We haven't told her she may have dementia

Discussion in 'Memory concerns and seeking a diagnosis' started by Caseys, Dec 23, 2015.

  1. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    Hi again. Today we talked to me mother in law's doc about getting a copy of her hospital report as she has been diagnosed with a broken neck (which they have sent her home with, with strict instructions about extreme care). We asked as she is now denying any knowledge of this which makes caring for her very difficult! Her confusion is getting more and more pronounced but have not talked to her about it and have covered up when she forgets people and seems not to understand family relationships. The doc strongly recommended putting her in a home. We don't feel she is ready for this and are concerned that we haven't yet suggested dementia to her - she has not been officially diagnosed although another doctor has said she believes she had it. Waiting for a memory clinic appointment. Are we wrong in not saying anything to her? I think we are going to have to start to bring it up, particularly as we have already covered for her sending christmas cards to her sisters who are all dead. We have a weeks respite as she has gone to my brother in law but already on the phone she described me as her friend and couldn't remember my name and didn't know who my daughter was :-/ Nicole (v.stressed)
     
  2. Lawson58

    Lawson58 Registered User

    So if she can't remember who you are, is there any point in trying to tell her she has dementia? It doesn't make sense.

    You might tell her and then with in five minutes she may have forgotten. From what you say about the confusion, it seems like a pointless exercise to me. You may cause her distress, there may be some anger and at the end of the day, if it achieves nothing then don't tell her.
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    There is no right or wrong with dementia
    You know her best and you know what she can cope with and indeed does she need to know?
    Sounds as though your family are doing a wonderful job - looking after her and protecting her and if you don't feel she is ready for a home then that is up to you and it is your decision as long as you can keep her safe :)

    My only question would be - are you getting enough help and support?

    Are you having help from carers to relieve family members (you may not feel that is appropriate)
    Have you had a carers assessment so that you can get some free hours sitting service to give you a break
    Have you had advice on claiming non means tested Attendance Allowance
    Do you belong to a carers organisation to get some info on local goings on. The carers cafes are a great source of info.
    If you want a diagnosis have you had access or referral to a memory clinic? Lots of people don't have a diagnosis and others feel that it helps
    Have you sorted out Power of Attorney (this can be done on line where it is far cheaper and very straightforward)

    There are a couple of great numbers to phone. Over Christmas the Age UK helpline will give you lots of practical advice including help with forms, and help - they are open 24/7 365 days a year - yes even over Christmas - and the number is a Freephone number 0800 169 2081


    and the other useful one is
    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.
    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    Some of this info might be useful now and some later on. The dementia won't get better, only worse but with the right support you will be able to cope much better and be less stressed and therefore better able to make decisions.
    Take care, thinking of you and keep posting. There is a LOT of help on here xx
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    All of what Fizzie said
    There's no point in telling someone with dementia they have dementia, it's a bit like asking a child why they're behaving childishly or telling a drunk you're not their best mate and don't want a fight.
    Explaining something to someone who for whatever reason can't understand is a bit of a pointless exercise, if they understood you wouldn't have to be explaining it to them.
    The only positive thing I would add is if she still has capacity get some lasting power of attorney sorted as after a formal diagnosis it can be a lot harder without one.
    Don't bother too much about the memory clinic, you may get a formal diagnosis but that's about all, you are unlikely to get anything more from them that (think as much use as a chocolate teapot and times it by 10).
    K
     
  5. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    Thanks - I see what you mean but we can't consider a home without telling her she may have a problem so a but stuck!
     
  6. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    We were just thinking if we have to start talking about a home :-/
     
  7. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    I know - we were just thinking if we have to start talking about a home we need to give her a reason :-/
     
  8. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    Thanks - useful advice! We are waiting for the memory clinic
     
  9. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Tell her it's a rest home while she recovers, a hospital recuperation unit, an hotel while the house gets some urgent repairs anything that makes it more acceptable to her. On here they're called "love lies" just whatever she needs to hear to make it easier and more acceptable to her and say 3 Hail Mary's for doing it:)
    K
     
  10. Caseys

    Caseys Registered User

    Dec 10, 2015
    37
    I think we've used a lot of 'love lies' and she'd appreciate the Hail Marys as a true catholic :)
     
  11. lin1

    lin1 Registered User

    Jan 14, 2010
    9,320
    Female
    East Kent
    #11 lin1, Dec 24, 2015
    Last edited: Dec 24, 2015
    Love lies , I used many and am not sorry. In the early days my mum was told many times by her psych till we put a stop to it.
    In latter stages mum sometimes asked what was wrong with her, we used to tell her she had a problem with her memory, thankfully mum accepted this.

    I know others here have mentioned Lasting power of attorney.
    I don't know if these are already in place or if your mum is able to understand what they are for or would be willing to grant them.
    But I thought I would put a link about them here.
    The online forms are quite easy and you can save and go back as many times as needed.
    I strongly recommend doing both types.

    https://www.lastingpowerofattorney.service.gov.uk/home
     
  12. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    my be worth getting formal diagonsis the hight=er rate attendence allowence can be claimed to help pay for things such as carers or as we are having to icontence pants and extra bedlining
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,106
    Male
    Bristol
    I was just going to suggest that balloo, certainly using the diagnosis paperwork in claiming extra benefits and medical help has proved useful.

    As for telling Casey telling MIL she has dementia. OH has the old fashioned stigma about any hint of mental illness and says she must be crazy then and that is not a pleasant idea so she denies it. No amount of persuasion will convince her she is not crazy, so I don't mention it anymore
     
  14. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    i agree no point in telling them my MIlwas diagnosed 3 years ago a was not impressed when dr in hospital started using words lie dementia when she was in with a uti fortunatley she forgot i wa snot happy the whole expereinace of hospital was bad 3 days and nights i sat on a plastic chair as MIl could not ask to go toilet and as that was her problem i stayed i will never go back and her GP knows so doing best to keep her at home with us
     
  15. jjude

    jjude Registered User

    Jan 4, 2011
    34
    England
    My dad was told in conjunction with my mum he had Alzheimer's but went into instant denial and told people he had an aneurism and the word dementia was never mentioned again. five years down the line I don't believe there would of ever been any point I correcting him. when he tried to ask what was wrong with him I just told him gently he sometimes forgets things and he just seemed to accept that. I wish you well on your journey
     
  16. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    #16 fizzie, Dec 27, 2015
    Last edited: Dec 27, 2015
    .

    We had higher rate Attendance Allowance and never had a formal diagnosis til the day my Ma died although I knew and doc knew it was vascular dementia. As Kevin says our memory clinic is completely useless and I felt I would be putting ma through unnecessary stress for no reason - had it been Alzheimer's I would have had a different viewpoint because of meds.

    Continence pads are free from the continence nurse
     
  17. southlucia

    southlucia Registered User

    Dec 19, 2011
    166
    My dad would never have accepted his diagnosis. He was told by his consultant, but played in down/forgot. He was beyond being able to understand or retain that information. He was fine, carrying on with life as usual. There was nothing wrong with him. The reality was far from that. He was in extreme danger, at home, and out and about. I only once mentioned 'care home' and he understandably got angry. Of course he did. There was nothing wrong with him, from his perspective. Do try all the suggestions that Kevinl has made. These work for some. None of these would have worked for my dad, because he was a much younger, healthy working man ( in his world). Getting him into care was the hardest thing I've faced; but it was essential for his well being. Take a moment to google 'Anosognosia'. It helped me to understand that denial isn't necessarily a conscious decision when dementia comes into play.
     

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