Login   |   Register   |   

Dementia

Started by: karvern (76) 

Has anyone on this site lived with a family member who suffers with dementia? My father unfortunately has suffered with this disease for many years now and is now residing at St George's Nursing Home. I'd really like to chat with someone regarding their experience living through this disease if there's anyone out there..

Started: 25th May 2006 at 03:50

Posted by: mollie m (7076) 

Hi Karen. That must be very distressing for the family. I can't help personally but if Chewy sees this he may be able to talk to you about it as I believe he is specialising in dementia care. He's a mental health nurse so perhaps he can give you any assurances there may be.

Come on Chewy.

Replied: 25th May 2006 at 11:37

Posted by: chewbaxter (121)

Firstly... my experience is as a Nurse and supporter of the Alzheimer's Society and not specifically in looking after someone 24/7 - my advice is to contact other carers...

There is a specific forum that I highly recommend -

http://www.alzheimers.org.uk/TalkingPoint/discuss/

There are folk on there who are carers and will be more able to empathise with you... I can talk for hours and hours on the subject... quote my own experiences... give examples of research etc. etc. but I reckon they'd be better because they could say "I know what you're going through... because I have experienced it firsthand".

Also - no two cases of this tragic illness are alike - so I wouldn't say "oh... this will happen... that will happen... etc."

I do have something I set up online that might be of use for links to leaflets, info., books, research, etc.

http://com5.runboard.com/balzheimers


Hope some of that helps...

And if you want to contact the Alzheimer's Society for specific information and advice:

The helpline is open from 8.30am to 6.30pm Monday to Friday.

The number to dial is 0845 300 0336


Hope this is of some use to you - if not, get back to me and I'll try to help if I can.



My best wishes to both you and your Dad.

N.

Replied: 25th May 2006 at 16:33

Posted by: dave© (3507)

There's this place, without the expensive 0845 number for help.

http://www.alzheimers.org.uk/BranchWebsites/WiganLeigh/index.htm

Replied: 25th May 2006 at 22:29

Posted by: chewbaxter (121)

Cheers Dave... best of it is... I forgot to mention that and I help set the ruddy thing up!

I'm on the Committee for 'em!

Thing is though... the phone thingie may be an answering service unfortunately, so the number I posted above will get you through to someone directly for help and advice.

Anyhow ta for posting that, and apologies for my lapse in memory there.



N.

Replied: 25th May 2006 at 22:53

Posted by: karvern (76) 

Thank you everyone! I really appreciate your responses and the information is extremely helpful. I will forward the information on to some members (not all) of my family who are fighting the issue of Dad being sent to a Nursing Home and to those who have started pointing the finger of blame to his has been carer for the past 6 years - my Mum. I have endured a lot throughout my life but seeing Dad's existence being eaten away with this disease is the worse pain I can honestly say I have experienced. There'll always be that point where you're in denial of what's happening from when you see that moment of 'hope' where Dad recognizes you, kisses you and holds you again, the same way he did many years ago...but then - pow - it disappears once more, he may raise his voice and get angry with you because he all of a sudden doesn't remember why or what he just did, or the reason he did it, and the realization comes back to what is really happening. The seperation this has caused to a once 'close' family is dreadful and it breaks my heart to see such bitterness appear from somewhere that I can't connect to nor reason with. All I can do is keep hoping that one day, we can all come together again with a proper understanding and live the way Dad wanted us to - happy! I read a book last year called 36hr Day which did help me somewhat to understand Dad's behaviour, and helped me take care of him, while giving Mum a break in that once a year visit I manage to make. I guess all I'm looking for now is a miracle cure....
Thanks again to Mollie, Chewy and Dave - I sincerely appreciate the time you took to respond.

Replied: 27th May 2006 at 08:28

Posted by: reddi8 (1107)

a new care home just for dementia sufferers is opening in Wigan. My daughter a MSN went to have a look round.

Replied: 27th May 2006 at 08:35

Posted by: ann442 (210)

my farther has it
its hard and i dont live in the uk
when i phone he puts the phone down on me
he thinks am trying to sell him somthing
so i never get to talk to him any more

Replied: 27th May 2006 at 14:39

Posted by: karvern (76) 

Ann, sorry to hear your father suffers it too and that you live so far away - i'm right there with you (so to speak)! Do you manage to get back to visit?

I make sure I visit once a year and spend all my time with mum and dad, mainly to give mum a break from her routine of taking care of dad... the nurses do that now.

My family think it's easier living away b'coz we don't have to see him every day! Can't believe they said that but they did... I'm sure you disagree with that statement, just as much as I do.

The links that Chewy and Dave sent are great tools in ref to dealing with the disease - it guided me well this morning when I read through it - helped me understand better why my family are split right now. If you get the time, go ahead and have a browse, you'll be surprised.

Replied: 27th May 2006 at 20:41

Posted by: chewbaxter (121)

Glad to have helped karvern.

If there's any other onfo I can help out with let me know.

By the way... I suggest you check your public library for books re: dementia issues - I know that in the Wigan area there are quite a few available.

Might be of use.

N.

Replied: 27th May 2006 at 22:30

Posted by: karvern (76) 

Thanks Chewy. I'll check into that and see what they have. I found only one that was the 36hr day at Barnes and Noble last year.

Reddi, where is the new home you mentioned? If it's for dementia only? If it is it may be better for Dad. Dad is in a EMI Nursing Home that takes care of a majority of mentally and physically infirm patients and I guess there's only 2 others in there that can really converse with him, even though it's nonsensical - he's still able to communicate. Dad isn't to the point where he needs feeding or taking to the bathroom - that's where our issues are to where he is... but we can't find anywhere else in Wigan... I'd appreciate any information on that Reddi...

Karen

Replied: 28th May 2006 at 17:21

 

Note: You must login to use this feature.

If you haven't registered, why not join now?. Registration is free.