What to expect and ask for in palliative care

  • Posts: 1
    28/02/2018  22:13

    Thank you for accepting my registration for the forum.


    I have a question about the 'palliative care' my mum is currently receiving in a nursing home. I hope someone can advise us.


    My mum (who has terminal bowel cancer, dementia and several other age-related conditions) stopped communicating and eating/drinking four days ago. She was seen by a GP, who prescribed morphine patches as she seemed to be in some distress (groaning, gritting her teeth and moving her hands around). Since then she seems to be in a semi-conscious state.


    We do not know what we should be doing, or asking the staff to do, now that my mum has reached this stage. We realise she may die in the next few days, but the only care she is receiving is a nurse giving morphine by mouth or lately using a patch, and carers checking every so often to see whether she is still breathing.


    We are not sure whether this is sufficient to keep my poor mum comfortable, and now that she is heavily sedated it is impossible to tell. For example, should we be checking her hydration, or moistening her lips? Should she be turned? Should we try and communicate with her? We are afraid if we rouse her she will be in even more pain. Should we stay overnight at the care home so we can be there in case she does wake up?


    Please help. We are at a loss, and the staff at the care home just keep saying it is 'up to us' and do not have any specific guidance for us. But we have never been with someone who is dying before so we don't know what to do for the best. We feel as if we are just sitting here and waiting for her to die, but not doing anything useful to ease her passage. She is so dearly loved by all of her daughters, and we can't bear to think we aren't doing everything we can to help her.


    Thank you.

  • Posts: 229
    01/03/2018  18:25

    Hi Deby,

     

    I’m sorry to read about your beloved mum. Being with a loved one who is dying can bring with it so many emotions and not knowing what to expect can heighten our distress. Whilst we are not nurses here on the Support Line we do have some information that I hope will be of use to you and your sisters.

     

    You mention that your mum is no longer eating and drinking. As someone’s body slows down their need to eat and drink may well lessen. It may cause them discomfort and it can become harder for them to swallow. The GP can decide whether a person needs extra fluids and can discuss any concerns that you have about hydration. If you feel that your mum’s mouth and lips are becoming dry then the nurses caring for her can show you how to moisten them or attend to this for your mum.

     

    As someone nears the end of their life they can sleep more often and for longer. Without rousing her talking gently to your mum might be a comfort to her and to you as a family. Holding a loved one’s hand may make them feel safe and reassured. As well as sleeping for longer you may notice that if your mum does wake she may seem distant and drowsy. Whether to stay overnight is a personal decision, what’s important is to do what you feel comfortable with. You and your sisters may each make a different choice about this.

     

    You may find our booklet ‘what to expect at the end of someone’s life’ helpful. It can be downloaded from this link –

    https://www.mariecurie.org.uk/help/support/publications/all/expect-at-end-of-life

     

    If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat:

    https://www.mariecurie.org.uk/help/support/marie-curie-support-line


    Best Wishes

     

    Clare

     

    Marie Curie Support Line

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