1. Jude

    Jude Registered User

    Hi everyone,

    I have only recently logged onto this Website and am finding it wonderfully reassuring to speak to other carers. So far have had some great chats with Izzy, Bill and Charlie and we seem to be developing quite a dialogue.

    So - anyone else who wants to join in - don't wait. Xmas is coming up and we could all do with a bit of extra support and TLC.

    Don't know if I'd be reinventing the wheel or if this would be presumptuous, but I thought I'd give a bit more information about myself - then perhaps everyone could do so and we could get to know each other a bit more. Here goes...

    I'm Jude - Both of my parents have Altzheimers. I'just turned 50 years this week - eeekkk!!

    Normally I live in Indonesia, having been there for 15 years. I have a small hotel over there [and a husband] and also lived in Australia for 16 years. I returned to UK in May of this year and decided to look after my parents, rather than put them into a nursing home. Pretty difficult, but I'm much happier looking after them myself. Luckily my parents have a wonderful additional carer who will be able to move in and look after them when I have to go back to Bali in Jan/Feb for a month or so. Couldn't survive without her. I am now going to spend quite a bit of time shooting back and forth between Indonesia, Australia and England.

    It's going to be pretty busy in 2004!

  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi Jude - as you know I'm Izzy - the one you thought was 94!!! I'm actually 52 and my husband is 73. He was a headteacher and I am currently a headteacher. We met we he came as head to the school where I was a teacher!! He looks about 60 (if not younger) and has always been full of life. He's actually responding really well to all medication and we're doing well. I obviously still work as he doesn't need any 'caring' in that sense of the word. This site has been fantastic as I can talk to everyone where I can't do that in 'real life'!

  3. Charlie

    Charlie Registered User

    Apr 1, 2003
    Hi Jude,

    introductions, great idea.

    I empathise with your situation as I always try and look on the positive side of life myself. It very easy to get down about the situation as Alzhiemers in my opinion is a particularly cruel illness. My dad has had Alzheimers for about five years, it started soon after retirment, and he is now 70. My mother is dads main carer and although she is very ill herself, she copes amazingly.

    I just try my best to take away as many problems from them as possible and hopefully give them both an oportunity to capture a little quality now and then. This forum provides me with a great deal of support as I knew little about dementia a few years ago, infact, I just thought dad was getting forgetful four years ago and it was something you accepted as years passed by. His grandmother now 92 has dementia (not Alzheimers), so we were a little suprised when dad was diagnosed with alzheimers 3 years ago.

    There is just so much solice in having a place to visit where you can talk to people in similar situations. I'm normally a pretty open guy when it comes to one to one conversations, but I have found it hard to talk to my friends and partner about dads situation, it just brings a lump in my throat.

    I also have a young daugher who helps me look after dad when we visit - she takes good care of him and they have loads of laughs together :)

    Kind Regards
  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades

    I agree this site is somewhere one can find help advice and some comfort.
    One of the feelings that I have experienced has been feeling so alone and isolated,this site can help that feeling.
    I am 75 my wife is 76 and I have been looking after her now for 7 years I am sure that it is only Aricept that has kept her with me, although her memory retention is now about 10 minutes.
    We have had a wonderful long married life but now we live from day to day,sticking to the familiar as much as possible.
    No more holidays abroad,no more coach tours,but we can still manage a self drive holiday to a familiar hotel,and we can sometimes remember some of the past times together.
    A thought, why are there not more men on this site?
    Best wishes to you all and keep in touch
  5. Jude

    Jude Registered User

    Great to hear from everyone so quickly..! It's wonderful to know that people are using this site on a daily basis and I look forward to getting to know you. Many thanks for the helpful ideas and support. It feels really comforting.

    Izzy - er, well I always was absolutely terrible at Maths. In my last school report the teacher wrote 'your father has completed his homework consistently well this year'! Just about says it all really........

  6. Angela

    Angela Registered User

    May 28, 2003

    Hi All
    Jude in response to your other posting - it has gone a little quieter here, but as friends have said, we all sign in and type to each other from time to time, if any of us posts, it wont be long before we get a reply and learn that we are not so alone on here, or out there.
    Intros... Im me, 31 years old, 32 in 2 weeks! My Mother has a form of dementia, she is now 54.
    I work for the Society here in Wales, on a local level. My job is to provide information and support to ppl with dementia, their carer and family members, as well as liase with the mental health team and other statutory bodies. I post on the site on a personal level.
    As I have said in another posting - Im working more hours and with chrimbo coming up, extra busy. But I too frequent the site at least weekly.
    I look forward to typing to you soon
  7. Jude

    Jude Registered User

    Dear Angela,

    Lovely to hear from you. Do hope you have a great Xmas and birthday.

    We are expecting my brother to arrive for Christmas and it will be our first Xmas together as a family for over 15 years. Should be very enjoyable all round.

    I am absolutely freezing to death here! Am totally unused to the climate in the UK and finding it very hard to handle after my usual tropical lifestyle in Bali. Still, we have a blazing log fire most evenings, which my parents love as well and my father really enjoys helping me chop wood and wheel it into the shed. I do the chopping - he mans the wheelbarrow... and my mother supervises...!

    I expect everyone is very busy with the Silly Season looming up. So I hope you and your family and all other friends on the site here have a wonderful Xmas and New Year. Look forward to hearing from everyone in due course.
    Best wishes
  8. emscub

    emscub Registered User

    Dec 5, 2003
    Hi everyone,

    I too have only just joined the site, and have found it really helpful seeing everyone's experiences, as even though you know you're not the only one in this position, it does sometimes feel like no one else understands.
    I'm 22 and am a student living at home with my parents and my Nan who has never been diagnosed with dementia (although I have recently persuaded my Mum to take her back to the doctors, as she has many of the symptoms of vascular dementia). She has a memory span of possibly a minute and as I'm sure you're all aware things can get quite frustrating at times.

    My Nan always used to be very organised and is used to doing everything for herself, which means that every christmas is very hard work. I don't know if any one else finds this? She repeatedly asks about writing her christmas cards and things even though she can no longer write a card without copying someone elses writing. My Mum works full-time and to cope with my Nan every night asking questions time and time again about Christmas is really tiring for her.

    It's really nice just to step back and realise that there are other people going through the same things and that you're not a bad person for getting frustrated. (I hope not!). Sometimes I wish my Nan could realise just for a minute the trouble my Mum goes to to care for her but obviously she has no idea that anything is even wrong. Maybe this is selfish of me but my parents have very little time to themselves and I can't help blaming my Nan for this.

    Sorry, just having a 'frustrated' day today.
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    we all have the feelings of anger,frustration feeling alone, and feeling that no one cares,often then we get angry and resentful.
    Following these feelings come the feelings of remorse,when you remember that the one that you are caring for cannot help the way they are,and indeed are unaware of their behaviour.
    They don't help with the housework,the cooking anymore not because they are idle or won't but because they have forgotten how.
    One consolation at times we have a "little row " but give it ten minutes or so and it blows over as if it never happened.
    We have had two wonderful days(for us)the repeating and questions are still there but I have learned to cope with this.
    We have been out and about to the bird reserve,into the new Bull ring centre and life has been pretty good by our standards,Tomorrow-----------that may be a totally different story!!!!
    I hope Christmas is not too bad for all of you fellow carers and that you are given the strength to cope without too much heartache
  10. Jude

    Jude Registered User

    Dear All -

    Thanks to everyone for their help and support and thanks to Emma and Norm for their most recent posts.

    Getting frustrated with the same boring endless questions is a really hard one to deal with initially. My parents seem to get stuck in a particular 'loop' and then drone on and on about the same thing for hours. The next day, they find another topic and - here we go again.... until you feel like screaming and throwing plates at the wall, or chucking yourself out of the most convenient window! Some good 'tactics' to keep you sane......

    When I feel frustrated, I go away and hide in my sitting room, or go for a short walk outside for 5 minutes. This helps me not to get snappy with them and certainly helps to stop feeling guilty about it. [Just think how PATIENT you will be in later life, when other people try to irritate you?]

    My father is relentless about enquiring about his finances. This is one of his obsessions. We can have a discussion for an hour, after which I will go out of the room and return in 3 minutes and he'll want to go through it all over AGAIN..! Diversion is a great tactic..! Could be a cup of tea and a biscuit, a video, a picture book or taking them for a walk. It's a bit like changing channel on the television. If you're fed up with the programme, then alter it. Invariably this seems to work, but one has to be a bit subtle about doing so. The main thing is to decide that you've had enough BEFORE you start getting irritated.

    Also by just being honest and saying 'Perhaps you don't quite remember, but we've just had a long discussion about this subject together. Right now, I need to go off for a short time to [make your dinner, make a cup of tea for you, punch pillows, reload the shotgun, etc] so let's put it on hold for now. We can certainly discuss it again soon'. This seems to work quite well most of the time and with a bit of luck and a diversion, the subject will be dropped at least for a few hours to give you time to draw breath.

    Hope this helps.

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