1. swithland

    swithland Registered User

    Jan 27, 2008
    9
    leicestershire
    Hi. I am new to this site and need some help now. My Dad was dignosed 2 years ago and his decline has been slow until the last couple of weeks and suddenly seems to have speeded up. He lives with my mu who is well but is now struggling to cope. The evenings are the worst time when he gets in a state about the facts that mum is not his wife and instead some sort of friend who pops in now and then.Also he doesnt think that the house where they have lived for 34 years is now his house.\mum is finding all this very hard.We started by contradicting him but soon realised that was useless and got him more wound up so now we agree with him.But he goes on and on and on about it and there is no peace.Do any of you have any advice to give. Also we havent been in touch with social services yet but think we need to get an assessment done. Is there any help to be had in the evenings to give mum a bit of support. What sort of help can they provide.I live close and help as much as I can but have my own family too.I am really starting to feel quite desperate about the situation.Any help or advice would be very gratefully appreciated. My nam is Jackie by the way.
    Thanks
     
  2. Scoop

    Scoop Registered User

    Nov 20, 2006
    99
    I feel your pain :(, I am in exactly the same place at the moment. Does your dad take anything for the agitation? We have been using Olanzapine as our lifeline for a while and for the last week or so he has been on it twice a day to try and settle him. Sometimes it works sometimes it doesn't.

    We are actually going to get a proper medication assessment/review done and I will also be trying to find out what extra help we can get for Mum. She is now starting to understand she can't do it all herself. Like you I live close and help all I can but have a young family full time job and we are due our 3rd babies arrival in 8 weeks.

    It's so unfair how cruel this disease can be, knowing exactly when to make it hardest for everyone to cope. :mad:

    has you Dad been seen and assessed medically? Since my Dad was diagnosed and came under the care of the Mental Heath Unit I have a community nurse I can call, sometimes nice just to hear what you are doing is right!


    Welcome to TP By the way, loads of support and good advice to be found here!

    Scott
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,642
    Kent
    #3 Grannie G, Jan 29, 2008
    Last edited: Jan 29, 2008
    Hello swithland. welcome to Talking Point [TP]

    The time of day your father becomes restless, in the early evening, is quite common with Alzheimers, and is called Sundowning.

    It doesn`t make it much easier to cope with, but it is some consolation, just to know it happens to many others.

    My husband and many others, have even packed their bags to `go home`.

    I know how distressing it is for your mother as I have experienced the same. During the `sundowning `period, I am not recognized as a wife and partner, I am someone blocking the way, someone preventing him from doing what he wants, someone who is dominant and bossy.

    I learnt to go along with it, I`d tell him to wait till tomorrow when I`d help him, and tried not to be confrontational.

    Now it happens less often, so if your mother can ride it, it will come to an end eventually.

    You might find this Factsheet helpful. All of it won`t apply to your father, but there is a good piece explaining sundowning.

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=101&pageNumber=1


    Take care xx
     
  4. swithland

    swithland Registered User

    Jan 27, 2008
    9
    leicestershire
    Many thanks for your replies. It is good to know there are people out there to talk to and share advice.I will have to get my mum to log on as she has a computer even if she is novice!!
    He is not on any medication as yet to help with agitation.He is just on Reminyl I think its called but I dont know whethrt that does any good or not.I suppose his decline has been quite slow umtil now.I have contacted social services this morning and the next stage is for them to get permission from mum and then arrange a visit for an assessment but whether they can offer much help I dont know. He is well physically.The help we need is some respite for mum.He isnt ready to go anywhere for respite but I m hoping some help could come to the house for short periods.Do any of you have anything like this?I have heard thet the evening period is called sundowning but sometimes now he is like it during the day as well.We go back to see the specialist in 2 weeks so hopefully we can talk about other medication possibilities then.
     
  5. Scoop

    Scoop Registered User

    Nov 20, 2006
    99
    Do you need to wait the 2 weeks?

    So far I haven't been that patient and get on the phone to the community Nurse or specialist as and when I need help. Not sure whether you are in a position to do the same.

    The specialist has so far always come out fairly quickly to see Dad when it's been needed or made adjustments to medication via the Community Nurse or GP.

    That said it's my second day of trying to get a call back at the moment :mad: I just keep phoning, the lady that answers knows who I am now!:D

    Scott
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,642
    Kent
    I agree. Whenever I`ve felt things are getting out of hand I`ve phoned the consultant for an earlier appointment.
     
  7. wendyg70

    wendyg70 Registered User

    Jan 9, 2008
    20
    Brentwood, Essex
    Hi Jackie

    Like your dad, my dad has dementia too and has also had a very sharp decline recently. He lives at home with mum and she is also finding it quite hard at times to cope with him, its not knowing how to deal with him. It has been a shock to us all how quickly he has changed.

    He is worse at night times and sometimes during the day, has trouble remembering who mum is and where he is (has been for the last 40 years. Like yourself we too tried to make him see that what he was saying was wrong and/or tried to convince him that mum was MUM and not some stranger who had just dropped in, but he just became more and more agitated and angry. Reading through posts and listening to advice on TP I decided to try and go with the flow even though i felt like we were betraying him in some way, but I have to be honest and say that from his point of view he is much happier when we agree and quite often the repeating of the question/conversation will stop there once we have agreed, ending in a much less stressfull time for all. Sometimes when he's going on and on though, i try not to participate too much in his conversation and try to change the subject completely. I have a two year old who my dad adores and quite often I can say things like 'Daniel, ask Grandad to help build your bricks or show grandad your book' changing the subject and giving dad something else physically to focus on.

    One thing that we have found particularly useful, is, when dad is agitated at night, mum will play music that he likes, we have found that more often than not this will calm him down enough to make the whole situation more bearable. If he wakes in the night with his barrage of questions and accusations mum puts the cd back on and he settles back down quicker than he was before.

    We have yet to have contact with the social services, this is a whole minefield which i am not looking forward to one little bit, to be honest i dont think i would know where to start but we'll cross that bridge when we need to and im sure there will be useful advice here to help.

    Mum actually left a note for dad's doctor on Monday to try and see if there is anything that he can be prescribed to try and calm him down when he gets into one of his 'moments' several times lately i have seen him lose his temper, even to the point where he nearly threw a 'maraca' you know one of those shaker thingies at mum. My heart was in my mouth!!! We are waiting to hear what the outcome of this letter was. She finds it difficult to discuss anything with dad by her side and he (as far as we know) is unaware of the severity of his dementia.
     
  8. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Hello Jackie and welcome to Talking Point, as for many of us it's both a wealth of info for us and somewhere to laugh and cry! I have learnt along the way that AZ is a bit like parenting, there's no manual and not always a right and wrong way of doing things. I assume you've already got your dad's GP on board, some are more helpful than others! I will say that it's quite common to have to fight with social workers, don't take no for an answer and don't stop asking questions.They should be able to offer you day care respite options for your Dad as he's still at home. I only offer advice based on my own experience and sadly it's been a painful one. I will say please look after your mum too, they don't like to bother us and try to soldier on.It's too late for my mum and dad now only has my sister and i to keep fighting for him. Please lean on this website for support, i cannot say enough how it has helped me personally. I wish you all the very best x
     
  9. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Swithland and welcome!

    Does your father have a CPN who visits? (Community Psychiatric Nurse)..Your mum could contact her..or as I have done in the past..if there are real problems phone the consultant's secretary and explain-we live in similar areas so I'm guessing your father and my husband may have the same consultant.

    There is respite care available - a sitting service and day centres- my advice is to let the consultant know there are problems as soon as possible and request a CPN visit.

    SS should do an assessment for your dad-and one for mum too as she is the main carer..keep posting!
    There's a lot of advice and support here

    Love Gigi x
     
  10. Scoop

    Scoop Registered User

    Nov 20, 2006
    99
    Made contact with the consultant at about 2 today and she was out to visit at 5:30. Adjusted medication etc.. My advice don't sit back and wait get calling, just the visit seemed to boost my Mum's confidence a bit and there is already the offer of some respite coming.

    Scott
     
  11. ROSEANN

    ROSEANN Registered User

    Oct 1, 2006
    909
    staffordshire
    Sylvia
    Iam so glad I saw your reply to Jackie.
    I too have most of my problems at night and like you I am told I am dominant and bossy and this is also when the swearing comes in to play.I try not to let it get to me but at the moment he is very trying as he is also very obssesed about things and keeps on and on at me,but next morning he cannot remember any of it so I am still wound up and he is okay.
    Perhaps I am not coping very well because I have just had a bad cold and am feeling sorry for myself.
    All the best Roseann
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,642
    Kent
    Oh Roseann, don`t I know it. It is becoming the story of my life.
    You might feel more vulnerable if you are under par, but even so it`s hard going to switch your moods to suit his.
    I burst into tears talking to my sister yesterday and had to put the phone down on her, because she was giving me advice and she hasn`t a clue.
    It`s only everyone on TP who really knows how it is.
    Take care xx
     

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