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. pseudonym

    pseudonym Registered User

    Sep 3, 2015
    45
    I hope you don't think me an imposter. It's just that I can't find a decent forum to suit. Whilst my Mum does not actually have dementia of any kind, her mental condition means she is not safe at home so is in a nursing home. She came to dislike her house and similarly dislike the nursing home and says 'no' to everything and complains incessantly about her physical health, people there - you name it. We come in for a tirade of her complaints on visits.

    Anyway if anyone thinks I am not welcome, because my Mum does not actually have dementia (she scored 29/30 on the MMSE), some of her behaviour is giving cause for concern as it seems to fit with some aspects, certainly of what I read about, of dementia. A brain scan was supposed to have been arranged back in April but her useless GPs failed again. Anyway a new consultant has ordered one. I don't personally think she has dementia, but the balance of her mind is badly affected by her condition - and she knows she's ill and that less than a year ago she was doing really well, not ill, though in retrospect we can see there had been a slow burn, so to speak in this direction, not obvious then.

    I will be seeking info on funding later. Late now.
     
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Hi Welcome to TP.

    Please don't get me wrong as I would not wish Dementia on my worst enemy.
    Their are people who have Dementia who do very well on the MMSE. I hope you don't have to wait long for the brain scan and it turns out that the cause of your Mum's symptoms are easily treatable.

    Please feel free to ask any questions.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Hi and welcome to Talking Point.

    We are a very open community: if you are dealing with dementia like symptoms even without a diagnosis we are happy you chose to join us. My mother never had a formal dementia diagnosis, but her symptoms were those of dementia.

    If it walks like a duck etc.
     
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Hello, Dementia comes in many disguises...the old image of the nice little old lady away with the fairies rarely, if ever, exists in reality. It can be so devious in the way it behaves never appearing in a standard form and sometimes not being diagnosable ( if there is such a word:rolleyes: ) from physical symptoms.
    Despite being registered blind, my own Mum used to score very well in the MMSE tests, ( apart from the clock hands and other written bits of course) her consultant said that Mum had obviously been a very intelligent woman who had found ways to compensate for her eyes and memory for many years.

    Keep a diary is a phrase often used on TP. What we mean is to keep a record of strange unusual or odd things that Mum is doing so that you can pass the information to her GP. The greater detail we can provide will help to fill in the gaps, hopefully leading to a clearer diagnosis.
    One other thing I would recommend is to get the Power of Attorney documents filled in and registered so that when ( if) Mum loses mental capacity, the paperwork becomes a bit easier.
    Good luck and keep in touch.
     
  5. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    Hello pseudonym. My mum is in an EMI unit of a care home and her 'official' diagnosis is 'irreparable cognitive impairment'. Like your mum, she has never been diagnosed with any type of dementia. My (completely amateur) belief is that problems with her physical health, which involved her being put on a high dose of steriods, enabled the fact that she was slipping into dementia to be overlooked. I now think that she was having mental health problems for a long time, but she never talked about her feelings/experiences. I'd imagine that everyone on here would be welcoming to someone who is experiencing this, whatever the official diagnosis is. I hope you continue to post here.
     
  6. pseudonym

    pseudonym Registered User

    Sep 3, 2015
    45
    Thank you

    Thank you for your kind replies and I'm glad I am welcome. Just today we heard that an MRI scan has been booked at the Maudsley. It will be a hell of a trial for her (and for us taking her through heavy traffic in a car as this is much further than we've needed to travel with Mum in a car for appointments until now).
    But as I understand with MRIs they are a lot more detailed than CTs (I know this as I have epilepsy so have had many MRIs).

    If Mum's MRI does show anything that the Drs think is significant and may help explain how she is then, well, it won't (I don't think anyway) make any difference to her, but it might help us to understand better. I felt that as she had depression and mega anxiety it might just be reversible with the right treatment (whatever that is - as they've closed all the psychiatric hospitals and care in the community is just rubbish!) as it was when she had it 40+ years ago (though this is off the scale now). But IF there is something...It will make no difference to what we will have to do i.e. sell her house to pay the nursing home fees ongoing.

    When she went to the care home (I am using the term interchangeably) she went in for respite. There are registered nurses there, which is why it is actually a nursing home. They have recently applied for and obtained NHS Funded Nursing Care at £112/week paid to them. Most places you look it says this can be used to reduce the fees paid. But elsewhere it says it depends on the contract. Mum is there on a care contract, but because more and more nursing care was required, they felt justified in applying for the fund. So no reduction.

    I understand there is NHS Continuing Healthcare available to people who qualify (Mum doesn't it seems and I can understand why).
     
  7. pseudonym

    pseudonym Registered User

    Sep 3, 2015
    45
    I meant to add (having come back again) that we applied for Lasting Power of Attorney back in April/May and it was registered by June. Mum has been assessed as having mental capacity, just not the capacity to make decisions (which seems rather at odds with the test). Anyway it's not that surprising really as she's always been bad at making decisions of any kind.

    We also have the MRI result, though it needs still to be interpreted by the Dr. It seems on the face of it that there is not a major issue, but there is an old small area of infarct, but no large infarcts.
     
  8. pseudonym

    pseudonym Registered User

    Sep 3, 2015
    45
    #8 pseudonym, Nov 25, 2015
    Last edited: Nov 25, 2015
    Update

    We have a result now (this is more than a month ago now) of the MRI scan. It shows a "very small old right frontal infarct but no large infarct or space occupying lesion". Also "prominent perivascular spaces and patchy signal change in the cerebral white matter consistent with small vessel ischemia". The Dr recommended that in view of infarct that vascular risk factors should be minimised (BP, blood sugar and lipids) and controlled. I know her BP is very good (though it didn't used to be when she was at home). Lipids is being checked now (not sure about glucose). The Dr also suggests to the new team involved with her care that the MMSE and other tests should be repeated. She has recently been ACE-III assessed and scored poorly so the MMSE is to be repeated but Mum wants my sister to be present. I will be there (though Mum won't know until later) just so both of us can discuss the test and...well I still need to know if the findings of the MRI scan (and the ACE-II and MMSE outcome, whatever that is, could in some way explain her behaviour. It seems the psychologist told Mum that she might have dementia after scoring so poorly with the ACE-III test.
     
  9. Samanthap

    Samanthap Account Closed

    Nov 21, 2015
    5
    Hy and welcome to the forums, I am finding this forum very helpful and I am sure you will also find all kind of information here.
     
  10. Samanthap

    Samanthap Account Closed

    Nov 21, 2015
    5
    I hope you found the forum helpful and are getting proper help here...
     
  11. pseudonym

    pseudonym Registered User

    Sep 3, 2015
    45
    A few months on

    Well a few months on and a (trainee) psychologist has been working with Mum doing series of tests of her memory and so forth. It seems from what I hear from my sister from what the psychologist had to tell Mum (and my sister) that there is some dementia/Alzheimer's. Mum reacted very badly too the news. I am trying to get hold of the psychologist to get her written report ahead of a family and nursing home staff meeting next week, with regard to a care plan for her (not sure if this is already written up or not). THere is talk of changing homes, but there is too much else going on, what thhis new diagnosis, the return of an old condition (trigeminal neuralgia) and the selling of her house. We need to give the present place some opportunity to work to the new plan. And there's a new CPN too who will visit weekly (apparently).

    A psychiatrist has also recently started Mum on Olanzapine, an anti psychotic drug, at a very low dose due to increased risk of stroke and her renal inpairment, along with Mirtazepine which she's been on about 10 months now (with diazepam she's been on for eons!

    I just got out some books about Alzheimer's and Dementia, and I didn't realise that Alzheimer's is one of the causes of dementia. I thought Alzheimer's was just one sort. I had heard of vascular dementia, and I'm wondering if they are thinking there is some of each.
     

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