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my mum has just been diagnosed with dementia

Discussion in 'Younger people with dementia and their carers' started by cart01, Mar 7, 2005.

  1. cart01

    cart01 Registered User

    Mar 7, 2005
    2
    This is my first time on here but am desperately wanting to talk to someone experiencing similar things. i have so much i want to say but now don;t really now where to start. my mum has been recently diagnosed with dementia, she is 55, my dad left her for another woman 6 weeks ago and have not heard from him since. My mum is in hosiptal becuase she can't look after herself, she is supposed to be being assessed but it has been 6 weeks and nothing seems to be happening. I spend most evenings there and take her home on a weekend. i am so full of mixed emotions, i am constantly trying to stay positive for my mums sake but it is hard when often i can't see the positive myself. I worry about everything and often get frustrated with my mum and then end up feeling guilty. I feel guilty that she is where she is, she begged me not to let her end up in hospital. She has good days and bad days, on the good days i find it hard to believe this has all happened so suddenly.
     
  2. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Welcome Cart
    I am not surprised that you have mixed emotions,but you must not feel guilty.
    We all lose patience and get angry,but when the one you are caring for seems to be awkward,it isn't the it's th AD.
    I am sur that some one will be in touch with you soon who has a younger person such as your Mother suffering with AD.
    In the meantime post as often as you wish we are here for at all times
    Best wishes
    Norman :confused: often
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear cart, so sorry to read of your sad posting. I realise that six weeks must seem like an eternity, especially when nothing seems to be happening..However you have said it your self, good days bad days, so assessments do take a long time. Hopefully a care package will be put in place soon for your Mum.

    Such a blow, with the diagnosis coming about the time of your fathers departure. Please try to separate the two, just concentrate on Mum, but look after yourself. Keep posting to tell us how you get on. Love Connie
     
  4. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    30
    dublin
    Hello Cart
    Am very sorry to hear that you mother has been diagnosed with AD. My father was 55 when he was diagnosed ( he is now 61). Its a very tough time at the beginning, because your mum is at the stage of her life where she should really be off enjoying herself and doing nice things now that her family is grown up, but instead of that you have to go and visit her and watch her become someone you dont want her to be.
    Its very hard to take also that your father has just walked out on the whole situation leaving you to deal with all the problems that may arise.
    Its hard to be patient all the time with someone who has demetia or AD, you get frustrated that you own father or mother who taught you so many things now has to be told how to do the simplest of things. Sometimes you snap back at them and then feel bad about it afterwards, but you just have to try to tell yourself to be as patient as you can and talk about something that you know they may have some interest in.
    Its a strange disease in that you do have good days and bad, and like you say some people wonder what the big fuss is over, but they are not with the person all the time. You also find that you grieve as you go along, as you seem to mourn the loss of your true mum or dad before your own eyes.
    Have you any brothers or sisters who can help out ? we try and help my mum out as best we can but she still feels that she has to take most of the burden of looking after my dad.
    Anyway hope you are having a better day and try to stay as positive as possible. Its ok to get frustrated and angry and sad , they are all very natural feelings when you are dealing with AD.
    Kind regards
    Dawn
     
  5. Vik

    Vik Registered User

    Jan 29, 2004
    12
    Derbyshire
    Hello and welcome

    It sounds like you are having a really tough time. My dad was 56 when he was diagnosed and he eventually ended up going in to hospital for assessment. It is so difficult and the guilt can be overwhelming. Do you have support? Lean on anyone you can - you need to stay strong, but be easy on yourself - one day at a time. It's the only way to manage. I spent so long wondering why us etc - still haven't any answers!!

    It is particularly difficult for you with you dad leaving too. You must have so many mixed emotions. I really hope that the hospital manage to get a suitable care package sorted quickly for your mum. One thing I would say, is it seems to me that those who shout the loudest get the most when it comes to care. So, be strong and push for the things you need. Don't give up.

    This website was of great comfort to me. I didn't often post when I was going through it all with my dad, but I spent ages reading the other postings. It is of such great comfort to know people in similar situations and have people you can chat to, ask questions, hear their stories.

    Take care of yourself

    Vik x
     
  6. joho

    joho Registered User

    Mar 6, 2005
    2
    County Durham
    Stay positive but come up fighting

    This is definitely a hard time in your life, I don't think life can throw anything worse at you than a loved one with AD. My mum was 57 when she was diagnosed, after having been told from the consultant we should be grateful it wasn't a brain tumour which was their first impression.

    Anyway my mum went into nursing care last month which was a very hard step, she'd spent time in hospital first, then back home and then into emergency respite because my Dad couldn't cope. He has Vascular Dementia which is very similar to AD but with a more stepped decline as I understand it.

    With regards to your mum being in hospital, you definitely do need to shout and very loud. I've pushed ever since the day we knew what was wrong to make sure we had all the help we could get. Help to cope every day and also things that would give my mum stimulation. Make sure you have a good CPN (Community Practice Nurse) and if you're not happy change to another one, you'll need a social worker who also organise a care package for your mum. In this world you don't get anything unless you ask for it. I've found my local Alzheimers branch extremely useful they've advised on what services we are entitled to, when to push back on decisions and to also make sure we had all the benefits mum was entitled to, so we could pay for the extra services. I would push to get your mum out of hospital as fast as possible. My mum hated being in and had a few falls which have never happened before, they put her on new medication which helped with some areas, she was in for 5 weeks and we fought to get her back home as it wasn't a priority for the hospital. Again we couldn't have done that without the great social worker we had.

    My only advice is to shout for action, get advice on what should be happening and read as much as possible on how to work with AD on a day to day basis. At the end of the day you are the only one who will make your mum a priority. Once you have things in place it does make you feel a little more comfortable and show that there's light at the end of the tunnel.

    Take care and stay in touch.
     

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