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I don't know what to expect, I'm scared.

Discussion in 'Recently diagnosed and early stages of dementia' started by Shazzy67, Feb 25, 2015.

  1. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015
    46
    Selby
    My husband was diagnosed with Alzheimers yesterday and it all feels a bit unreal. I don't know anything about the condition and don't know what to expect. At the moment it seems to be just his short term memory that's affected, things like forgetting why he came into the kitchen or where he's put things. Also just general confusion, i say something to him and he forgets a minute later, i can see the vacant expression when i speak to him and have to slow down and break things into 'bite size' chunks so to speak. I admit to feeling very sorry for myself at the moment, my son was diagnosed as Bi-Polar 12 months ago and that has been hard so this has just left me feeling as though i have nothing but worry and heartache to look forward to for the foreseeable future...pathetic / selfish i know but i just feel so very very sad. :(
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,861
    Female
    Scotland
    In the first year after my husband was diagnosed I felt relief because I now had an explantation for his odd behaviour and judgement. I threw myself into the Alzheimers groups locally and built up a lot of contacts for information and just social support at times.

    The second year has been much more demanding on me and I am glad that we did so much and met so many people because believe me I need them. I would urge you to accept any help and invitations to join in local groups. As his condition worsens you will need to be able to access those who know and understand what is needed.

    Good luck.
     
  3. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015
    46
    Selby
    Thank you Marionq
    We've been referred to a support group already and i will as you say take any help and advice i can get. I'm not very good at not being 'in control' of things and i think that's what i find most scary, watching him get worse and not being able to do anything about it. It's very early days and i suppose the more i find out the more i'll be able to cope so i'll look at this as the start of a very big learning curve. Thanks again for the response
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Hi Shazzy welcome to TP
    I think the best thing is to get a cup of tea (or something stronger) sit down and have a trawl through the site all of our stories are on here somewhere.
    In short there are a few things you need read up on;
    Finances; are you entitled to any benefits, council tax reductions, you need to arrange your finances while he still has capacity, get all the bills in your name and separate out your money. Even with a Power of Attorney (which is something you need to get) dealing with banks and utilities if you're not the actual customer can be a nightmare.
    Should you move: a lot of people do, downsizing to somewhere easier to manage or to somewhere more suited in case he loses mobility, access to things like shops, doctors, hospitals and the like specially if you don't drive.
    How will you copy emotionally, it's something you need to think about, many on here like me spend 24/7 with their partner (or relative) and it can be stressful sometimes.
    My wife was diagnosed 4 or 5 years ago but it was only 9 months ago I gave up going to work and started working from home as she hit the point where I couldn't leave her alone safely but no 2 people are the same, she was diagnosed in her mid 50's and it has progressed much slower than it seems to do in older people, there is no definitive list year 1 expect this, year 2 expect these things to happen everyone is different.
    As I say sit down and have a read it's all on here somewhere then just ask questions.
    It will take a bit of time to get over the shock of the diagnosis, it is a life changer and it's for you to manage the changes as there isn't much in the way of help from the NHS.
    K
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,598
    Female
    Dundee
  6. Dazmum

    Dazmum Registered User

    Welcome Shazzy, though I'm sorry you've had to find us. Before you read through some threads, can I tell you what I read here several years ago now, and that is 'once you've seen one person with dementia, you've seen one person with dementia', it's really important to know that everyone is different before you get too upset reading threads.

    You've come to a great place for advice and support, TP is a lifeline to many, and can help you be prepared for what might happen. You can also have a good rant or be upset and can always be sure someone will be here for you, either with suggestions or just sympathy and empathy, you aren't alone xxx
     
  7. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015
    46
    Selby
    Thankyou

    I just want to say thank you for the responses for the simple reason i really don't feel so alone any-more. There is a 25 year age gap between me and my husband, though we've been married for 28 years it's hard because everyone i work with or no socially who is my age have have no experience of this, or they are 're my husbands age and don't see things from my perspective. i have spent virtually the whole day reading on here and the over-riding message i'me getting is that this 'condition' is very subjective, and that in itself has made me feel better. i don't know what's going to happen so i guess i'll just deal with it as it comes and take the advice of making use of all the help i can get, this was my first port of call and seriously i already feel better about things than i did this morning so thank you :)
     
  8. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015
    46
    Selby
    Thank you so much, yesterday alone is just how i felt now just spending the day reading the posts on here has helped. So appreciated and many thanks.
     
  9. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015
    46
    Selby
    Thankyou, i admit to taking the first advice literally and am typing under the influence of a bottle of red. i just wanted to say thank you, i'm quite shocked that people have bothered ( i don't do social media) Right now i'm hovering between smiling and crying but i think i'm still in the overwhelmed / in denial category so am going to bed and will start again in the morning. Thankyou again for the good advice.
     
  10. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    #10 lin1, Feb 26, 2015
    Last edited: Feb 26, 2015
    Hello Shazzy. Welcome from me, though I am very sorry of your need to find us.
    I have never wrote fully of the bad times with mum on here , mostly because those time happened before I found TP. I found the support and understanding on here wonderful.

    I suggest you make as many good memories with your husband as you can .
    Their is no reason why you should stop doing things that you and you husband enjoy, just because Dementia has entered your lives , we have one member who's husband has just started walking football , he is in his eighties , he also enjoys painting and singing for the brain.

    My advice to you is, not to wait till you need help to ask for it.
    their is help out their but it rarely comes knocking on your door, also remember the squeakiest wheel gets the most oil

    Personally I found the various charities really tried to help us , So do contact Age Uk, formally age concern
    The Alzheimer's Society
    They both know what is available in your area , can do a benefit check, help with form filling etc.
    Age uk may run a day centre , cooked meals, toenail cutting coffee mornings .
    your local branch of the Alzheimer's society, may run courses and often run Dementia cafes, which are much more than cafes

    Amongst other things you will find the Alzheimer's national helpline nu here .
    http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

    National nu for Age uk http://www.ageuk.org.uk/

    Admiral nurses are like Macmillan nurses except they specialise in dementia
    Sadly though growing they are still few and far between, they do have a national helpline ,
    http://www.dementiauk.org/information-support/admiral-nursing-direct/
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hello Shazzy

    If you can make a decision like this so soon after diagnosis and after reading a few supportive posts you will be fine. It`s the best decision you could have made.

    There is no point fighting the illness , it`s there and has to be attended to. Save all your energies for managing as well as you can for both your husband`s sake and your own.

    There are so many of us who can identify with you. This is where you come when you need help support and feel isolated.
     
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,598
    Female
    Dundee
    Hi again Shazzy. I just wanted to say I know how you feel! My husband is 21 years older that me and I know what you mean about friends of your own age.

    Good luck it sounds as if you have the right attitude. I look forward to seeing you around the forum.
     
  13. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015
    46
    Selby
    Just another thank you to anyone i might have missed. Hubby starts his meds tonight so here we go on the 'journey' so to speak. I get the feeling i'll be on here quite a lot from now on so not goodbye but see you later :)
     
  14. Jester Bear

    Jester Bear Registered User

    Feb 25, 2015
    3
    North Devon

    I know how you feel. I seem to be always in the wrong, he says I don't understand how he feels but that cuts both ways as he has no idea how lonely I feel. He is not the same just seems to shut me out and go sort of blank. Sad is a really good way to describe how I feel too, don't know what to do but somehow life has to go on and I guess we just have to make each day as good as we can. Sounds easy but I know its not. Good luck.
     
  15. Beate

    Beate Registered User

    May 21, 2014
    11,719
    Female
    London
    There is 27 years between OH and me!

    A lot has been said already. Get the financial side in order (power of attorney, will, Attendance Allowance), find out what help you'd like and is available then shout very loudly to get it (needs and carer assessment are a must), and don't forget the social side: the Alzheimer's Society are invaluable with their coffee club, carer forums and Singing for the Brain.

    Good luck on your journey!
     
  16. Frederic H

    Frederic H Registered User

    Apr 1, 2015
    75
    Devon
    Just starting and the driving

    after a year of tests the Doc said that he is sure in three months time he will confirm that my wife has dementia/Alzheimers.Not quite sure what the difference is.
    I asked him about driving he said just restrict it at present and possibly in three months time when we have another test then tell DVLC.
     
  17. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,497
    Female
    England
    Hello Frederic and welcome to TP. Sorry your wife is having problems and you have a wait until you get an answer.

    Dementia is the name of the disease like cancer is a name and like cancer there are many forms of the disease, Alzheimer's being one of them. Testing helps to define which form but sometimes this is not all that clear and a good educated guess gives you an answer.

    Once you have a diagnosis then you can get help and advise. Please use the forum to ask questions or just chat about your feelings as you wait for the results.
     
  18. Mollygoose

    Mollygoose Registered User

    Dec 19, 2014
    52
    Lincolnshire
    Learning

    Hi there ! Read up and learn everything you can ! You can send away for info ! Libraries have info ! Mt mother has dementia and is 89yrs Young and I have looked after her for two years now and still am doing ! Sorry to say this but the condition will only get worse over time ! So chin up and be ready for the challenge ! X
     
  19. Hootstoots

    Hootstoots Registered User

    May 18, 2015
    15
    Worthing,West.Sussex
    My Dad has just been diagnosed with Alzheimer's.

    Good Morning all,Dad has been poorly for a little while,he is 67 years old and yesterday we finally got the diagnosis that we have been waiting for for a while.
    My Mum is very positive,which is great,but I just wondered if anyone can help us with what to expect maybe over the coming year.
    He will be on a one-a-day tablet to start off.
    He already uses a Zimmer frame when getting up and a stick to help him steady himself when he walks.
    If this is only mild/early stages Alzheimer's,then I'm so scared.
    We are a close family and I have a sister(& we both have respective other halves) which can only help right??
    Thanks for reading and for any advice offered.
     
  20. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    91
    My husband had his diagnosis about 18 months ago. He's 10 years older than me so not such a big gap as some of you.

    He has very little short term memory which drives me bonkers ! I can more or less tell you what he's going to do/say to each challenge he has on a daily basis.

    Since his diagnosis , he's also had colon cancer and been diagnosed with a heart problem which has meant he can't have any medication for his dementia. The heart consultant has said we'll leave the heart problem until it gets worse !


    I'm wondering if we could set up something either on here or perhaps FB where we can chat about ordinary things and not dementia all the time. Perhaps make new friends etc so that we don't feel alone.

    Any thoughts or suggestions ? What does everyone else do ?
     

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