1. Loulou

    Loulou Registered User

    Jul 22, 2005
    Haven't been on the site for ages - so much has changed but still seems the same - make sense ?? !!
    Mum definately getting worse - in hospital for short period and still not any better even though home now. Continuously says how much she hates the house / not right / evil etc etc - so bad now that I have actually started looking for alternative accomodation. Family support also getting worse (if possible !!) - feel really resentful and have even taken to thinking how things will be when mum no longer here - really dont think I will ever forgive siblings for lack of support - we used to be so close (well I thought so anyway).
    Feel constant guilt for absolutely everything ..... thinking of the future without mum / having power or attorney for her money (even though she does not seem to notice the difference ) / how I reacted last night to yet another episode...... every time I make meal mum eats couple of spoons of hers (after I have chopped it up ) - stores it in her mouth and I have to remove it with tissue / needs toilet / needs to be cleaned up - by which time I have no appetite - BRILLIANT FORM OF DIETING I CAN ASSURE YOU !!

    Sorry for moaning BUT might as well get it off my chest 'cos probably wont sign on for another 6 months
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi LouLou

    I hope posting on TP has relieved some of the pressure you are feeling. We're here for you whether you post once annually, monthly, in the wee small hours.

    ...oh, and we understand as we are there ourselves, or have already been there and may be able to cast some light.

    Best wishes
  3. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    sorry things are so bad ,i have been there, are you getting any outside help?if not it is time to seek it ,you sound like you are at rock bottom ,Do you think it is time to put your mum on blended food ?as she may be forgetting how to swallow ,i found it much easier when i did this ,is it possible to have your meal at a different time than you mum ,(if you have a carer in )please post more ,if only to let of steam ,STAY STRONG .ANGELA
  4. Loulou

    Loulou Registered User

    Jul 22, 2005
    I think I am my own worst enemy - keep saying that mum would not accept outside help BUT If I am honest it is actually me that is too proud to accept it - I dont see why we should need help from strangers when we are quite a big family - and I do think it would upset her even more to see another stranger in the house (half of the time she sees people that are not there anyway )
    I do feel pretty low at the moment and again the option of blended food seems like a copout. She wont eat if I am not eating - I now have an empty bowl and pretend because it seems to help her to try a few more spoonfuls. She often picks up bananas and then forgets why she has them in her hand - BUT I do manage to persuade her to eat them - I suppose it's better than nothing.
    I keep finding myself getting ready for work in the morning (a couple of my sisters split the daycare bit - I work my lunch so I get home earlier) and just looking at myself in the mirror and crying - feel so frustrated - this has got to be the worst ever scenario - always thought my mum had such a bad life that she deserved to enjoy the rest of it - always thought it anything it would be Cancer / natural causes - this illness never even came into the equation.
    SORRY !! for sounding sorry for myself - I know there are people on here with bigger problems than me - Best of Luck to you all
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hey Loulou, now don't you go apologising for stuff thats not your fault girl! The feelings you have go with the illness. The frustration, despair, loneliness, anger, we all have the T shirt. You can wear it anytime here on TP. With your Mum not eating, you are faced with a double whammy, not only is she confused, but now you feel responsible if she starves herself too, boy does it get to you I know.
    What you say about not wanting strangers to help, I did that one big time too till I almost lost the plot. Then, when I did get help, I found that they became good friends. 14 months after Mum's death, I am still meeting up with some of the girls I met when they helped nurse her, they are now real family friends. Don't be afraid to take this step. If it really doesn't work, you can stop and try again later when you need to.
    This is a rotten illness to cope with, it eats up your loved one, leaving you with snippets to try and stick together somehow. You can't fight it, you can't win, I hate it!
    Please keep posting, don't bottle your feelings up, they just fester, share them with us, we do understand, we do care, and we do want to help in any way we can. Sending you a big hug, lotsaluv, She. XX
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    LouLou, you DO need help ...

    For yourself, because you sound profoundly depressed (quelle surprise!) and would probably benefit from seeing your Doctor for some personal support (yes, that could mean anti-depressants, they can help) and also it would be a good starting point for making outside support contacts. None of us are SuperMan/Woman, however much we would like to think that such a personal issue can be handled purely within the family - and particularly if YOU are the only one doing the graft!

    :eek: If you become ill as a result of taking all the strain yourself, who is your Mum going to end up with then? You KNOW this is true, you said it yourself in your opening line - you are your own worst enemy and right now you need friends and support.

    Please, please, take a cold hard look at yourself; ring up today and make an appointment. God Bless
  7. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Loulou,

    I would just like to echo what Sheila said.

    We had never had any contact with government agencies like Social Services before my father-in-law's AD. I felt really quite strange making that first phone call.

    We were put in touch with an elder persons' team social worker and she came to meet us about four weeks later. My mother-in-law was sceptical at first, but now she doesn't know how she'd manage without the twice-weekly visits from outside carers.

    She thought that my father-in-law would object, but it has been a pleasant surprise that he has enjoyed new faces to have a chat with (who are experienced in working with people with AD).

    Our social worker is very good at arranging access to other services, such as an occupational therapist, and getting forms filled out for things like attendance allowance. In the maze that is caring for someone with dementia, a good SW is handy to have on your side.

    Take care,

  8. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    hi ,you have every reason to feel sorry for yourself ,you problems seem pretty BIG to me ,at some time you will HAVE TO accept some outside help ,as you may crack up yourself .and it is not a cop out to give blended food you know you are getting some nutrients into her,and she may enjoy her food this way ,give it a try ,this is the way things will go eventually ,so cut yourself some slack NOW .Angela
  9. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Loulou,

    I can't really add much to what everyone else has said, but just wanted to underline the fact that you won't be letting your Mum (or yourself) down by seeking some assistance. In fact it will be the opposite, you'll be sensibly putting some extra props in place in order for you to continue your excellent caring.

    Good luck to you too, and let us know how you get on.
  10. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Loulou,
    'Go for it'!! - Pride and guilt stopped me for a long time from asking for help, in fact I could never imagine leaving my husband's care in anyone else's hands. However, we now have a wonderful carer who calls in twice a day, lends a helping hand wherever needed and gives him loads of TLC. > I get a fresh challenge when I go off to work, as well as a break from caring, I can concentrate on work without the stress of worrying constantly, and my husband gets a regular visitor who has the time and patience to sit and 'chat'. We have both benefitted!
    Best wishes!

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