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the dementia "bubble"

Discussion in 'I care for a person with dementia' started by Linda52, Mar 3, 2015.

  1. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    Hi all, before dad was diagnosed with dementia all I knew of it was that the sufferer would be "in their own happy little bubble, but it was more hurtful to the family as they had "lost" their loved one".

    Well nobody told us about the hellish journey between diagnosis and that "bubble" did they, nobody talks about the obsessive behaviour from repeated questions, to leaving taps on, to putting a knife into the dvd player, to walking around semi naked, to being in and out of bed at all hours of the day and night.

    Dad is now in a nursing home approaching end of life and has never been in that little "bubble", but maybe it does happen for some? ,

    I am so very grateful to this forum and the wonderful people who post on here because I have learnt so much along the way which has been truly helpful and inspiring and has taken away that feeling of being alone.

    Love to you all, Linda
     
  2. Ash148

    Ash148 Registered User

    Jan 1, 2014
    276
    Dublin, Ireland
    I agree wholeheartedly. There is this rose coloured view of people gently slipping into a world of their own, which was all I knew until Mum was diagnosed 15 months ago. Actually, amazingly given the path that we've travelled in the meantime, mum is nearly in that bubble, but what a horrible path it was.

    Take care
     
  3. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    I think I'm the one in the bubble
    :eek:
    Dad is 'managed by me' I have older siblings (manipulative horrors) male sibling has a gawp at dad every 2-3 months for 5 mins and female sibling manages 3 hours on a Sunday evening and 3 hours on a Tuesday. Dad self funds for a companion at an eye watering and stinging price. He has no idea he self funds. I got POA. Siblings upset by this. Dad has no insight into his memory issues (mixed dementia)
    My bubble keeps the horrors at bay and dad ok.
    Sick with worry about the future but hoping the bubble will stay intact so I can get through it all :D
    Money worries are the pits :mad:
     
  4. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    You've described it much better than I did Ash, and its only when you experience the journey that you realise there is so much more to this vile disease than is commonly known. In my ignorance I wasn't that worried when dad was diagnosed because we are a close family and everyone pitches in to help.... little did I know how it would break our hearts every day seeing him deteriorate to the helpless person he is now.

    Lots of love to you and your mum, thank goodness for the support and love of this forum.

    Linda
     
  5. Ash148

    Ash148 Registered User

    Jan 1, 2014
    276
    Dublin, Ireland
    Love to you too Linda. We were always a pitching in together kind of family too but we've been going through a rocky patch for a while. Mum in late stage, dad recently diagnosed with moderate dementia.
     
  6. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    Adcat if being in that bubble helps you to get through then long may it last. We all need something to keep us going forward, whether it be escapism into a book or music or even just a bar of chocolate!

    Linda xx
     
  7. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Linda52, you've inspired me. I'm now in a chocolate bubble!
     
  8. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    Oh Ash my heart goes out to you, having both parents with this horrible disease. xxx

    Linda xxx
     
  9. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    Adcat we should have a "like" button on here, because your last post made me smile.


    Linda xxx
     
  10. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    I hate to say it but I think my OH is in the bubble. He is blissfully unaware of any problems, happily toddling through life. That doesn't mean it's easy to look after him but I might have it easier than some.
     
  11. Ash148

    Ash148 Registered User

    Jan 1, 2014
    276
    Dublin, Ireland
    Like the chocolate bubble: maltesers are my favourite.

    Bubble baths help too: me and mum. She always loved a bath, still does. It's one of the few advantages of her current hospitalisation as the nursing home only offered showers. Off to own Radox bubbles now.
     
  12. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    Im pleased to hear that Beate, bless him. Its never easy but I hope youre managing to look after yourself too.


    Linda xxx
     
  13. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    My dad was in a happy little 'bubble' earlier on. Refusing to accept his diagnosis, informing me he would be better in 'two years.' That was when he was early stage (27/8 on the short test.) Now he's deteriorated (20/21) he still doesn't accept his diagnosis, but he's also become anxious and 'frightened.' While the former was frustrating because he wouldn't make any decisions in his own best interests, this stage is also a concern, because he is obviously unhappy most of the time. I'm going to have to ask the doctors if they can give him something, I think, to try to put him back in a bubble. I'm vaguely aware there may be consequences of that, though. :(
     
  14. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    I'd love Mil to be in that 'bubble' - it feels like everything scares her or makes her angry. Times when she seems content (if not happy) are rare, even the majority of her delusions now seem to only cause her worry and concern. I really wish that there was some way to rip away the rose coloured glasses - I literally seethe when I see the images so frequently used by various groups in relation to dementia - the sweet looking elderly lady gazing up with a smile into the face of a saintly looking carer, who hasn't a hair out of place and who doesn't look remotely exhausted or stressed - totally unreal and misleading :(
     
  15. Linda52

    Linda52 Registered User

    Apr 17, 2013
    11
    clacton, essex
    Redlou, my dad has been on various medications throughout the journey, took a while to get the dose right then his behaviour became easier to handle for a while. Heres hoping the doctors get on the case and help quickly.


    Ann Mac I totally agree about the adverts and films we see regarding dementia, they always choose people who are still able to articulate and live reasonably normal lives, obviously in very early stages, nobody tells the real story about later on... people not affected would be horrified im sure.

    Love to all

    Linda xxx
     
  16. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,431
    This has worried me too, Linda. i have encountered many people who assume dementia means that the person doesn't suffer 'as they don't know what is going on'. Also when I have said to people 'who will look after us when we get it?' the comment is often 'oh well, I will be past caring, won't I? I'll be happy in my own little world. Someone else will have to sort me out'

    I have witnessed my poor mother go to hell and back with dementia and I am afraid she retains, despite being quite late stage, a sort of sense of things that means she is certainly not in a bubble. Somehow we have to get this message over to people, that dementia isn't some sort of. happy time when you are a just a little bit nutty. Maybe for a lucky few, but I have seen a vast range of unhappy emotions displayed by people with dementia and we need their plight to be understood properly.
     
  17. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I so agree with you guys - I don't think people have half an idea what dementia is and how bad it is. During one of my Mum's more normal moments she turned and said to me 'How did I come to this? Thank goodness your Father can't see me now' My Dad passed over 20yrs ago with a heart attack.

    AD needs serious money, last year over 550 million was raised for various cancer charities - only 50million for AD. There has to be a balance otherwise people are going to be saved from cancer only to have a chance to develop AD.

    Local authorities have no money, it's just an awful situation all round.
     
  18. TDA

    TDA Registered User

    Mar 3, 2015
    25
    I watched an article on BBC Breakfast about Dementia, both the people on the clip had decent speech, and could happily discuss their condition.. That is not how my mother is.

    There was also another clip about a Dementia house with all the gadgets, pill reminder boxes, different colour fridge door(?) etc, what they don't realise is that my mother would open the pill box when it beeped (if she could) and then get the tablets, wrap them in a handkerchief/knickers/sock/whatevers handy and put them somewhere safe.

    :confused:
     
  19. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    It's the whole physical deterioration side of things that never gets mentioned. My poor mum literally became bedridden and doubly incontinent overnight which we just weren't expecting. Now she is refusing all food and drink. A few months ago we walked round the psrk, sat chatting in the sun and she offered to buy me a coffee, then 3 weeks later bang in hospital followed by nursing never to walk or come home again. I wish she was in a bubble instead. In her words "I'm a wreck, never thought I'd end up like this." Let's get real on dementia.
     
  20. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    127
    I think the public should be aware of the 'worst' too, but for the people in the early stages it would be horrific. As soon as my OH sees or hears a report on the later stages he asks me to turn it off saying he doesn't want to know.
    I don't know what the answer is.
     

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