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My mum has been battling stage IV ovarian cancer for 2 and a half years. We knew the Cancer had spread to her stomach and lungs. She was due to start her 3rd cycle of chemo in Jan but she has been suffering from confusion and anxiety and has been unfit to treat. She is now in hospital with a pleural effusion and is on oxygen. Yesterday the medical team asked me to agree to a DNR and seemed to give the impression that mum was near the end. To be honest I don't really know where we are up to and I know my Dad is not in this place. No one seems to give you a straight answer which makes it so hard to make decisions. Should she come home, does she need care, can my dad cope, how long will he need to cope? What are the questions I need to be asking and who do I speak to? Should I go to the GP or her consultant although he hasn't seen mum for months.
I am so sorry to read what's happening to your mum. I must say I read your post with incredulity. It sounds as though there is no one in charge. It must be incredibly distressing for you all.
I really do not feel qualified to give advice but here are my thoughts.
Doctors and nurses are notoriously ill-equipped for these end of life discussions - if that is what is going on. So in a sense, it is up to you and your dad and start them. I think your questions are spot on:
- is my mum near the end?
- if so, should she come home or move to a hospice
- again, if so, how do we make that happen?
- is there a palliative care team at the hospital or in the community? If so, how do we get in touch?
- what support would there be for my dad if she did come home?
If it were me in your shoes, I would call everyone, starting with the ward sister (who will be able to make sure you can speak to the consultant) and GP. I'd also give the Macmillan helpline a call (numbers and opening hours below) and the Marie Curie Cancer Care support line.
Here is a link to a booklet from the Macmillan website on End of Life Care that may help you get your thoughts in order. This is the blurb: "This booklet explains what happens at the end of life and how to plan for it. It gives information about issues such as choosing where to be looked after, sorting out unfinished business, getting financial help, who can help if you're being cared for at home and what to expect in the last few days of life. It also has information for relatives and friends involved in your care. The booklet is jointly produced with Marie Curie Cancer Care."
I really hope this is some small help. I will be thinking of you.
Love and hugs
Dalanis post covers everything, really but I would just like to add one thing.
I wonder if the medics are a bit confused about whom they should be speaking to? Your father would be the natural next of kin whom they would expect to be making decisions, but it sounds as if he might not be taking an active role?
Could your mother tell the staff to talk to you as the main contact, or if she is too ill, could you and your father make this known to them? I think that then you might find it easier to get things moving, although as everyone else will tell you, it is well nigh impossible for anyone to give you a definite timescale
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