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Thread: End of life palliative care

  1. #1
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    End of life palliative care

    My father is currently in the High Dependency Unit in hospital in the latter stages of MND (he also contracted pneumonia a week ago) and we have been told that he has a very short time left with us. The hospital seems very keen to discharge him either home or to a nursing home. This is despite the consultant telling us on Friday that he was very poorly and there would be no pressure on us to take him home,

    My mother feels she will be letting him down if he goes into a nursing home (he is 65) but does not feel confident in having him at home without help, as much as we would all love him to spend his final time at home. He needs his breathing machine checking every hour day and night and his feeding tube kept clean as well as his PJs changing regularly. He does have local authority carers coming in 4 times a day at irregular times but they are not MND specialists. The MND team and the hospital have said that there is no 24 care available.

    Does anybody have any experiences that they could share or suggestions as to who to talk to please?

    All help much appreciated!

    Thank you.

  2. #2
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    Quote Originally Posted by arthompson1975 View Post
    My father is currently in the High Dependency Unit in hospital in the latter stages of MND (he also contracted pneumonia a week ago) and we have been told that he has a very short time left with us. The hospital seems very keen to discharge him either home or to a nursing home. This is despite the consultant telling us on Friday that he was very poorly and there would be no pressure on us to take him home,

    My mother feels she will be letting him down if he goes into a nursing home (he is 65) but does not feel confident in having him at home without help, as much as we would all love him to spend his final time at home. He needs his breathing machine checking every hour day and night and his feeding tube kept clean as well as his PJs changing regularly. He does have local authority carers coming in 4 times a day at irregular times but they are not MND specialists. The MND team and the hospital have said that there is no 24 care available.

    Does anybody have any experiences that they could share or suggestions as to who to talk to please?

    All help much appreciated!

    Thank you.
    Hi there,

    Welcome to the forum.

    I'd strongly suggest calling MND Connect. The team will be able to guide you through the next few weeks and advise you on the best care for your Father.

    You can call Connect on 08457 626262 or email mndconnect@mndassociation.org. Calls are charged at a local rate.

    Connect is available 9am to 5pm and 7pm to 10.30pm Mondays to Fridays.

    Best wishes,

    Andrew

  3. #3
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    Thank you Andrew. Much appreciated. Will do.

    Andy

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    Not a problem Andy.

    The forum community will also be able to offer some great support and information.

    Best wishes,

    Andrew

  5. #5
    Forum Member Lolly's Avatar
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    Hello and welcome. Im so so sorry you have to be here.

    I think, there is no reason why first class care cant be provided at home with the right support, in the same way as it could be offered in a nursing home. You just need a good multidisciplinary team and carers into the home to help you.

    You do say you have been told theres not much time left and i dont quite understand if you mean hours or days or months. If hours or days, a hospice will be able to deal with end of life issues with more skill than a hospital.

    A hospice as you know is very different from a nursing home.

    My mum was in the process of being transferred to a hospice from hospital but died in hospital an hour before the ambulance came to transfer her to the hospice. My dad and I were at her bedside and she died in my arms.

    I'm so sorry, I understand your pain. I understand how your mum feels but home care is very different to end of life care. A specialist care at a hospice will offer will make him more comfortable at the very end and she and you can be there at the bedside, also participating in the care but also surrounding him with love. They will be sensitive and supportive. Xxx
    Last edited by Lolly; 8th April 2013 at 22:56.

  6. #6
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    Thank you for taking the time to respond Lolly. It is much appreciated. I am very sorry to hear about your mum. I am sure that she (and you and your dad) drew great comfort from you being with her.

    We think it is days or weeks at the outside. My dad very much wants to be at home and my mum feels she would be letting him down if she didn't agree. Between us, I think we have done a good job of managing my dad's expectations and have explained that we will need lots of support. We won't get 24 hour care all week as they say it is not available but should get care some nights. The other nights we will see how it goes with suction, Nippy machine and meds being delivered by us.

    If it doesn't work out, we will look further into a hospice or nursing home but at this stage I think we need to give it a try. It will take a few days to get everything in place first.

    Thank you again for taking the time to reply and sorry for your loss.

    Andy
    x

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