How to discuss a dementia diagnosis?

Discussion in 'I care for a person with dementia' started by Tigger68, Jul 14, 2019.

  1. Tigger68

    Tigger68 New member

    Jul 14, 2019
    My mum was diagnosed with dementia with Alzheimer’s a few weeks ago, and I am struggling with a specific issue right now. the consultant has avoided using the term dementia or Alzheimer’s to avoid distress for mum, and I totally understand the reason for that, but the problem is that me and my sibling have practical things to do, like informing DVLA, getting a Lasting power of attorney, and broaching future care and finances issues with mum. These are difficult enough at the best of times, but am really struggling with how to discuss these with mum, even how to begin the conversation, and how to sustain it when she diverts attempts to discuss these things. Not helped by being devastated right now and just wanting to hide and cry all the time.

    Anyone out there with any tips and things that have worked for you that can inspire me?
    Thank you!
  2. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    Hi there,

    Sorry to hear of your situation, my Dad was diagnosed at 59 last year and he wouldn't acknowledge anything to do with the word Dementia. He was however already in the mid stages so he had an idea but was already loosing capacity. We had already stopped him driving so just told him that the DVLA needed to 'inspect' his licence so we took it off him and sent it off. Same with POA, I told him that we needed to sort out his finances and well being for the future and that Mum and I would be back up's incase anything ever happened, which did the trick.

    I have to say, at first we did want to discuss it with Dad, we wanted him to acknowledge but them we realised it was cruel, he probably did understand to an extent inside and by us keep pushing it, it made him feel worse, so from then onwards we never mentioned it again. If we needed to discuss or ask something we would turn it into a story of some sort.

    The other thing I would say is don't stop yourself from grieving or crying, don't let it build up, it's part of the process for us. My Dad has deteriorated rapidly and is now sectioned and waiting further assessment to see if we can stabilise him or if he will need full time residential nursing care.

    Take care, Adele
  3. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    We are having an ongoing battle with my Dad who has been diagnosed with Alzheimer’s but won’t notify the dvla until he has received the letter from his consultant to confirm he has Alzheimer’s. he flatly told us the other day he doesn’t have dementia and that he isn’t an idiot. We have stopped using the words dementia and Alzheimer’s and use memory problems now. Like the other night he asked why he was taking these new tablets and we just said to help with your memory. I think my Dad knows really that something isn’t right, I’m sure your mum does too. My Dad is definitely just trying to carry on as if nothing has happened

    Just wanted to say you aren’t alone x
  4. Tigger68

    Tigger68 New member

    Jul 14, 2019
    Thank you Adele and Rach1985 - thanks for sharing your experiences and how you manage it. Just wondering also how you deal with it when (if) your dad tries to deflect and divert when your trying to have a conversation and get a particular thing done, or at least underway. Is it that you match their determination and allow a much greater amount of time here, and/ or are there other things that you do as well.
    Adele - what kinds of ‘stories’ do you tell to get things done? (Looking for more tips here..)
    tigger68 x
  5. Lawson58

    Lawson58 Registered User

    My husband is now five years into his diagnosis of AD and still won't discuss it or acknowledge it.

    My husband would only agree to getting Powers of Attorney if I did mine too. There could be other reasons why you might get a PoA. Does your mum have any other health problems like heart, diabetes, low vision? What would happen if your mum had a fall in the supermarket and broke her leg, who would look after things till she was better? These sorts of things are worth a try. Maybe you just need to be a little creative and tackle the problem side on instead of head on. The default position of many people with dementia is a straight out NO so there is little point in trying to have a 'chat' with her in the usual sense of the word.
  6. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    I didn’t really talk about dementia to my dad, just dealt with issues as they came up.

    Re LPA - I printed the forms off from the Office of the Public Guardian and filled them in with dad so that I could help him with managing his money and talk to the doctors for him if he ever became too poorly to do it himself. He was fine with that.
  7. Devon123

    Devon123 New member

    Jul 9, 2019
    We broached the subject by talking about a friends mother stroke which left them unable to walk/talk and what a negative impact/nightmare it was because family didn't have POA or anything in place (and it is a nightmare). This was in general chit chat. Dropped in a few more stories about similar experiences. We then suggested that maybe we should sort out a few things to make sure that it doesn't happen to them if a similar situation was to arise, and so we could look after them properly and as they wished. This seemed to work.

    We also blame the Doctor a lot, eg the doctors has recommended that you don't drive, or the doctors say you need to do this.....(feel a bit guilty as our GP is lovely and very supportive). It much easier to accept advice from a third party rather than close family member.

    I hope this approach helps.
  8. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    I used the added incentive of the ongoing financial cost of dealing with the Court of Protection if someone had a stroke or accident that left them unable to look after their affairs and they had no LPA s in place.
  9. Tigger68

    Tigger68 New member

    Jul 14, 2019
    Thanks everyone that’s great. Really useful and I’ll be using those in the coming days. very generous of you to share all your tips. And thanks too for your kind words about reminding myself of the need to allow myself time and space to grieve - I take good note of that.
    I’ll let you know how it goes. I know from my professional life not to assume this will result in conflict and upset, but that’s what I fear will happen. Different rules going on here.
    Love to all, T68 xx
  10. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    Oh definitely different rules now!! I’m learning that, and always having to be the person in the wrong or that backs down isn’t easy!
  11. Lawson58

    Lawson58 Registered User

    And just when you think you are getting the hang of it, the ground rules change. Not only do they change but no one tells you what the new rules are
  12. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    Yes and no one tells you how long them rules will be in play for either!
    I’ve seen programmes on tv, read a couple of articles, never did I realise how difficult this would be until it actually happened
    Does anyone realise I suppose
  13. Tigger68

    Tigger68 New member

    Jul 14, 2019
    Good points about the rules mystery...this is a really difficult one, like trying to remain balanced on sands being pulled out from under you. Or some such metaphor... T68x
  14. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    The way I’ve come to accept it is that
    Everyone is playing cricket rules
    My dad used to play cricket rules and some days or hours or minutes he will still play cricket rules
    But then he will randomly start playing football rules and I don’t know those rules so I start to learn them
    But then he changes again and starts playing rugby rules so now I have to learn these too and every time I catch up he starts playing something else
    All the while dipping in and out of playing cricket
  15. Lawson58

    Lawson58 Registered User

    When we were kids, if we were playing backyard cricket at next doors' house, we played by their rules. But if we were playing at our house, we played by our rules, and it would be safe to say that those rules could be quite flexible at times. I think sometimes my OH thinks he's playing cricket at his house, not ours!
  16. Tigger68

    Tigger68 New member

    Jul 14, 2019
    Nice metaphors! Love ‘em
  17. Tigger68

    Tigger68 New member

    Jul 14, 2019
    Hi there. Have had the driving and power of attorney discussions with mum now, and wanted to share with you that it was absolutely fine (so far). To terribly happy about letting dvla know but accepting, and she welcomed the power of attorney arrrangements. So we are cracking on. Just as well as have come to realise just how affected by this illness/condition she is.

    Two lessons for me on this. One, don’t assume there will be conflict -difficult conversations may not necessarily be as difficult as we imagine they are going to be. Two, use great tips from people who have experience with this.

    Massive thanks to all for your willingness and kindness in sharing your experiences and tips. Hugs.
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    #18 Palerider, Jul 25, 2019
    Last edited: Jul 25, 2019
    Never easy. Lots of good advice here already. I was living in London when dad was told about mums Alzheimer's he really battled with talking to mum about it. When I came home he had tried but he kept on using the word no one wants to hear about themselves 'dementia'. I didn't just take over, although dad wanted me to. I observed how mum behaved when it came up and took lessons from that. You always have to remember people do make links in how you respond to them, even in dementia and this can impact on conversations around it. People with dementia have an uncanny knack for remembering the things they didn't like about you!!

    I have never said the words Alzheimer's or dementia to mum, to do so would be like cutting my own nose off...

    I always talk about how now she's older that her memory isn't so good and I give examples that I know she will connect with where she has forgot things. This helped when mum was in the earlier stages to get things organised, which she did in the end herself with her solicitor after dad died. At that stage she was still able to have some insight, although as I have found out she denied anyone having LPA for health and welfare, but at the time that was a decision she made knowing the possible outcome.

    If I was to try to reason with mum now at this later stage, it would be impossible, no matter how kind or understanding I was - you do need to broach it for her sake to know her wishes and hopefully agreement on LPA's.

    I cry even now sometimes, but as you move through this journey you will acquire an understanding, an insight and ways to cope.....

    Edited: Just saw your last post, sorry for the late response

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