1. Emilia

    Emilia Registered User

    Jul 18, 2007
    Herne Bay, Kent
    Hi - This is my first posting so am not sure if I am doing this right.
    Just wanted to put my experiences to some use. Mum has had Alzheimer's since 1998 and I and the family have suffered each and every stage of the illness. She is now in the final stages and the only thing that gets me through is knowing that she is oblivious to how ill she is.
    I would like to think that my experience could be of help. I am happy to advise - but as many of you have said, the illness is different for everyone.
    Let me know if I can help.:rolleyes:
  2. chiplet

    chiplet Registered User

    Jul 18, 2007
    Hi there Emilia

    I have my partners mother living with us and she's been with us for 18 months now. She has vascular dimentia and is getting worse every day. I'm finding it particularly difficult because she doesn't want me in the house so now I have to walk in through the back door so she doesn't see me as she just starts saying that she doesn't want me in the house and starts bad mouthing me. I find it so difficult to let it go over my head as no one has ever spoken to me the way she does. She told me last night that I'm evil, wicked and that I'd go to hell. I'm only 35 and sometimes wonder if our relationship will stand this as we were only together for 6 months before she moved in with us.
  3. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Emilia,

    A warm welcome to talking point.

    You can join the discussion on any thread and we always value people sharing their real life experiences with others on the forum.

    If you have any questions on the way that Talking Point works, please fire away.

    Again, a very warm welcome
    Kindest Regards
  4. Emilia

    Emilia Registered User

    Jul 18, 2007
    Herne Bay, Kent
    Oh bless you. I know how you must be feeling. Just try to be as cheerful as possible and do let it go over your head if you can. She doesn't know she is doing it, doesn't mean it and it is nothing personal. She loves you and would feel mortified if she knew what she was doing.

    Just be there, love her and don't set yourself too high expectations. This phase may not last - so try to weather the storm. My mum often gives me a good telling off when I visit (in her garbled non-sensical way). It is totally out of character for her but I just try to see the funny side and give her a cuddle (if she will allow me to). Gentle coaxing, affection and touch can work wonders.

    Good luck - I can't say it will get easier - it won't. But, your ability to cope will get easier and you will soon accept that there IS NO sense to this illness, so don't try to make sense of it.
    I hope this helps from some one who knows.
  5. chiplet

    chiplet Registered User

    Jul 18, 2007
    thnks for that, I just feel so guilty because even before her illness I actually found her not a very nice person and with her illness she's even worse. I know that we are lucky as my boyfriend and I can still go to work and get away from it as she has a carer with her in the day so we only have her evenings and all weekend but she's so forgetful that she can't be left alone at all so it just means that me and my fella never actually do anything together. Comes to something when you actually wish you could go to the supermarket together !
  6. Emilia

    Emilia Registered User

    Jul 18, 2007
    Herne Bay, Kent
    At least you are being honest by admitting that you didn't actually like her very much in the beginning. All the more reason to pat yourself on the back and tell yourself what a great sacrifice you have made. I only hope that this won't come between you and your fella. My husband very much took a back seat when my dad was alive as we had him and mum to cope with and Dad was very stubborn and blamed me and my sister for putting mum in a home. It naturally did put a strain on our relationship.

    Would your partner consider that the time has come for mum to go in a home. Believe me, although it is a terribly hard decision, in the end you at least know that you can walk away after each visit knowing that they are well looked after, clean, fed etc. It was the best thing we could have done, as Dad could not cope. Mum is now very challenging too - so there is no way we could cope with that too.

    I think for your own sanity and health you must consider this as an option. It is not a sign of failure, more one of being realistic and knowing that you have done everything possible to make her life more comfortable.

    Your relationship is very important - do try and put it first, if you can.
  7. chiplet

    chiplet Registered User

    Jul 18, 2007
    Hi Em

    Cliff refuses to put her into a home until she is completely non compus mentus and incontinent etc. He won't even talk about it to me as I've told him that I think she should be in a home purely so she has 24 hour care and I worry about her falling in the night and us not hearing her. I think it would be better for her stimulation wise aswell but he says that he's promised her he won't put her in a home so he's sticking to it. He doesn't seem to see that she's getting so bad i.e she is wetting herself and she is adamant that he is actually her husband who, in fact died 35 years ago and that's why she hates me cuz she thinks I'm Cliff's bit on the side !
  8. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Chiplet

    I, once upon a time, had the attitude of your partner.

    My parents weren't going into a home until they didn't have the capacity to know where they were!

    Gradually I realised I wasn't really doing them any favours in trying to cope myself and the inevitable crises happened (Dad collasped with slow heart rate and was admitted to hospital) and I was forced to admit to myself they would be better of in care.

    It takes time to learn that other people can look after your Mum/Dad just as well.

    Although I still have a guitly concience, especially when Mum pleads with me to take her home, I know that they are in the best place possible to deal with their needs and in a way I have my life and the rest of my family back.

    Never say never

  9. #9 elwoodlpool, Jul 19, 2007
    Last edited: Jul 19, 2007
    Im not happy at all with Chiplets comments, yeah you may not of liked your partners mother but as far as i can tell your now judging her on her illness. You cant even imaging how bad it must be for your partner to see his mother going like this. Im going through thre same thing myself with my mum. Who has VASCULAR DEMENTIA and ive got to say if i had you saying these things( QUOTE" Cliff refuses to put her into a home until she is completely non compus mentus") WITH THEM COMMENTS YOU'D BE OUT THE DOOR.

  10. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Emilia, welcome to TP. I am always sorry to hear of another sufferer, but, I am sure your experiences will be of help to many,and your advise gratefully received. Best Wishes to you and your family. Taffy.
  11. Taffy

    Taffy Registered User

    Apr 15, 2007
    Message For chiplet.

    Hi chiplet, I can see that this is all hard for you to except, just wondering, as you have only been with your partner two years...6 months before living together and 18 months living together... that maybe your partners mum had dementia before you actually met her, as, usually dementia is diagnosed a year or so after onset. If this been the case then you wouldn't of really known her. The behaviour you describe isn't uncommon. My own mum pre dementia, very, very, rarely had a cross word about anyone, when the dementia hit, I kid you not, even the pope wasn't safe. This disease is a blight, but, be mindful it is a disease, something that noone can control, all we can do is try and understand it, and it's effects. Your partner sounds like a wonderful son and he alone will no when the time is right to hand over his mum's care.The effects of this is enormous on you, truely I sympathize with you, also this is devastating on your partner torn between you and his mum. United you'll stand, dived you'll fall. Sincerely hope that a happy medium can be meet.Take Care. Taffy.
  12. janetruth

    janetruth Registered User

    Mar 20, 2007
    Hi Chiplet

    I agree with what Taffy is saying, when you met your partners Mum she was more than likely suffering AZ.
    If you have a strong relationship and lots of information about this terrible ILLNESS then LOVE will get you ALl through those difficult tomes.

    You did not say how old you are, not that it makes alot of differnce I was just curious.
    Also, how old is your partners Mum and is she on any medication for the AZ?
    Sorry to sound as if I am being nosey.

    My 82 year old Mum has AZ and has lived with me and my partner ( of 11 years) for nearly a year. I could tell you lots of negative things that have taken place since then, but our love for each other has kept us both strong enough to cope.

    I hope you can find it in your heart to accept what your partner is going through, watching your own Mum go through so many stages is tough.
    Only he can make the final decision and that will be when he is ready.

    I too, I know, will be struggling with my emotions, if and when that time presents itself.

    Take Care
    Janetruth x
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mark,

    Can I ask you try not to be so judgemental of other members, and to word your posts with a little more diplomacy.
  14. carolr

    carolr Registered User

    Jul 12, 2007
    Well said Grannie chiplet will be devastated to read that comment, we all go through stages of feeling angry towards our loved ones but the guilt is the hardest to cope with, now this poor girl will be racked with guilt for saying how she feels, wether we agree with her or not we should support her, tommorrow she will feel probably feel differently and remember that she is allowing her partners mother to live with her and taking such bad treatment. Yes we all know the disease is to blame but sometimes we all struggle not to blame the sufferer and that is being honest.
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    Yes and only when your living in it 24/7 375 days in a year, year after year then and only then can you really comprehend , how stressful it can became on a relationship
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    #16 Margarita, Jul 19, 2007
    Last edited: Jul 19, 2007
    I would also like to add

    That when you say
    Maybe she was in the illness when you meet her , but no one new and over the time you got to know her the disease has got worse , she became more clinging to your boyfriend and resent you for spending time with him, so call you all the name under the sun ( just a thought ) its all part of the symptoms so don't feel guilty .

    Its all just learning to live with it , and not taking it personally , I do hope your boyfriend has other members of the family that can care for her , to give you a break away for a week or 2 , just the 2 of you
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi chiplet

    You must be feeling terrible. How awful to have to sneak into your own home, and put up with abuse from someone you're trying to help.

    The first thing to consider is that the lady is ill. She's not going to get better, and she will certainly get worse, though the abuse may stop -- or it may not. The incontinence will certainly not get better, and you're going to have to get used to cleaning her bottom, and changing her pads. Not a pleasant prospect for someone you barely know, and whom you have never liked.

    So. She's not going to get better. Your partner won't put her into a home. Do you want the relationship to continue? How much do you love your partner?

    As I see it you have three options. You can try again to persuade your partner that his mum should have 24/7 care. You can walk away. and leave your partner to cope alone. Or you can decide that you really want to make it work, hard as it is.

    You have that choice, your partner doesn't.

    I'm not trying to be hard on you, believe me, I know what hard work it is, and it must be so much harder when you don't love, or even like, the person you're caring for.

    No-one here will pressurise you into a decision, and no-one will criticise you, whatever you decide. But no-one can make that choice for you.

    Could you perhaps go away for a few days on your own, so that you can think about what you really want? It would give you all a breathing space.

    Good luck, whatever you decide.

  18. tazzi22

    tazzi22 Registered User

    Feb 17, 2007
    I'm struggling myself just now with my mums verbally aggressive language towards me. She does not know i am her daughter and doesn't like me and wants me to leave when I am sitting with her when my dad is out for a break. I do know it is not my mother talking as i know she did love me so much and i try to think of when she was not like this and made sacrifices for me when i was younger just to make me happy. She was such a thoughtful person who would hate to think she was like this. I spoke to her dementia care coordinator and he said i should try and stay as calm as possible (even if i am frustrated with her) as she will pick up on my body language and react even more. Try and distract her attention to something else and usually she comes out of it and back to the calmer mum.

    Hope this helps
  19. strawberrywhip

    strawberrywhip Registered User

    Jun 26, 2006
    Home or care home .....

    Chiplet ..just been through the same agonies, except that we have been married for 30 years, and m-in-law was diagnosed last summer and has progressed very rapidly. Husband ended up as full time carer, she was living just down the road from us ..but gradually there was no time we could call our own. We had the benefit of an excellent old age psychiatrist and team who gave us very good advice ..we took her to a local EMI centre ..under protest every time, but once she got through the doors she had a lovely day ..but we still had the same battle every day. At that time we started looking around at EMI homes just to get an idea.
    6 monthly check ups showed regular signifcant decline in her condition. Luckily another member of the family who shared her care when we went on holiday could see this rapid decline and was also able to say ..we cant cope any more. I have heard this comment about ..only when mum doesnt know me at all ..then I know she will be ready....
    Well when she had been brought back by the police again having gone shopping at midnight we all agreed the time had come. We coldnt get her into our first choice, but found another lovely friendly place near another family member.
    She went in last Monday week. It was traumatic and upsetting ...we did not tell her in advance .. her memory is so bad she couldnt retain information for 10 minutes. She is still settling in ...the home are great ..she gets agitatited from time to time and tries to escape ..but is slowly settling and they have asked the local psychiatrist to come and review her. Our problem was that she is incredibly active and wanders all the time ..they are considering a mild sedative to settle her agitation which they will then wean her off. We will visit once the home feel she has settled ..may be in another week or a fortnight ..happy to be guided by them.
    We have our lives back ....the relief is enormous .....the guilt is also ...but .... my elderly parents need support, our children need support ..we need time and some R & R ,,so this was absolutely the right decision for us. Don`t wreck your life and your mariage by being a maartyr ..let someone else share the care ..even if you start with day care or respite .she will not want to go ,..but you must look after yourself.
    Very best of luck to all who are coping with this heart-breaking condition
  20. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Support for all

    Eeh, I am no good at keeping pace with who posts what. I am just aware that in this group there are a couple of people who are not coping very well, and a couple of people who haven't worded their replies very well, and hence a couple of people who have got a bit upset.

    I am sure that none of us mean to upset anyone on this website. Emails are a good way of communicating and a bad way as well. So please, all, be careful about what you say (pHew I am the worst at it!), and be careful how you interpret what you receive. Lots of people are better on the phone - I am useless. I'd much prefer face-to-face, but that can't be.

    Please all accept that we all mean well.

    Much love


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