1. redlester

    redlester Registered User

    Mar 29, 2006

    Mum was diagnosed around a year ago and has now got to the stage where she cannot cook herself meals properly or regularly, or take her pills herself, etc. I have, against mums wishes, organised for a home care service from Social Services, which started this week. The first couple of days I was present, and mum put up with someone coming into the house (through gritted teeth). Yesterday I was there briefly and mum wouldn't stay in same room as carer, nor let her do anything.

    Today was the first day I left them to it. Apparetly mum was very aggressive, was hiding in bed, wouldn't come downstairs, and chased the carer out of the house basically (she was able to get in via the keysafe we had fitted).

    What are my options if mum wont accept help? She will accept help from me and me alone, but I cannot do it all, or anything like it all. Mum just wont accept that there is anything wrong, just insists she's ok and wants to be left alone to look after herself.

    I am permanently on the verge of tears and haven't eaten properly for a week, am so worried.
  2. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Did you talk to the Social Worker?

    It is early days, your mother may get used to the carers coming in.

    When my mother's carers started she didn't want them to do anything, and my brother told me not to stay in the room with them, but I stayed in the room until she got used to them.

    It took 11 days before she would let them give her a proper wash.
  3. redlester

    redlester Registered User

    Mar 29, 2006
    Yes I'm in touch with them. The woman who runs the department is personally going to go and see mum tomorrow. They have previously told me they think me being there is not good because mum needs to realise and accept that she needs help from other than myself, so I want to stay clear and let the professionals deal with it. All we can do is see how it goes, but at present mum is saying she would rather become ill than accept help (when we mention her needing to take pills etc). If she's like me, which obviously she is, she is VERY stubborn and will think nothing of cutting off her nose to spite her face.
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Hi redlester!

    How I empathise with you .... !!!

    Mum's consultant was brilliant a few months back when she 1) recognised mum's 'stubbornness' and refusal of all help offered even back then .... and 2) the fact that I cannot sustain for ever even trying to do everything .... even if mum were to stay at 'current levels' ...

    Through said consultant we got this 'buddying' in place (AgeConcern Carers' Outreach Service) which is meant in part to be a precursor to gently getting mum to accept help in her own home other than from me.....

    Part of me thinks I'm part of some 'subterfuge' - in fact quite a lot .... if I want to suggest anything to mum I know it's best that I don't do it but prompt a professional to do it ... talk about 'collusion'!!!!! If her GP tells her he thinks something is right for her she'll go along with it without question ... me - well.... I know nothing, do I? Except what is realistic...... of her abilities and mine.....

    Let's hope the SW works that kind of magic for you tomorrow .... have you talked to SSD about the impact it's having on YOU? I've noted people here have mentioned a 'Carer's Assessment' - not been down that road myself - sure someone else will be along to help on that ....

    You know, there's nothing wrong with having a good old sob - you need your energy for other things other than holding back the tears...... plenty of virtual shoulders and tissues around here for you......

    Thinking of you, love, Karen, x
  5. redlester

    redlester Registered User

    Mar 29, 2006
    I feel better already, thanks for that. x
    If social services can't get anywhere with her, I may have to get her consultant involved - see if he can talk any sense into her. Lets see what tomorrow brings.
  6. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I stayed in the room to start with, but told her quite plainly that I wasn't going to do the things the carers were there to do. After about a fortnight the carers had turned into her best friends.

    It didn't work with the pills though. "I don't need carers to give me pills." So I have no idea whether she was taking the Aricept as prescribed. In the end it was her choice, as doctors and social workers thought she was able to choose.
  7. Lynne

    Lynne Registered User

    Jun 3, 2005
    You said it!

    :rolleyes: Oh boy, I bet there are a few heads nodding in agreement to that Karen! Mine certainly is.
  8. panda

    panda Registered User

    Apr 16, 2006
    Same here

    I went through and am still going through the same thing. Mum still thinks she is suffering from grief and will soon get better..... I told her the lady was coming to give her the pills just for now to make me feel better and to stop me worrying. She accepted this and doe's not even realise yet that she comes in twice a day. Or you could say you are not well and she is just getting help until you get better....We have to become more creative when dealing with this terrible illness you know your Mum best if she will not accept help will she agree to it if she thinks she is being the helper. ?
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    #9 Margarita, Nov 30, 2006
    Last edited: Nov 30, 2006
    Yes, I found that in the early stages; mum would take medication for me to make me feel better, she was very suborn nothing wrong with her , she new what she needed. I use to feel so much despair, cry.

    I feel a person with dementia/AZ does not see logic like we do , there is no logic to them

    Like your mum, she only wanted me. I did not know that was part of the dementia back then.

    My circumstances are different from you as back then, I did not have any support out side network, only could get a cleaner in, and ended up looking after mum full time and working of on for 2 years. I gave up and ended leavening job. now back at work . mum take medication and carer come in.
  10. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Yep I'm nodding too.

    It took us ages to get carers coming in for mum, and meals on wheels, but it all fell apart after 3 days.

    We also had a key safe fitted, so what did dear old mum do, barricade herself in. God only knows how she managed to drag a spin dryer from the kitchen to behind the front door, must have taken her all night.

    So the upshot was, we cancelled the whole lot.

    I stopped doing things for her for a while, my brother used to go in every day and check that she was OK, but that was all. Talk about tough love, it was awful, but on the advice of the Consultant and GP they both felt that just talking to mum about it wouldn't work because she would just forget the conversation, they thought to show her by actions that she would benefit from the carers and meals on wheels was for her benefit.

    To be honest I didn't hold out any hope that it would work. It did, took nearly a month though, (the longest month of my life), but she eventually agreed to have the carers and meals on wheels back. She was a minx mind, they never managed to get her in the shower, or actually do much for her, but it did take some of the pressure off us.

    What I'm trying to say is, what might look to be failing this week, might be different next.

    Hang on in there.
  11. redlester

    redlester Registered User

    Mar 29, 2006
    I called in to see her last night. She seems to have taken to simply hiding in bed all the time. She was awake but in bed at 6.30.

    She is utterly adamant that she will not accept help. It seems to be an issue about my dad (who died 7 years ago) "this is your dad's house - he wouldn't have let people come in..." is the constant mantra.

    Slight complication is she has to take Thyroxine every day for underactive thyroid, if it was just the Aricept I wouldn't be so concerned.

    The real problem is she has lost the will to live. She has told me numerous times she's "too old" and wishes she were no longer here. So any arguments that "you will become ill" simply don't bother her... :(
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello redlester, With the best will in the world, you can only do your best. You cannot make your mother accept help, take medication, allow stangers into her home against her will.
    My mother was exactly the same. She was also on Thyroxine. I got her a dispenser, but it was a waste of time as she played around with it and didn`t know one day from the next. I organized a cleaner, but she said she was no good. I got carers in, but she said they were looking round the house to see what they could take.
    In the end, I gave up. I went morning and evenimg to give her her medication. I was only a mile away, so took her a portion of our dinner, at the same time. I also ensured she had food in that took no cookimg, like bread, cheese, crackers, friut and yoghurts.
    Eventually, she agreed to day care. I think she prefered this to allowing people into her home.
    Bed is a comfort, `back to the womb`. It`s no problem if she goes to bed early. At least she`s safe.
    Just do what you can, which I`m sure is your best, and take one day at a time.
  13. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Yes, we had a lot of "rather be dead" stuff too, unfortunately we were too used to that.

    I tried so hard to keep reminding her of the things she still liked doing. Also tried guilt-tripping her by reminding her that if she died, in one of the various ways she suggested, I'd get the blame for it.

    But in the end, if she was competent to choose, it was her choice.

  14. pammy14

    pammy14 Registered User

    Dec 5, 2005
    Yes my sister was the same with carers coming into the house. She didn't really trust them and was stressed all the time they were there just stood up wouldn't sit down, Also refused to let them help her wash and instead got up very early and put on her clothes so than the wouldn't make her take them off. It just didn't work so thats when we took her to our house to live at least it stopped the stress of worrying about her being alone.
  15. redlester

    redlester Registered User

    Mar 29, 2006
    #15 redlester, Dec 2, 2006
    Last edited: Dec 2, 2006
    Unfortunately thats not an option as I am out at work 7.30-6.30 so even if I lived with her would hardly see her during the day. Also, when mum was in the early stages of this, she did say to me that she didn't want that, she didn't want it to affect my life in such a way. And I know that was my mum talking and not the disease which is speaking to me now. So I vowed I would not let this thing ruin two lives. It's very hard to be so cold about it and it breaks me apart at times, but you must know what I mean.

    She wouldn't even let them in through the door yesterday apparently. She seems to have retreated to her bed sort of semi-permanently now. They will keep trying over the weekend but if we get nowhere will have to stop and re-think next week.

    Her consultant says his team may have to get involved now on a closer level to assess the situation regarding the progress of her illness. He mentioned the possibility of us having to accept that she can no longer stay at home on her own, which is my ultimate nightmare. If she has to go into a home it will be against her will and will be a major trauma...
  16. Strong

    Strong Registered User

    Dec 2, 2006
    My Mom was diagnosed with Alzheimers 5months ago!!

    I'm 33 and my mother was diagnosed 5 months ago of Alzheimers at the age of 60.I'm the youngest of two boys and very close to her.It started a couple of years ago and nobody would listen.She repeated herself alot.She is my bestfriend,mother,dad everything to me so it's sad to see her like this..I'm new at this so any information would be great.My mom is at the point she can't cook meals or even write her own name and repeats herself more than ever she also can't say what she wants like get the broom etc..She has a heart the size of the world and so strong.She raised me and my older brother worked her butt off so we could have the best clothes sneakers.We didn't have money but she gaves us love and put food on the table and raised us to be good people..She understands that she has it and we joke about it when she says something 20 times but when she can't remember something I let her try to tell me what it is..I thought crosswords and being around other people it would help her.She doesn't want to go to a daycare, she's happy at home.I think she does good at home but needs to get out.I see her 5 times a week and talk to her everyday but I think I have to get a nurse to help her.I'm buying a house and she's going to move in with me this spring.She will still have her own apartment inlaw and I'll get a nurse when I go to work..Anyway sorry to blab but any imformation anyone could help me with on Alzheimers would be great....Thanks
  17. pammy14

    pammy14 Registered User

    Dec 5, 2005
    hi redlester

    Yes I gave up myfull-time job and found an afternoon one with hours that suit us fine. A carer comes in when I am at work. My sister gets attrendance allowance and pension which pays FOR THE CARER AND CONTRIBUTES TO THE RUNNING OF THE HOUSEHOLD SO WE ARE NOT REALLY ANY WORSE OFF. WE HAVE HAD HER WITH US FOR 18 MONTHS BUT ITS GETTING HARDER NOW SO SHE MAY HAVE TO GO INTO FULL TIME CARE SOMETIME SOON, BUT NOW i don't think she would mind as she has no real conception of passing time and wouldn't realise she was actually living there.sorry about capitals i'm not shouting


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