first post - hi everyone -mid/late stage carer

Discussion in 'ARCHIVE FORUM: Support discussions' started by 70percent, Apr 6, 2008.

  1. 70percent

    70percent Registered User

    Apr 3, 2008
    1
    Kent
    I'm new to TP although not a new carer, my mother was diagnosed with AD two and a half years ago (approx a year after I started - consciously - noticing she wasn't her bright sociable self). I've met very few people who are in my boat, and kept meaning to join the forum as its seems such a supportive community. My father, who had his own physical problems and who died last summer, sadly never came to terms wth mum's condition and though he tried, could never be very supportive. In fact I'm glad he's no longer here to witness her deterioration (although the decline could be partly due to his sudden absence).

    Anyway after several months of just about managing her care with short carer visits each day and my staying at her house nights and weekends, with mum staying stable and relatively happy, she suddenly started having delusional and paranoid episodes where she would end up crying with anxiety and fear and so would I. After a traumatic six wks she's now a lot calmer with an anti depressant called Sertraline and a small 25mg dose of a tranq called amisulpride - and a live in carer at £590 a week - only 2 weeks in but the barrier of having a stranger in the house has been breached and mum's taken it so much better than expected.

    It's not perfect, mum still has paranoid confusion once or twice a day usually, but it's for a much shorter time. she's much better in herself - though I suppose I'm tempting fate. But at least I have a certain amount of my "old" lovely mum back and for that I'm so grateful.

    I'd like to ask others how they cope with their loved one's agression - how they can avoid taking it personally and getting upset. Also, mum is the third generation (along with brother and cousin) to suffer dementia - has anyone had experience of getting tested for the faulty gene? Is t worth finding out? I don't have children so it would only impact on myself.

    Many thanks for taking an interest.

    Jude
     
  2. Scoop

    Scoop Registered User

    Nov 20, 2006
    99
    Hi Welcome to TP, you'll find alot of useful help and advice here, I always find it great just to be able to write stuff down sometimes too!

    Hmm, dealing with aggression, tricky, we have had the Police involved twice now :eek:. Dad now takes Olanzapine which seems to keep things in check most of the time, Mum still gets some bad language or shown a pair of fists from time to time but she has learned to just walk away, very tough for her to deal with though..

    I still truggle to deal with the fact my dad looks the same but is such a different person from 2 years ago - infact he's different from last week and will be different tomorrow...

    Best wishes

    Scott
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,536
    Kent
    Hello Jude. :)

    After two and a half years since diagnosis and possibly nine years since onset, I still find it almost impossible not to take aggressive and hurtful comments and situations personally.

    We are continually having to remind ourselves it isn`t the real person, it`s the condition, but it`s so difficult to remain detached, when you love someone.

    So if ever you find the answer, please let me know. ;)

    Regarding genetic testing........if there was a cure, I would consider testing worthwhile, but with no cure, what purpose would it serve? Even if I had children, and had several generations of dementia in the family, genetic testing would only help them live in fear.

    This is my opinion only. No-one knows what tomorrow will bring, we could be run down by the proverbial bus, so it`s best to live life to the full and forget what might or might not be. After all, we all have to die of something, don`t we.
     
  4. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    First Post

    Hello Jude

    Welcome to TP

    It is extremely difficult, and it is not always possible to walk away which is the standard answer. I was lucky that Margaret is only 5 ft tall and weighs about 7 stones and I am about 5'10 and 12 stones so I could cope with the physical side without any problem. She was refused day care and one of the carers who came to the house asked to be replaced because of the violence.
    I found the verbal abuse more difficult to deal with, it is just as hurtful even though you are aware that it is the AZ and not personal animosity that is to blame. Eventually I coped by thinking of, and treating Margaret as a child, not everyone's cup of tea but it worked for me.

    Fortunately she has now passed that stage and the aggression has almost completely gone.


    With regard to genetic testing (even if it is possible) I agree completely with Sylvia, as there is no cure why put anyone under further stress.

    I am glad to hear that your mum has taken to the new care arrangements, it should give you a little needed relief, I hope everything continues to go well.

    Cheers Barraf
     
  5. kacee

    kacee Registered User

    Mar 29, 2008
    8
    Hi jude,
    A times I took the agression personally and others i found the ability to cope. It depends what else is going on in ur life. I found, finding a balance helped. I was working with adults with challenging behaviour initially. I changed jobs and found I was able to duck and dive the slaps and deal more effectifly emotionally with my mum.

    I would like to know if I am predisposed to AZ. Why.. Well I would prepare a living will. and get my stuff in order and get me a care plan...sounds barmy but at 48 I still dont feel i want to do all that, but the threat of AZ would be motivation.
    It sounds silly but I have been vegetarian 27yrs. I would hate to be fed meat. I am sensitive to caffine . Noone else in my family would beable to communicate this . So I would like to prepare. Predisposition doesnt mean u will get it. But I went on an awareness course and the woman there said that the changes prob start very early on and we compensate. Scared me a bit.

    On the lighter side. I could use it as an excuse (before it got too advanced) to slap a few people Ive met over the years.
     
  6. Lotti

    Lotti Registered User

    Jul 31, 2007
    52
    Hello Jude,

    I do not think I will ever get used to not 'taking it personally' but as Kacee said a lot depends on what else is happening in your life at the time as to how you are affected.

    I try to think of my poor mums feelings what she must be thinking to be acting this way i.e. frightened, loss of control over her life, inability to do the things she used to. Somehow this helps me cope.

    Regards
    Lotti
     
  7. jane@hotmail

    jane@hotmail Registered User

    Mar 13, 2008
    49
    Bedfordshire
    Hi Jude,
    I can very much understand how you're feeling at the moment. Like you, my dad was in denial about how bad mum was getting, although because he was getting very poorly himself, he got a live in carer about 11 months ago. Sadly he died in February and mum has got worst since he died, I believe because she is in grief. The last couple of weeks have been terrible. Mum has been so scared and this then turns into aggression. I find it extremely difficult to see her like this and I don't think you can ever really get used to it, after all, this is your mother, someone who, while they were well would care, cherish, and see no harm come to you....so I remind my self of that and try to explain to her that I understand why she is scared or why she has scratched, pinched, pulled my hair, and it's o.k, but I'm trying to care for her the best I can and I'll always keep her safe and surprisingly it really calms her down! I'm not saying it's easy to do every time, but I find I have to remind myself constantly how she was before she was ill and it helps me put it in perspective. After all my mum is 80 and getting weak, so she doesnt really hurt me, but it often comes out of the blue and I feel hurt because of the above reasons. I worry more about her getting like that with the carer, because I'm scared they will refuse to care for mum.
    I'm glad, after a rough period, you've got things sorted. It's a terrible thing to have to go through, but try and enjoy the nice times and having your 'old' mum back. However fleeting it may be. You're doing a great job and I'm sure your dad would be proud to see you taking such good care of mum.

    Jane
     
  8. bated01

    bated01 Registered User

    Apr 4, 2008
    12
    Coventry, England
    Hi Jude,

    It is my Nan that i am looking after she is 87 and my grandad who she lives with is almost 88. I find that not only is he not supportive he genuinely feels that she will get better and be her old self again.

    I have tried to explain how to communicate with her as i seem to have developed ways of calming her down. I pick a time from way back which i know she will remember becasue that's where she goes when she's not herself. And aske her a question about an old friend or school- once she is talking about that she really calms down.


    However i do find that my grandad just seems to Exacerbate the situation. He doesn't understand why she can't remember things and he gets annoyed when she forgets about a doctors appointment constantly saying " you did know you had an appointment i told you last week" when in actual fact she can't remeber something 30seconds after telling her.

    I have told him so many times that he needs to approach her in a different way but i don't think it is getting through. It does make it more difficult becasue when he is like that she gets more aggressive and then i have to go and sort it out. Wonderig whether her living with him is the best option but i don't want to separate them?

    Any suggestions?

    Sorry about the essay! Deb xx
     
  9. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    HI there and welcom to our website

    I still don't like the aggression, but for me, its from my lovely dad who has never raised a hand to me in 49 years.

    Yet, he is now happy to push me down stairs, throw me out of the bungalow, shout and indeed scream at me that it is all my fault and I should be dead.

    So, on a day to day basis, I either come back home full of bruises or am looking forward to my wine to calm me down.

    But, hey, tomorrow is another day, and I just have to get on with it.

    When this hell is over, I am having a very long, far away holiday, and that is what makes this hell possible.

    So, for you, keep your spirit and don't look to the future, but take a day at a time.

    Love AndrearX
     

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