1. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    My father is in the palliative care ward and clearly has signs of dementia. Recently he has become very aggressive/ delusional and shows acute confusion. I am so distressed I am off work and cannot even talk to him. He is refusing medication at his ownhome and is soiling the bed. He refuses any form of home help and as a full time main breadwinner I cannot cope. He lives on his own.
    Desperate for advice / help
    McMillan nurse already involved as he has lung cancer plus of course district nurse
    What are my rights. I am not his official carer and receive no financial help. He refuses to use his attendance allowance to pay for home help.
     
  2. Bod

    Bod Registered User

    Aug 30, 2013
    1,181
    Has he been checked for urine infection?
    Water works infections can cause all sorts of behaviour changes, mostly reversible with treatment.
    He may have to be "Sectioned" to be medicated, as you have various nurses available, maybe they can help.

    Good luck
    Bod
     
  3. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Hi Bod

    Yes been fully assessed for medical conditions but no obvious medical reason yet given.
    Neither is it apparently the spread of the cancer as he has had a full brain scan. Likely cause they say is an onset of dementia. They have not sectioned him at the minute as they say he is showing no signs of an inability to make a decision for himself. This does of course mean he could be sent home. This fears me with dread as they have said he is incapable of looking after himself.
     
  4. Bod

    Bod Registered User

    Aug 30, 2013
    1,181
    You can refuse to take any responsibility for him, should he be discharged to home.
    Make absolutely certain that where he is now, understand you cannot and will not cope with him, and hold them responsible for his care.
    It will take a great deal of strength on your part, as allsorts of pressure will be put on you, to take him.

    Insure that his history is well known, and has caused your current illness. There are places that can cope with him.

    Bod
     
  5. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle

    That is great advice Bod. I fully suspect that is what will happen. My present situation working full time and as the main breadwinner leaves me in an impossible situation and unable to be there for him. My wife has been so hurt by him that she refuses to help him now and has even said you either stand up and don't give in or its me. I don't blame her for that she doesn't understand what behaviours dementia can cause. I feel so guilty and my health is suffering
     
  6. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,465
    leicester
    Hi welcome to TP.

    First stop feeling guilty, it is the illness and what ever you do you won't change that.

    Your family life and your health are the most important things to concentrate on.

    I don't know if it is feasible? But could the McMillian nurse liaise with SS, so you can take a step back from caring and just be a son again?
     
  7. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Hi Helen.
    Thanks for your advice. I am not contacting the hospital at the minute as I cannot face him. I'm too upset. The McMillan nurse is liasing with the hospital but they have tried to call me / left messages to call them. I don't feel able to do this at the moment. Dad then leaves voicemails threatening me. I love my dad but cannot cope. I agree my health and my marriage and my livelihood has to come first and I know I want to take a step backwards. The problem is how far do you step back ? My fear is they may get dad to change his mind and get home help but that then leaves me largely responsible as home help can't be there all the time can they ?
     
  8. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Does anyone have any advice my nerves are shattered?
    How far do you step back?
    What happens if he once again refuses home help?
     
  9. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,465
    leicester
    IF and it is a big IF, he is deemed able to go home with carers, it is a duty of care for SS to put into place a robust care package that would enable him to be at home without any input from you. Maybe I should say that is what they are supposed to do!

    But because your Father is already receiving palliative care supervised by the Macmillan nurses I think they will support you in ensuring that your father's care package is well structured, in our area the Macmillan team work alongside the local hospice.

    Please try not to be too hurt by the voice mails, there is a saying 'you always hurt the one you love' and I presume yours is the only phone number that he can dial.
     
  10. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Hi Helen

    I really appreciate your advice. What happens though if he refuses home help as he is doing? They said if he passes the mental capacity test he has a right to go home and to decide for himself if he wants home help?
    The consultant has said and his GP that he cannot cope at home without support ? He is in their eyes incapable of looking after himself ? But does he still have the right to refuse home help in these circumstances?
     
  11. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Does anybody have any advice on this. ? My dad is deemed incapable of looking after himself but refuses home help ???
     
  12. Beate

    Beate Registered User

    May 21, 2014
    11,743
    Female
    London
    I know you are stressed out but I'd advise you to ring back the Macmillan nurse - nothing will get sorted if you just stick your head in the sand. I am sure she will try everything to help you. If you can't do this yourself, get in touch with a charity like Age UK, Alzheimer's Society or the Carers Centre and ask for advocacy help which means they can speak to the hospital on your behalf.
     
  13. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Hi
    Thanks for your help. I have been in constant touch with the McMillan nurse so not looking to think it will all go away. The McMillan nurse has been wonderful but fact remains that my dad refuses home help yet is deemed incapable of looking after himself
    Where do we stand if he is sent home and refuses home help???
     
  14. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,465
    leicester
  15. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Hi Helen

    Your advice is great and many thanks. How do I appeal if they assess my dad as passing the mental capacity assessment.
     
  16. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Can anyone explain as well to me what they think a fully comprehensive care package is?
    How many carers?
    How long for ?
    What time of day?
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,784
    Female
    South coast
    In my neck of the woods the most you can get from SS is 2 carers coming in 4 times a day for half an hour at a time,but it does depend where you are.

    Capacity is a tricky thing. People with dementia may well know what they want, be able to state what they want, but not be able to understand the consequences of that decision. However, although someone has the right to refuse treatment, the hospital and SS have the responsibility to discharge him to a safe environment.

    I would insist that they do not send him home. Use the phrase "vulnerable patient" and "legal duty of care". Often, the people who kick up a load of fuss are the ones who get listened to.

    I would also surreptitiously remove his door keys so that they cannot send him home without telling you.
     
  18. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    Good advice. Many thanks. That is so true. He understands what he wants and that is no carers but cannot understand the consequences of that decision.
    Unfortunately too he has a lock with a key code that all the professionals know.
    My biggest anxiety is when I see him again I'm convinced he will go for me. He is a very aggressive man
     
  19. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    332
    rct
    Hi!..im sorry your having to go through this....firstly..if he has dementia..agression or aggitation is in some dementias his way of communicating..its not that its you ir any one else..his ability to communicate is affected by the disease of the brain..imagine the head with fairy lights and some are flickering or out..the whole circut is affected...imagine trying to tell you that somethings wrong..or upsetting.and the message coming out is jumbled! Its enough to scare anyone.
    Its not acceptable when carers get hurt..but i would say the priority is to see whether any medication can help with the aggression...eventhough it wont solve the communication...
    Unless they know he hasnt got capacity they cant make him do anything...but chances are they dont know much about dementia!

    I totally understand how hard it is for you..i am my dads carer..you must do whats best for you aswell...it sounds like youve done your best for ages...let the networks there supposed to help him do their bit!

    There is no shame in saying enough is enough!..
    Best wishes

    Sent from my GT-I9505 using Talking Point mobile app
     
  20. tonynortheast

    tonynortheast Registered User

    Feb 21, 2015
    27
    Newcastle
    I can't begin to thank you all for your helpful advice so far. I think you understand I'm going through hell at the moment and it's affecting my health, my wife's and is threatening my livelihood and putting huge stress on my marriage
    My wife and I stand united and I know I have to be strong and determined. It is clear we are in a crisis at the moment and my dad blames me for all of this. The added problem is my dad lives alone and I am not his registered carer. I receive nothing for helping to look after him over the last 16 months nor do I want anything
    In truth therefore my dad has no registered carer
    Does this affect the decisions made about his on going care ?
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.