1. Hannah1

    Hannah1 Registered User

    Apr 29, 2007
    ... Hi. I've never posted on anything like this before and I don't really talk about the things that are making me want to post now with other people. Mostly because there isn't anybody to talk about them with. None of my friends understand what I'm going through, and my family have their own perspectives, and that can obscure my ability to grieve through my own sometimes.
    I'm 24, my father is 73, and he suffers from senile dementia. It's gotten progressively worse in the past year or two. At the moment, he's at the stage where he can't remember what day/month/year it is, where I live, or what we just did. He's beginning to enter the agitated, uncomfortable, infuriated stage. He lives with my mother, who is 55, in a rural part of southern ireland. I live in the UK, and am essentially their ownly child (I say essentially, my father has two sons - my half brothers - who are both in their 40s, but neither are close, and a recent email from me asking them for support met with silence from one and anger from the other). Family in Ireland is not supportive, family in the UK is, but it's not much use.
    In addition to his dementia, I believe my father also suffers from aspergers. This has never been clinically diagnosed, but I am convinced this is an aspect of his mental health for reasons too lengthy and complicated to justify here. He is also largely illiterate and inumerate.
    I've just got home from a family gathering (in the UK, my parents were visiting) where I had to look after my dad for a few hours on my own so that my mother and her family could have some time together. Her mother, my gran, passed away two months ago, so it is a difficult time for her. She also left her full time job, a real vocation-type job that she loved, just before Christmas in order to care for my dad.
    I work in a high pressure job. I don't have a partner. I'm relatively new to the town I live in and don't have a large social network.
    At the moment, I'm finding it hard to cope and I can only see things getting harder. I'm feeling this horrible mixture of fear and anger and dispair, and all I can think about are funerals or horrible old people's homes with plastic chairs and orange walls. I'm petrified that something's going to happen to my mother. I'm absolutely scared to my core that she's going to die.
    I get lumps in my throat whenever I think about how unfair and upside down it all is. My father's never been much good at fathering, although i know he loves me endlessly. And I feel cheated that I never had a dad who could look after me in the ways a dad's supposed to, as well as cheated that he's now disintegrating, and that he requires so much attention and care from my mother, attention and care that I want, and that makes me feel jealous and frustrated but above all guilty, because I know he's incapable of doing anything about it or even recognising it, and that it must break my mother's heart so much to be torn in two in such an awful way. I feel guilty that I can't be just nice to him, that I get cross sometimes... Even though i'm so much better at dealing with him now than I was when I was younger.
    He's always been an incredibly unique character, and that hasn't diminished, he's always been the way he is now, except now he's more forgetful/absent-minded/confused/unable to sustain a conversation or learn anything new. He's always been able to just switch off to things, and he does that a lot more often these days. But the thing that really struck me today as the thing he's losing most - the thing that has always defined his character more than anything else, the thing other people remember and love him for, the thing that I will always remember him for - is his nature. He's the happiest, most self-contented person I've ever met. He has this crazy ability to simply refuse to be sad, or moan, or be negative or depressed. He absolutely refuses to be angry or cross - to the extent that he leaves the room when Eastenders is on because "it's too violent" and he can't handle the loud voices/shouting, which he perceives as agression. And so he'll go off and do something else and automatically switch back into his cheery, contented self. And that's what, today, I realised was starting to go. He's not contented. He's agitated. He's not comfortable. He's sad. He feels left out. He feels badgered and instructed. He hates that people tell him what to do, and hates the fact that he doesn't know what to do just as much. We went for a bike ride today and I had to repeat about six times that we were turning right at the end of the road, and when we got to the junction I shouted "Right!!" really loud, and he stopped because he was distressed that I'd shouted at him, and still wasn't sure he had to turn right. He's starting not to trust people. He's starting to shut down. My mother is the only person he's comfortable around and he can't bear to be away from her side, even when he's with me, and he's constantly on edge until he's near her. Then he glues himself to her like a clingy toddler. She can't go anywhere.
    It's so difficult and ugly to watch, and so much worse to be a part of. I don't know how I'm feeling or how to get my head around it... I'm so confused that I just cry but I can't pinpoint any one specific emotion, or one reason in my head as to why. I can't break it down. I don't know anybody my age going through this. Most of the time it's older people losing their partners, or people my mum's age losing their parents. But rarely people my mum's age losing their partner, and even more rarely people my age losing their daddies. I don't know where to turn or what to think or feel or do. I don't even know why I'm writing this or why I'm about to push the post button. I feel like I'm putting a message in a bottle and corking it and throwing it out into the sea and going back on to my lonely little island to sit and wait for something to happen or for a message to come back with all the answers or maybe even for someone to find me and tell me that it's going to be ok and that I'll get through it and make me really believe it.
    If you've taken the time to read this, thanks, and if you've got something to say then please say it. I need to hear anything right now.

  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Hi Hannah

    Welcome to TP. I'm afraid I don't have 'all the answers'. I really wish I had, for you, for myself and for so many other people whose lives are affected by dementia in some way. What I can say is that there are people here who have a wealth of experience and a wealth of compassion to give and I am sure that you will be helped by being here.

    It does sound as though you feel at the end of your tether with all this, and no one could blame you for that. It sounds as though you also feel very isolated and alone, and that must make things so much harder.

    As far as care homes go, I don't know if any of them are!

    I visited my mum today in her nursing home and it is very nice - much better decorated and furnished than my house in fact! However, unless there are plans to move your dad into a care home in the near future, you are getting ahead of yourself. Your dad may never need to go into a care home. If he does, then you can cross that bridge when you come to it - and if you find a home with plastic chairs and orange walls then you can turn it down and go onto the next one!

    I know it's easy for me to say but I think it is best if you can try as far as possible to take things one day at a time. No one can predict what the future holds for any of us, there will be good times as well as bad. You will get lots of support from this list and I am sure you will be glad you joined.

    Take care
  3. janed

    janed Registered User

    Jul 28, 2005
    sorry I dont know what to say. but you are in my thoughts, Your post is so honest and truthfull I respect you so much for being so sharing of your most private and personal thoughts. J
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Hannah, welcome to TP.

    I read your post with sadness, for you and for your parents. Whatever the cause of your father`d deterioration, all you can do is be as supportive as possible to both him and your mother.

    Has your father had any medical consultation? It may be helpful for him to see a doctor about his latest symptoms of character change, agitation and possible fear.

    Please keep posting on TP. If you are unable to discuss your fears with your friends and family, you can here. Your worries wont go away, but we will understand and there`ll always be someone here with time for you.

    Take care
  5. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    message in the bottle

    Hi Hannah,

    So sorry to hear about your dad. You have come to the right place you will get much support here.

    Some will be light hearted jokes ,some help with dealing with social care etc.There is a picture forum, and many poems, and you will find answers to many problems and also fact sheets.

    So your message in a bottle will be found righ away:)

    Love Cynron x x
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    What about that emostion called love
    Your have me in tears , what more do you want and know your going to miss then a father love for his daughter , daughter love for her father and your seeing him despair right in front of your eyes , how you would of wanted things to be , "tears are the words that the heart can’t say" so cry don’t be scared , because we are always hear to support you .
  7. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Hi Hannah,

    My dad is 82 and lives with my Mum who is 76. I am 38. I know I am quite a few years older than you but can relate so much to your post.

    My Dad was (and I remind myself still is) my great hero. He had all the answers, was the person I called when my car broke down- even if I was 300 miles from home, and the person I went to when I needed a hug.

    He has been deteriorating for some years, and was officially diagnosed with dementia in December last year.

    The hardest thing for me has been the role reversal, in that I am now the parent and he is the child. He now rings me when he needs help, he cries in my arms when he can't cope.

    My friends whose Dads are considerably younger than mine are sympathetic but can't really understand the heartbreak of going through this change. I am now reconciled to being in the parent role (most of the time) but at 24 I never dreamt this would happen.

    I know this doesn't offer you much hope but I just wanted to let you know that I understand what you are going through.

    Sue xx
  8. Hannah1

    Hannah1 Registered User

    Apr 29, 2007
    Thanks everyone for your thoughts and comments.
    I'm feeling a lot better today, but then things always seem better the next day don't they. I wrote a long, ambling response to your posts earlier on, but accidentally deleted it - maybe this was for the best. I only succeeded in convincing myself that I'm not dealing with this in a very healthy way.
    In response, yes, dad has been getting medical care and assessment, though the doctors seem more concerned with my mother's health than his. They seem resigned to the inevitable when it comes to him.
    And yes, he has started spending a few hours a week in a care home. I have sore memories of these places. My mum worked in one when I was a kid and my nan, dad's mum, was in one till she died (she had senile dementia too). They always seemed so vacant, not like a "home" at all. I'm also aware of cases of abuse in homes, and of the exorbitant prices of the really good ones... I know I'm sounding negative, but a lot of this isn't beyond reason, is it.
    As for your comments Sue, thanks. But the big difference between our situations is that mine and my father's roles haven't reversed. My dad's always been dependent. I've always been the adult, he's always been the child. I've always felt responsible for him because he is so needy in so many ways, so childlike. I had to grow up very quickly with him as a father. He never looked after me very well and made some pretty awful decisions that massively affected my life, things that I'm only just getting over now. So in that sense I'm not losing a parent, although I am losing my dad.
    I think this is partly why I'm so confused, and why I feel so cold and detached and clinical about it one minute and so sad and despairing and morbid the next. And also why I feel so guilty, because I hate him for stealing my mother when I need and have needed her, for messing up my childhood by being an idiot, and for letting this happen and not doing something about it. Not even trying. And completely refusing to accept it, even though in his heart of hearts he knows. I know he knows. He's just so stubborn that he won't let himself believe it. Sometimes I wish he would kill himself, and put us all out of our misery. But of course I feel like a completely awful and horrible horrible person for thinking like that, even though it's true. But at least he'd have some control, some dignity if that were to happen. And it'd set my mother free so she can get on with her life. He's taken enough from her already.
    So I feel sorry for him and I hate him and I feel guilty over him and I regret him and I miss him and I'm frustrated over him and I love him because he's my dad. And I want something to happen so I can put it in a little box and bury it in the garden and get over it, because I'm so so so so so sick of his sickness, because it's f*cked me up too much already, and I refuse to let him do it any more. But he is...
    In many ways, I'm trying to ignore it and just wait for him to die. Then when I'm confronted with the enormity of his needs, like yesterday, I feel this overwhelming compassion and sadness for him.
    There's a lot there. It's not like I've always had this great daddy and all of a sudden he's gotten forgetful. I have a lot of anger that I can never get out, and sometimes I feel like it's driving me crazy instead. He's in blissful ignorance, me and my mum are the ones going mad. But I still love him, because he's my dad, and that's the hardest part, because how can you hate someone and love them at the same time? It's too extreme and I can't deal with it.
    Do I need professional help? A counsellor? Do many carers or family members need support like this?
  9. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Oh Hannah I really feel for you. Reading your last post made me think about my relationship with my Dad.

    Please don't think my Dad was always the perfect Dad (but then I was very far from the perfect daughter). We often clashed and had major rows...and more besides that I won't go in to, but at the end of the day I always knew that he loved me. I took him for granted and since he started to be ill and maybe as I have got older I have come to realise how much I love him and how much I hate what this disease has done to him.

    Despite all your negative feelings about your Dad, which I'm sure are totally justified, you make it clear that you still love your Dad, whatever his faults. If you didn't you would have walked away without a backward glance.

    You are young to be going through this. My mum lost her Mum at 5 and her Dad at 24, but at 76 it is her Dad's loss that she still grieves over. You seem to be taking on so much, not only your Dad, but your Mum too. I think you do need to talk to someone about your feelings, starting with your Mum if she doesn't already know how you feel.

    You will find a lot of support here and we are here to listen whenever you need to talk.

    Sue xx
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Hannah, I have to say that even though I've always had a great relationship with my mother, and I'm very much a long-distance carer, I have had some of those very same thoughts, so they are by no means unique. I do think you're right that you need professional help to talk this through: not just for now but for later. You're still very young, and you really do not want to be carrying this around with you for another 50 years or so. From reading other people's posts, there is definitely more stress involved with caring for someone you don't particularly like, even if you love them. It would of course be lot easier if you both didn't like and didn't love them: then you could just get on and do what had to be done without the emotional involvement, but it doesn't work like that.

    Take care and keep posting

  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Hannah, all your emotions are normal. Please keep telling yourself that.

    The turmoil in your mind is comparable to the turmoil most of us face when trying to come to terms with the diagnosis, the changes, the guilt, the future and the unknown.

    All you can do is your best. Don`t ever feel you are not doing your best. Support your dad as best you can, and you and your mum, try to support each other.
  12. sophie123

    sophie123 Registered User

    Feb 14, 2007
    Hi Hannah,

    Reading your post was just like reading what I would write if somebody asked me how I was really feeling. I'm only 21, and had to move my mother into a nursing home a year ago because of alcohol-related dementia. I'm fortunate to have a sister who is 23, but apart from us and sporadic visits from her brother, my mum is very much on her own in there. I feel guilty because we never had a good relationship, and sad because I know we'll never have a proper one again. She was not a good mother, and I know that sounds harsh, but she drank everyday for all my life, and left me and my sister to bring ourselves up. Our dad is still around, but had to work hard to support all of us - they broke up 8 years ago, and she deteriorated in the two years. He is now with my stepmum and new half-brother - it is unfortunate that he has had the ability to have a life, but he stayed as long as he could and I respect him for that.

    Please don't think you are the only one out there in your position - I know us young'uns are in a minority when it comes to dealing with parents with AD or dementia, but just use this forum to rant and release any tensions, and I'm sure you'll feel better for it. I'm new to here as well, and just reading about other people in the same situation as me has really helped. I am still considering visiting a counsellor, just to have face-to-face contact, but for now, this is good enough. And the other people on here are great!

    Hope this has helped, apologies for length!

    Soph xx
  13. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    Dear Hannah,

    Just keep logging on to Talking Point when you feel down. It is a great forum because you will find so many great new friends who are in the same position, so you won't ever feel alone. I know it's helped me - a lot!!!

  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    I also did not have a good relationship with my mother before AZ, it was like I was holding it against her even before AZ.

    It took my mother to became ill with AZ to make me realize what pent up repress anger I had towards her, when all the time she did not even relies she had done anything wrong in how she brought me up

    you can love someone and not like them or they ways when it come to family , if you go to your doctor he can offer cognitive recognize therapy, I had that after my father died and my mum was per AZ , think they call it talk therapy now .
  15. Nell

    Nell Registered User

    Aug 9, 2005

    Yes Hannah - I think you would be wise to seek help and seek it soon. Not because you are going to do anything desperate, but because no-one deserves to live with the pain you are feeling.

    Don't be all "brave" with the doctor!! Tell her / him that you are in a bad way. Perhaps it could help to print out your posts which are so searingly honest and clearly express your anguish, and show these to the doctor . . . ?? (Might be easier than trying to explain in person . . . .??)

    Thionking of you, and sending you

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