1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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.

  1. hannahd

    hannahd Registered User

    Apr 6, 2006
    5
    Oxfordshire
    My name is Hannah, I am 22. Roughly 3 years ago my dad was diagnosed with early on-set dementia. I can honestly say that we have managed 3 wonderful years…. Dad’s job had to change due to him losing his driving license, and after nearly a year he passed a special DVLA driving test and re-gained his license.

    When dad was first diagnosed, mum found it so hard to get on with life as normal even though dad was no different to the slightly muddled man that we had come to know over the past year…. with the drugs that dad was given (I’m sorry I have no idea what they are) he really has been stable for 3 years, and it was easy to forget his condition and the inevitable…

    …which is why, for the first time since his diagnosis, we are actually really understanding the pain and frustration that this disease causes.

    Over the past couple of months he really is showing signs of becoming a lot worse. Sometimes just the silly things like losing things and refusing help from us to find them (everyday…!!!) this mornings example being his car keys… which he found half an hour later in his pocket even though when we suggested he check his pockets he said he had… and there are a few more serious things which include trouble at work and other topics that I am sure will become threads in their own right. I just wanted to take the first step to find somewhere where I can seek advice… and pour my heart out.

    Although I am the youngest in our family, (I have a sister who is 26 and my two nans live close) I am most definitely the one that needs to remain the most level headed and provide support for both my mum and my dad.

    …the worst feeling is that my dad is turning into someone that is so totally away from his character, and there is nothing that anyone can do about it… made worse by the fact that although he knows that he has *alzheimers* he really is in complete denial… which makes issues totally impossible to address….

    Anyway, I wanted to introduce myself which I have done, and say hello to everyone… I head read through recent threads and feel touched by all of your stories and bravery…

    Live for today… even when today isn’t quite what you would like it to be
     
  2. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    Hi Hannah

    I really can sympathise, I was 26 when my mum was diagnosed, my brother was just 17. I never expected to have to deal with something like this at my age. It must be hard for you to go through this at your age, and to be the level headed one. I often feel that too, although my family are doing their best, sometimes other people cause problems (suchs as my mum's awful boyfriend) which makes things really worse, and I get fed up of being the one who has to sort it out.

    It is possible that the medication your Dad is on has stopped working. Usually the dementia medication like aricept works for aroung 18 months or 2 years, and then it stops working.

    It is really great that your dad is still working. My mum was a nanny so she resigned immediately she was diagnosed, it just wasn't worth the risk having children in her care. She also had to drive for her job, and her licence was revoked by the DVLA.
     
  3. hannahd

    hannahd Registered User

    Apr 6, 2006
    5
    Oxfordshire
    Thank you.

    Dad also had his license revoked, but had it re-issued a year later following a test. Funnily enough, he has to visit a specialist on Monday as we are a year down the line now and the DVLA need him to be checked before re-issue. To be honest, I am not sure that he will be OK this time. We will need to deal with this when it happens, as dad will be so down about losing his independance.

    I think you are possibly right about the drugs, it does seem that he is in a muddle all of the time now.

    Working has been fantastic for keeping his mind active, although again I am not sure that this is going to last, we have recently been faced with some awful problems regarding the company that he works for. Mostly due to their lack of understanding about his condition.... - he of course thinks that everything is fine and that he is fully capable of working, I sadly have doubts.

    Its hard not to get cross with the situation, the fact that he doesn't appreciate the seriousness of his condition, and whether we ever want him to realise?! possibly not...?
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Quote Zed
    It is possible that the medication your Dad is on has stopped working. Usually the dementia medication like aricept works for aroung 18 months or 2 years, and then it stops working
    .
    This may be possible with some people but I know of no evidence to support this.
    My wife has been taking Aricept now for ten years,I checked with the consultant last week, and it is ten years since he prescribed them.
    Although she scores badly on her memory tests he will not discontinue the Aricept.
    Norman
     
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    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!:eek: 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 :rolleyes: ). 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 shite 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.:confused:

    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.;)
     
  6. sandy25

    sandy25 Registered User

    Nov 30, 2005
    54
    Oh m'god Nat's feelings completely echo my own!

    Last week I went through a stage of feeling really sorry for myself. I just kept thinking to myself, you shouldn't have to think about putting your dad in a care home when you're 25. I'm not married yet or had any kids and all I keep thinking is that by the time I do he'll either not be able to walk me down the aisle or he won't be able to remember my childrens names.

    I also feel like I really need to get to know Dad, well, v.v.quickly, before its too late. I've found that he acts different/talks more when Mums not around. She has a habit of giving disaproving scouls when he says s'thing daft. I'm quite a daft person anyway so when its just the two of us it's becoming more of a giggle now! Thats what I keep focusing on, having quality time together and really getting to know him. So that when he does go into a home (I suppose I'm starting to accept the fact) I'll be closer to him in an odd sort of way.

    Hannah, like you I was only 20 when Dad became ill and it completely turns your life around. The dynamics of our family have completely changed. I'm also the youngest and at the moment (well, at this precise moment) I'm possibly the strongest about it all. Dad had to quit work when he started losing things etc and his licence was revoked pretty quickly. I think thats v.hard for him to understand, he talks about it like someone has taken away his right to drive and that he was perfectly capable of driving, but we all knew he wasn't. He is also in denial. And he says things like, I'll come and help you do this or that in your house then looks offended when I don't take him up on the offer. He's struggling to get dressed in the morning never mind about putting a curtain pole up!

    Anyway, as they've all said. Everyone with dementia is different, as per Coronation St, they call it a "long goodbye", well from my point of view at least I'm getting the chance to say goodbye which I think is a lot more than some people do. I try to think of it that way.
    xxx
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Well said Sandy, at least you have the chance to say goodbye. My late husband died very suddenly, and his sons never had that chance.

    We all appreciate the difference with Lionel, and try to enjoy each day despite the difficulities. Ironically his own children don't seem to appreciate this "extra gift of time", but my sons certainly do. They learnt the hard way with their own dad.

    Look after yourself, regards, Connie
     
  8. hannahd

    hannahd Registered User

    Apr 6, 2006
    5
    Oxfordshire
    Thank you

    Thank you all for your kind words, it's comforting to know that there are kind and caring people like yourselves here to help me through the times ahead...
    I absolutely appreciate all of your advice around making the most of each day that we have and I certainly intend to, thank you again :)
    xx
     
  9. holsrose

    holsrose Registered User

    Apr 13, 2006
    1
    kent
    so glad to see im not on my own !

    hi everyone , my mum was diagnosed with the diease very young late 50 s and i was only 26 and after not being able to get particullary close to mum ( i understand now it was due to this dreadfull diease ) i have found it very hard to cope with i too am a mother now and completley terrified that im going to end up like mum ! mum is now in residential care and is definatly in the later stages i think can no longer feed herself etc and since jan is on her 3 rd chest infection im now wondering if this is the beginning of the end ?? i find it so hard to go to see her bcoz i don t know what to say to her i get no response when i do go its heartbreaking totally heart breaking . i have a wonderfull husband but he doesnt understand as he has come from a happy healthy family sometimes i just feel so alone .:(
     
  10. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Holsrose,
    No need to feel alone any more, there is always someone here. How long has your mum been ill? My mum also started with dementia in her late 50's, though we covered it up for a long time. She sounds as though she may be just behind your mum. Mother's Day I sat and held her hand for 2 hours whilst she slept; not wanting to leave because I felt I should be there, but thinking 'What am I doing?'

    I am finding this stage of the illness very painful, because I feel unable to make a difference. As you say, it is totally heartbreaking. You are not alone. Post again when you feel like it.
    Best wishes
    Amy
     

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