So alone

Five weeks ago my mum was given a few months to live. Last week she was actively dying.. I moved in to help her and plug the gaps in care. She suddenly is “ok” unable to get out of bed but can mobilise to the commode. Driver is going and she’s going onto patches. So now my issue is I’m kind of stuck   it could be weeks/months I’m here. She will not leave her home refusing hospice. I have to call daily for “night sitters” who only come 10-6. So I’m still surviving on 6 hours and caring all day. So my question is.. how long does very advanced lung cancer really take? Am I facing months of limbo   and please don’t suggest Mc Milan they have been shocking! ( I’m UK btw)

I’d like to add I feel horrendously guilty for feeling this way… but I just feel so unsupported. There is no-one else 

  • And no care for night yesterday or tonight :( 

  • How awful for you x Try giving Maggie’s a call x

  • Hi Seedess,

    This doesn't sound right. I am so sorry to hear of your situation. Has your mum been supplied with a hospital bed? She should also be given incontinence pads, build up drinks and puddings and other accessories, which might make her life - and yours, easier. As someone with a terminal diagnosis, she should be eligible for someone from Marie-Curie to help and support her. They can also provide "night sitters". I am upset to hear that you have had a bad experience with Macmillan, but there are lots of other cancer charities to turn to. You might also be able to arrange some day-time care via her GP or social worker. If she hasn't got a social worker, the hospital could put her in touch.

    This is a lot to deal with on your own, so please ask the hospital or your GP for help. Your mum should also be entitled to certain non-means tested benefits. Is there an information centre in her hospital? People there can usually advise of what's available, as can Macmillan.

    Have you asked her consultant how long she is likely to live? This is, to some extent a "guesstimate", as people can outlive these estimates by much longer in some cases. I sincerely hope that you can access some help from some of these sources.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi so sorry I couldn’t acsess the forum.

    Well my mum is still with us.. she is bedbound and no we still have no real support. Marie curie don’t cover here. I had to return home in January as tbh I couldn’t cope anymore. and I have work bills and a disabled child. She has carers twice a day and that’s it. All self funded. GP just ups meds when pain gets more.for Dying at home the system is awful. Medications taking weeks to be prescribed in the mean time calling nurses for pain relief and waiting up to three hours for them to arrive. It’s no way to die.. stuck in bed with just a TV for company. But she refuses hospice. And is classed as having capacity. Calling help lines doesn’t really change anything and our cancer charity don’t want to know unless she is actively dying. So as cruel as it seems I do hope we haven’t another 6 months of this. 

  • Thankyou for your reply Jolimine 

    she was given “a few weeks” in oct 

    how are you? I do hope things are going ok. X