1. seniormoments

    seniormoments Registered User

    Jan 25, 2006
    6
    PETERBOROUGH
    :confused:
    I AM SO HAPPY THAT I HAVE FOUND THIS SITE - SO MUCH INFORMATION.

    wE ARE CARING FOR MY MUM, AGED 91, WHO IS IN THE FIRST STAGES OF DEMENTIA, AT LEAST WE THINK THEY ARE THE FIRST STAGES.
    SHE HAS LIVED WITH US SINCE 1989 - WHEN WE LIVED ABROAD, AND UPON RETURNING IN 2003, SHE IS STILL WITH US - AND WE WOULD NOT HAVE IT ANY OTHER WAY.

    HAVING JUST REALISED THAT THIS IS DEMENTIA - I DID NOT KNOW WHICH WAY TO TURN OR WHO TO GO TO. BUT HAVING FOUND THIS SITE WITH ALL THE INFO STORED IN ONE PLACE - THIS IS A GOOD PLACE TO START.

    I HOPE TO LOG IN AGAIN LATER TODAY TO BE ABLE TO TELL MY STORY.

    THANK YOU.

    I DID START A DAILY DIARY AS I GAVE UP SMOKING IN DEC 05, BUT THIS HAS NOW TURNED INTO A DAILY DIARY OF BOTH MYSELF AND MY MUMS ILLNESS. IF YOU WOULD CARE TO SEE MY SITE I WOULD BE MORE THAN HAPPY FOR YOU TO VISIT IT AT www.freewebs.com/seniormoments and from there you can log into my blog.
    WHEN I NEXT WRITE INTO MY BLOG - I SHALL ADD THIS LINK TO IT.

    THANK YOU ALL FOR BEING THERE TO SHARE

    SENIORMOMENTS
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Welcome SM,

    wERE yOU gOING tO tAKE yOUR cAPS lOCK oFF ??

    Only kidding, I hope you find lots of helpful suggestions & kindred spirits here.

    Best wishes
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi SM and welcome. Hope you will find the support you need here, I know I have. The diary, that's a brilliant little prop if you can do it. I found mine an absolute godsend for loggging down what was going on, who was involved and how my Mum was etc. It was also useful to tell the powers that be, should they ask, the exact date of things like medication changes, UTI's, bad sundowning episodes etc. This was besides the usual entries you make for every day life, but believe me, when the ammo was needed, there it was at my fingertips to make sure I got the very best for my precious little Mum. You sound as if this is just the same for you. Keep postin'! Love She. XX
     
  4. Jude

    Jude Registered User

    Dear SM,

    Welcome to TP. It's always great to have new members. Do post with any problems or questions you may have.

    Best wishes,

    Jude
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lynne
    you don't like being shouted at do you?
    Norman
     
  6. Howdy there SeniorM - nice to meet you.

    :)

    N.
     
  7. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    New to Ste

    Hello SM and welcome

    The diary is an excellent way of keeping track of both your feelings and your Mums progress.

    I have found that in dealing with all the different bodies that you will have to deal with during your Mum's illness they are all impressed and respond more if you bombard them with facts and figures extracted from your diary, and tell them where they came from. It doesn't have to be a daily account as long as you record all changes in the illness and any comments or decisions made by medical or social workers and the like.

    Good luck and keep posting.

    Cheers Barraf
     
  8. seniormoments

    seniormoments Registered User

    Jan 25, 2006
    6
    PETERBOROUGH
    Thanks to everyone

    :)
    Hi, thank you to everyone who replied to my thread. I have been unable to get back to post my story, but hopefully I shall tomorrow.
    I seem to be all over the place at the moment, coming to terms with things, knowing what to say, where to get help etc etc.
    I have not been able to sleep too well, worrying. Since my Mum broke her hip and wrist last year and has been unable to get around by herself, we have given her a bell which she rings when she needs us. Well, just lately she has forgotten she has the bell and is constantly shouting and calling my name. Hence when I go to bed I get afraid that I will not hear her.

    Just thought I would come back on to let you know that I appreciate you all responding and I shall be back.

    TTFN
    SENIORMOMENTS
     
  9. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Hiya,

    I have trouble worrying about my husband who has AD at only 55 years of age and knowing where to go for help etc but this is a truly wonderful place to be. I also keep a diary. He has rheumatoid arthritis as well as AD and as you (or Sheila?) said, you are so often asked when this happened or when that happened so it's a great idea. I seem to go to sleep thinking of him and wake up thinking of him. Well, maybe more the AD more than him even! If you are worried about not hearing your Mum when you go to bed, have you thought of a baby alarm? My Mum had one for Dad when he slept downstairs and she was upstairs. Sorry if that's already been mentioned.

    Take care

    Twink/Sue
     
  10. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I have kept a diary since Mum was diagnosed (a tip I got here),and have had to cause to look things up many times. You think you'll remember every little thing, but it's surprising how quickly you forget!

    Thinking of baby alarms and such. Does anyone know of something along those lines which have a longer range?
     
  11. seniormoments

    seniormoments Registered User

    Jan 25, 2006
    6
    PETERBOROUGH
    yr msgs

    Hi, thank you to Twink and Lulu.
    That is a great idea about the baby alarm - I shall get onto that tomorrow and post here exactly what I have found.
    Mum had me up at 4am today - yesterday 5.45 and it is at these times that it seems she does not know me - it is as though she is looking straight through me.
    When I next woke he up at 8.30 it is "goodmorning darling" - I was saying to my husband, its is as though she has a dual personality, a Jekyal and Hyde.
    She would be absolutely devastated and broken hearted if she were aware of what she is doing and saying.
    I am just so happy that I found this site and all you lovely people, who are only too aware of what is happening and trying to care for loved ones as well.

    Thank you

    Seniormoments :D
     
  12. seniormoments

    seniormoments Registered User

    Jan 25, 2006
    6
    PETERBOROUGH
    Baby Monitors - Listening devices

    Had a quick look through the Argos book - and their furthest distance is 300 meters - which is great for myself, but I shall check out some other places that I know to pass on the info to Lulu.

    As this is all very new to us, and the fact that I am keeping a diary - I note that some of you also keep a diary, as you are asked questions etc. Could you let me know exactly what types of behaviour should be noted down? At present I am noting everything as I feel that it is all relevant, is this correct?

    How do you all cope with situations?
    Can you ever go out and leave them for an hour or two?
    How do you cope when they say hurtful things?

    Do appreciate all your responses

    Seniormoments/ Anita
     
  13. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    diary

    Hi seniormoments,

    love the name, I should have thought of that one for myself! lol.

    I keep a diary and note down anything 'different' that Steve might do or say and obviously when we have seen the GP or the psychiatrist or the support worker and what they say etc. He also has the rheumatoid arthritis so I have to write everything down about that too, when we saw the GP, the rheumatologist and what amount of steriods he is on too. I could NEVER remember it all without my diary.

    He's not as far down the road as your Mum from the sounds of it, I can still go out and leave him on his own for a couple of hours occasionally during the day. I went to Peterborough with a friend (I'm not far from you) and he had a cup of tea and some cake for his lunch but I certainly couldn't leave him overnight, he takes tablets twice a day and has no idea what he should take. As yet he hasn't said anything hurtful, he's very apologetic a lot of the time, not that he does anything to apologize for but if he has to ask me something a few times he says sorry.

    I'm waffling as usual so I will close. This is a wonderful group, I don't post too much but read what others say many times a day. It's so helpful to me. Everyone will help you.

    Twink/Sue
     
  14. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I jot down the 'highlights' of each day, headaches, behaviour, etc. I write about all appointments, what is said, by whom, because otherwise I forget. Whether Mum has been on good form or not ....everything goes in there!

    I have been looking in the Argos catalogue too since you mentioned monitors, and have since put in a search on the computer for surveillance paraphernalia. I had no idea there was so much equipment for people who want to 'spy'!! Fake buttons, phone taps ... it's amazing!

    I don't wish to spy on my mum of course, just ensure she is sleeping. I feel that she isn't at times, and catch her asleep during the day more and more. She still lives alone, but close-by, so it's hard to guage what is happening during the night. I would like some device which would detect movement and record it, without it costing the earth. Does anyone know of such a device? The baby monitor would be ideal if it had the range. Having said all that, Mum has a VERY busy week ahead of her, though she doesn't yet know it, so if she isn't sleeping well now, she may well be by the weekend!

    Good luck Anita.
     
  15. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Quote by Anita
    When I next woke he up at 8.30 it is "goodmorning darling" - I was saying to my husband, its is as though she has a dual personality, a Jekyal and Hyde.

    Anita
    you are right,my wife has more than dual.
    I have said three wives,my own loving one,the nasy hurtful one and the pathetic old lady

    Quote from Anita
    How do you cope when they say hurtful things?
    .

    Try to remember that it is not them saying these things but the AD,they will not recall what they have said,so try not worry about it.
    Hope this helps
    best wishes
    Norman :confused:
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Anita
    regarding the form of the diary - what to record - that will depend on the person, their situation, time, what seems necessary.

    For me, the original diary was minimal, recording when medication was given, any adverse - or good - results, food taken etc. Almost a medical diary. Mostly to help me keep things under control for myself.

    Later, when things like sundowning started to occur, I stretched the net more widely, and would record anything and everything, in the hope that the medics would be interested, and would perhaps be able to help - based on my observations.

    Never true, unfortunately. They were absolutely not interested in anything I wrote. Time? Too subjective? Too challenging? Who knows?

    Several years ago, the Alzheimer's Society asked for volunteers to keep diaries for a campaign it was running. I sent in samples and got the go-ahead, and then I added in my own feelings, as by then, I was under huge stress.

    I have pretty much maintained that since Jan has been in her care home [2001], but now the diary has reduced so that I note changes in her behaviour and capabilities, and also my own feelings and expectations still.

    The diaries have helped me to report the whole range of things, when required, and also for me to review things.

    It also keeps me that much more involved than might otherwise be the case, and that is necessary for me!
     
  17. seniormoments

    seniormoments Registered User

    Jan 25, 2006
    6
    PETERBOROUGH
    Crazy Day

    FIRSTLY HI TO TWINK, LULU AND NORMAN.
    Thank you all for your replys and guidance.
    Today for me started at 04.15 am and has been a really up and down day. I have been so upset today, could not stop crying, but must admit felt a bit better after, it seemed to release something in me.
    This is the first time I have been able to get on the computer and there was so much I wanted to ask and say, but Mum is having one of her off moments. Will try to get back later.

    ttfn
    Seniormoments/Anita
     
  18. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    hi

    Hi Anita,

    That WAS an early start. You must be shattered and crying makes you tired too. Hope you have a better day emotionally tomorrow. Steve still goes to bed about 9pm at the earliest, 10:30 at the latest and then sleeps till about 9am but of course all that could change at any time. I'm going out for a couple of hours in the morning to a carers meeting here in March and he will stay here on his own. It's three and a half years since he finished work now due to the rheumatoid arthritis but at least he could set off and go and see his daughter or father then, now he can't go anywhere on his own apart from into town. He has to go to ECH in P'bro now and again and he couldn't find his way there without me.

    He's been on 6mg of Exelon per day now since August last year and scored 20 out of 30 at his memory test at the beginning of this month but as far as I can see, he is still slowly getting worse. I don't know how long the drugs might keep it a bay a little. I don't even know if they will.

    Hope you get a lie in tomorrow! Hope you feel better too.

    Love Twink/Sue
     
  19. seniormoments

    seniormoments Registered User

    Jan 25, 2006
    6
    PETERBOROUGH
    Tired And Emotional

    Hi There And Big Thanks To Brucie And Twink-sue For Your Replies.
    Did Not Stand A Chance Of Getting On Last Night, Nothing We Could Do To Calm My Mother Down. I Telephoned The Emergency Doctors And Spoke With Them, They Were Going To Come Out To Give Her Some Valium But In The End Suggested That We Double Up On The Tablets Last Night, Which We Did.
    Today Has Been Very Calm, But Every Now And Then Mum Gets A Bit Agitated, All In All Not A Bad Day, We Are Just Very Very Tired.
    Just Thought I Would Pop On Here Quickly To Reply To Your Msg, Hopefully I Will Be Back Tomorrow Night.

    With Regards To The Diary, I Am Just Noting Everything That Happens At The Moment - Cannot Get The Cpn To Visit Until 6th March - Boy What A Long Time.

    Until Later
    Ttfn
    Seniormoments/anita
     
  20. Jude

    Jude Registered User

    Dear Anita,

    It might be worth ringing the CPN and explaining your situation in detail. A wait of six weeks seems like an excessively long time to me. I do hope you are managing to get some rest.

    Jude
     

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