Sort of need to get this all off my chest

Discussion in 'Younger people with dementia and their carers' started by Cymbaline, Aug 31, 2007.

  1. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    36
    #1 Cymbaline, Aug 31, 2007
    Last edited: Aug 31, 2007
    My mum first started developing symptoms of Alzheimer's when she was in her late 40s and I was about 20. Unfortunately for my family, we are all too aware of what Alz does to people as my maternal grandmother died from it as well though she developed it a bit later in life. I really don't want to think about the genetic aspect of it as it's just too terrifying.

    My brother and I are extremely lucky in that our father is a full-time carer for our mum and we can't begin to understand what he's going through. He's also suffered a serious illness and I'm praying that the tests he's having for another serious illness don't prove to be positive.

    I hope you all forgive the next bit. I know it sounds like a whinge against the world, especially since most of you are carers who have given up so much.


    What I've realised though at the ripe old age of 33 is that I've allowed my mum's illness to stunt my own life. I'm lucky enough to have a degree and a reasonably well-paid job which takes me away from home. That's what saves my sanity. I come home most weekends to give my dad a break and to see my mother. Despite what she now is, I still love her very much. I just wish I had better memories of her when she was a vibrant, intelligent woman. Those memories have been eroded down the years. Maybe this is nature's way of protecting me - I miss my old mum so much I'm starting to cry as I type this.

    It's starting to bother me that whilst my friends/peers have partners and houses and babies, I'm single and going home every weekend. In that way, I'm no different to my 17 year old self going to college. I know I've only myself to blame for not getting around to saving up for a deposit years ago. I think I've missed the boat on buying a house because property prices have gotten so high in Ireland that even if I was to get a mortgage, it would take out half my monthly salary. I admit to being a teeney bit jealous of my brother (who never came home every weekend) who now has a steady girlfriend. Sometimes I feel so lonely that I don't have someone special in my life and I think that at 33 it's not going to happen. And yes I know that makes me sound desperate and pathetic and whining but it's much easier to be honest here because none of you know me.

    I wish I could cut loose from home and not have to come home every weekend and not feel guilty about it. I suppose at this stage, I wouldn't know what to do with myself if I didn't spend my Saturdays and Sundays helping out at home. Don't get me wrong - I am willingly doing it out of love for my parents but I think I'm torn between trying to help them and trying to get on with my life without worrying about what's going to happen to them. Unlike most of my peers, my parents' health is a constant worry. Most other people I know who are worried about their parents' help are 10 or 15 years older than me but that's the card I've been dealt.

    Despite this whiny post, I do manage to keep a good side up most of the time but I have to admit to looking a bit further down the line and wondering what next?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Dear Cymbaline,

    However much you love your parents you must not sacrifice your own life for them, for when they are gone, you will have no-one.

    You can still continue to be a loving daughter, visit them regularly and give them support, but at the same time make a life for yourself.

    Is it really too late for you to get yourself on the property ladder? If you can`t afford a mortgage for a house, have you considered a small flat? If you live away from home, do you pay rent, for if you do, you could pay a similar amount, perhaps a bit more, for a mortgage.

    You have put your life on hold, but it might be the right time now, to start living for yourself, a little. If you don`t, you could became resentful, and that`s not the way to go.

    There`s always room for compromise. I think your parents would be very upset to feel you`ve given up on what you really want, for them.

    Make changes now , it`s never too late.

    Love xx
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #3 jc141265, Aug 31, 2007
    Last edited: Aug 31, 2007
    Almost me

    Cymbaline,

    I am 32yrs old, 33 this December. Dad is now mute, incontinent and can barely walk. Its been 10yrs now since his diagnosis, so I know how you feel.

    Unlike you I am luckier in that I did get married eventually (though that got put off for a long time because of the Dad situation) and I did manage to get a house (property prices here in Australia are much much more affordable I suspect). But still I know why you are hurting so, and why you feel the way you do.

    Dealing with this disease in a parent at such a young age, steals your own youth. Because of it, I doubt I will ever have my own child, its just been put off for so long and then I don't know if my heart can bare to love someone so much after what I've gone through with Dad.

    Not only that, but your world revolves around the illness and I have found I often have difficulties relating to my peers...just the other week for example I was invited out by friends, and I was going to go, but after spoonfeeding Dad at dinner time, I decided not to, because I knew I'd be sitting there thinking about him, and listening to them all talking about day to day fun, and I would just be a frightful bore.

    You feel like you have been orphaned, you cannot expect your other parent to be there for you as they have enough on their plate, but yet you are not allowed to grieve. And even if you did, when would it stop? So we carry on as best we can. Often you also have to become like a parent to your own parents, both the dementia sufferer and the carer.

    Recently though I have made a huge decision. Perhaps many wouldnt approve, but I am moving, more than 2000kms away. I have decided it is time to live life again. I was worried that I would feel too guilty, but I seem to have come to a kind of peace. My husband is already a father and he has helped me to do this, as he told me that as a parent, he would never want to see his daughter sacrifice her life for him. I think about my father, that long ago father that I once knew and I know my husband is right. My Dad loved me, he would have wanted me to fly, be everything that I could be, this quiet slipping into a life not planned is not what he would have wanted for me.

    You and I, we aren't heartless children...for if we were why would it hurt so bad?
    Its not too late, take my hand (;) ), and dare to dream again.

    Bearing in mind however that again you have a greater difficulty than me, in that your Dad may also be sick. I hope that you can find away to find hope again.

    Wishing you luck and happiness,
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Dear Nat,

    You have made a brave decision and I wish you well.

    Love xx
     
  5. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    To Cymbaline and Nat,

    I too understand how you feel - mum was diagnosed just this year although she has been suffering with it for four years (since the age of 56).

    As it turns out I married young so I had "my" family as it were before mum became ill.

    However, it does affect your life - if you love your parents how can it not? I have also experienced times were all I could think about was mum while everyone else was having fun. It affected the birth of my daughter because things went spectacularly wrong and both she and I could have died but mum just didn't react to it at all - good in some ways for her but kind of upseting to know your mum doesn't care if you die.

    It's never to late to have all you dreamed of - I've only come back to this realisation lately after counselling which has helped me to set up boundaries between my life at home and my life with mum and dad - a difficult boundary to set as they live round the corner from me and both appear on my door at the slightest sign of all not going well - as you can imagine as time goes on this becomes more frequent!!:eek:

    Anyway, as others have rightly said, yes you need to offer support to your parents as this is such a difficult time for them, in my book especially for the one doing the caring, but you cannot bring your own life to a grinding halt to do so and nor would your parents want you to.

    They would want you to have everything your heart desires and you should want that for you too.

    We all feel such guilt because all that we do to help feels so inadequate, especially in the face of their pain but it is so important to still make a good life for yourself - your parents will not benefit by you depriving yourself.

    As Nat said you must be brave, take a chance and follow your dreams - you can do it while still giving your parents support.

    I send you big hugs ((((HUGS))))

    Kate P
    XXXX
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I have to say I agree with all the sentiments expressed in this thread. As a mother and a daughter I have no hestitation in saying that not only do I know that my mother wouldn't have wanted me to spend my life caring for her (she told me often enough) I would not want my children to be placed in that position either. The difficult thing is if you don't have that sort of relationship with your parents. Unfortunately, becoming a parent doesn't automatically make you unselfish: some people reading this thread may be dealing with parents who DO expect their children to essentially give up everything in order to cope with this disease. They probably don't think of it in quite those terms: it's more like "I gave you everything when you were young now it's time to return the favour" but I have to say it comes down to the same thing.

    It is my position that this is not only an unreasonable expectation, it is also a somewhat warped view of parenthood. It is a parent's duty to provide for their children, but it's not a reciprocal contract. I HOPE my children love me and would want to help me within reason should it become necessary, but not because I cared and provided for them, but because I hope they have been raised to help anyone who needs help. I have already told them that should it be necessary, their "duty" extends only as far as ensuring that I (or their father) are safe and taken care of, NOT that they need to do it themselves. In fact, thinking about it logically, I would much rather the nitty-gritty part of the caring was done by non-relatives, should it become necessary. They are my children and I am their parent: I do not want those roles reversed.

    O.K. climbing down from my soap-box now. This ramble was not directed towards anyone who has posted on this thread: it's more in the nature of "posting for posterity" :)
     
  7. Dgirl

    Dgirl Registered User

    Sep 6, 2007
    16
    Dublin, Ireland
    So much of what you said I can so relate to. I too come from Ireland but did bite the bullet last year and got on the first rung of the property ladder. This is what has saved my sanity. I now have a retreat and the nice thing is now Dad and Mum can come visit me for dinner etc which is a change for them even if Mum looks at my place as if its brand new to her each time she comes. This means I don't feel I have now to go home all the time. However I still go at least one night during the week, Sundays for dinner and normally take Mum out on a Saturday to give Dad a well earned break. Like you I did put my life on hold. It is my Mum that has AZ and Dad gave out to me for not getting out there and living my life. Also like you I was single up until recently. But I only allowed myself to meet someone because I consciously decided I too needed that special someone in my life. Someone who could support me while I supported Dad. My siblings live away from home so only visit about twice, three times a year so a lot is left on my shoulders or should I say I have allowed a lot to be left on my shoulders. I know how difficult it is and how guilty you can allow yourself feel. I still haven't quite figured out how to leave that one behind, probably never will. My thoughts are with you because as I said, I know exactly how you feel and what you are going through. However you have to decide to let yourself live a life. You can still have one and help out at home.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Welcome to TP Dgirl.

    How kind that your first post is in support of others.

    Love xx
     
  9. Sofia

    Sofia Registered User

    Hi Cymbaline

    This is my first time on here I have just plucked up the courage to write after reading about your situation. I totally empathise with you, my mam is 59 and started developing symptoms of AD in her early 50s. My dad is her full-time carer, he took early retirement in order to do the latter. I am 34 and have 2 sisters. When my mam started displaying symptoms both my sister and I were living away from home and at the time my youngest sister bore the brunt of it as she was only 16. I wanted to tell you not to give up on meeting someone, I have met a great guy who I never thought would come into my life and we have been together for 15 months now. On weekends I look after mam so that my dad can go and have a pint or meet up with friends although this is shared between me and my sister or we do it together as this sometimes makes it easier.

    If your parents are anything like mine they would not want you to give up your life, so don't be too hard on yourself, try and do something you enjoy!

    Take care

    Sofia
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Dear Sofia, welcome to TP.

    It is lovely to see your first post being written to support another member.

    Love xx
     
  11. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi

    I also found that my life is in a type of suspended animation at the moment. I am eternally thankful that I had my boys before the dementia took hold of Mum, eventhough the disease had shown its claws before my infertility treatment had begun. For that I am truly greatful.

    I have wanted more kids but that would require more fertility treatment plus support and while I have 2 kids and am visiting Mum twice a week I feel a lack of energy plus I am rapidly approaching that lovely turning point for women.

    However my childen at almost 6 know that I may end up in a NH. Like Jennifer I would want someone else to do the nitty gritty caring, but both have told me they will visit.

    I know that my Mum would, pre dementia, have wanted me to have a life. Once the illness set in I think that she changed. But as a Mum I know that I would want my kids to get on with their lives and ensure I was well cared for and that they visit occasionally and keep in touch rather than giving everything up for me.

    (((((((hugs)))))))))))

    Mameeskye
     
  12. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Ah Mameeskye - only a few days ago I had a conversation with my husband about what he has to do if I also end up with dementia.

    I told him to find me a nice home in the countryside where I can see lots of trees and birds and he and the children can come visit me sometimes but he is then to find himself a lovely lady friend who can cook him delicious meals (I'm a lousy cook) and who will love my kids.

    He thought I was mad and I'm sure he'd never do it but it really is what I'd want.

    Kate P
    XXX
     
  13. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    lol I tell my step-daughter that all she needs to do is make sure I get chocolates whenever I want!:p
     

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