1. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello my friends.

    We had, I believed, entered a more settled phase with Mum. Once a week she was going off with a very nice carer for a lovely walk, stopping off for a drink etc, and also she had started going to a social group held by the AS. She had also been attending a lunch club once a month held by Age Concern. Mum has now (apparently) told the organiser of the lunch club that she no longer intends to go, and for the last 2 weeks she has told the carer upon calling for her walk, that she has a severe migraine and couldn't possibly go out. When it happened for the second time this week I knew for sure that this headache was a definite ploy, and next week, I shall be there ready to ensure she goes. The 'walk afternoon' makes quite a difference to me. I will call in the morning and make sure everything is OK, then because she is going to have her afternoon occupied, I am more or less 'free'. By the time she gets back, she is happy to eat and settle in front of the TV .... I am feeling annoyed that she is now deciding not to do this and so making life more difficult for me.

    Am I right to 'force' her to do these things? You know, it only takes one rainy day and for nothing going on for her to imply that she is so bored and fed up, with nothing to do. Having now tried to set up these things for her, which has taken time and energy, to have her decide what she will do and not do, behind my back, is making me very cross. Why is she able to think this all through, and yet not look after herselff? I also feel that she is only attending the social group because I collect her and drop her off! When this winter comes, she is going to be complaining, I know. Any thought would be much appreciated.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lulu, how frustrating for you. I had similar with my Mum, and yes, I suppose in a way I did force it in my favour a bit. I took her like you to one, so she didn't "play up". The other, I told her a white lie by saying it was to help her with her memory problems so she needed to go to help herself. That seemed to work most of the time. My M in Law is now at a similar stage to your Mum. Can't or won't do anything much for herself, very forgetful but in denial, but still can manipulate or cancel anything done to help her and us as a family cope. It is very frustrating. We just keep plodding, day by day. Some days are better than others. At the moment, every morning she wont move from her chair (having got up at the crack of dawn.) Lies there with a blanket over her, insisting she is really ill etc. The other day my S in L was down there and rang us for help. Down we went, my husband got a bit rattled, so went outside and started pruning a bush. She couldn't see what he was doing and that irked her as he was no longer giving her his attention. I said "why dont you get out of the chair and take a look if your worried about the bush" . She did, once she was up, she was suddenly better. We then took her for a walk, then out to lunch where she ate more than any of us! Grrrr! Thinking of you, love She. XX
     
  3. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Lulu,

    The complaining and stubborness are definately frustrating and difficult to work around. My Dad has been particularly restless and moany these last few days. We sit on a chair in the garden of his Home, then two minutes later he's saying "There's no point sitting here, we've got to get back". We try, "In a minute, we'll be having tea soon". Then, another minute later, "I can't bleedin' sit here all day, I 've got things to do". So Mum and I give each other a knowing wry smile, shrug our shoulders and we're off for yet another walk around the grounds.

    It's so difficult when you're doing this alone. Mum and I find that both being there we can take turns jollying Dad along and coming up with new things to say to distract, persuade and cajole, but then sometimes we realise that Dad's not going to be placated and we do what he wants for a quiet life!

    You can only do so much in arranging activities and trying to make your Mum happy, sometimes we just have to accept that they're going to be unhappy no matter what we do or say. Perhaps it's your Mum's stand at independence, at wanting to still make some decisions for herself, even if they're negative ones! Sheila's right, we have to "just keep plodding". Your Mum benefits from the activity and stimulus of her afternoon walk/social group/lunch club and you deserve (and need) your afternoon time Lulu, so dont feel guilty about 'forcing' your Mum whenever you can persuade her to go. At other times you may have to just give in and try again another day.

    All the best,
     
  4. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thank you for replying. I had just wanted to tell someone about it as I'm afraid I will go on too much to my husband -even though he is wonderful. Thanks for listening.
     
  5. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi Lulu
    Just to add that I think it's vital you get some time to yourself - otherwise you end up not coping. I found dad was more and moe reluctant to go out unless I was with him. I think as the dementia progresses the person's world and life becomes narrower and narrower as they seem frightened of the slightest change of scene. At the same time you have to try hard as the carer that your life doesn't close down too. It's a really difficult journey. You're doing all the right things I'm sure and like all of us at times you feel angry and frustrated.
     
  6. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Lulu,

    We had, I believed, entered a more settled phase with Mum

    It's so unpredictable isn't it? Two steps forward, and one step back (and quite a bit of wobbly hopping around on one leg).

    for the last 2 weeks she has told the carer upon calling for her walk, that she has a severe migraine and couldn't possibly go out

    Could the carer possibly be a bit creative with the truth herself and ask your mum something that would allow her to pop inside for a minute - Need to use the loo? Quick cup of tea? Glass of water? Perhaps just something to break that initial phase of resistance. Even if your mum doesn't want to go on the walk after that, having the carer in for a visit would still break up the monotony of the day and give you a break.

    You know, it only takes one rainy day and for nothing going on for her to imply that she is so bored and fed up, with nothing to do.

    Have you thought about what the carer could do with your mum in bad weather? It could be possible to arrange things for them to do together - some baking, watching a DVD of an old movie, sorting through photo albums, etc.

    Also, I agree with daughter that once you have tried to give her opportunities for stimulation and she has consistently rebuffed them, that you may have to tolerate a certain amount of complaining. Sometimes that kind of complaining is not really a specific request for more activity, but a general need to express emotions of loss and frustration. She may not be asking for you to "fix" it, but just to acknowledge her state of mind.

    Why is she able to think this all through, and yet not look after herself?

    I think her reaction is a fairly reactive one - it doesn't really require a great deal of decision making or planning. Even very young children know that feigning a stomach ache can get them out of something they don't want to do. The skills required to initiate, plan and make a meal are a lot more complex.

    I wish I had some more creative ideas about what to do when the bad weather comes, ones that don't rely on you being there all the time. Does she enjoy the AS group once she is there - based on her reports and the group organiser's?

    Take care,

    Sandy
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    #7 Sheila, Sep 5, 2005
    Last edited: Sep 5, 2005
    Dear Lulu, Sandy has summed it up brilliantly, particularly that it is sometimes more an acknowledgement to her state of mind. We had similar today with Andy's Mum. It is difficult, but at this stage, really all you can do is your best and "go with the flow". Love She. XX
     
  8. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    I know just how you feel

    I'm going through pretty much the same right now myself, Lulu. My Mum is in complete denial - quite agressively so someday - that there is anything wrong, despite consultant psychiatrist visits every 6 weeks, on-going diagnosis of memory problems, and a probably diagnosis of vascular dementia (although, AFAIK, the last nugget hasn't been shared with her). For 6 weeks, the CPN and I managed to get Social Services to visit her, and she was fine with it as far as it went - till she remembered she was going to get a bill. At the six month review, she cancelled the care plan.

    Two weeks later, after a very bad week, the CPN intervened and set up a private care company, starting last Tuesday morning. This morning she refused to let them in. She phoned there office insisting it be cancelled. And then they phoned me.

    The amount of care my mother needed two or three months back involved me taking so much time off I was made redundant. I've found another job, but I'm £1000 a year down as a result. And my mother is behaving as if I'm the only one she'll trust and co-operate with. I'm 120 miles away with no independent transport.

    If it makes you feel better, compare your lot with mine. I'm seriously considering declaring myself bankrupt and washing my hands of everything - it would actually be hugely cheaper, if nothing else (£100 pm on rail fares, £80 - 90 pm on phone bills, and I think I'm about to get saddled with the care bills too). She insists she loves me, but is opting for a very strange way of showing it.
     
  9. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello everyone. Thanks for all your thoughts. I know that in comparison I have little to complain about as Mum is on the whole very compliant. When I look at her now to as she was just before Dad died nearly 2 years ago ...it breaks my heart. When I start to think about Dad, and then Mum's situation, it all gets a bit much, but know that in fact we are very lucky. It helps to 'talk' here.

    Mum went willingly for her walk this week, and (so far) it's been a good week overall. It is very surprising to find such stubborness in her at times, considering how much support she receives, but I know I'd probably be much worse! I can be very stubborn! And we have now ensured there are the ingredients to make a cake should the walk not prove possible. This time last year she was still attempting to do this on her own (if we asked her to), although it had become a bit hit and miss. I shall dig out the photos too ...thanks for those ideas. Thanks for everything
     
  10. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Lulu - my Mum was doing this today, saying 'there's far more worse off people'. The way I see it is that if I had a broken leg and someone else had two broken legs - I'd still have a broken leg and would be entitled to feel bad sometimes and to have a grumble! I'm glad you had a fairly good week - keep on 'talking' here ("it's good to talk" apparantly :) )

    Dave - it must be very difficult for you, especially being so far away and trying to keep your job while everything else is going on. I'm sorry I can't offer more but I hope you can find some sort of solution - maybe someone else on here will have some ideas.
     
  11. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Dave, if there were anything at all I could do I would do it for you. You sound very caring and your Mum is lucky to have you.
    Hazel, I hope today was a good day for you.
    Before I go, I must tell you this, which I actually found very funny. Mum and I had gone to do a little shopping and to get her prescription from the Pharmacy. The prescription was duly taken away, and out came the pharmacist minutes later, holding the Aricept tablets. She called Mum's name, to which she answered, but then went on and asked her to confirm her address!! Well of course Mum couldn't remember, and caused her huge embarrassment (quickly forgotten though!). You know, I try to foresee all potential problems before we go out, in the hope of avoiding any hitches ...but it's always the ONE thing you didn't think of or plan for which happens!
     

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