• 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.

Is it just me ????

elwoodlpool

Registered User
Mar 27, 2006
181
41
Derbyshire
www.myspace.com
Hi all as you know ive started the process to get mum moved, But now and then i wonder how this illness goes i ask myself has mum got years,months,weeks and it tortures me its the not knowing that gets to me does anyone else feel this way sometimes ????


Hope your all well

Mark
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Mark, I think we all feel the same about that!

Everyone is different, and the disease lasts for different lengths of time for each of us.

When the person you are caring for reaches end stage, you think they won't be with you for much longer, but end stage can last for weeks, months or years. And the constant ups and downs are very wearing on the nerves.

Sorry I can't be more encouraging. It's hard, and don't let anyone tell you different. But many of us are suffering with you.

Love,
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Feel much the same, Mark

It's the not knowing, it adds to the feeling of being in a state of limbo doesn't it. You can't do any of the normal planning ahead with any confidence, as things can stay the same for a long time and then, suddenly, lurch into panic mode again.

On the one hand the child in us (albeit grown-up) wants Mum or Dad to be with us for ever, because they always have been.
They are a hugely pivotal part of us, and of our lives. We don't want to think about the vacuum they will leave when they die.
On the other hand it's torture to watch them deteriorate & suffer - you wouldn't wish it on your worst enemy.

If I can borrow Taffy's signature tag,
Worry is like a rocking chair; it gives you something to do, but it doesn't get you anywhere.
I know I've not offered you any comfort, and I can't - apart from saying :cool: No, it's not just you!

Best wishes
 

andrear

Registered User
Feb 13, 2008
402
Yorkshire
HI Mark

For me here and now are all that matters. At first I worried about everything but now I really do just take things on a day to day basis. I thought we'd lost mum last a couple of times but she's still around. Dad was ill not that long ago when he went off on walkabouts with only a vest and a pair of trousers in the pooring raing. He was really ill but he got over that one.
Our lives are just on hold and that is very frustrating but I can't see any other way so we just have to keep on going.
Love Andrea
 

Mameeskye

Registered User
Aug 9, 2007
1,669
55
NZ
Hi Mark

From the moment of Mum's eventual diagnosis we lived with not knowing. As she had VAD we were well aware that not only could she slowly go down the progressive dementia route but that also, a huge stroke could carry her away within seconds.

You can only try to live your life with this thundercloud looming. You make your plans, cross your fingers and hope for the best. Sometimes the oppressiveness gets to you and then TP is here for you.

It doesn't go away but try to live for the now as Andrea suggests and try not feel guilty for enjoying the good times that are there.

We have all felt as you are feeling.

Love

Mameeskye
 

barbara h

Registered User
Feb 15, 2008
96
county durham
Hi Mark

No it is not just you a couple of weeks ago we thought my mam was near the end the doctor confirmed she was in the end stages but since then she has started eating and drinking again. It's an awful situation i am pleased she has improved a bit but you think about the quality of life and you wonder what is worse.
We are going on holiday in three weeks and i am trying to get my head around going and trying to relax, i'm worried i will still be waiting for the phone to ring. Like Mameeskye my mam has vascular dementia so anything can happen anytime.
I know it's no help but sometimes knowing other people are experiencing the same situation does help. We can support each other on here.

Take care
Barbara h
 

SaraS

Registered User
Feb 14, 2007
8
Hull
No its not just you!

I have to say I resent it all and my mum who has it - especially when I see how it affecting my Dad. He is 89 and my mum is 82, and aside from the Alzheimers and her constant hyperchondria is strong as an ox!

My Dad has recently started to say he has no life and doesn't expect to live to see his next birthday - that breaks my heart more than how my mum is. She is a mild case so far, memory is bad, worse when it suits!! Occasionally angry but not too bad.

I sometimes wish it was a disease with a set end date to it and I feel guilty even saying it.

Sara
 

zonkjonk

Registered User
Mar 1, 2007
290
Melbourne, Australia
hey mark, your mum is much younger than mine
but I go through the same feelings you are
my mum is now unable to speak,toilet,urinate,walk or talk
she can eat still, and drink
bowel movements aided by drugs
this disease is cruel and horrific
oh, how I miss my mum, and oh how I wish I could save her.
but I cant and none of us can.
love from Jo