1. redsquirrel

    redsquirrel Registered User

    Jun 14, 2014
    8
    My dad is in the later stages of dementia and living in a care home. He was one of the unlucky ones who started to go down hill at age just 59. The reason for my post is that I am looking for anyone who has had experience with a particular stage of this horrid disease.

    To sum up his current health:
    - Cannot walk
    - Cannot use hands
    - Uses 'Yes' or 'No' sporadically as his only speech.
    - Incontinent
    - 'Emotionless' - no smiles, no anger.
    - Completely dependent on every part of his life.

    Two questions really:
    1) He cried today. We think he is feeling something but how can we 'tap' into his thoughts when he is 'lockedin'.
    2) What is left to deteriorate? He can swallow, although coughs a bit. Thats all he can do. How long can someone go on for? His pupils are constricted and no longer change size with light, one of the tests you will see in A&E following a brain trauma. It looks like vast parts of his brain are dead.

    Just struggling to visualise the next part of this nightmare.
     
  2. theunknown

    theunknown Registered User

    Apr 17, 2015
    321
    Sorry Squirrel, I have no experience of this type of behaviour. Only posting to say how horrid it all sounds, and how awful for your poor dad and his family that this disease started in middle-age x
     
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Does your Dad seem to get any pleasure from hugs and other contact? It must be awful for all of you.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I am so sorry, I would just question that he might be in pain. When someone cries they are usually in mental or physical pain, there is not reason to suppose that your dad would be any different. If he isn't on pain meds then I would ask them to look at it and explain why and if he is I would ask for a review. I always worry that non-verbal people are suffering pain

    I can't imagine the pain you are going through, try to stay strong, he knows you are there xxxx
     
  5. Deputypink

    Deputypink Registered User

    Aug 4, 2013
    44
    Keep going

    Having been through many of these symptoms with Dad - my heart goes out to you . Does he have regular paracetamol as this may take away any pain. ??? Keep going - he maybe able to smell you or hear you - so just talk and spend time together .
     
  6. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    As others have said, please ask about pain relief. There are so many ways he could be feeling discomfort - even simple things like pins and needles or muscle cramps if he is immobile. Also seek reassurance that the staff are checking his skin for pressure sores and any rashes caused by the incontinence. If he still has his own teeth, it could be toothache.

    I hate dementia for what it does to our loved ones and the heartache it causes us.
     
  7. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Oh redsquirrel my heart goes out to you my dad is going through these stages now too. He's stopped swallowing as well this week so is on thickness fluid and awaiting a salt team referral for liquid food.
    I echo what the others say about pain relief. Prescribed paracetamol was enough for dad for a while.
    Take care xx
     
  8. 3shirley

    3shirley Registered User

    Nov 28, 2013
    20
    workington
    My husband has all your dad has except he is now peg fed. There is no response from him at all it is so sad xxx
     
  9. mumsgothelp

    mumsgothelp Registered User

    Jan 8, 2016
    11
    POOLE DORSET
    Sorry to hear this squirrel and your dad is so young. I have just joined talking point as my 87 year old has dementia and has declined rapidly over the 12 months since dianosis.
    Following another collapse, she has broken her arm, contracted pneumonia while in hospital . She is now unable to walk. She is doubly incontinent. She is unable to swallow food so is practically starving all the time. She has no energy at all as you would imagine. She is unable to ask for some things as she has forgotten how to. She sleeps or similar mostly. She is able to acknowledge me and ask a few limited questions but it's very painful to see her drift away like this. I feel she is very close to the end so I am sharing with you as I keep thinking the same- how long is her torrid journey. She does not say too much about any pain I feel she has lost emotional responses too but occasionally I can get a little chuckle out of her which is like a bright light for me and it lifts my mood. I hope your dad has some more positive moments too. Best wishes for you and your dad, J

     
  10. Nightowl74

    Nightowl74 Registered User

    Jan 13, 2016
    1
    empty vessel

    I'm sorry to hear that your is going through this terrible disease , I have come here to see if anyone else is experiencing the same thing with their loved ones. My mum inlaw is 85 and this time last started to become unwell with Uti's and we put he confusion down this by Easter she was getting much better . Due to other copmplications she ended up loosing both legs in the space of a week 3 surgeries and don't know how she pulled through less her. She is now in a nursing home and after spending Christmas in hospital for aspirated pneumonia, they say she a vascular dementia and in final stages of life , but the quality of her life is poor sitting there vacant it's so hard to watch and her swallow has started to go too , how much longer do we have watched our loved ones lives end this way . Best wishes to all xx
     

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