Advice on getting a proper diagnosis

Discussion in 'I care for a person with dementia' started by CBN, Oct 16, 2019.

  1. CBN

    CBN New member

    Jun 26, 2018
    5
    Hi
    My MIL most likely has some form of Alzheimer's. She started having memory problems around 5 years ago. 3 years ago there was a noticeable change in her personality and for the last 2 years has been unable to do just about anything for herself. Around 18 months ago she started experiencing fainting/episodes/seizures culminating in her having close to 30 in the space of a few hours and an ambulance being called followed by a week in hospital, in the dementia ward.
    A year later and we are no closer to getting any answers.
    She's in her mid fifties and her partner has had to give up work as she needs someone with her 24/7. So stuck in a scenario where they are eating into their savings and he is struggling to cope.
    Since coming out of hospital she has had one appointment with a consultant who suggested she may have Parkinson's and that is it. The GP is the only person else has seen her and has thus far out her forward for counselling (which she went to and the therapist said she couldn't understand why she had been suggested as it was clear MIL needed medical help, she then was put forward for a dopiame scan but the consultant, after spending a few minutes on the phone for a pre consultation, also said it was a completely inappropriate suggestion and after reviewing her notes suggested we put in a formal complaint to the NHS about the situation we find ourselves in.
    At wits end right now as after so many false starts she refused to attend a hard fought for appt with a neurologist today. She refuses to admit anything is wrong.
    I don't know where to go from here as this affects her vision so badly she may as well be blind and really affects her quality of life, is really anxious all the time and couldn't even work out how to get a glass of water if she had to.
    I'd really like to understand what more we can do, does a diagnosis make any difference or is it just a case of this is it.
    I feel like this isn't normal, that help should be more forthcoming but maybe I am naive.
     
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,156
    Nottinghamshire
    Hi @CBN

    I'm sorry to read you're being passed from pillar to post by the people who should be helping your MIL. My experience with my dad was that if you needed results you had to be prepared to fight for them. It shouldn't be that way.

    I'm afraid I don't know enough to suggest anything useful but hopefully someone else who has more experience of this sort of situation will be along soon to offer some suggestions.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    I think it does, @CBN. At least it gets you into the system.

    From reading your catalogue of events spanning 5 years, I think you would be within your rights to ask for a second opinion with a different consultant.

    How this is suggested to your Mother in law might be tricky. Perhaps you could ask the GP to suggest a well woman check up.
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,755
    Female
    They must have done some tests when she was in hospital with the seizures - did they do a brain scan?

    What a shame she refused to go to the neurologist appointment, that may have given some answers. Has she been referred to the memory clinic?

    In answer to your question, if she has dementia a diagnosis makes limited difference, in that there is not much in the way of treatment available. However she may have other issues which could be treated (for example her poor vision), so you do need to pursue a diagnosis. A diagnosis will also help in later stages when professional care is needed.

    Do you think the GP is at fault? If so could you see a different GP? The problem you have though (as well as all the false starts you've endured) is that if she refuses to go to appointments or co-operate at all, it makes little difference where you are referred to.
     
  5. CBN

    CBN New member

    Jun 26, 2018
    5
    She had quite a number of scans in hospital, and they even did a few of them twice to be sure. She had all sorts of visits from various consultants from psych to neurology to dementia consultant etc but nobody could agree about what was actually wrong then. After a week of no more faints her was discharged. Its year since then and effectively zero follow up just us chasing endlessly.
     
  6. CBN

    CBN New member

    Jun 26, 2018
    5
    She has been to the optician for her eyes and has near perfect vision apparatly but the optician said it's obvious it's her brain that's the issue.
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,755
    Female
    Thanks for you reply CBN. Yes, I assumed it was a neurological issue affecting her eyesight, but thought that may be treatable if they reach a diagnosis. In your position I would book another appointment with the neurologist and aim to get her there by bribery, lies or whatever will work. Of course she may arrive there and refuse to co-operate, but it's worth trying.
     

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