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. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    We are struggling with MIL with apparent early dementia but also heart failure and broken neck (diagnosed after only two weeks living with us and apparently 4+ months old - no treatment). We are pushing her to a 9 pm bed time - largely for us so that we have a break together as we now can't leave her alone and spend much of our time worrying on her behalf about her falling, pulling clothing over her head etc as she has forgotten her time in hospital and doesn't now believe she has broken vertebrae ( neurosurgeon told us in her presence that it was pre terminal and that a slight trauma could kill her). We are taking all precautions such as button up clothes, constant surveillance etc but she has forgotten any conversations. This is very stressful and we need the 2,hours each evening just to spend together as we can't meet friends or go out together without a babysitter but she has no concept of that. We are also genuinely reinforcing the bedtime so that she can take her heart meds early enough in the morning to be safe but do need the time to ourselves. Her life should be so much better now as she had lived alone for the last few months with little company when we were not visiting and was not going out at all but she is getting very combative about early bedtimes and can't seem to get to sleep. Are we wrong to try to protect ourselves too? We are thinking we have to try to get her to go to nearby home for respite without her thinking we are trying to get her into a home, which to be honest we are thinking is the only medium term option for us all to survive :-/
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,206
    Merseyside
    I agree you need to protect yourselves but you can't force someone to be & 9pm is quite early.
    Definitely get the respite sorted ASAP.
     
  3. Blimey

    Blimey Registered User

    Jun 6, 2012
    20
    Hi Caseys

    I think 9pm is a reasonable bedtime and introduced the same for my mother. She started living with us 3 years ago and it used to be 10 o'clock. It is really important to get "time off" and if she was in residential care I expect it would be earlier than 9pm.

    I also managed to arrange one weekend respite each month, without these I doubt we could have continued to cope. It is far better to address the issue before crises especially if ultimately it means the difference of being with you or living with strangers. I would suggest being kind but firm and don't be put off or feel guilty:)
     
  4. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    Thanks - that's very helpful. We do feel a bit mean but I don't think we could survive without the time off and as you say in residential care I suspect it would be a lot earlier. It feels a small price for her now that she has us to care for her as a few months ago she was living alone and not eating properly and at great physical risk...
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Could she have a tv and dvd player in her room and pop on a dvd for some old films - would that keep her occupied til she dropped off?
     

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