Being his girl
Hi Hannah,
I'm 31 and Dad has had his early onset dementia for almost 7yrs now and has been in full care in an old folks high care facility for the last year...so I guess Dad's disease has progressed far more rapidly than your own father's. Dad had to quit work (he was a manager/CEO of a sugar factory) 7yrs ago with the diagnosis...for about 3 yrs he wasn't too bad, just less talkative (but he never was an outgoing fellow), and would do things like leave a tap running just a little every time he used one, couldn't tell the time on a clock or tie his tie, became obsessive about sweeping and washing and drying dishes. For the last 4 yrs or so however things basically went to ....well you know where. Dad can no longer talk, wears nappies, can walk but only if you help him up and u must remember to sit him down or he will walk till he falls down, he can't eat without someone feeding him but I'll shut up now or I will completely freak you out!
Whatever you read on here, always remember that every case is different, and what happens to my Dad may not happen to yours and what happens to other people may not be applicable to your life.
But one thing I must say, is try to learn to appreciate what you have now because in the future you will remember back and think, oh my god, and we thought things were so bad, we were so caught up in that thought that we didn't realise how good things actually were. God I sound terribly scary! I just wish in some ways we had realised back then, how bad things would get, but I don't think its actually possible to ever really realise the horror this diagnosis eventually brings, human imagination refuses to let us think about such things I think. So whatever you do, celebrate today that your Dad is nowhere near where my Dad is yet, give him a hug even if he is being a pain in the ash.
Despite sounding terrible scary I hope you can take comfort in the fact that we still cope, I still love my Dad, and nowadays I have learnt to appreciate how he is now, and simply prepare myself as best I can, for things to get worse, because even though to outsiders his condition seems shockingly depressing, I have learnt to appreciate the little things like smiles I get from Dad, the odd word that appears to have meaning, him squeezing my hand, or looking like he appreciates that I am there for him (occasionally I 'think' I see that in his eyes).
Sorry for sounding so foreboding, I pray that your father's dementia is a lot less cruel than Dad's. Last but not least though I wanted also to empathise with you. I like zed was 25/26 when told of Dad's diagnosis so not tooo much older than you. I like you am the youngest child (I have an older brother - 4yrs older and an older sister - 7 yrs older and a mother who sometimes behaves younger than all of us
). I don't know if like me, you were your Dad's favourite, but that often happens with the youngest girl...being the one who really had/has a connection with Dad has made this disease probably far more distressing for me in many ways I think but at the same time I have been able to be far more forgiving than the rest of my family, of Dad's behaviours (and far less hurt by them than the rest of my family who have taken his change in personality personally quite often, whereas I appear to be able to remember better that the original Dad I knew wouldn't have done such things) and been able to continue to give him my heart and soul for much longer, so I think I know what you mean by feeling like you have to be the stable, strong one.
Oh and one more thing, being so young and having to watch your Dad go through this can be devestating personally in many ways. You may possibly go through a lot of stress and anxiety that you too may end up with the disease, not sure if you want to know for sure if you will or want to just live in ignorance. I went through a lot of confusion, because I often felt I didn't know who my Dad really was before this disease, I would hear my mum's version, my siblings versions, other people's opinions and they all would seem different to the man I remember....I think though now i have settled with the thought that although Dad was a different person to different people, I just have to keep remembering who he was to me, and treat him accordingly. Another thing that often upset me was the feeling that I never got a chance to have an adult conversation with my Dad, I never got to know the man, rather than the father, I guess I have also often felt robbed, my brother and sister got to get married while Dad was ok, got to have kids while Dad was ok, got to see him proud of them for being the person they grew up to be. I on the other hand have to wonder if Dad would have liked my husband, (he always grins at him now though so maybe he would have), have to tell myself Dad would have been proud of the things I have done, have somewhat lost the desire to have any kids at all because so much of my life goes into his care and I'm so tired of hurting for him and can't imagine wanting to love someone else so much and risk that something similarly terrible might happen to them also, I don't think I could bear it. It also used to make me sad, (i'm getting over it a bit now though) that my children if i did choose to have any, wouldn't know my dad, its frustrating that my husband never knew the 'old' Dad, it sucked getting married (last year) with Dad in this condition. I am also sick of having something to be so sad about for so many years, when I should have been being young and carefree. I hear people say about trivial things 'Oh that was the worst thing that has ever happened to me' and I think 'Holy ***** if only that was the worst thing I have had to go through'. I shouldn't have had to have gone through this, I often wish his death had of been quick, terrible though it would have been to lose him in such a way, 'normal' life would have resumed, a long long time ago. Oh and then I could go on and on about the conflicting feelings of wanting my father to die, but desperately wanting him to not die, 2 feelings that I live with constantly sitting side by side in my heart.
Also it has been a very strange thing to go from being the well loved daughter who always felt that Daddy would keep her safe, look after her, to becoming the protector of my father, having my emotions change to a point where it almost feels like he is my baby, helpless and defenceless, with very little concern for anyone other than himself and needing me.
Anyway i could go on and on, i have years of emotions and experiences to draw from...but I need to sleep (its 3am, another thing this disease had brought me, is a lot of insomnia or even when I can sleep like tonight, I always seem to have some kind of ache or pain ...no doubt stress related that keeps me awake...tonite it was a somewhat undefined toothache/sinusitis/earache things that I have had on and off for 2 months now) and you no doubt, don't need to hear everything I have to say. The point of all this however, is to let you know, I am here, I don't think I am so much older than you that I can't relate to you, and we have a lot of similarities that might make our experiences comparable. You may not necessarily have need of someone as morbid as me now, but just remember to post on here if things get bad later on, or send me a message and I will see if I can help with some emotional support. Last of all, I find the mantra I have pasted under my signature on here as a key to coping with this disease, all of the pains,emotions, hurts, fears that I experience throughout this journey...they all eventually pass...u will go through periods where it all seems to much, u just want to give up, but the feelings will eventually pass...u will go through periods of calmness where u do cope...unfortunately at times these too will eventually pass,....then u will be back in the hell times again...just keep remembering, that
'in time this too will pass', take a deep breath and just keep soldiering on, until u get to the next stage. Its kinda like a roller coaster ride, there are the hellish, oh my god , get me off this ride, I am going to die times, then there are the quiet gentle times where u start to think that this isn't so bad, I can cope with this, then there are the times where you are heading up that slope higher and higher, the anxiety builds you know things are going to get scary, and then every now and then there are the times when u see your Dad's face in the crowd below and so you try to pretend that you aren't scared, you can handle this, you will not throw up, because your his girl, made of tough stuff just like him.
