Advice needed please - Leaving hospital care

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Hi everyone

I am really looking for some advice as I am feeling lost and broken. My Dads health rapidly declined over the last month and I took him into A and E last week. He has been diagnosed with a 7cm Tumour on his right temporal lobe.

Physically he is not to bad but that is the problem, his vision is very poor and his mental state is terrible. He is confused, upset, having halucinations and is very paranoid. He needs help with everything but because he can still walk and is not incontinent I feel the doctors are just passing him of as being OK to go home. I moved him into our house three days before I took him to hospital and the level of care he needs is too much for us. He needs someone with him 24hrs a day to make sure he is safe ( example - we came down in the morning to the house being turned upside down, Dad wandering around with no pants on, cooking oil bottle open which I think he had been drinking, excrement all over the downstairs bathroom and he was talking about the people who had been in the house that night messing with the wires and refusing to speak to him, no one was there).

I have said that I feel he is not safe to return home and would like him to be placed in care, however with his diagnosis I don't know what I need to push for. Does he need nursing care? Should he be in a hospice? We are waiting for his PAT scan which I hope will give us a prognosis but I can't stand leaving him in hospital, he is crying and so lost and depressed. He thinks he's been put in prison because he's not allowed to go outside, which is where he spent most of his day every day.

I just don't know what to do.

Thanks for any advice you can give.

  • Hi Feelinglost24

    a warm welcome to the group. So sorry to hear about all that is going on with your dad.

    Please take this one step at a time. Hard as it is to see him distressed, while he is in hospital at least you know he's safe and that there's someone there 24/7. Wait and see what the scan shows then take it from there.  One you have the scan results the doctors will talk you through the potential treatment options and what you can expect. They should also discuss the practical day to day care options if they feel its safe to let him come home.

    I appreciate that this isn't much comfort at this point. It's hard not to fret about the what ifs but seriously focus on the facts as you have been told them so far.

    I'm no expert here but it is likely that the tumour is causing a lot of the behavioural issues and if it was removed/treated those symptoms may well regress. 

    My husband was diagnosed with a stage 4 brain tumour in Sept 2020 so I can empathise with what you are going through. The majority of his symptoms are cognitive and its like dealing with an over tired spoiled toddler a lot the time now. It tales time but you find a mindset where you accept that the person you know and love is broken and that the person you interact with day in day out is the broken version. It isn't easy but it helps me to think of G as broken and it makes the erratic behaviour a little easier to accept.

    This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and someone to offer that virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong. Please take care of yourself here too. This emotional rollercoaster is a tough ride.

    Love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thankyou for your response. It really has helped me get my head around things and focus on the positives in a situation I have no control over. I will take your advice and contact the people you have said. 

    I hope you and your husband are doing as well as you can be. You are amazing to be helping others at the same time. Xx