Advice needed - at end of my tether, don't know what to do!

Discussion in 'I care for a person with dementia' started by sassy_lassy, Mar 15, 2015.

  1. sassy_lassy

    sassy_lassy Registered User

    Jun 16, 2014
    #1 sassy_lassy, Mar 15, 2015
    Last edited: Mar 15, 2015
    My 86 yo dad has been suffering from dementia for about 12-18 months (hard to know when it began exactly). He also suffers from advanced prostate cancer which is treated with an implant and causes urinary incontinence issues. He has been wearing pads for 9 months now.

    Dad lives with my mum (his main carer) who is slightly older than him. His mobility and forgetfulness have recently become worse and within the last month we have employed a private carer to help come and get him out of bed/bathed 3x and latterly 5x a week.

    Today, he could not get out of bed at all, and had not only wet but also soiled himself (pretty badly). Mum eventually called 111 and an ambulance crew turned up to help. By this time, I had arrived. It took three paramedics to get Dad up - he was complaining of excruciating pain in his back/leg - then clean him, and then as they were putting him in new pants and pad, he soiled himself again, right into in the paramedic's hands :eek:. Pattern repeated itself over the 1 1/2 hours they were there before they took him to hospital.

    Roll on 9 hours, during which time on each occasion, I tried to raise him to a sitting position for a drink, he has literally screamed in pain, complaining of agony in his back... I quite thought the cancer must have metastasised into his spine.

    Eventually the Dr. arrived, and I explained all the problems/background out of Dad's earshot. We return to his bedside to find him soaked in urine and clearly upset about being seen by the Dr in such a state. However, when the Dr raises his bed and asks him to lean forward, he does so without much demur and when she prods his back he says he has no pain...? So after the Dr left, I was able to come home and have left him there for the night.


    Mum is going to drop dead of fatigue and stress if this goes on. She is 86 too and completely exhausted. We are told that the issues are normal progression of dementia, but this double incontinence and 'pain' is new :-(

    It's got the point that she can no longer cope. And I have never seen so much poo and sheer mess before. I hardly knew where to begin cleaning it up.

    On our way to the hospital, the senior paramedic told me that we should refuse to have him home until we have had his needs properly assessed and that we should insist they are classified as medical needs (of course related to dementia) that come under NHS budget and not social services needs which my parents will be expected to pay for (having lived frugal lives and having saved, they have funds that exclude them from means tested benefits).

    This sounds like a minefield, and we need some help to guide us through things before my mum ends up with a stroke herself, or having a nervous breakdown.

    Can I/my mother refuse to accept him to be returned to the house? (I and my 3x brothers have Lasting Power of Attorney for him). If so, are the health authority obliged to find him respite care? And if so, can we be made to pay for it?

    I don't want to sound mean or callous, but if he was in his former state of mind, Dad would be furious to think he was putting mum's health at risk, or indeed, that we were paying unnecessarily for something that should be provided for him on the basis of health requirements (rather than a social service type need - IYKWIM).

    So sorry for the long post. Today, well... yesterday, has been a nightmare... this has been a long time coming, but mum just can't cope anymore - I don't live with them and today's events have left me wondering where to turn.. It's 1.40 am but I keep going over things again and again in my mind, and can't sleep.

    Please, can anyone help?
  2. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    Sorry but idk UK law or the minefield patch. But it seems that senior paramedic is right. Your mother need help or she can't care properly to your dad.

    As he has cancer, maybe there is another patch than SS
  3. Forestridge

    Forestridge Registered User

    Feb 10, 2013
    So sorry you are all going through this. I believe your Mum can refuse to have him home. Is the LPA for Health and Welfare? If so then as long as your Dad has lost the capacity to make decisions for himself and it sounds as if he has from your post,then you and your Brothers need consulting regarding Best Interest Decisions.

    Your Dad's needs need assessment under the NHS Continuing Health Care framework, which is what the Paramedic was referring to. It is notoriously difficult to get this so you need to be firm. I think in your position I would be saying to the Hospital Social Worker that your Father's care needs are too great for your Mother to cope with and you feel that she is at risk of imminent Carer Breakdown and to return him home constitutes a safeguarding issue as he is a vulnerable adult and that they have a duty of care to your Mother as well as your Father plus that you want him assessed for CHC.
  4. Feline

    Feline Registered User

    Oct 25, 2012
    East Devon
    I think Forestridge has managed to put it in a nutshell and I totally agree. If you can get an assessment, make sure every little detail you can think of is included, regarding how he is at home and how much is done for him. There is a Check list which you can look at,to see what is required for continuing health care funding. I think you can access it online probably under CHC or ask your community mental health nurse.
    Good luck

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