Advice, help, a hug, anything really...

Discussion in 'Younger people with dementia and their carers' started by Kate P, Oct 8, 2007.

  1. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Just got back from a little holiday which was fabulous and a little escape from everything for a while.

    However, have got back to find mum considerably worse - I can't believe how much worse given that I was only away a week.

    Although mum hasn't been able to talk for a while now she would at least look at you when you talked to her. However now she doesn't seem to be connecting in anyway with anyone - you may as well just not be there. It's like she's totally zoned out. She completely ignored the vicar yesterday even though she was talking directly to her - she didn't even look at her.

    She's also increasingly aggitated and aggressive - of course we have no idea what is upsetting her as she can't tell us.

    Before I went away I arranged for mum's antidepressants to be increased as I could see her aggressiveness was increasing again but she won't take them because they look different to her usual ones. Dad has now taken to crushing up an extra one and putting it in her food/drink!!:eek:

    She can't tell the time/day anymore and seems to be losing her social graces for want of another expression - she tossed some rubbish into a flower bed without any shame and dad said after they'd walked my dog she'd thrown the poo bag into someone's hedge - dad had to retrieve it!:eek:

    We've had no contact from the consultant and no contact from Social Services for the carer's assessment (that I've had to refer because the GP and consultant couldn't agree on who should do it) and I feel like we've come to a griding halt.

    Also can I ask what these "scores" are that people talk about? Should mum have had one of those? What the hell is going on?????:confused:

    Sorry needed to get that out.

    Any and all advice would be appreciated as I just don't know what to do anymore. Mum's age and the fact that she has FTD seems to be a huge sticking point in getting anything done or in anyone knowing what they should do.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,865
    Kent
    So sorry Kate, your mother seems to be going downhill fast.

    I can only suggest you badger the GP and SS into some action. Make a note of the deterioration you have seen after just one week away from her and suggest to your father that you make an appointment with the GP and show him what`s happened.

    If you have the strength, I`d phone the SS for your father. He is probably too worried/frightened/tired/emotional to do it himself. Ask him first if he`d like you to act for him.

    I know you also have a great deal of worry about your daughter, so if these suggestions are too much for you to take on, it`ll have to be up to your father.
    But to notice such a significant change in one week, is terrifying.

    Take care

    Love [and hugs] xx
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Kate

    well done on getting away, even if it seems worse now.

    don't forget that there is also the situation as follows.

    Normally [well, for us at least] we are in regular contact with the person who has dementia. We get pulled into that person's normality; we concentrate on dealing with that, day after day. It becomes our own norm.

    Then, for some reason, we are away for a bit, and the normality of the rest of the world returns to become our own. We can relax. People around us respond as we would expect. We don't have to be on guard all the time.

    But then, we return to where we were before - only this time with a refreshed view of how things should be.

    Something we may have accepted before may now seem outrageous.

    I'm not saying that this has happened for you necessarily, but there may be an element of it, along with a bit more actual decline as well.

    Doesn't make it any easier, of course.

    Welcome back.
     
  4. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Thanks Brucie and Sylvia.

    You could be right to some extent Brucie - as you say the madness of dementia does become "normal" wheny ou're dealing with it day in, dayout.

    Plus I did have a very normal holiday with my husband's family - I feel a bit guilty about it but it was nice being with his parents who are just normal parents - not parents dealing with the hell of dementia.

    No guessing, no calming down tantrums (other than that of my toddler!), no stress - I'm very grateful for my little break as I know a lot of you just don't get one.

    I will ring Social Services again as dad is struggling to manage somedays - he's not a natural carer and he's doing his best but sometimes he excpects too much of her and gets angry when she "disappoints" him. For instance he asked her to pass him a spoon several times at which she just looked at him blankly because she couldn't understand and so he started to get angry with her.

    I guess it's just that he wants her to still be his wife and she can't be.
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Kate, I'm sorry, I replied to your PM before I'd read this thread. I'm sorry your mum has gone downhill so quickly. One thought -- could she have a UTI? I'm sorry, I've got them on the brain at the moment, but the agitation, aggression and rapid deterioration are exactly the symptoms John had. It might be worth checking.

    You definitely need to do some stirring, both with the consultant and with SS. Your dad definitely need some support. I think you should see the GP yourself and make sure he knows how quickly things are deteriorating.

    The scores are the results of the mmse test, which someone should have done with your mum. The scores are 0 -- 30, and are supposed to indicate what stage of dementia your mum is at, in conjunction with other factors, such as presentation.

    Having said that, it may already be too late for your mum. John hasn't been able to do one for three years, because of his lack of language, and it sounds as if your mum is similar. Our consultant just goes by John's presentation.

    I hope you manage to get some help for your dad. I'm glad you enjoyed your holiday, anyway.

    Love,
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sorry, forgot the hug!
     

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  7. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Kate

    So pleased you had a good holiday, sounds as if you needed it.

    Dad has now taken to crushing up an extra one and putting it in her food/drink!!

    It's like she's totally zoned out.

    Kate its just a thought, but it could be that mum is 'zoned out' as a result of the additional medication. I think I would check out the dose with the Consultant, also it could be that whatever medication mum is currently taking, needs to be changed.

    I hope you and dad get the help you clearly need now, dont forget, he who shouts loudest!!

    Thinking of you

    Cate
     

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