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. susand1408

    susand1408 Registered User

    Dec 31, 2015
    My Gran is in her 90's and is about 5 years old in her brain for the most part now. She asks to see her mum, dad and "the children" often. We can't tell lies to her as if you put her off and say we'll see them later or tomorrow she stays up all night trying to get to them. She gets violent with my dad now. She is tiny so she can't really hurt my dad physically but mentally is another thing. My mum and dad (her son) are her full time carers. She gets very angry and doesn't believe or trust them anymore. She thinks they are lying to her or keeping her locked in the house. I bought her a twiddle muff to see if it would help calm her but she never had toys and things as a child so she doesn't know what to do with it and just places it on the table.
    They have always stayed calm with her and try and show her what they can. I.e. when she wants to go downstairs they take her round the house to show her she is on the ground floor.
    The more agitate she becomes the less she sleeps. The dr has finally had to give her sleeping tablets as the lack of sleep meant her whole body was shaking and she was struggling to walk. They do work but she can only have a short course and the long term ones don't work.
    The dr says apart from the Alzheimer's she is perfectly healthy. He says her heart, blood tests and body are really good for her age. So it looks like this could carry on for a long time to come.
    It's really not fair on her never mind everyone else.
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hello susand1408
    welcome to TP - I hope you'll have some time to have a good mooch round as there's lots of information here and much support

    Your care for your gran shines through your post - she's fortunate to have you and your mum and dad to look after her. It's not easy, though, is it - and clearly her behaviour can be challenging. At least the GP is trying to find some meds to help, even that, though, can be a lot of trial and error.

    I'm assuming your gran lives with your mum and dad. Do they have some support to get a break?

    I agree that nothing about this dementia experience is fair on anyone - but we all carry on regardless, don't we, and do the best we can.

    best wishes to all your family
  3. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I am sorry your family is having such a hard time. I think you will have to tell the GP that the family CANNOT go on caring with constantly disturbed sleep. He/she MUST find something that is going to work in the long term, or you will not be able to cope any more.
    Having been there, I do know how hard it can be, being endlessly woken up at night. Sometimes it's necessary to shout very loudly, to get anyone to listen and understand.
  4. Emily M

    Emily M Registered User

    Jan 20, 2015
    Hi susan

    It is truly a dreadful disease and not fair on the person or the relatives.

    I am assuming that your Gran has had the disease for a while and therefore your parents are in touch with Social Services and the Older People's Mental Health Team (OPMHT)? Both these organisations can be very helpful and may be able to provide support for your parents.

    My Mum was originally diagnosed by the GP and put under the care of the OPMHT. She too was very small, but also very strong. She was capable of getting very aggressive. Unfortunately her husband, unlike your parents, was often not very calm. This would exacerbate the situation and sometimes she would hit and pinch him and throw heavy missiles across the room. He did struggle to cope and I lived a long way away so he was the main carer. In the end Mum was put on Risperidone (an antipsychotic medicine) by the psychiatrist at the OPMHT. I think a Specialist rather than a GPs prescribes this and generally as a last resort. As she refused to take anything it had to be put covertly in her drinks. After taking it for a period of time it did calm her down but I think her memory deteriorated more rapidly afterwards.

    Your parents need to make sure they have access to all the help out there and maybe have another word with the GP or OPMHT to see if other alternatives are available. Has respite in a Care Home been considered?

    Such an awful disease and as you rightly say the person's mind often regresses to a child-like state. Forgetting who people are and mixing them up with others and returning to the past is common.

    Wishing you all the best.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    Yes, you need to see a consultant or specialist from the Memory clinic as they can prescribe meds that the GP cannot.
  6. Emily M

    Emily M Registered User

    Jan 20, 2015
    Just another thought Susan. Is Gran getting Attendance Allowance? This benefit is not means tested and is available to help carers cope with the extra cost of looking after people with dementia (and other disabilities). It might be with Gran disrupting their sleep she would be entitled to the higher allowance.
  7. susand1408

    susand1408 Registered User

    Dec 31, 2015
    Thank You

    Thank you everyone for your kind comments. Luckily the drs surgery has a new dr. He seems a lot more understanding of the condition than the previous one. They are running blood tests etc and once they get the results she is being sent to the specialists at the hospital. They tried her on a lesser sleeping tablet but it didn't work so luckily the dr is willing to try something else. My mum and dad have had 4 nights of sleep so are feeling a bit more positive. My mum does get carers allowance but unfortunately is heading towards retirement age so will lose it them. They do have one day a week at a care centre that social services pay towards but due to funding cuts it's difficult to get anything else. The dr also advised that putting my gran in care could make things a lot worse. I don't think my dad could forgive himself if he put her in care for respite and something happen. My auntie Jean will come for a couple of nights at a time but she has such a bad memory that we can only leave her a short time. My Auntie comes over (she lives abroad) once a year and gives my mum and dad time off so they can go on holiday. My gran has now got to the stage where she can't really cope going anywhere out of the house. It has a huge knock on effect. Christmas was very difficult but now my mum and dad are getting some sleep it makes things a bit easier.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.