1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

How do i come to terms with this?

Discussion in 'Younger people with dementia and their carers' started by Amanda_H, Jul 16, 2007.

  1. Amanda_H

    Amanda_H Registered User

    Jul 16, 2007
    2
    St Helens
    Mum has recently been diagnosed with a dementia. She is going for urgent brain scan asap.
    I feel that i need to spend time with her, for the time being she knows who i am. Im finding it increasingly difficult as it breaks my heart to see her this way...i want to think of her the way i used to but its just so painful. I think im afraid to feel the pain as it makes me fear for what the future holds.
    I have tried to come on here 3 times today but have had to come out as its been so painful.
    I hope that coming on here will help me cope with my pain so i can spend some quality time with Mum before its too late.
     
  2. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hello Amanda,
    I'm glad you have been able to take this first step and post on here. I really hope that you well still be able to have plenty of good days with your mum.
    Dementia is such a cruel disease. I have found being able to talk and see the funny side as well as the depressing side really helps and keeps me going
    Love
    Jackie
    xx
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Amanda, if you find TP helpful in any way, that's the way to use it.

    To ask questions, to seek advice, just to browse among the threads. At least here you are not alone .

    So sorry to hear about your mum.
     
  4. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Welcome you have taken the first step...well done.:)

    You will find a wealth of support and information on here. It took me weeks too to get the courage to post and I'm so glad I did, and I know you will be too.

    Linda x
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,146
    Kent
    Dear Amanda, welcome to TP.

    There are no answers to help cope with dementia but you have taken the first step, even if it did take 3 tries.

    You will get so much support, now you`ve taken that step. It won`t make your mother better, it won`t solve your problems, but it will put you in contact with so many people who all know how much you are suffering.

    You will find yourself among friends who will listen and understand.

    Please don`t make 3 tries before you post again.

    Love xx
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #6 Margarita, Jul 31, 2007
    Last edited: Jul 31, 2007
    5 years my mother has had AZ , only this year , when siting in Mc Donald's does it bring back the memories of how mum was , with out so much pain.

    I've just block it out , but in Mc Donald's it brings it all back

    Mum use to wait for me after work and we would both go in to Mc Donald's, in my mind eyes I see my mother, are time together in Mc Donald's before AZ strangely now the only time I can clearly remember how my mother use to be is when I go to Mc Donald's.

    I waited for my daughter yesterday in Mc Donald's while she went clothes shopping those memories came back

    Now its becoming a confront to remember how she was , because now all I see when I look at my mother is a white cloud just slowly fading .
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Amanda

    I'm so glad you've plucked up the courage to post. It's very scary when you first get the diagnosis. You just don't know what to expect, or where you will find help.

    You have come to the best place. We are all suffering as a result of this disease, but our experiences vary so much. Whatever problem you come up against, someone will have experienced it, and will be able to support and advise.

    Please post whenever you have a question, or join in any posts which are running.

    Best wishes,
     
  8. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Hi Amanda,
    I've found this site so helpful, my family are not too good talking about my mam ( has AD & was diagnosed at 60, now she is 68), so whenever I need to talk or need advice , or sometimes a good cry, it happens sometimes, I often tried to type a new post through floods of tears! But it's so comforting there are lovely caring people here on AD Talking Point that you can turn to, anytime day or night. I'm sure you'll find a lot of the issues discussed helpful in someway, I do. Take care Rosie x
     
  9. lucy p

    lucy p Registered User

    Jul 29, 2007
    3
    Southampton
    Hi Amanda

    You shouldn't feel that suddenly it's too late to spend quality time with your mum. My mum was diagnosed 6 years ago and I felt exactly the same way as you at the time of diagnosis...but over the years various life events have happened in the family and mum has still been able to share in them.

    When mum was first diagnosed all sorts of things went rushing through my head, like she wouldn't get to be at my wedding, wouldn't get to meet her grandchildren and so on...and I've since found out she said the same things to her friends at the time...but last summer I got married and, eventhough mum was 5 years past diagnosis, I have one of the most amazing pictures of her I could ever imagine - so much life in her eyes - it was a magical moment with a glass of champagne! Watching back the wedding video I see even more glimpses of "the old her" and now I even begin to see her in me, and the way I act and hold myself!

    So please don't think this is the beginning of the end...I still remember my "old mum" but I can also enjoy time with mum the way she is now.

    Just try to keep positive...and it gets easier with time (I promise!)

    Lucy
     
  10. SHANDY

    SHANDY Registered User

    Jan 24, 2007
    26
    Hold On To Her

    my mum has had dementia for 3 years now and is in a nursing home. every time i see her and leave her i tell her how much i love her and give her the biggest hug, while she still knows who i am, i am also the only daughter with 2 brothers and me and mum were very close as well. however, she is starting to loose her memory more now , as she has told my dad she knows his face, but not who he is(married 56 years) and last night she gave me another name. i will always love her, no matter what this terrible illness does, she is stilll my mum inside.




    regards


    shandy
     
  11. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    #11 Lucille, Aug 3, 2007
    Last edited: Aug 3, 2007
    Hello Amanda

    Welcome to TP. As the others have said, I hope you find some solace here.

    You ask how you come to terms with it. Personally, I don't think I ever will. It's such a shocking illness. Even for those of us directly affected and not in the ('I know someone who knew someone who knew someone with it') camp, it is still difficult to truly grasp how awful it is. For the sufferer and the carer.

    I've managed to get my head around things (some days, not all) by trying to adapt. I've thrown myself into making sure mum is looked after (currently still living independently). This, for me, has kept me occupied. I also do other things; study, run, write ... though not at the same time! :D

    You will learn your own coping techniques - be it beating a cushion (as someone on here recently mentioned), crying, shouting or whatever. The one thing I've learnt is that talking about it and especially visiting TP, even if it's just to read posts, has helped me immeasurably.

    We can never really know our enemy (AD and other kinds of dementia) so all any of us can do is to try and do our best, whilst retaining some degree of 'normality' with our own lives. You will get through this because, you're not alone - we're here to support each other.

    Keep your chin up. Thinking of you, with best wishes.
     
  12. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    tried to post 3 times today

    hi amanda
    it is so hard to start to post it took me 3 times before i could post
    but is a very supportive site with people who know how it feels
    so sorry about mum keep on posting now you have started
    love bel x
     
  13. Vanessa

    Vanessa Registered User

    Jul 18, 2007
    5
    Middlesex
    Hi Amanda
    I have been looking here online for about the last 2 or 3 weeks and having just read your thread, feel I have the courage to respond. My Mum was diagnosed almost 2 years ago now and has only just turned 63. I am finding it incomprehensible, feel really distressed and hard to put my feelings into words really. Little things like calling her and having to say who I am, is weird. And it takes her a few seconds to work out who and where I am. (She isn't in the UK). You are fortunate to be able to spend time with your Mum. I do travel with my 2 boys to see my parents each year for a month. I don't know if being so far away makes it worse or easier?? Contemplating the future is so scarey. I have to actively focus on the 'now' and my boys, otherwise I think I would make myself really depressed. Does anyone also feel like this?
    I also feel that my siblings (I am one of 5) don't seem to be as affected by the situation as I am. May be they are just dealing with it and coping with it in a different way, who knows?
    I know how much it hurts, Amanda.

    Take good care,
    Vanessa
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Vanessa, welcome to TP. It must be hard for you, having your mum so far away. Do your siblings also live here? I think in many ways it's harder, caring at a distance. Telephone calls become more and more difficult, and may eventually become impossible.

    Does your mum have a husband? She is going to need someone to take responsibility for her.

    I don't know how your siblings feel, but I do know that it is not unusual for different members of the family to react differently, and for one member to take the largest part in caring.

    Yes, it is scary. I don't think anyone on this forum would argue with that. But there is an enormous amount of support to be found here on TP. I hope you will post again.

    Best wishes,
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,146
    Kent
    Hi Vanessa, welcome to TP.

    Now you`ve taken the first step, keep in touch. It will be very difficult for you to keep in contact with your mother long distance, and I really feel for you. There have been several members who care from a distance and they will understand.

    Take care xx
     
  16. Vanessa

    Vanessa Registered User

    Jul 18, 2007
    5
    Middlesex
    Thanks for your messages. My Dad is caring for my Mum. It is so hard for him and I can hear it in his voice on the phone, how much he is hurting and how frustrating it is for him. None of my siblings live in the UK, so again, it's communication via email or phone, and they are all pretty wrapped up in their own lives that we don't seem to be communicating much at all. I find that talking to my Mum is almost like talking to my older son (he's 2 yrs, 8 months). Now that is weird!
    I will be seeing my parents in a few weeks so I'll be able to assess how things are and get some time with my Mum in person. I know the grandkids give her lots of joy, so the more she can see them, the more I feel I am helping her enjoy life.
    It's good to know you're all out there to just share my thoughts with, even though sometimes I can't quite express myself...

    Take care all,
    Vanessa
     
  17. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Vanessa

    Just wanted to say hello and hope that you have as good a time as you can with your parents when you go to visit. Grandchildren can be a great comfort.

    I found that my young twin sons were a great blessing in many ways when Mum was first diagnosed. Enjoy each moment as well as you can. It will be bittersweet but there will be happy times.

    (((hugs)))

    Mameeskye
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    yes I also can get like that , got like that in the first few year , because all I could think about was the ending, because all people would talk about is the ending , forgetting all the good moment that can happen in the present moment in time.

    yes grandchild also bring my mother so much joy also I love taking photo.

    let us know how you get on , welcome to TP xx
     
  19. Vanessa

    Vanessa Registered User

    Jul 18, 2007
    5
    Middlesex
    Hi. Thanks for your support. I am feeling quite nervous about meeting my parents next week. Apparently Mum is away with the fairies now and her vocab is very limited. Incredibly difficult to imagine. Part of me wants to ignore the issue and hope it'll go away but the shock of knowing it won't go away, can't be cured, is just so hard for me. My father, so I hear, is really finding it too difficult now and wants to find her some care. It's scarey that it's come to that in about a 2 year period.
    Just want to express how I'm feeling.... thank you for 'listening'.
    Take care all and have a lovely weekend xo
     
  20. dolly gee

    dolly gee Registered User

    Mar 9, 2007
    47
    merseyside
    hi amanda welcome sorry to hear about mum i know how it feels but you have to stay strong and i hope you will will keep in touch as we are hear to help and share our thourghts feelings take care dolly gee
     

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