So frustrated with this disease

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lucille, May 16, 2006.

  1. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hi all

    Have just taken a phone call from mum's SW. Apparently mum has said she doesn't want a drop-in carer going in in the evening. (Mum has been put on Alz drugs to be taken twice daily) Her meds are definitely one thing she gets mixed up with even though she swears blind she doesn't.

    As I don't live near her, it's very difficult to keep on top of how she's coping and I'm constantly trying to persuade and cajole her (over the phone) that what I'm doing for her is to enable her to keep her independence. However, after today, I feel it's so futile! She's early stages mixed dementia so I know this is only the beginning of this horrendous journey. I wish she would accept there is something wrong. Instead she seems to say one thing to me and she laughs and is all happy but then says something different to (in this case the carer).

    The SW is going to speak to the CPN, but as mum doesn't think she's ill and can't seemingly remember a lot of what's said, I'm not sure what progress we can make. Has anybody any top tips or tricks on how I can tempt tablet taking (scuse wild alliteration!) and persuade mum to accept the help offered. Or am I over-reacting? I want her to take the medication when she should so we can monitor progress (or not) rather than a conclusion be reached before she's had a chance.

    Thanks for listening
  2. mumof3

    mumof3 Registered User

    Feb 6, 2006
    I have to say that taking medication was the turning point for getting social services to sit up and acknowledge that a care package was needed for my MIL. She could not understand that the seven lids on the dosset box correlated with the days of the week. We used to have upteen telephone calls a day when she was on one aspirin a day and we would have to listen to her swallowing and shaking an empty box!

    Now the carers come in twice a day to dispense medication. There is currently a whole cocktail of them. My MIL says that she is not allowed to touch drugs and draws an imaginary line in the kitchen that she will not cross when the carers are handling her medication. We've also had a outpatient visit for a suspected accidental overdose and a delayed stay in hospital whilst arrangements to dispense meds were put in place.

    Reading other posts I think this is a very common problem. How does your mum manage with the morning meds Lucille. Is there someone there to help her then? The carer that comes in the evening makes my MIL a coffee, sorts out her evening viewing etc as well as the meds so I think she is welcomed as a friendly face.

    Sorry that I can't be of more help. I know there are quite sophisticated dosset boxes available but these all depend on the individual knowing and remembering that the meds have to be taken
  3. suef56

    suef56 Registered User

    May 10, 2006
    oh Lucille

    oh boy oh boy...taking meds is definitely a tough one and your caring is made tougher by your Mum not realizing the extent of the problems...that is one of the aspects of dementia which is so bloody awful--it can destroy just the bits that someone needs to be able to realize for themselves they need help...that and the natural programming of an older independent generation who when asked 'how are you?' will always respond 'fine' which leaves the rest of the family sitting behind them shaking their heads in 'No No Not Fine' sign language! while SWs tell you they can't force someone to accept help if they say they don't want/need it.

    This is a long way of saying Sorry is worrying and frustrating in the extreme and my heart goes out to you...even though I've struggled in similar circumstances I have no top tips--just keep trying...especially as mumof3 suggests keep at the SWs to be more realistic in their assessment of your mum's difficulties.xx
  4. Lucille

    Lucille Registered User

    Sep 10, 2005

    Thanks mumof3 and Suef56

    Mum has a carer in the morning (well as of 5 minutes ago when I spoke to mum!). But it was the evening one she's 'sacked'. In fact when I just spoke to her she said she doesn't really need the morning one as she 'never forgets to take her tablets' AGGGHH (Much gnashing of teeth). Anyway, I think the SW has arranged for the carer to go tonight despite mum's resistance and I've just tried to explain to mum (again) the necessity for it. She feels it restricts her and she doesn't want to wait in (even though we agreed a time that suited her!). Oh well, we'll see. Your advice is most welcome and it's heartening to know that others have trod this thorny path before! Have a good evening.:)
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    #5 Lynne, May 17, 2006
    Last edited: May 17, 2006
    Lucille, SueF56 et al.

    Amen to all that! Jeez, can't this "independent generation" be their own worst enemies at times? And yet ... we're secretly so proud of the cussed old b*ggers, in the few moments when they aren't driving US demented. My Mum puts on such a brave act at the doctor's, butter wouldn't melt in her mouth, she's "absolutely fine" ... She's trying so hard to hold on, bless her, so very hard

    Except she can't remember which kitchen cupboard is for what (pots & pans, plates, tins, cereals etc.) although they've been unchanged in 20 years; can't now understand what needs to go in the fridge, and what doesn't need to; can't remember where she left her glasses but won't wear them on a cord round her neck, and can't remember a designated 'same place' to put them down each time; can't remember if she has done her asthma puffer today (supposed to be at least night & morning), or taken multivitamin pill, the list is endless, just like all of yours. As you say, constant frustration.

    best wishes

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