Hi,
My mother was diagnosed with stage 4 localised cancer last spring. At the time the doctor said the cancer was advanced but had not yet spread elsewhere. This diagnosis was a complete surprise.
Whilst working from home my sister and I initially provided full time care, as the Covid situation improved we were able to arrange carers four days a week and now provide cooking/cleaning/social support for her three days a week. We found the benefits system so confusing the carers are privately paid for.
My mother is a very awkward personality, has little faith in western medicine (hence the late diagnosis), wants company every single day (but only for an hour or so) and has alienated other family members by laying down strict rules about their visits. She had had chemo and radiotherapy but her tumour has only grown and she seems to be getting thinner, less mobile and more lethargic.
Since we cannot speak to the doctors directly we have to rely on her telling us what is going on but really have no clue. We know she has a palliative nurse but don’t know what this means. We also have no idea of the prognosis, yet we feel totally responsible for arranging her future care and accommodation. My sister and I are in our thirties and feel totally overwhelmed by the situation. I suppose I am asking for help and advice in terms of whether we can speak to the doctors ourselves or not, what kind of support is out there for mum, and whether there is any emotional or practical support for family/unpaid carers.
Thank you
Hi and a warm welcome to the Online Community but sorry that you needed to find us. I am also very sorry to hear about your mum and the challenges surrounding supporting her.
I have an appreciation of what you are dealing with as my 92 year old mum was totally independent and as much as we tried could not get her to take any in home support, she refused us the ability to talk with her medical team and also refused us the opportunity to set up legal control for her if and when she was not in the position to make her own decisions. She died back in November and fortunately did not suffer in any way.
The Community is organised into dedicated support groups so can I recommend you join our supportive Carers only Group as you will connect with others navigating the same journey supporting family and friends through their cancer journey.
Follow the link above then introduce yourself by putting up a ‘New Thread’, you could just copy and paste the text from this your first post. You can also join in with existing discussions by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listing ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
((hugs))
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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