I don't want pity, I want to talk to someone who understands!

Discussion in 'ARCHIVE FORUM: Support discussions' started by LuluB, Jul 15, 2007.

  1. LuluB

    LuluB Registered User

    Jul 11, 2007
    I registered days ago, and since then I have been reading with interest all of your postings. I think that now I have discovered TP I may at last have found someone to talk to.
    My mother has vascular dementia. She was really only diagnosed 2 years ago, even though prior to that she had had an mri scan which highlighted a problem, and as a family we noticed definite changes.
    Up until that time, my mother was a most amazing woman. Although only a housewife, she ran the large family home efficiently and lovingly, devoting herself to dad who she has known since she was 7 years old. She was madly keen on languages and attended weekly french and spanish lessons (she even tried her hand at arabic) at the local Adult Education Centre. On other days of the week she could be found either at the Gym, local Swimming Baths or her Tennis Cub, it was not unusual for sunday lunch to be delayed if mum was having to play in a mixed doubles. On shopping trips to town, she never left the house looking anything but immaculate, heels and handbag matching. When she and dad went to a black tie event, she would outshine every woman in the room. Mother was often compared to Audrey Hepburn.

    Her decline was rapid, it started with the forgetfulness, denial that anything was wrong, misplacement of glasses, constant searching for her handbag which she had only just lain down, etc etc. Although it was behaviour that was out of character, it didn't seem worrying. As time went on, insisting on using two teabags instead of one to make a cup of tea and then replacing milk with dettol :)eek: ), not being able to manage the process of making simple meals, heating the electric kettle on the hob, constant phone calls to us children begging us to take her home (she confused her childhood home with where she had lived for the last 37 years) made us realise that there was a terrible problem.

    Christmas 2005 I decided to take advantage of the festive season and take a fortnight off from my job. The morning I was due back to work, I received a desperate early morning call from my dad begging me to come and help. He had had a terrible time with mother not sleeping and acting so erratically that he felt he couldn't cope on his own. Since then I haven't gone back to work. Instead, I became a carer for my parents.
    My mother and I have always been best friends, so when she started calling me skivvy and accusing me of wanting to steal her things, it hurt!
    She no longer took pride in her appearance, her clothes were always stained and not buttoned correctly (if they had any buttons at all), I had to raid her drawers in order to wash her clothes. It was hard, really hard to see the changes, and I found myself getting cross with her, something I had never done before.
    Still, I did have something good to look forward to. My husband and I and two young children were off on a holiday of a lifetime. We had booked 5 weeks in Oz, catching up with my husbands twin and new family. My dad wasn't looking forward to me going, but wished us well. after all I'm not an only child so he and mother wouldn't be completely without help. On the day of our holiday, I made sure I went to see them to say goodbye. I didn't know it, but that was the last time I saw my mother in our family home.
    When I was in Oz, I received an email saying that mother had gone beserk and dad had agreed to her going into respite for a fortnight as he felt unable to cope on his own and with me due to come back when the fortnight was up it seemed like an ideal solution. Well, unfortunately it made matters worse and after an aggresive episode in respite, mother was admitted to hospital. Needless to say, I felt terrible! My family kept me informed and told me that there was nothing I could do. As we were staying with my husbands family, I didn't let on to anyone other than my husband about the situation back home, after all, I had to get on with things for the kid's sake. Since then, the way I deal with mothers situation hasn't changed. I don't confide with anyone as to how I feel. I keep it all inside, the emotion bubbling away waiting to explode like I know one day it must. The guilt has never gone away, maybe if I hadn't been the other side of the world, I could have prevented her being taken away..............the tears I keep for private moments have started to fall......I must regain composure, my husband will be back from work shortly, even though he is my rock, I prefer to keep this despair inside!

    Ok, deep breath, moment has passed.

    Mother is now in a home, dreadfull to see her there and even though I visit regularly, it's hard. She still knows me it seems.

    Well, that's my story in a nutshell. If posting this message is the start of being able to cope with my mothers devastating disease, today will have been a good day.

  2. stripedtigger

    stripedtigger Registered User

    Aug 22, 2006
    Hi LuluB

    It's real hard isn't it? This site offers a lot of good advice and is a shoulder to cry on with those who know as they have been there themselves.

    How is your Dad coping? I know you feel terrible however, with the best will in the world you will never know if you NOT going away could have stopped or delayed matters. That I know doesn't stop you wondering thou does it?

    Personally I feel if you had been at home matters would have been much the same, you would probably just have felf more in control as you wouldn't have been helpless 100's of miles away, which I expect is how you felt. I am at home and have not been able to stop Dad getting ill to the point where he has had to be admitted to hospital and has been there 3 weeks now, with not much improvement.

    I try to take comfort by thinking about what Dad would have wanted, I am sure your Mum when well would have wanted you to go away and live your life, if this nasty disease has taught me anything it is live your life now, don't wait. Dad is only 60 and knows non of us, He has been ill for 3 years diagnosed and about 2 years before diagnosis with supossed depression (this was actually the alzheimer's starting). Any plans he and Mum had for after retirement have been washed away in what feels like minutes, I am not even convinced he knows who she is anymore although she says he does, she can see it in his eyes.
    We had no talking for months after diagnosis and then in the last 6 months there has been some speech, pretty non descript not making much sense and odd comments such as 'who is she?' gesturing at Mum.

    As I say it's a cruel and nasty disease. Don't beat your self up about being away and living your life - you haven't abandonned her although I can imagine thats how you could feel.

    take care & all the best

  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Firstly I think you must be a wonderful daughter to become fulltime carer. You must try to live your life. My husband has Alz. and I would not want my daughters to abandon their lives - albeit I do appreciate their wonderful support.

    You say your Mum is in a Home now - I hope that is good for you and her. But how is your Dad coping with all this?

    Glad you posted - there is a mass of support here on TP which you can dip in and out of as you wish.

    (Where abouts in Leics. ??? - I was at school in Ashby de la Zouch!!)

    Best wishes Beckyjan
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Lulu, welcome to TP.

    There will be no-one on this site who doesn`t understand. Your diary of events could be anybody`s and everybody`s, who has had experience of family members with Alzheimers/Vascular Dementia.

    The guilt is common to most, but I can say with all honesty, nothing about this terrible condition is your fault. If you`d stayed, if you`d gone, it wouldn`t have made any difference. Please do not waste precious energy on guilt. Save it for far more important things.

    The only thing I`d question is your need to keep everything bottled up. You are not superwoman, you are not made of stone, you are not a robot. Upset, upsets you, why do you need to pretend it doesn`t.

    I held onto my emotions because I was afraid once the dam burst, there`d be no holding back. But it didn`t happen that way. I cried and I still cry, because dementia is surely something to cry about.

    I truly hope you will find the support you need here on TP. Everyone will understand, and if you shed a tear whilst you write your posts, or read your replies, you will have the privacy you require.

    Keep in touch.

    Love xx
  5. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Lulu

    You won't get sympathy on TP, it's not helpful, you will get understanding by the bucket load.

    Tears should not be kept for private moments but to show others (particularly your loved ones) the depths of your feelings and to relieve your pent up emotions. They are a safety valve and are vital part of our toolkit as carers.

  6. dolly gee

    dolly gee Registered User

    Mar 9, 2007
    Lub hope you dont mind my calling you lub I can agree with all replys to your plight i also went through the same with my mum ,i looked after her for a while but it comes to a point you say to yourself like i did it cant go on .It is very hard to put parent in a home and to see them disapear into a world of there own later i had my sister to cope with.Ihave worked with people with dementia for some years now so you take care god bless dolly gee
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    #7 Margarita, Jul 15, 2007
    Last edited: Jul 15, 2007
  8. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    Hi Lulu

    I hope you have realised that when any of us reply to your post and say that we know how you feel it is not some empty platitude but a genuine sharing of what you are going through right now.

    I have real guilt issues at the moment and, like you, was bottling it up completely. I became more and more stressed as the feelings built up and lost all sense of perspective. It had a bad effect on my state of mind and my physical health until I started to feel really ill - very scary!

    I first opened up here on TP and the wonderful words of support that came back seemed to lift a weight from my shoulders. Within a few days I had explained everything to both of my brothers and they were fantastically supportive.

    I urge you to talk to someone about how you feel - your husband, a close friend, someone you trust. It can't make you feel any worse than you already do so you've got nothing to lose.

  9. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    don't keep it all inside

    hi lulub.Guilt.what a word.don't ever feel guilty for something you can't change.It is a swine of a disease that affects more than the person themselves.from reading your post you are more than a caring dughter and should pat yourself on the back.I am only just coming to terms with my dad having a problem and thats without a diagnosis yet.stay with TP and you will get all the support you need.have a rant a cry or just a chat.i have only just joined this month and have found everyone so kind but at the same time they don't tell you what to do,just advise.its a wonderful site and i have joined a friend whose husband has alzheimers in organising a fund raising night.plenty beer i hope!speak to you soon love elaine.x:)
  10. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Lulu,
    So many good replies to your thread - I hope you find comfort and help in each one. Just adding my "sixpence worth" . . . . !

    DO NOT hold it all inside - please talk about it, ideally to someone who is a professional and can help ease your burden. No-one can be surprised that after two years of full time care of your Mum (and coping with all the horrible aspects of this disease) you are now emotionally devastated.

    I would liken talking to someone to getting a cast on a broken leg! Yes, a broken leg will heal in time without a cast - but it will never be the same as before and will always be painful. So - yes, you can "battle on alone" and eventually overcome this awful feeling, but will you be the same and will it always be painful???

    Talking to someone won't take away the pain if your Mum's disease - sadly, nothing can do that. But it CAN help you feel better, deal with the guilt, and go on with life. I'm sure this is worthwhile, not only for you, but your Husband, your children, your Dad, and everyone who loves you.

    Remember that we on TP are here for you. Thinking of you and sending you caring wishes.
  11. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs

    So many of us here on TP could have written your post about your love and despair about this dreadful disease, if we had the composure to do so.

    I am full of admiration for you, giving up your job to care for your Mum and support your Dad. I have spent the day with my Mum and Dad (who has been diagnosed with mixed dementia) and came home at screaming pitch. I know I couldn't do what you have done.

    There is sympathy here on TP but not the glib if well-meaning sympathy we all get from people who don't have a clue (and I hope they never have). But the sympathy of people who understand because they have been there. And we are all here to listen and learn.
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    No good at titles

    What a wonderfully loving person you are. You gave up your job to care for your mum, you admired her in her youth and adulthood, you have probably inherited many of her attributes, you were interrupted in your journey of a lifetime to Oz and did your best, and you bottled it all up.

    Oh, my love, what a burden for you. Cast off any guilt pronto (I'm not good at gentle stuff, sorry), tell yourself you could not do anything all those miles away, and also remind yourself that you are a person with needs too, and if you need to cry or scream, then do it, don't bottle it up cos that does no-one any good in the end.

    You can't change the situation, your mum has VD, it is there. Think back on the wonderful person that she was, and elements of it will still be there. My mum was totally different, a real working class woman with no style or flair at all. She is currently in an assessment unit and looks the dowdiest of the lot, there is a lady in there who is clearly stylish but doesn't quite make it. It doesn't matter., they are all in the same boat and mum has made "friends" with people a million miles away from her in social status etc. What matters is that your mum is happy wherever she is. She might have lost her panache, but if she is happy that is what is important. And you will contribute to her happiness.

    My heart goes out to you.


  13. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Dear Lulu,

    Let me repeat what others have already said - it would not have made any difference if you were in Oz or at home when the crisis struck. The sad thing is that your dream holiday was shadowed with knowledge of your mum's illness' progress.

    Also, let the emotions out. Have a huge cry, one of those sobbing, nose running, hiccoughing, blubbering ones. You need to get these emotions out. I think Nell's advice of speaking to a professional is excellent. It's not good for you to keep things bottled. Once you start, you'll probably cry for a while but don't worry about that. Keep coming here and cry with us. We'll keep you company.

  14. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Lulub

    There's loads of brilliant advice in the replies already posted. I hope you feel that you can come back here anytime and let off steam, because it's something you must do. If you keep it to yourself, you'll make yourself poorly and will be no use to your mum, your dad or your own family.

    I, personally, have found posting on TP and talking to others has helped me no end. I'd go as far to say as it's kept my head above water when I thought I was going to drown.

    Lifebelt is here, just catch!
  15. Hi Lulu,

    Ive found amazing comfort on here Mum mum also has Vascular Dementia my mum is 52 and im still really struggling to keep it in my mind that this is how mum is now. She's also in a care home even now as i type it i cant belive it. If you're ever feeling low i can lend an ear.

    Take Care

  16. DickG

    DickG Registered User

    Feb 26, 2006
    Hello Lulu

    I made a mistake in my last posting on this thread, it should have read " You won't get pity on TP - ". You will certainly get sympathy. Please accept my appologies and I promise not to post in future after a glass or two.

    I will eat a large portion of stumble pie.

  17. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007

    Where would we be without humour & typos!!!

    Your post made me smile! (and we all need a bit of that!)

    Gill x
  18. connie

    connie Registered User

    Mar 7, 2004
    I can so identify with that:

    Am gonna put that in my favorites.

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