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.

Missing someone thats still here!!

Discussion in 'Younger people with dementia and their carers' started by Lauren, Feb 24, 2011.

  1. Lauren

    Lauren Registered User

    Oct 13, 2006
    34
    Dorset
    Wow graduation day on monday and i never thought how upsetting it would be to not see my mum there being the proud parent!!

    Due to mum not knowing who she is, who anyone is, where she is, doublely incontinent, unable to communicate, very angry all the time, unable to eat and walk she was unable to attend. In the last stages of this terrible disease!!

    Everyones mum and dads were there taking photos and it was so lovely to see appart from me thinking the whole time i wish mum was here!

    What got to me is when i was having my professional photo was people saying to me are you not going to have a family photo, well i wouldnt say a picture of myself, dad and my boyfriend was quite my 'family' portrait!!

    I now dread every major event in my life as i will just have a constant reminder that my mum will never be able to share these experiences with me!!
    The carer said to me 'oh it must have been hard not having your mum seeing you graduate on monday' at time time i wanted to cry im suprised i didnt i had to walk away very quickly saying yes it was very hard!!

    Im struggling to cope again! I try to be strong but my mum has finally gone and is a body with know one inside!!

    I miss her so much!!!!xxxx
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello Lauren:
    You got through your graduation so that is good. I am sorry about your Mum; I feel similarly about my husband but know he would wish me to continue my life as happily as I can.

    You are already in the grieving process and sadly with dementia that can go on and on. I am sure your 'real' Mum would be wanting you to lead a happy and fulfilled life. For her sake be kind to yourself but its ok to cry too.

    Stay with TP too as here you have people who understand so much of how you are feeling.
    Best wishes
     
  3. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,223
    Just sending you congratulations and sympathy in equal measures Lauren. Your mum would be proud of you, if it weren't for the dementia. Stay strong.
    Kind regards, Deborah
     
  4. Worried Milly

    Worried Milly Registered User

    Feb 19, 2009
    26
    Be strong

    As a Mum who has been in that position, I know how proud your Mum would have been. My youngest son is now coming up to graduation at the end of this University year - and his Dad will hopefully still be able to stand with us in the photos, and might just be able to realise what is happening. All so sad.

    Be strong and know there are people who send love and hugs.

    Milly x-x-x
     
  5. Bronwen

    Bronwen Registered User

    Jan 8, 2010
    602
    Bristol
    Well done for graduating, it couldn't have been easy with worrying about your dear mum all this time.

    On behalf of all the mums here, we are all proud of you and knowing what a loving family you are, I know your mum would be filled with pride and love.

    It is so hard for you approaching the landmarks in your life without being able to talk to mum about it, but I am sure your loving memories will help you..

    Keep in touch...you always have us

    love
    Bronwen x
     
  6. donkey

    donkey Registered User

    Aug 16, 2009
    1,225
    sutton coldfield
    well done lauren, it must of been sad for you not having mum there. when nicola graduated last year dave did come with us but the day was very stressful for us all. when becky graduates in 3 years time dave will not be there so she will be very sad too. im sorry that you are going through this you are so young just like my children. take care of yourself love xxx
     
  7. sussexsue

    sussexsue Registered User

    Jun 10, 2009
    1,528
    West Sussex
    I watched my 3 kids graduate and felt so proud and happy for them. Believe me that is just how your real mum who used to inhabit her body would have felt. She would also have been so sad that she couldnt be there for you today. But she is inside you. You are part of her and you know what a special day it would have been for her.

    bighug.gif
     
  8. MandyW

    MandyW Registered User

    Oct 11, 2005
    24
    Newbury
    Oh God Lauren, Its awful isn't it. I could cry everytime a friend says they are going shopping with their mum or just seeing a nanny with her grandchild(ren). I'm missing out on so much and I feel sad and angry about it. I miss my mum every day but it is highlighted on special occasions such as your graduation.
    I've started seeing the Mothers day cards in the shop too and that fills me with dread. The amount of times that I have walked out of a shop cardless and crying!!
    There's nothing that anyone can say to make it feel any better. I wish there was, as then I could say it to you.
    Well done and congratulations. Regardless of everything that could have of broken you on the way-you have achieved your goal!
    I feel your pain.
    MandyW
     
  9. crazychick

    crazychick Registered User

    Feb 18, 2011
    9
    portsmouth hants
    Big hug

    Hey There Lauren

    Congratulations on your graduation.
    My heart goes out to you, I'm sure your mum would be very proud to know that her daughter has succeeded and followed her dreams.
    Big hugs to you
    x
     
  10. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    Lauren, I am so sad at reading your post. I wish you would think of us all there with you at your graduation, lots of us are mums, and I know that none of us would want our daughters to be without us on such a special day. Being with my daughter on the day she graduated was the proudest day of my life, I am pretty sure your mum would be the same.

    Have a lovely day and don't ignore the fact that your mum isn't there even if it makes you all sad. Make sure she is still part of it in your thoughts. I hope this makes sense, it is very difficult to express it.

    Love Pippa x
     
  11. RAMONJKD

    RAMONJKD Registered User

    Nov 7, 2010
    9
    Tonbridge
    I know how you feel, My mum has missed many important events in the past few years. My Sisters wedding and our son reaching his second & third birthday to name a few. I just try to gain comfort from the fact that if she wasnt ill then she would be so happy and proud of these events. I just try and picture her before she was ill and how much she would have loved to have been there. I think also its a good target to set yourself in life to strive to achieve great things and reach the milestones that would make your mum so very proud of you.
     
  12. sunray

    sunray Registered User

    Sep 21, 2008
    1,420
    Female
    East Coast of Australia
    I understand too

    There have been a few births, deaths , engagements and even a marriage in the family since my Mum has been in the severe stage of dementia. I know how much you just want her there to share in your joy, the celebrations and be a part of it all.

    Congratulations to you and commiserations too that your Mum could not be there.

    Sue.
     
  13. makalu

    makalu Registered User

    Nov 2, 2008
    72
    West Sussex
    I know how you feel, my dad is 62 has picks disease and lives in an emi home. He waited 60 years to become a grandad, and two months after the baby girl came he got diagnosed and went down hill from there.
    Now i have a baby boy too and dad still doesnt realise he has fulfulled his dream. I feel for you.
    I dont ever want to go to another wedding, see another father stand up and say how wonderful his daughter is, i will never have that and it makes me sad. When i look at my friends dads, hanging out, and working in the garden with them...all the stuff me and dad used to do...its heart breaking.
    BUT i do thank god for the time i spend with dad and the relationship we have now is very different...and the fact that that kids visit him and know him and have had a chance to love him too.
    Keep smiling. Puts life into perspective doesnt it...? X
     
  14. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Old Person Envy

    Oh I know Lauren! In my case it was my Dad, though I was lucky that at least he got to see my first graduation. I went back to Uni years later when he was fully in the grip of dementia but I didn't bother attending the ceremony for my second graduation, I wish he had gotten to see his daughter get her second and third degrees nevertheless.

    It was also depressing when I got engaged to be married and as my Mum put my Dad on the phone so that I could tell him, all I could hear on the other hand was a strange chewing noise and my Mum telling Dad not to chew the hand piece!! So I sat there after telling the air that I was engaged and tears just rolled down my cheeks as I listened to him chewing...

    I didn't have a real wedding because I knew I would just be tears and tears if my Dad was there. I probably didn't really marry wisely either because I was so lacking in joy I settled for what I really didn't want, he was a good man, but I had given up on the idea that dreams can come true so made the wrong choice there...

    One thing good I guess about the dementia, my Dad didn't get to be fully aware (if aware at all) that his youngest daughter got a divorce some years later, the only one in the family to have done that!!

    I came to call my pain, in a joking way, 'old man envy'...because it wasn't just the absent father I missed, it was this pain in me that just wished I could have gotten to see my Dad grow old like he was supposed to, so every time I saw a man older than 60 I would find myself wishing my Dad could have got there...

    lol I goo and gaa over old grandaddy looking men, like other women do over babies, I so want one of my own!!! Weird! :p

    Dad finally passed away this year though after 12 years of the disease, and I am now 36, a divorcee thinking of unwed motherhood because dementia I guess made me not care about conventions, you just gotta take joy when you can and the rest be damned!

    I miss him though now, despite it all, I didn't have the ordinary Dad that my friends had, but although he couldn't communicate he was still my Dad and he was there. He's gone now and there is an unbelievable difference. I admit that this kind of missing him isn't for me as painful as the missing him when he was still here was, but at least before I could still hold his hand when I wanted to, have a moment when I could hope that he was still a little bit aware at times. The only reason I don't wish him back is because I think he wanted to go when he eventually did leave, but I would have him back in a second, dribbling and incontinent if that was what he wanted.

    God I want to give my Dad a cuddle!
     
  15. AdAstra

    AdAstra Registered User

    Apr 24, 2011
    3
    N.Ireland
    First post

    Hi Lauren, im so sorry that your graduation day was upsetting. I will be graduating in July, and although it will be hard I hope that my Mum can attend. She is still in the moderate stages of dementia so hopefully she can grasp some meaning from the day. It's all so hard isn't it? Especially seeing other 'normal' mums and dads everywhere. But well done on staying strong and making it through, im sure your mum would be so proud :)

    And Nat, I love your description of 'Old man envy...' it describes perfectly how I feel anytime I see someone of my mother's age (59) or older, and see all the things they can do that she can't. Thank you for shedding some light on this for me, you are definitely not the only one gooing and gaaing!!
     
  16. nimbus11

    nimbus11 Registered User

    Apr 22, 2011
    79
    Hampshire
    I know this is a different scenario, but when my dad died very suddenly and unexpectedly when he appeared to be as fit as a fiddle at 67, every time I saw a grey haired man after dads passing I felt what were they doing being alive and my dad was dead - it is a normal thing (I hope) to feel resentful of what others have and take for granted, but these awful feelings will pass with time and your memories of the goods times will come to the fore and make you smile (and cry sometimes..) but be grateful for the good times you all had because some people are never lucky enough to have had what you also once took for granted.

    xx
     
  17. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    I know exactly what you mean - yesterday I had to bite my lip as I heard a young girl shouting 'watch me Grandad' as she flew a kite. My children will never know the joy of playing with Grandad.

    I upset my husband a few days ago as I set up a 'just giving' site (for the Alzheimer's Society, obviously!!) and said we are going to climb a mountain 'in memory of Dad'. Dad is still with us in body but he has been late stage for over 2 years now and cannot speak or walk, and has no idea most of the time that I'm even in the room. My husband said I was insensitive as 'he's not dead yet...........'

    I miss him every day, I miss getting a phone call, or a birthday card, a meal together, a conversation, a walk in the woods. It will never go away, and I'm not yet ready to remember the good times as it's too painful to remember what I've lost. But I know peace will come at some point, just not today. You are definitely not alone xxx
     
  18. sunray

    sunray Registered User

    Sep 21, 2008
    1,420
    Female
    East Coast of Australia
    I miss my Mum too

    I go and visit my Mum three days a week in her nursing home, about an hour a visit. I sit next to her and hold her hand. She has been in the severe stage of Alzheimers for the past three years. We have had a few "dying" moments but she rallies again. She has had some form of dementia since her mid-seventies actually diagnosed in 1999.

    I too miss the personality that is still there. She is my Mum but not my Mum.

    Now we have our son's wedding in October and Ray is in the middle stages of Alzheimers and my son-in-law, not my husband will do the welcome-to-the-family speech. I will miss dancing the bridal waltz with him.

    Dementia brings so much sadness.

    Sue.
     
  19. Lauren

    Lauren Registered User

    Oct 13, 2006
    34
    Dorset
    Thank you

    Thank you for all your replys they all mean so much!!
    Its the little things in life that really count i suppose!!
    I think everyday of all my future major life events and that mum wont really have a clue about what is happening! But in my heart i know how proud she would be!

    Take care everybody! Dont let this dreadful disease also ruin your life because thats not what they would have wanted!!!

    Laurenxxx
     
  20. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Well said Lauren! I'm in no way a religious person but I do feel that 'Dad' is with me in spirit and sees all the good things. That way I know neither of us is really missing out xxx

    Kate x.
    :D
     

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