Feels like very little support

My mum has terminal breast cancer and was told about a month ago she'd have around 1-3 months left. When deciding to "die at home" (which she is adamant about), we were told that the palliative team would support and oversee everything. My dad is of ill health too so we were grateful and reliant on this.

Fast forward a few weeks and things seem to be deteriorating fast. My poor, wonderful mum has agonising pain popping up in different places each week, new tumour lumps and can now barely move in the last couple of days. The nurses seem to just pop in once a day, look sympathetic and give her some morphine then go away again. I know they're incredibly busy and I get that but her pain hardly ever seems to be managed whatever we say or do. 

Should we expect that she just dies in awful pain? Are we supposed to just watch he suffer and struggle on our own to care for her? I have my own small family and am round there as often as possible because my dad is not emotionally or physically coping with the care. The nurses and palliative team are all very aware of this but there doesn't seem to be any support or time to care that much?

 

Is there anything I can do ? Any experiences or advice would be amazing right now as things are just getting so hard for her x

  • I'm so sorry you're going through this. Does your mum have a Macmillan nurse you could contact? Or you could try the community care coordinator (for us we contact them through our GP surgery but I'm not sure if that's standard, although it's a good place to start). The local hospice might be able to advise you? 

  • I'm really sorry to hear about your mum. I totally understand what you're going through, and nothing can prepare you for the absolute heartbreak of watching go through this horrible time.

    I know you have said your mum would like to be at home for her death. Would you consider contacting a local hospice if her pain isn't being managed? I know it will be hard to go against what she's wished, but from having my mum at home for a few days before she was readmitted to hospital with basically my family doing everything, and her pain not being managed, the consultant has told us my mum will be much more comfortable being properly cared for by professionals all the time. It's just something to think about as her last days will be relatively comfortable, and you will be able to spend as much time as you can just being with her.

    I wish you all the best, and lots of love. I really understand how painful this is.

  • Hi,

    If home care isn’t working you should ask your Mum if she would reconsider the hospice option. At least there she’d have clinical support 24/7 and you could concentrate on giving emotional support. 

    Some hospices offer a “hospice at home service” - depending on where you live MacMillans, Marie Curie and Maggies might be able to help. My own families experience when my Mum died at home from cancer taught us that support is there but you really have to fight to get it. The last thing we needed at the time was to fight and complain and pester but that was the harsh reality. Your GP and named nurse should help but frankly whilst many are brilliant and others are worse than useless!

     

    Best wishes

    Dave