to sympathise with all those further down the line than we are, but am hardly qualified to say anything of any meaning, not having yet been there, and experienced some of these difficulties. But how I do sympathise with you, and can imagine only too well what life must be like. I just wish I could do something to help you. Anyway, I am thinking of you, as I'm sure a lot of others are even if they don't write in. It still scares me a little to use a site such as this, in case I say anything that offends, or I make a fool of myself ...Take care. Lulu

 

[Brucie]

Hi Lulu

Sympathy is as important as advice - all too often there is simply nothing we can say that makes things right, but it is always good to know there are others out there who care enough to say so.

Dementia makes fools of us all, so never worry about posting what you might consider to be foolish.

 

[angela.robinson]

Hi Bruce ,of Course All Your Points Are Valid ,after All ,having Just Lost My Husband,mostof Them Apply To Me ,i Wanted To Withdraw ,but Still Log On ,as Its Still Compulsive ,when I See A Painfull Post I Cannot Rest Untill I See A Reply ,its True Some Need An Indepth Answer Wich You Always Give ,but Just An Hellow ,i Hear You ,helps To Tide The Poster Over Wether It Is From A New User Or Old,if Some More People Dont Start To Post ,there Would Be No Tp ,angela

 

[chrissieL]

Connie,
I feel the same as Lulu, I'm new here and mostly just read to learn and get some insight into this awful illness. I do feel for you, my life seems to have been totally taken over by this too. I can't think of much else these days.
Isn't it good that we can spill it all out on here and know someone will understand.

 

[Sheila]

Dear Connie, sorry not to have replied before, I seem to be caught up in my own private hell just now. Last year, this was the last week of my Mum's life. Try as I might, I keep re living it all. When I read your post, I felt so sorry that you were feeling this double grief. Having lost a wonderful husband 11 years ago, you obviously will miss him dreadfully, even after that many years, it doesn't go away, you just learn the coping strategy to live with it. Then, you think you have been blessed with another chance of happiness only to have it shot down by dementia. No wonder you feel so sad. I don't have any answers Connie, but like the others, if I can help by being there for you, here I am. Love and hugs, She. XX

 

[connie]

Bless you all and 'thankyou'. My problems always seem worse around this time of year, for personal reasons.
I appreciate your replies and shall try to stay more positive.

It is strange that it is sometimes easier to give comfort and advice to others, than to apply some of that advice to oneself.

Connie

 

[Norman]

I think I may have been a little quiet in posting but I have been having a personal hell for a little time ,it happens to us all from time to time,it seems to have eased a little now
I don't know whether Bruce has any statistics on this one
I would very much doubt that anyone posting has not received an answer within hours of their posting,there is always some one on line to give a little comfort and support
Norman