Feel like mum isn't getting enough support

Mum was diagnosed with lung cancer in November last year she has a massive lung tumor. She caught covid at new year and beat it and we have managed to get her home she has carers and is now bedridden. I don't feel like we get much support the district nurses come in when necessary. She's only on paracetamol but they only think she has weeks. The family are falling out constantly about her care

  • Hi there ...

    Deff not right ... just paracetamol... I'd be strait on to G P .. Call Marie Currie ask their advice .. ask for district nurse to call .. tell them your not coping ... this is happening too often lately... you must feel like your banging your head on a wall ... and getting no where ...

    This is the time for the rest of the family to pull together ... stop disagreeing among your selfs   and try and sort it out ... with everyone having a say .. but no shouting ... I'm sure then you could all get something sorted .... good luck ... Chrissie x

  • She saids she's not in pain her bed sores are more of a problem to be honest. She is incontinent and that to is causing problems as there are no carers available at night and I'm afraid I just can't do the changing .

  • We are going through similar with my Mum, she has chosen to remain at home to be cared for by us family and the palliative care team. 

    I'm sorry to hear this, and feel for you that you are not getting enough support. 

    I can only suggest asking for more support for your mum from district nurses, Macmillan and palliative care team, currently my mum has 2 nurses come in to help with personal care, though myself and sisters are willing to do this also. As for changing an incontinent pad we were told that if the nurses were around at that time they would assist if we were unable to do it. I'm not a 100% sure if you could call on them to come out and help at anytime but certainly worth an ask. 

    If it's a case of not wanting to change your Mum due to feeling uncomfortable with doing so then discuss this with the care team, they should be able to advise you on your options. Personally for me I have no worries in doing this for my Mum but I know that's not the same for everyone else and hope that you can get the support you need in this department.

    I think everyone has their own ideas regarding caring for someone and how it should be done, if your Mum has the capacity to choose her care right now it may be a good idea to discuss these options with her. And also discuss that if she was to choose to be at home who would and could take on the care duty, it's not easy by stretch of the imagination but doable with the right care and support package.

    Realistically look at all options and how as a family you would cope with caring arrangements. Whatever you decide, I hope you get fully supported from your family and care team.

    Ask to chat to a GP or Macmillan nurse to discuss what to expect during this process and how to try and prepare for it. I know there are medications available to help with pain and agitation these would be administered by a nirse/doctor. 

    As a family we felt we had no support and felt that the specialists had just wrote her off basically due to the prognosis, it wasnt until I had a paramedic out in November that we started to get help and that is because I explained the situation and told them we were getting no where with anyone, no support or help from Macmillan,  GP etc , I complained a little and before I knew it we suddenly had an influx of help. Speak up, speak out and ask for the help and support you deserve.

    I hope the disagreements between family can be sorted, but if not try not to in your Mums presence.

    Good luck x