Early 'Early stage' confusion

Discussion in 'ARCHIVE FORUM: Support discussions' started by gemini, Oct 23, 2004.

  1. gemini

    gemini Registered User

    Sep 8, 2003
    69
    Nottingham
    I originally posted a thread in Sept 2003 when I first became a member, but deleted it a few days later as I was so confused at the time. The confusion still remains, but now I feel I have a better insight into why I am so confused..

    Please bear with me.... I do have a tendancy to ramble!!

    Basically, In January 2003 my mum in law came to live with us after doctors diagnosed that she was suffering from some form of dementia. She was infact diagnosed as suffering early stages of AD in April 2003. Prior to this, we had only seen her perhaps once or twice a year, as we had moved away from the 'family area' 17 years previously. However, we did keep in touch by phone. As a result, I opened my home to a person that I really didn't know very well. At first I couldn't do enough for her, and took on the role single handedly of sorting out all of her affairs. Unfortunately, after a while I found myself becoming increasingly annoyed with her behaviour. She'd get the washing in 20 mins after I'd put it out... told a family freind that we locked her in her bedroom at night etc etc... After 10 months of total stress, her house in Leicester was finally sold and she was able to buy a lovely small bungalow a stones throw away from us.

    Since moving into her own place almost exactly a year ago she has adapted very well and is very very happy.... She attends a 'group' 3 times a week, has made lots of new friends, and has a measure of independance that is good for her self respect.

    So what is your problem I hear you ask..... Well it's not her.... It's me... I constantly feel that I'm on a roller coaster. One day I'll go and see her and she's fine, you wouldn't even know that there was a problem.... the next day she will be completely 'La La'. I'm finding it so hard to switch my emotions to match her daily state of mind... I end up totally confused, spending the rest of the day trying to make sense of it all...wondering why she's done this or said that today, when yesterday she'd been able to follow everything I said perfectly...

    I need to know if my confusion is normal??? How do I deal with the stress that it causes? Is this early 'early stage' more difficult in some ways because she does still have 'normal' days... which by comparison then make the 'bad' days seem even harder to accept????

    I'm really so sorry to ramble, but I needed to get this off my chest. As things stand I am the only one that she can rely on, as even my own husband, (her son), let alone his siblings, seem perfectly happy to let me continue what I started in Jan 2003, ie taking care of everything. She even introduces me as her daughter sometimes!!

    I have stated on several other posts that I don't love her, but I do respect her, and want the best for her as she has entrusted me - not her own children- with her affairs. But I am so afraid that if I cannot come to grips with my confusion, any chance of feelings of love that may of normally developed, will end up being swallowed by feelings of annoyance and confusion and resentment.

    Many thanks
    Regards
    Gemini
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Gemini

    Family of dementia sufferers can be a real pain. Many will say how much they love their relation, but clearly not enough to try and help them.

    Dementia will give you the rollercoaster, in spades. It is the nature of it that things will vary from day to day.

    Hell, things vary from minute to minute with jan, my wife. Today she nearly ripped my ear off, kneed me in the groin and came close to headbutting me several times. Not on purpose, mind you. As she can't see now, she just uses her hands to grip things to prevent herself falling over - and if it is one's ear, then that is too bad. If she moves forward on her knees [she can't walk anymore] then if my groin gets in the way, so be it. She pitches over to the left, hard, all the time and my head can often be in the place hers will land. Makes for fast responses.

    But with all this happening, she will suddenly get a moment of clarity, her face will transform, and she will say something I can actually understand. Then, it's 'put on the groin protectors, we've lost her again'.

    The strategy for coping with the roller coaster is first of all to say - it is not her, it is the dementia. Then to realise that you need to simply take the person as they are, at the time. Don't expect anything good, and if something good happens, it will be a nice surprise. Good things WILL happen.

    No point in getting annoyed. You can't make them change, so just go with the flow. That is the best way you can help them.

    If you need to take the washing back out, ah well,just do it. Then maybe lock the door to stop it happening again.

    It is normal for sufferers to think they are being restrained/kept prisoner/stolen from/etc. You need to let the neighbours know the situation to avoid the police turning up at the door.

    Good luck! It IS worth it all, by the way.
     
  3. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Dear Gemini

    just a little re-assurance - Brucies Jan "lives" in a highly specialised environment with lots of padding on walls and floors. If you haven't picked this up already from previous threads you would be forgiven for whatever pictures your imagination conjured!

    Dear Bruce

    it sounds as though you have be in training for some Olympian event and I'd be first in the queue to be handing you a medal. (can I suggest some protective padding for you - my eyes are watering again and it is for neither of the usual reasons - tears or laughter)

    Kriss
     
  4. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear Gemini, I know how you feel my mother in law lives with us now and i care for her 24/7, she is mostly very confused now but when she first started with A/D she had days when i swore there was nothing wrong with her and the drs had got it wrong.Infact on a good day she could still probably fool someone for a short time she is very good at saying yes and no seemingly in the right places but she hasnt got a clue half the time what they are saying!Has for dealing with feelings i will be the first to admit that we have never really bonded even though i have been married 31yrs but since she has had A/D she seems to have changed and become a much happier person and we really have grown close in fact in a strange way im glad it happened because we would never have had this closeness we feel.Its a long road we travel and dont worry about being confused we all are you just learn to accept every day is differant and learn to go with the flow. Remember you are not alone we are always here.storm
     
  5. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    "Early stage" confusion

    Dear Gemini

    I think you will find from the threads that we all suffer from confusion, at the beginning it is particularly bad as there seems to be such a wide variation in day to day effects of the AD.

    When Margaret started to be affected I used to get angry thinking she was just being careless or even deliberately difficult.

    Even after she was diagnosed with AD I was a long time before I could accept that it was the illness and not her that was causing the trouble.

    All you can do is as Bruce says is to enjoy the good days which help you cope with the bad.

    Almost every carer I know, and most of the carers who use TP, complain about families not giving the support we think they should. I am afraid it is human nature that if someone is doing the job well (and most of us are) the rest are only too glad to let them carry the load.

    Keep on posting and reading it is a great help and solace.

    Cheers Barraf
     
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Gemini,
    Confusion is part of the 'deal', not just early on. You learn as you go along, you recognise that you have to be patient and tolerant, which is often nigh on impossible, but 'needs must'.
    So often I have thought my husband was childish, unreasonable, argumentative ..... and I have often been accused of spoiling and mollycoddling him, but with AD, the 'soft option' is the only option.

    Several things have helped me:
    1. A course for carers, organised by the Alzheimer's Society
    (it was pure luck that I found out about it just at the right time, after my husband had been put on ARICEPT and I struggled to accept the diagnosis, although I had known in my heart for a long time that something was very wrong)
    1. Books! In particular 'Learning to Speak Alzheimers' by Joanne Koenig-Coste, and 'The Selfish Pig's Guide to Caring' by Hugh Marriott.
    3. Talking Point. This is an absolute lifeline, as I am sure you have found out yourself ....

    I also think that Carer's Groups (often organised by the Alzheimer's Society) must be extremely useful, but so far I have not managed to join one - yet.

    All the best,
    Carmen
     
  7. Jude

    Jude Registered User

    Dear Gemini,

    The author of the Silent Pig makes the comment that a carer actually lives the confusion with the sufferer and shares the problem. So if YOU feel confused, it seems to be a pretty normal reaction.

    My conversations with my father tend to tie my brain in knots mostly because we go round and around in ever diminishing circles until I can feel my eyes crossing over......! After half an hour of one of his obsessional talks I feel utterly drained. The worst part is that an hour hence I know he will start again and it will be 'This is the first I've heard of this arrangement. Why haven't you informed me before'. [exit Jude screaming....] This goes on ALL day.

    My mother trots around closing windows and drawing curtains or vice versa, as well as taking everything out of wardrobes and chests and changing her shoes.

    Of course, when we have visitors, my parents don't do this and then everyone assumes that you are exaggerating or lying about the situation, which is enfuriating as well in a different way. Or we do have the same conversation but it's new to the guests so they don't realised that you've been through this particular loop 15 times already that day. After all visitors are only here for an hour or so.......

    This is why I find TP to be such a lifeline. Not only do you guys understand exactly what is going on so that I don't have to explain, but I can have normal conversations...... well, mostly. It's a great release for all the pent up frustrations and confusions that arise and it certainly helps to keep me as sane as I can be.

    Jude
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Thanks, Kriss, for your clarification.

    Another effect of all of this is that one's 'modified' lifestyle becomes one's norm, and in a weird sort of way, one thinks everyone lives like that and will understand....

    Jeepers, the way we live as carers - you couldn't imagine it, if you were not involved, and wanted to write a book on the subject.

    ...come to think of it, that is the situation of many of the so-called professional care workers. They just haven't a clue.
     
  9. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Early stage confusion

    Dear Carmen and Gemini

    Do try to join an Alzheimer's Society support group, I find them an almost essential lifeline. I'm only sorry that ours meets only once a month.

    Cheers Barraf
     
  10. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Thanks for your encouragement, Barraf!
    I am sure you are right, and I will try - and report back once I've been.
    Cheers. Carmen
     
  11. gemini

    gemini Registered User

    Sep 8, 2003
    69
    Nottingham
    #11 gemini, Oct 25, 2004
    Last edited: Oct 25, 2004
    Thanks everyone for taking the time to answer my post. I feel it has really helped to finally write down my concerns, knowing that they will be read by people who understand the difficulties of adjusting to the effects of this awful disease.

    I suppose deep down I'm feeling guilty that, so far, the situation hasn't turned out as it was supposed to. I had envisaged us getting to know each other by going on girlie shopping trips, and family day's out etc. But the reality is that she can be such hard work, even the kids get stressed.

    The biggest issue though has been that I have found myself increasingly questioning 'ME'... Perhaps I'm not as strong as I thought I was, or not as patient, or not as caring... Perhaps I'm just a selfish B***h.. I've found it all very mentally overwhelming at times... I genuinely worry that if I don't get to grips with my feelings now, then at some point in the future I may let her down.

    I do intend to take Barraf's advice and try to join a carer's group. I think this will help immensely.

    I knew that there wasn't going to be a magic answer, but I am so grateful at being given the chance to 'get it off my chest'. I feel better already. Thanks for letting me ramble.

    You're all lovely people

    Love
    Gemini
     
  12. Jude

    Jude Registered User

    Dear Gemini,

    Maybe you are part of the 'Selfish Pig' set of carers who like most of us have had caring thrust upon us!

    I have so many days when I think that I can't do this, don't want to do it or have absolutely no aptitude for the task anyway. I variously hate myself or my parents, the SS, Fate or anyone else who happens to be handy, for putting me in this position. It's rather like being stuck in jail for an unspecified number of years for some vague crime that I may have committed last life or whatever...

    In my better moments I figure that this is a job well worth doing and that I am equal to the task and better than most at looking after my parents.

    You aren't alone here.

    Jude
     
  13. gemini

    gemini Registered User

    Sep 8, 2003
    69
    Nottingham
    Thanks Jude

    You will never know how re-assuring it is to know that I'm not the only one who feels this way from time to time. I honestly thought that it was just me and that I must be the most horrid person in the world.

    Thanks for letting me know that I am not alone

    Love
    Gemini
     
  14. Jude

    Jude Registered User

    Dear Gemini,

    No worries. We can be horrid together!

    Jude xxx
     
  15. gemini

    gemini Registered User

    Sep 8, 2003
    69
    Nottingham
    I suppose I feel so much more irritated/angry/confused because she is not MY mum...... My feelings of confusion are coupled with feelings of being used by her own children - my own husband included - even my sister in law will often say that I am a saint, and deserve a medal as she couldn't cope with the situation.... and this is only 'early stages' .... I'm not even sure that the rest of her family really appreciate how she is..... Her own sister in law - despite having experience of an AD sufferer - recently tried to encourage her to get on a bus and ' see where it lead her'.... This is what i'm constantly up against!!! They'll phone her perhaps once a month and say 'oh she seems fine.... isn't she improving""!!!' I want to scream at them.... because 50 % of everything she's just told them is an illusion, and they havn't even got the sense to realise this...

    Sorry....I'm rambling...yet again

    Love
    Gemini
     
  16. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Gemini

    When Mum lived with us especially as she deteriorated last year I used to long for the normal life that my frineds and neibhbours had.

    I wanted to get up when I wanted to not at the crack of dawn, I wanted to be able to get a good nights sleep, I wanted to be able to chat to a neighbour without being yelled at from the front door like a naughty child. I was fed up at being the peacemaker between mu husband son and Mum when she had a 'mood' on.

    In my darkest moments I woold cry myelf to sleep, or take it out on the ironing board (which miraculously is still in one piece) and try and remind myslef of everything that Mum had done for me or given me over the years and that helped.

    I helped my Mum care for Dad who had cancer - he died very quickley just 3 months from diagnosis to death. With Alzheimers the problem is that there is no timescale if someone could have told me it will be just one more year then I think I could have cared for Mum at home to the end. But it might be 5 or 10 more years and that is what I find horrible and I used to hate myslef for thinking like that.

    geraldine
     
  17. Jude

    Jude Registered User

    This is the old cop out trick. 'Oh don't they look SO well'. 'Aren't you such a SAINT for looking after them so beautifully'......

    Oh YAWN! This tranlates as 'Thank God WE don't have to contribute and have to give up our jobs/time/effort to help you out'. Just pat the little carer on the back, etc and he/she will keep going like a wind up toy.

    It's the ultimate put down as far as I'm concerned.

    You can always sort the wheat from the chaff at the next meeting. When they arrive for one of the 'coffee mornings' just explain that you are leaving to go to the hairdressers and 'of course, you won't mind taking over for an hour or so. Back soon, byeeeee'.

    It's worth the satisfaction, even if you sit in the car around the corner with the newspaper and fluff up your hair before you come home again..... it tends to limit the patronising comments somewhat.

    Jude
     
  18. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all,I dont want to be a saint and i am sick of people telling me how well i cope and that mum as never looked better and sometimes i hate everything and everybody,but i find it easier to pretend that everything is fine and put my cheerful face on. I have long since given up the hope that the rest of the family will ever help or even understand.I will end up getting the oscar for best actress yet! storm
     
  19. gemini

    gemini Registered User

    Sep 8, 2003
    69
    Nottingham
    Jude that is exactly how i feel...

    They all seem to want her to be looked after and cared for..... but not to the point where they will put themselves out.....

    Gemini
     
  20. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Oscars

    Dear Storm,
    I couldn't be an actress for all the tea in china - what a drag!
    I don't have to do it so much for the sake of relatives, but what about all the 'pretend' stuff in conversations with my hubby (who has AD), when I have to force myself to agree with the most ridiculous suggestions, pretend that spending yet another hour looking for lost money, keys, specs etc. is absolutely no problem, honey spilt on the carpet 'doesn't matter at all', and big smiles most of the time when all I want to do is scream - it is "acting by force", every day of the week, and often worthy of some award or other .....
    (When I fail to pull off the 'acting' and show my tru feelings, I end up feeling utterly ashamed).
     

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