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I'm 45 and just been diagnosed with early onset Alzheimer's Disease

Discussion in 'Recently diagnosed and early stages of dementia' started by Wolfangel45, Oct 21, 2015.

  1. Wolfangel45

    Wolfangel45 Registered User

    Oct 21, 2015
    Hello everyone,

    My name is Tracey and I have just been diagnosed with having early onset of Alzheimer's disease. I have known that something wasn't right at the beginning of the year, but the hardest part for me was finding someone to believe me. My GP's just pooh pooh it cause I was too young. My memory was getting worse, I would start a job in the kitchen then something would enter my head to start a job elsewhere and then I would totally forget the first job. I would cook something then forget about it. my speech gets slurred when I get tired and I get words muddled up. Sometimes the words I write come out wrong so when read it is gobblygook. For example, if I write which then sometimes I write got instead. I failed my first memory test, and totally disgraced myself in the second one by coming extemely low, below average. I'm a qualified nurse and although I knew something was wrong for a long time I feel relieved in a way that it is something but totally devastated at the same time.

    I can't remember how to be a nurse, which is a berevement in itself. I was a good nurse as well. Over the past few months I have found out who my friends are as many believed it was all in my mind. Or they would say something like,' My nan had dementia and she remembers more then you so there is nothing wrong with you!!' Not helpful!!

    i live alone with my cat, I have post it notes everywhere reminding me things. I have a timer o my phone which goes off every two hours when I'm at home tro remind me to drink as seem to have lost that thing in my head telling me to dring. I adapte how I can - I used to have three showers in the morning cause I couldn't remember having the first two but I do a strict routine and it seems to work. I'm not over powering mysef with scent as I used to. I stumble thike I ve been drinking when I get tired as well.

    I just needed to say hello with people who unersand morew than people who really don't. The only thing I am good at is baking caks, and even that is a rigamole but I do it cause it relaxs me. I;m getting tired now so will sign off now but thank you :)
  2. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    Hi Tracey

    I'm so sorry you have to join this board but hope that we can help in whatever way we can.

    Someone on here said that their husband has a basket of his toiletries which he empties and then puts back as he uses them. Antiperspirant, toothpaste, toothbrush etc. When everything is back in the box he has finished getting ready.

    Keep posting.

    Best wishes
  3. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Just wanted to say hello Tracey and a big welcome. You have come to the right place for help and support as everyone here is lovely. Sending you a big hug and hope to chat to you soon. Xx
  4. Kjn

    Kjn Registered User

    Jul 27, 2013
    Welcome Traceyxx
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hi Tracey and welcome to TP :)

    I'm sorry you have the need for this forum, but on the plus side you'll find everyone is very friendly and supportive. It certainly sounds as though you are managing your condition well so far.....you must miss nursing so much.

    Anyway just wanted to say hello, and looking forward to seeing you posting :)

    Lindy xx
  6. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    Welcome to the forum Tracey. I am sorry for the reasons that have led to you being here, but glad that you have discovered a place where you can be you and there will always be support, understanding, love and help in bucket loads.

    One thing I do want to make clear is that in absolutely no way have you disgraced yourself. You have a disease which affects the way you process things. The test is purely an indicator of how that disease is affecting you on a given date and time. No shame on you.

    The test is geared towards certain things - but that is no indicative of the whole person. There is so much more to you than that.

    Don't dwell on what can't be done - embrace what you can do, because there is plenty that you are capable of xx
  7. Wolfangel45

    Wolfangel45 Registered User

    Oct 21, 2015
    Thank you all for your words of welcome, if that is the right word. it doesn't sound right but you will all now what I mean. For me its a place for me to openly talk to other people and not get hushed, or brushed under the carpet. I get confused moments when I do something that isn't quite 'normal' but my brain is telling me it is. Like trying to open my front door with my car fob, or not being able to work out how to close my front door. These episodes only last about 5 mins but still scary. I can't cope with being in a crowded room, like in the old days when I could folloe 2 or 3 different conversations. I can't so I zone out and then appear rude without meaning to. I have a thing on my mobile that it does the words for ne so I don't have to worry about spellings words wrong. I never answer the phone unless I know who is calling. I'm still working at the moment, of course not with patients face to face as I don't remember but I'm office based only until they can medically discharge me.

    Thank you all once again x:)
  8. john51

    john51 Registered User

    Apr 26, 2014
    Dunstable, Bedfordshire
    Hello Tracey

    It's really awful what dementia does to us.

    The things you say are all familiar. The only thing I do different is that I discovered some plastic film which is stuck up all over the house. You can write on it with a board marker and wipe it off. It saves quite so many notes.Unlike you I have the support of a loving wife who is busy trying to earn a living for us, along with three cats.

    We are all here to support you Tracey.

    People on hear are great when you feel down so post often

  9. Wolfangel45

    Wolfangel45 Registered User

    Oct 21, 2015
    Thank you John,

    That sounds like a good idea especially for me in the bathroom. I have to go through a rigid routine and then if I forget what I am doing half way through I have to start again from scratch. Very irritating :) Tracey

  10. DesperateOne1

    DesperateOne1 Registered User

    Nov 25, 2015
    Keep posting Tracy! Never give up :)
  11. kazb

    kazb Registered User

    Aug 1, 2015
    hi, nurse here

    Hi tracy, i am also a nurse and been diagnosed with this horrid desease. i have just attended a work meeting, where they want to sign me off on ill heakth, iam devastated to say the least, but also understan, drop me a line if u want to talk
  12. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    Hi Tracey first of all sorry about your diagnoses and here on T.P there are quite a few members living well with irrespective of having dementia , of course all sorts of advice on T.P you must decided if its relevant to you personally . there thousands of people in UK with a varied type of dementias but were put into the same “box call Dementia” but in fact were not the same were all individuals all with different interests and abilities you said your good at baking cakes maybe one of our T.P members Barry from Indonesia a Master Baker would enjoy a chat with you on cake making ,
    we must remember we must take control of our own destiny yes medical staff may support you that great but they are doing a Job possibly 9 to 5 your living with dementia 24/7 , whatever decision you make regards to your future living with dementia think long and hard before make that decision believe me once made its going to be final would be very difficult to change it back this only my own experience living with dementia myself for 16 years ps 57 when first diagnosed but stayed in full employment until I was 65
  13. creativesarah

    creativesarah Registered User

    Hi tracey
    welcome to our exclusive club
    I find it really helps to know there are other people out there who understand
    glad you find baking relaxing I struggle to follow recipes Barry is a master baker.
    I cook but it can be a bit hit and miss!
  14. Quilty

    Quilty Registered User

    Aug 28, 2014
    Welcome Tracey, you will find kind friends here. Please keep posting as here people understand and can help when no-one else can. You are not alone. Keep fighting my friend.
  15. cbabe

    cbabe Registered User

    Aug 5, 2015
    I posted similar info on another thread but this would help you, Tracy,

    Buy a Dayclox clock from Amazon, every review says how helpful they are and my
    dad loves his, has done since I first plugged it in. It says the day of the week, the time and the date and the month and year.

    They are grounded.

    Make a week chart on a drywipe board next to it so you can see what they are doing and when.

    I divided one into 8 segments with yellow electrical tape.

    One with general, you live here info.

    Each other labelled on the yellow tape with a day of the week.

    Then you can change the info for each day as needed.

    It grounds you and Dad loves it.

    I posted this response on another thread but wanted specifically to help you as you need to help yourself as your family are in denial and you accept you have it and are kind of coping alone.

    I wish I could give you a hug.

    I would also look up day care centres, AGE UK will come visit and assess you then collect you on whatever days and take and fetch you to their day club. Dad went for the 1st time today and LOVED it.

    BUDS dementia clubs may also be near you.

    Look them up on Google, cheaper than the AGE UK but not as much to do, but very kind and similar people but AGE UK offers all kinds of other help for the future.

    Love, Chez

    Something to do and somewhere to go with understanding and helpful people.
  16. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Just to say a warm welcome from me too.
  17. Souldancer

    Souldancer Registered User

    Jan 7, 2016
    New as well,Confused . com

    , Its so good to here so many positive comments :) I have not yet had a diagnosis ?? or any scans that everyone has mentioned ?? Tracey ,I have posted notes all over my little flat, I work in retail have done for 40years ,,my boss noticed things with me about 10 months ago,i would be doing 1 task and see something else that I thought would need doing (oh dear),and she would wonder why I was doing something else ??, I know hate till work,i have given the wrong change,bad for me ,Worse for my customers ,As for showers ,I find (at the moment) if I leave my dressing gown in the bathroom,it reminds me I have Had a shower,helping so far :) I live on my own, So must admit I do find it difficult to remember to post it note myself haha, My dad used to say ,,,, you can only do as much as you can do ,,or in our case ,remember to do ,Keep Smiling ;)

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