mums terminal cancer aged 90 also has Dementia

Can I just say that my concerns and unanswered questions have been ongoing way before corona virus and i would be interested in others comments.

Whilst i am aware my mum is dying and her wishes are to remain at home and under palliative care, and looked after by myself and my sister ( i previously a s/w) am amazed at the discordination of her care and management that quite frankly the GP did not intergrate more from actual diagnosis back in October!

If my mums illness was not so difficult to bear it would almost be farsical the lack of communication between the professionals i have found appaling and quite franklyhad i not kept them on their toes I would of been quite suicidal myself. I felt this as a s/w a few years before mum had signs of dementia and choose to give up my job to look after her as it was constant battle with manager to get in the most basic of care from budget restraints and most of my cases were safe guarding issues with care providers. Palliative staff have been great and i know they step in when mum is actual EOL and in meantime District nurses monitor yet any concerns or questions we have is ask her GP,? now with all due respect why is onus put on family to relay such information should the professional not ease the burden and family so that quality time is spent with mum rather than on endless phone calls. I do not let it be known my previous profession was as a s/w buy quite frankly at 58 if i was ever thinking of re registering that has been put to bed from the lack of care and co ordination with my mum. mY QUESTION IS MUM HAS STAGE 4 LUNG/LIVER (Metastic cancer) with possible spread to bones. Mum is in no pain and no cough but weight is now 34kg from a healthy 7 stone some 4 months ago. She is now hardly eating but still drinking but reports very tired and sleeps most of the time , but when awake still quite lucid. I cant seem to get an answer from professionals as to what way mum is likely to pass and yes before everyone jumps on the bandwagon that everyone has their own journey they must see people of my mums age, displaying symptoms and signs over their many years of experience to give some sort of insight?. I know all the signs of EOL and active dying and of course like everyone I would hope she passes peacefully, but it seems the whole subject discussion of death sems a taboo discussion with the so called professionals.? I may seem cinical but it is not wasted on me that whilst mum has moderate dementia they are quite happy to go with mums wishes of never wanting to go into hospital yet leave the difficult situation of telling mum how ill she is to us the family! The GP who visited to sign DNACR attempted a pathetic attempt to explain to my mother her situation  which left me flabighasted . My mum has capacity to understand and retain question that she is asked in present time. for them to tick their list and ensure she does not go to hospital or hospice yet pussyfoot around the more crucial/stressful times when family need more co ordinated support. I might add my mum has very limited time left and LPA or even drafting will can not be done and processed in this current situation with this virus. Can I have some thoughts from people on this forum as I say thank god mum has no airway/plural infusions nor pain, nor sickness she does not require anything other than parecetamol for occasional pain management though has oral morphine. I might add that I have formulated a complaing to mums family GP over a multitude of issues an mis communication from onset of her diagnosis in October 2019 and yet to have a response         

  • I noticed you haven't had a reply yet Snowpatrol so I just thought I'd include a link to the dying with cancer section on website as it has information on what signs to look out for as the time draws near.

    I hope this will help but if you want to discuss this with one of our cancer nurses you can give them a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Hopefully some of our members will pop by soon to offer you their thoughts on this as well.

    Best wishes to you all, 

    Steph, Cancer Chat Moderator

  • Hi there, so sorry that you are having a rough time of it.  I do feel your frustration.  My mother has terminal ovarian cancer, and the GP is not just hopeless, but she will not visit without considerable pressure being applied, and has a zero understanding of a patient's pain.  I've found some of her comments completely bewildering and lacking any cancer knowledge.  The hospice are moderately helpful but they promise a lot and deliver the minimum.  My mother wants to die at home, and she is frightened (as am I) about how she will die, and totally agree with you that no-one wants to talk about the relaties of the illness, it's almost as if it's a wait and see and we'll deal with it then approach.  I agree with you that they must have experience of similar scenarios where they could at least give some insight.  My greatest fear is that when the time does get short, we're going to be left high and dry to deal with care, other than pain medication.  We're having a meeting with a Macmillan nurse tomorrow to try and get further information.  I do feel your frustration, every step of the way I've had to fight to get people in the pallative care team to take her detoriating condition seriously, and it appears as there are family helping the dying person they are quite happy to abdicate their involvement.  It's not what any of us who are supporting loved ones should have to shoulder, and is not what you are told at the beginning of the process.  They haven't even sorted out my mothers living will plan that they promised to do a month ago.   I wish you all the best x