Hi, 

This is the first time of posting here, and I'm not really sure what advice I am looking for, but I just feel like none of the professionals we are dealing with (Doctors, Social Services etc) feel there is any need / rush to help and I feel like there is so much more I should be doing to advocate for her. 

Background info .... My wonderful Mum (76) has lived alone for 20+ years and has been very happily independent all of her life. This time last year, she was travelling on holiday alone, she was very active with sports and walking regularly, she had a very busy social life, participating in lots of clubs and groups and keeping in touch with a large circle of friends as well as doing everything for herself - shopping, cooking, driving etc. 

She was diagnosed with stage 4 metastatic breast cancer just before Christmas. This was devastating for the whole family as Mum really is the glue that holds us all together. In January we had her first proper oncology appointment to discuss the findings from the scans and possible treatment options. They told us that it was advanced, it had spread to lymph nodes, neck, chest wall, as well as a tumour above her eye. At this appointment we were told that her care would be palliative and they would only be looking to control the cancer rather than cure it. They offered hormone therapy and told us that for some people this can be successful for several years. They offered her another medication to make the hormone therapy work longer, but she turned this down as the list of side effects was too extreme for her to feel she could cope with.

And that was the day that everything changed. Between then and now, what began as occasional anxiety, grew so severe that within 6 weeks or so, she could not manage to be left on her own, even for a short time. The care provision from Social Services was 2 carers a day, and family and friends were filling the gaps the rest of the time, however this was not sustainable. In the last 2 - 3 weeks, Mum has developed dementia type symptoms so severe that my brother and I have had to arrange a respite break in a care home for her as she really needs 24/7 care. 

The problem I am having is that the Doctors / Nurses / Social Services don't seem to be in any rush to help her / us in finding out why things have declined so rapidly or to do anything to help her back to independence (if that is even possible!).

The last oncology appointment in March, they said there was no sign of any cancer spread and they are not due to see her again until August. All they will say is that they don't think the cancer or medication is causing it. We are beginning to suspect the cancer might well have travelled to her brain and that it just doesn't show on a CT scan. This is what happened to her Mum. No amount of insisting seems to get them to change their mind about looking further into this. The oncologist won't give us any indication of prognosis.

The doctor thinks her memory issues are caused mostly by the anxiety so will not do a cognitive assessment for her to start looking into whether or not it could be Dementia \ Delirium or some other condition causing it. She has refused to see her in person and has just referred to CMHT for a Mental Health assessment. This however can take up to 28 days!

Social Services have had her on the list for a needs assessment since early January and they still haven't even allocated her a social worker! So they are no help either. 

We are in such a state of limbo and no-one seems to be doing anything and it is just heart-breaking to stand by and watch her suffering in such a state of turmoil. She barely eats or drinks now, and if she does, its very small bites before she feels full. She is confused to the point she can't tell the time of day, and has developed a lot of fears about the care she is receiving (They have moved her room, she can't talk because they are all listening to her, she will be punished for not eating enough, they lock her outside, her clothes don't belong to her etc) 

I swing between thinking the cancer is under control so she could come out the other side of this mental decline and be fine for years to come, to then thinking what if things are far worse than we realise, they told us the cancer will be in her bloodstream so it could have gone to her brain, and then I  feel terrified that she might not have much time left with us. I don't want to look back and wonder how I didn't see what was staring me in the face. She has lost a lot of weight, she has become frail and has aged about 10 years in a matter of months. 

Thank you to anyone that has made it this far. I'm sorry as I know this is such a difficult subject, but any advice at all would be appreciated. If I knew she had a short time left, then I would absolutely take an extended break from work, and put my life on hold to be there are support her. But that is not possible (Full time work, kids etc) if she has years left. I know no-one can ever tell, but I wonder if this sort of dramatic decline has been seen by anyone else? 

My heart goes out to anyone else who is in a similar situation, or has been through it. It is truly awful, and not something I feel even remotely able to cope with.