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  1. #1

    Really rough weekend with mum... help!!

    Hi everyone,

    Really need some support today. I just got back from taking my mum to Poland with my sister. It was good that we went as it was to do some family research etc and my mum really enjoyed it I think. But it was a real shock. I didn't realise how much worse she had got in the last few months, it seems to be very quick.

    Mum is 58 and has PCA (visual dementia).. me and my sister are in our 20s. I am sure other young people on here relate to this but it just seems so cruel and unfair that we are losing our mum to this at such a young age. I was really broken-hearted seeing her struggle so much this weekend with really basic stuff like getting dressed etc. She just looks so vulnerable. It's awful. I just got back last night and cried for hours!!

    Just need to hear that other people are going through this too. I have a big support network of friends etc but it feels like no one understands what this is like, and even the people I love the most say really unhelpful things! I feel a bit alone with it at the moment.

    Nikki x

  2. #2
    Registered User
    Join Date
    Jan 2012
    Posts
    225
    Am so sorry, Nikki; I can just imagine how sad it made you feel to really see the changes in your lovely Mum; I can fully relate to how you feel you are 'losing' her. I do hope you take lots of pics of your happy times and maybe some short films etc? I think in the future if you could keep albums of the good times it will give you so much to remember when times seem rough. I am sure everyone on here will relate to the decline you are seeing in your Mum; it is so horrible and hard to deal with, especially as you and your Mum are so young. Do come here for support - am sure you will make lots of friends on here who will relate so well to what you are going through and you sound like a wonderful daughter - your Mum is so lucky to have your support.
    xxx

  3. #3
    Registered User
    Join Date
    Sep 2008
    Location
    Herts
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    1,119
    Dear Nikki,
    so sorry to hear about your mum. My husband has PCA too. It used to help him with dressing to have bright bits of tape sewn into the back of his clothes ( he saw yellow best) and certain garments were easier than others.
    Have you found the PCA support group. Look at pcasupport.ucl.ac.uk and you will find a lot of info. I do not know where you and your family live but there is a meeting at Worthing on 20 April and the next London meeting at UCL is Friday 25 May. Everyone is really friendly and if you are not already aware of it I would really recommend it. Patients and carers/ family can attend. For us it was the first time we had met anyone else with PCA and it is such a relief to talk to people who understand the particular difficulties.
    Even if you cannot attend you can contact Seb, Jane or Jill for a chat. Emails and telephone numbers are on the website.
    With best wishes to you all,
    Tre

  4. #4
    Registered User
    Join Date
    Sep 2008
    Location
    Herts
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    1,119
    OOps made a mistake-25 May meeting is carers only. Next full meeting at UCL is 22 June
    Sorry,
    Tre

  5. #5
    Registered User
    Join Date
    Dec 2011
    Location
    Aldershot Hampshire
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    97
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    2
    Hello Nikki
    So sorry to hear about your Mum. My husband is 57 and has PCA which was diagnosed in November 2011. He is reasonably ok but we take a day at a time.
    With your Mum, it could have been the change in surroundings and the fact that nothing was familiar to her. Hopefully she will be better now she is back at home. Not sure at what stage her illness is, but Tre is so right in recommending the PCA support group. They are a wonderful group of people that offer much support and invaluable information.
    I hope you have the support and help you need. You will get lots of that on here!
    Very best wishes to you all

    Maggie

 

 

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