1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Leswi

    Leswi Registered User

    Jul 13, 2014
    Following another really bad TIA last week where mum was unresponsive for about an hour and could not talk for another hour after that, she has gone dramatically downhill. Incontinent at night, hardly drinking, taking ages to eat soft foods, sleeps most of the day, can hardly stand and really difficult to get her to interact. Does this mean the beginning of the end is here or do people go on like this for some time? Similar experiences would be most interesting for me to hear about please. Mum is 88 and her diagnosis is Alzhiemers and vascular dementia, diagnosed 3 years ago. She has been going downhill gradually but this is a massive step down. We have DNR in place and have agreed that we do not want to take her to hospital if it can be avoided i.e. want care in place at home when time comes.
  2. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    In answer to your question -sorry I don't know. Not much help I'm afraid. My OH's GP told me that Pete was probably entering the final stages on 18 May 14-he passed away in December.He was only 68. I'm sharing this with you because there was a Lady in his CH who was 99 (bless her) and she has been bed bound for 9 years. She has a strong heart-but so did my Husband. E (the bed bound lady) could still eat food (liquidised) but apart from opening her mouth had no response. Pete slept a lot but did show more response than E. It's heartbreaking.

    One thing-when you say you have a DNR in place and you don't want any Hospital care for your Mum-has this been written up on her notes by her GP? If not please contact the GP. It's best to have these things clear and in writing.

    I'm sorry that you are having to go through this.

    Take care

    Lyn T
  3. Sue123

    Sue123 Registered User

    Aug 30, 2014
    I feel what youre going through. This describes my Mum too. I sometimes feel guilty cos she seems to interact more with the carers & visitors than she does with me.
    I know she is getting worse & just dont know how to deal with it :(
  4. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    My mum had dramatic downturn weeks ago during uti but became totally incontinent not just at night. 6 monthly memory clinic review was earlier this month CPN gave me no useful advice but said mum was being discharged as no point in trying to do further tests.

    My mum is younger than yours but also has mixed AD/VD but has had no obvious TIA. The lack of info does make it all so much worse, doesn't it? Am sorry I have no advice or info but just wanted to say I think I know how you must be feeling.
  5. DIANE69

    DIANE69 Registered User

    Jan 7, 2014
    So sorry.I was in a very similar position in December.I too had a DNR and wanted my husband to stay at home.The GP.was very good at visiting but never actually said anything.I decided I would just ask if we were approaching end of life care and would a referral to the palliative nurses be of benefit.The doctor said that my husband might rally but a referral to the Macmillan nurses would be a good idea.The nurse who came was so supportive and managed to re assure me that they would do everything they could to enable my husband to be cared for at home.They provided support all over the Christmas/New Year until his passing 3 weeks ago.I would say just ask and get the doctor to explain things fully.

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