how best to handle CT scan results?

Discussion in 'I care for a person with dementia' started by tatty, Jan 16, 2016.

  1. tatty

    tatty Registered User

    Oct 14, 2015
    61
    Hi all

    MIL who lives with us had CT brain scan done back in October, no results given then donzepil was sent to her directly in the post with no letter/explanation (see previous post/rant).

    However this was resolved and Memory Clinic nurse who is very lovely is coming out to visit MiL at the house on Wedsnesday to tell her/us results, and to discuss taking donzepil.

    I note that there has been recent discussions regarding giving diagnosis of dementia (I have been told it is mixed dementia on the phone) the consensus was not to tell or give a specific label however SS and MC nurse have both said MIL has capacity , more of a shape shifting state of mind in reality as I am sure you are all painfully aware..


    Personallly I feel that if new meds are being introduced then consent needs to be obtained and an explanation of some as to why they are required,

    so should, in people's opinion, MIL be given 'results'/dagnosis?
    How should medication be addressed?

    And in people experience how effective is it for those with mixed dementia?

    As no one has Heatth and welfare POA (something to do asap) I do not think we should be making the decision to medicate or not without some discussion with MIL whose behaviours are not extreme.... at the moment ....thoughts?

    Thanks

    Tatty
     
  2. susy

    susy Registered User

    Jul 29, 2013
    801
    North East
    My dad ranted on for years about this idiot with a stupid little goaty beard who mistakenly told him he had dementia. I'm guessing that it all depends on what she is expecting. It's a really difficult one this as who knows what will be said and how she will take it just remember that whatever she says is very probably her reality even if it does sound daft. Just listen and be there for her. Don't be the bad person here. She needs you. X
     
  3. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    With regard to the consent issue, so much depends on the individual. Will she ask if the doctor can make her better? Being told "No, but this pill may make you get worse at a slower pace" isn't much of an incentive. :( The more subtle benefits of treatment may not be understood if all she wants is a cure.

    There is a risk that she may react badly to the news. If she denies having dementia she may also reject the medication, because "They've got it wrong and I don't need it."

    Some people have sufficient self-awareness to see the benefits of diagnosis, others see only shame, with strangers knowing their private business. However, if the nurse is as nice as you say, I would trust her/him to give the news gently. It usually comes better from a medical person. If it comes from you then a) you've obviously been discussing her behind her back and b) you are mistaken. :rolleyes:
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Can't see the benefit at all of going into too much detail. Whichever way you look at it dementia is a frightening label for most people and most of us do better when we are not scared.

    Is it a good idea to slow down this cruel disease - yes probably most of us would agree. Would she agree if she was 100% fit and speaking about her sister, daughter, loved one? Yes, probably.

    The drug will be beneficial, the diagnosis makes not much difference really other than medication but will upset most people even if only temporarily distress is still distress and leaves an imprint.

    I'd go for a very low key approach with the meds just saying that they will make a positive difference and have improved peoples' lives and leave it at that.
     
  5. tatty

    tatty Registered User

    Oct 14, 2015
    61
    Thanks for the replies

    If medication was not being suggested then I don't think any discussion of dementa would take place from us with MiL most insightful comment being 'I must of forgot...' on the odd occasion though mostly you didn't tell me/do it/get/you forgot etc:rolleyes:

    Yes the nurse is lovely and was much better when she visited the house than the very pleasnt Dr at the memory clinic was at stopping MiL becoming upset at her 'test' questions! So I think she will tell her in a way that is compassionate from past encounters, the original thought was that as MIL was sent the tablets through the post that we could tell, persuade , explain or just start adding to her other meds which I refused as the issuing hopsital had never even seen MIL so I doubted had sufficient medical history and only a radiologists report.

    My concern is as its mixed dementia is it really that helpful and will we just be causing upset for no good reason? But that is something to discuss with the nurse seperate from MIL.
     
  6. Lawson58

    Lawson58 Registered User

    When OH was diagnosed with AD, the geriatrician was the one who told him so he must have decided that it was the appropriate thing to do. OH was in one of his grumpy stages and wouldn't allow me in the room when he got the diagnosis but after he came out he told me that the doctor said he had a 'little bit of Alzheimer's' so even then he was in denial.

    He recently had a review consultation with the geriatrician who told him that he was doing very well which OH interpreted as saying that he was getting better and so the denial continues. He refuses to discuss it with me and doesn't tell anyone that he has the condition. However, he is quite good at using his medication and I assume that he takes it because he desperately believes that it will cure him. So bits of him are in disbelief that he has Alzheimer's but other bits are hoping for a solution to his problem, confusing and frustrating for us both.

    I think whether you tell someone or not depends on how bad they are when they get the diagnosis. I think that you could take a positive approach about the medication and stress that it is to help a few memory problems. The geriatrician obviously believed that he had an obligation to tell OH the diagnosis but I think that family should rely on their best judgement according to their own situation.

    Tough one.
     
  7. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Hi,

    As others have said you don't need to give a diagnosis in detail 'you have mixed dementia' but can give it in a general way 'you have a few memory problems'. It takes a remarkable person to cope well with being told bluntly that they have dementia, I suspect.

    When we first went to the Memory Café I was quite worried about the number of times the word Alzheimers was bandied around by the people helping there but Mum ignored it - she almost certainly didn't think they were talking about her. We'd never used the A or D words directly with her and I don't now. However she does accept that she has a few memory problems and very willingly takes the medication which for her has been very helpful, because she knows the tablets will help with that. When she decided in the early days she might not need them all the time we used the argument that to keep driving the GP would insist that she took the pills. She agreed easily then. That in my view is consent.

    I still get her 'consent' when persuading her to do other things that are important for her or quite reasonably she would probably not do them. However it's consent in the sense that she does things willingly because I talk her into it. I do this on the basis that were she able to think as she used to, she would certainly have agreed. She can't think as she used to so I have to think for her but try to put myself in her shoes as she was 10 years ago. The further along the path she goes the more I have to work with what she would have wanted for herself. A sort of living will I suppose.

    It's tough in the early stages as people can often appear very rational for chunks of time. However it's important to remember that the dementia still has an effect so is it the real person speaking or the Alzheimers effect? Never easy.
     
  8. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    OH was told his exact diagnosis by the consultant. He had Alzheimer's and vascular dementia. He accepted this and accepted the tablets. He went so far as talking about it to a couple of groups and we did a piece for local radio.
    So you could say he accepted it.
    However, several years forward I found it better to call it a bit of a loss of memory, which he accepted.
    He didn't really like the term dementia, cos he said he wasn't demented! Fair enough, I suppose.
     
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    My mum said no-one should be told they have dementia because demented meant mad like mad house, bedlam, workhouse, mental institution and all she had was memory loss. Absolutely correct and I think dementia is an horrendous term- they are finally changing it in the US I believe perhaps we will follow......
     
  10. tatty

    tatty Registered User

    Oct 14, 2015
    61
    Thanks for all the responses, so far the A or D word has not been mentioned by us and even at the memory clinic it was memory that was mentioned however the waiting room, as possibly we should have expected, had posters leaflets etc all about A D etc in large enough print for MiL to read even withmacukar degeneration! Hence I think her upset on first going in to see the Dr. before he had siad anything.

    I am hopeful that MC nurse will keep to memory and helping keep it as when asked for a brain scan at memory clinic she refused but when put to her at home a few months later about having a head x ray she was willing and had it done a few months later without fuss or upset.


    I think a low key, matter of fact approach is best especially as SIL wants to come from 2hours drive away to have a big family confernce (I think SIL thinks diagnosis= CH and no responsibility to help as MIL would be LA funded) made worse by the fact that if she comes MiL will find it very odd as she never does and MIL does not like BIL and his family knowing any of her 'buisness' which its is bound to cause MIL greater distress than any thing the MC nurse might say....... hopefully OH has explained well enough less is more in this case.

    Medication front MIL will , going on past experince, say she will do anythings Drs , nurses etc tell her to do , though she won't always remenmber that they told her. or suggested for ber to do it, hearing aid hokey kokey comes to mind... in out shake it all about:rolleyes::D still will use them as the reason /excuse needed....


    Will let you knowhow it goes after Wednesday, thanks again:)
     
  11. tatty

    tatty Registered User

    Oct 14, 2015
    61
    Update

    All went well , MIL told that after the xray it would be advisable to takes some new tablets .... what are they for .... they will help your memory ... reply of laughter.... well of course if you think so nurse, of course I willl...


    Cut to next day MC nurse suggested taking in morning with other meds... left in tablet box.... note left as I was off to work to remind to take al lmeds...... later that day .... oh I forgot to take the tablet for my memory I must have forgot...::D:p.... (only took her adcal left thyroid and BP. tabs too) .....had to laugh
     

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