refusing to accept the diagnosis

Discussion in 'ARCHIVE FORUM: Support discussions' started by unicorn, Sep 7, 2007.

  1. unicorn

    unicorn Registered User

    Jun 22, 2007
    12
    nottingham, uk
    I want to care for Clive at home, he is only in the early mild stages but not sure how long each stage lasts, spoke to him about an OT coming to see him and as usual of late,was given the stony silent treatment and the look! I am trying to plan as much as I can for our future but he still refuses to accept his AD diagnosis, sometimes he seems devoid of all emotion ? While on here this morning I was crying about the facts of the disease, Clive walked in and just ignored the fact that I was crying, and he was usually a loving man. Does any one know of a sitters service so that i can go do some shopping without worrying Clive is gonna get in any bother, he woke up early , around three again, 2 nights ago, went to the summer house and fell over, said he was shouting us but we were all in bed asleep, so didnt hear him, he was battered and bruised, all i seem to do is worry abut him and yet he doesnt understand why, no matter how much i try to explain this to him he just gets mad, goes in a sulk and seems so distant. Are mood swings part of the disease, cos he even makes me question the diagnosis, although in my heart i now its right. He wants to take our grandson out who is 2, but we worry he will fall asleep some where, as he keeps doing, and kyle will wander off, again it does not go down well if we refuse to let him go. Every thing just seems a fight with him all the time.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Dear Unicorn

    I don't know whether it's any help, but I can assure you that everything that you mention (the lack of acceptance, the loss of empathy, the mood swings, the wandering, particularly at inappropriate times) are all part and parcel of this condition. I think some people never accept that they have AD, and who can blame them? All you can really do is manage the situation as best you can. And let's face it, even if you could get him to accept the diagnosis, would it really make any difference? 1) he quite possibly wouldn't remember that he had AD tomorrow and 2) if wouldn't affect his behaviour.

    I think you are quite right not to allow your husband to be alone with your grandson. In fact, I would go so far as to say: absolutely not, no way. It's not just the lack of concentration, or the fact that he might go to sleep, but also that a dementia sufferer can have very changeable moods and will have no understanding of potential dangers to themselves let alone a 2 year old. I don't think this is a negotiable issue: like driving this is a safety issue that you cannot compromise on.

    Best wishes
     
  3. unicorn

    unicorn Registered User

    Jun 22, 2007
    12
    nottingham, uk
    I agree with all you have said, I just wish he would see it as clear cut as that, I think that I am still trying to come to terms with it too, always thinking maybe its not AD, maybe its just his age, he is 62 and I am 42. Naive i know!:(
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,655
    Kent
    That`s the top and bottom of it, people with Alzheimers don`t see anything in a clear cut way.
     
  5. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    One of the tragedies about the disease is that people with it often lack any insight into their failing abilities.

    My poor dad doesn;t know what day it is and sometimes doesn;t recognise his own home, and forgets things almost instantly, and has the most bizarre ideas and false memories. But he is convinced that there's nothing wrong with him, nothing at all...

    I don't know whether it;s partially denial, or just failure of insight. If you keep forgetting things, you forget that you forget..if you see my drift. Oftenstimes the symptoms come on so slowly that people get used to them and believe they are perfectly "normal". Or perhaps it;s a mercy!


    As to a sitter service, I would suggest you contact social services. They may be able to arrange something themselves, or alternatively, will be able to put you into contact with organisations like MIND that do have sitters that can call. You will have to have a financial assessment though.
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi unicorn, you need to get on to social services and tell them you want a carers assessment. You are entitled to this, but SS don't tend to tell you about it. They will assess your respite needs, and should provide carers from Crossroads to sit with Clive while you go out. I have two two-hour sessions a week, and they've been a life-saver. They may also offer you daycare. Take whatever you can, you are entitled to it.

    Oh yes, moods can vary from day to day, sometimes they seem completely normal, other times argumentative and even aggressive.

    Definitely don't allow this. As others have said, Clive may wander off and forget he has the grandson with him. Or he may fall, and the child wander off. It's just not safe.

    Post again and let us know how you are getting on,
     
  7. unicorn

    unicorn Registered User

    Jun 22, 2007
    12
    nottingham, uk
    thank you skye, I have asked for an assessment today so hopefully that will start the ball rolling, what hurts the most is that sometimes Clive will put his arms around me for a snuggle, then other times he is so so distant, you never know till i wake what sort of mood he will be in, the thing that worries me the most is him getting up in the night after only 2 or 3 hours sleep, he recently had an accident in the car and i dont think it happened quite the way he said, spoke to the doc about it today too, so when dvla takes his licence, guess he wont be in love with me again
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Unicorn, you've done the right thing regarding the DVLA. It certainly sounds as if Clive shouldn't be driving. Yes, there will be rows, there always are, but it has to be done.

    The emotional mood swings do hurt, you seem to be doing all the caring, and getting little response. I'm afraid that may well get worse. I get no emotional response at all from John these days, and it is hard to deal with. Make the most of the cuddles while you can!

    Love,
     
  9. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Unicorn,
    I do feel for you, it's a miserable situation to be in. My mum also went through the denial bit, all happenings were someone else's fault. Luckily, she never drove except us to despair at times. As, this disease progresses some stages do become easier for some and I hope in your case this will happen. You have received good advise here from others on getting support. Unicorn, take all the help offered to ease your caring role. I wish you well. Taffy.:)
     
  10. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales
    Hello Unicorn,

    Terrible situation for you.

    Do you have a local branch of the Alzheimers Society in your area ?

    Had nothing like your problem but felt very isolated until I was put in touch with the local A.Soc - then everything started to come right after that. They organised so many helpful things and a carer,

    Best wishes
     
  11. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi Unicorn,Do you have a local Age Concern office that you can contact.They were very helpful with mum and dad.worth a try if you have one nearby.good luck.elainex
     
  12. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi unicorn,

    When I was diagnosed it came as a great shock to the system, but with my wife Janice and family's support, I gradually came round and started to look at it in a different manner.
    I admit that I was very lucky in a way as I was able to control my feelings towards the diagnosis of Dementia with Lewy Bodies, where many could not cope.
    But I think it depends, on whether you can accept it or not and also whether you really want to accept something which is very frightening to cope with. To be a carer or a person who has been diagnosed must be one of the worst things to come to terms with in life, no matter how strong we are.
    I am fighting this illness, but to be very honest it really terrifies me, no matter which way I look at it.

    I think it just takes time and patients to accept the inevitable, but even then its not easy.

    Best Wishes

    Ken
     
  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Advice?

    Not a situation I am familiar with, my mum is a widow, found wandering in the streets at night. So not your situation. But I would say definitely NO GO your dad having charge of a child, and NO GO him driving a car. Take the keys away, if you cannot get rid of the car itself.

    Oh dear, it's so sad, it sounds as if he's starting to get confused between day and night if he is up so early after so little sleep. This is how my mum started, at first it was just a bit odd, then we found her having breakfast at 7 p.m., and not knowing whether she had eaten anything else during the day, and eventually going out at night to the post office and wondering why it was closed for lunch.

    There were all sort of other things, so be aware the situation can change very rapidly.

    Mum is now in a care home, but refuses to accept the reason why, is not at all happy about it, but a the moment she does trust me to be doing what is best for her, I am thankful for that. She isn't so confused about day and night now, so thinks she can go home, but the Psychiatrist has said not. It is so sad. But he day is much more regulated and seems to be good for her.

    Sorry that your dad waivers between being affectionate and argumentative. As my mum has never been affectionate I can't comment on that, but it must be hard to deal with. I think you've just got to take things as you find them, and remember that your dad is more confused than you.

    Hope you cope.

    Love

    Margaret
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.