Help..don't know where we should go from here.

Discussion in 'ARCHIVE FORUM: Support discussions' started by river_, Mar 28, 2008.

  1. river_

    river_ Registered User

    Oct 15, 2007
    Im sort of writing this on behalf of my mum, she has had a brain haemorrhage and finds it hard to summarise (as well as many other things) so I will try to put the situation now for you all and hopefully you can help me, mum, my gran and all our supporting (and not so!) loved ones. Tell us:

    Where do we go from here? My gran has vascular dementia, she is usually orientated to place and person although days get the better of her, in hospital after being admitted for general frailty she became disorientated stating she would not pay for her room etc, Im sure you can imagine. She is now home with carers visiting at key times.

    Problem is she wont accept help, her insight is so poor she sees no reason to let people help her. You can explain to her that she got home with the package of care after nearly ending up sectioned and in a nursing home and then she can see the need for help but then the loop starts again. People are interfering right left and centre and she dosent remember why.
    I have seen this many times and know its get worse before it gets better.
    Trying to re orientate people with mid to late dementia is like bailing water out of a boat full of holes. Mum has become her main carer dealing with drs, carers, SW, memory clinic, depressed and manipulative family members and my gran herself for years now. Mum spends so much time on the phone, she lives in Perthshire with her partner and my gran lives on the Wirral alone, I live in Glasgow and have finals for uni coming up, my uncle is only an hour from my gran but is only intermittently helpful and often makes things worse.

    If mum backs off and lets my gran send the carers away without doing anything she will forget her meds, eat less and less and really hardly wash, sleep in the chair, just go round in circles in a sorry state.

    I know mum cant maintain the level of stress and anguish. Would having my gran move in with mum make it better? Im not sure, she just follows mum around like a ghost, it would be terrible. I dont see her going for living with me, mum is the key to all this. How do we ensure my gran has some quality of life and take some pressure off us?

    She would FREAK OUT if we put her in a home, ok we would not need to deal with the ever more bizarre behaviour or the day to day dealings that grow arms and legs but the old lady we love would be furious and broken hearted.

  2. germain

    germain Registered User

    Jul 7, 2007
    Hello River,

    My Mum had mixed vascular and Alzheimers and deteriorated just like your Gran.
    BUT - my sister and I lived on the doorstep - and even then the strain of caring brought us to our knees. Eventually Mum had to go into full time care.

    Your poor Mum must be feeling exhausted - the physical and mental stress is huge isn't it - and with a brain haemmorrhage as well to cope with it could get just too much very quickly.

    Not sure if bringing your Gran to live with your Mum would help -your Mum might never get a moments peace - even tho' the distance worry might fade and she MUST consider her own health. However, if you are seriosuly considering this its worth getting a support package in place and a carers assessment for your Mum, before it happens - this would hopefully mean that your Mum could get some assistance and respite.

    The other practical thing I can think of which might help now is to have a strict talk with her current carers - lots of people try to send carers away - but there will be some ways that they themselves can try to ensure they stay and they should have some training/awareness of dementia issues. With our Mum it was things like " don't you deserve a cleaner after all these years of hard work" (and she never noticed they didn't actually clean) or even " oh dear, I'll lose my job if you don't let me in" or " could we just have a cup of tea together - its very cold out here" This may not be successful but its worth a try. I'm also sorry to say that some carers take any opportunity/excuse to leave - carers are no better or less lazy than the rest of us mortals - so it may be worth talking to the management who supply them to see if you could get a more determined bunch !.

    Does your Gran go to a Day Centre at all ? That gave our Mum something to get dressed for even tho' it got harder and harder.

    You say that your Gran would "freak out" re a Care Home. Yes, lots of people do - but you never know - our Mum seemed so relieved to have 24/7 care ( as far as we could tell by then) and there may come a time when your Mum has no other option as your gran will be at great risk.

    Possibly, in the end, it may come to dealing with your Gran's freaking out for the sake of your poor Mum. It's so, so hard and sorry to say it won't get any easier.

    I'm sure there'll be lots of others coming along to help today.

    Thinking of you all
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    #3 Margarita, Mar 28, 2008
    Last edited: Mar 28, 2008
    My Mother also has mixed vascular and Alzheimers .

    (From my own
    experience of bring my mother home to live with me )

    If you could perceive it as your grandmother just scared confused your mother is now her security blanket , she lost without your mother being around .

    your mother is her guide now .just like a guide dog is to a blind person if you get my point .

    that never stop when mum moved in with me , only when mum mobility got worse, did it stop . so now if I am not around she call me wanting to know where I am .

    you may find all those symptoms your seeing in your grandmother now , well get worse as in hight lighted more when she move in with your mother it can take up to a good 8 weeks or more before she settle in with your mother , just like it would do also if she moved in to a care home .

    People with dementia find change hard to take , but can do settle down into Our home or care home, but take a very long time to get into our routine

    Like germain says it is worth getting a support package in place I would say its a must , you mother can't do it on her own .

    Day centre , carer to wash mum , respite in care home , my mother would not except any of it . she just wanted to sit in her chair or bed at home with me & not do anything but I found out that is because its part of the symptoms of VD .

    It was not easy , very strain full , stress full for me , they where time I felt like giving up just let mum sleep all day, send carer away and I do it all , but I don't give up easy . so with a lot of prompting I got mum to except all the services that where offered to us in care packet .
  4. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello River

    Agree with Germain's remark 100%. Sometimes we have to be cruel (or so it seems) to be kind. Also agree that I don't think it's a good idea your gran coming to live with your mum. Too stressful bearing in mind your mum's health.

    My mum has vascular dementia and AD. I don't live near her and am trying to manage all sorts of things from a long distance. About 12 months ago, when it all got too much; mum in total denial about illness, neglecting herself and me getting no help, I rang the CPN and said I couldn't cope. Because mum was on AD meds at the time, they came round fairly pronto and things settled down. Have you contacted Social Services? As Germain says, it won't get any easier. Sorry, not exactly a bunch of flowers here am I? I'm just acutely aware that we all wear ourselves out trying to do what's right, but in the end we're fighting an enemy we can never know.

    All the best to the pair of you, your gran is lucky to have such caring people looking out for her ... even though she doesn't realise it! :)
  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi River

    I'd be inclined to agree with Lucille and Germain here too.

    I don't think there is any easy way to care from a distance. There's always the fear at the back of the mind that carers are not doing what they are supposed to, that the relative is in danger. And as germain says, it will get worse, not better.

    You also have your mum's health to think of here. The worry can't be doing her any good, and having your gran to live with her might be intolerably stressful.

    My suggestion would be to find a care home close to your mum, so that your gran would have 24 hour care and would be safe. Your mum would be relieved of the worry, and would be able to visit regularly. And gran might accept it better knowing that the family would be close.

    Worth thinking about?
  6. river_

    river_ Registered User

    Oct 15, 2007
    #6 river_, Mar 30, 2008
    Last edited: Mar 30, 2008
    Thanks folks. Mum has been in touch with services but in the end SW dont want to take responsibility and the care staff fall short on promises.

    My gran dosent like old people! We have discussed 'groups' etc but she would not even think of it!
    I think we need someone to take on the role of care manager, their is money in her house so we could fund some of it problem is my crazy uncle is tied up in the legal and finantial stuff and would never get funds releised.

    I do think the next step has to be the last one, my gran needs a place she can detiriorate and die without the disturbance of hospitalisation. If we could rely on community care she could stay at home or there is nursing home care. Having worked in homes i would hate her to be admitted to a big institutonalised home and small person centred nursing units are hard to find :(

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