FINALLY! A 'formal' diagnosis!! But... I am so disappointed

Discussion in 'I care for a person with dementia' started by rainbowcat, Nov 2, 2018.

  1. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    92
    Female
    #1 rainbowcat, Nov 2, 2018
    Last edited: Nov 2, 2018
    Hi everyone,

    After 5 and half years of me fighting for a formal diagnosis, my father finally got his yesterday.
    "Alcohol-related dementia with a vascular component".

    I had looked forward to this for a loooong time, the day that I was finally taken seriously by social workers, health professionals, hospitals, etc. and that I would surely be told that my father's issues weren't completely due to him previously being a high functioning alcoholic and extreme heavy ex-smoker, who now drinks just 2 or 3 cans (stella) a day....

    AND I feel so disappointed. It's like I've been told NOTHING. I already knew he had alcohol-related brain/neurological ailments (from a convo I had with his GP 3 years ago) and vascular issues. It feels like a NOTHING diagnosis. It's like it will all carry on as usual, with everyone just passing off my Dad's problems as being "cos he drinks".

    I'm also annoyed too about the fact that my father has brought this on himself, from a lifetime of heavy drinking and smoking, and now just expects to be run around after (and gets angry when *I* don't, yet it's fine that my siblings don't because of his perception of me/them). I always had this feeling anyway, but now that it's been confirmed that it's not ... well, one of the forms of dementia that actually has a proper name (ie: FTD, Lewys, Alz) ... then now I am more acutely aware of it.

    He can't walk. He's occasionally incontinent. He can't feel his feet. He can't wipe his bum. He wipes poo from his pants onto his face, and doesn't see why this is a problem. He doesn't see why he should wash more than once a week. He has carers in 3 times a day (less said about them, the better!) to feed him (microwave meals). Never goes out. Has no family within 200 miles (and isn't in touch with any old friends cos he can't use his mobile phone). Has inappropriate behaviour. Oh I could go on.

    So...after the diagnosis (assessment happened at his home), my father phoned me. He said that it's only a theory that alcohol causes dementia, the visit was a waste of time because he didn't learn anything, the dr "doesn't know what he's talking about". My father's decided he's NOT going to stop drinking, and in fact he wants a large bottle of whisky with his next Tesco order.
    (note: I have LPOA, I arrange his shopping deliveries, and will never supply large spirit bottles!)

    So I guess that apart from a rant, I'm hoping that there are other people out there in exactly the same boat, feeling (or have felt) same/similar to me...?

    Thanks :)
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,192
    Female
    Dundee
    I'm so sorry to read of your father's situation. I can only begin to understand how you must feel. I have no personal experience of this kind of dementia myself but I wondered if these fact sheets would be of any interest to you. This link leads to to some information on Korsakoffs and other alcohol related dementias.

    https://www.alzheimers.org.uk/about-dementia/types-dementia/korsakoffs-syndrome#content-start

    You might also find it useful to give the Helpline a call. I'm sure the advisors there would be of help. The details are as follows -

    https://www.alzheimers.org.uk/get-s...55.1769454811.1519233588-549088353.1488398070

    0300 222 11 22

    Our helpline advisers are here for you.

    Helpline opening hours:

    Monday to Wednesday 9am – 8pm

    Thursday and Friday 9am – 5pm

    Saturday and Sunday 10am – 4pm

    I'm glad you shared here and hope that doing so helps even just a little.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,077
    Kent
    Hello @rainbowcat

    A diagnosis defines the illness and that is all it does.

    It doesn't make the person with dementia who may have brought this on themselves any easier to be with.

    It doesn't help the person with dementia with whom we have endured a poor relationship any more loveable or any less selfish.

    If you feel a need to be dutiful , just do what is necessary to keep the person safe, if you can . There is small likelihood you will be appreciated or listened to.

    My mothers dementia was not self inflicted but the relationship was poor. I did what I had to do and let others do the rest.

    It may sound cold and hard . It was as it was.

    Look after yourself.
     
  4. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    It is no help for you to know, but I think that the majority of us already know the diagnosis before we are given it formally, and, as said above, it sometimes makes no difference. It might help to do a search of what support is available in your area, so that maybe you can take a step backwards?
    https://www.alzheimers.org.uk/get-support
     
  5. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,561
    Female
    Auckland...... New Zealand
    #5 Linbrusco, Nov 2, 2018
    Last edited: Nov 2, 2018
    @rainbowcat

    I get where your coming from.
    My 80yo Dad had an MCI diagnosis 4 yrs ago.
    Dad is also a heavy smoker ( a bit less now) , a big drinker in his younger days and was an amateur boxer. He denies any concussions.
    Everything has always pointed to Frontal Temporal Dementia.
    Mainly behavioural, poor judgement, reasoning, decision making, very impulsive, little social skills, poor language skills, apathy, selfishness.
    Even his brain scan 4 yrs ago showed frontal lobe atrophy, and areas of vascular damage due to smoking and probable head trauma from his boxing days.

    However after a recent reassesment the Memory Team said he had mixed dementia.... what does that mean? They dont have a definitive diagnosis?
    However, because he has never been told by his GP, then he doesnt beleive anythings wrong with him.

    Have never had a relationship with Dad, unlike Mum with Alzheimers and in care now.
    I care out of duty only. I only do whats necessary.
    Its very difficult to tell myself that Dads issues are “dementia” when much of my life Ive known Dad no other way.
    He wont accept any home help.
    No cleaners or gardners. No going to dementia groups or day care.
    No iniative to do anything at home, yet Memory Team says hes not depressed.
    I have to nag him to change his clothes, tidy up after himself.
    Its not as if he has Alzheimers and doesnt remember how.

    Yet he is an accident waiting to happen due to poor decisions and not recognising danger.
    We’ve already had one incident involving the police!
     
  6. canary

    canary Registered User

    Feb 25, 2014
    9,837
    Female
    South coast
    @rainbowcat - at least you have a diagnosis now, and one that has the word "dementia" in it. Technically he has mixed dementia - a combination of 2 or more types of dementia - in your dads case alcohol dementia and vascular dementia.

    I dont know whether putting a label on it helps - I still dont have a "proper" diagnosis for OH, although everyone accepts that he has a neurodegenerative condition. It is hard too when there is the feeling that their own life choices have contributed towards the condition.

    BTW, your dad has obvious anosognosia. He is unable to comprehend that he has anything wrong with him.
    So - the doctors havent told him, they dont know what they are talking about, he doesnt need any help ,there is nothing wrong with him, his behavior is normal....................
    Its a very common (though little talked of) symptom of dementia and you wont be able to make him understand or accept that he has problems. So dont try reasoning and arguing with him - just get on and do what is necessary (like not ordering the alcohol he wants as you are already doing)
     
  7. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    92
    Female
    Thank you all for replying - I can't do any individual replies at the mo cos I have literally JUST (4 hours ago) lost my beautiful cat (my sister's artwork of my Bobby is my avatar/profile pic) and am devastated. I didn't want to leave people thinking I was posting and running.

    Thank you all again, I will post soon x
     
  8. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    160
    Male
    Liverpool
    So sorry to hear about your cat, they can be such a comfort through such difficult times, its awful when you lose them. With mum its been the opposite in that she has never smoked, only been a very light drinker (a small glass of wine with her Sunday dinner and a couple more at Christmas) and has eaten the right things and always been a walker, but in spite of this, at the age of 60, we started to see the first signs that things weren't right (she's now 71). She's not really been able to enjoy her retirement due to this disease and I also feel annoyed aswell but for a different reason, it seems unfair that having been careful she and the rest of us have been blighted with this through what is just shear bad luck! I wouldn't wish this on my worst enemy.
     

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