We finally have a diagnosis & mum has myeloma which is bone marrow cancer. Strangely my sister and I both have friends with the same thing so we know mum couldn’t stand the treatment. Today at the hospital we had a discussion wiith Dr & OT to arrange an appointment to book a discussion to book a meeting for further discussion! Even mum had to laugh!
Anyway, my question is, if she comes home with carers four times a day, I think an overnight Marie Curie nurse would be really helpful and I wonder if anyone has any experience of them?
Can we discuss making an appointment to arrange a meeting to discuss the discussion?
Or could you just let me know what you think?
I’m sorry to hear about your Mother’s diagnosis. It’s a lot to process. Are you aware of Maggies? Our story | Maggie's When my Mum was diagnosed with 2 separate primary cancers I found Maggies through a friend. They are well connected in local areas re. support, nurse care, information etc.
I’m sharing that first because Marie-curie nurses are NOT available everywhere in the UK, nor are they ‘on-demand’ due to limited resources. I have heard good things about them but only in certain areas and mainly London boroughs.
Trained healthcare nurses, for overnight care are rarer than TV adverts lead us to think (sorry for the reality check). Oftentimes, trained nurse care - in my experience is associated more with palliative/end-of-life care, which was what I organised for my Dad through a hospice at-home charity.
BUT Maggies should be able to give you more info, share their thoughts on Marie-Curie, or offer alternative options. Just call your nearest one.
hope that helps.
I thought it was too good to be true! Thanks for the reality check. I have looked up ‘Maggies’ and they sound wonderful but sadly not near us. Thanks for your advice though. At least I now have more realistic ideas.
Hi Jackie, I’d highly recommend giving Maggies a call - they are wonderful and could suggest options. They can’t supply support themselves but have good networks.
I hope you have a good charity or agencies in your area. There are some national agencies that provide live-in-the-home care - E.g. someone on the forum recommended https://www.country-cousins.co.uk/ - setting this up is something I’m not familiar with. Organising agency support can be time & energy-consuming. As I mentioned less likely to be registered nurses, but there are some good healthcare assistants. Defining tasks, and needs is impt as any agency will require a ‘needs assessment’ as you probably already know.
In the New Forest we are very lucky to have the Oakhaven Hospice, which I supported from the beginning. They have a range of services and were wonderful when dad had cancer. They supported him in the day hospital, the care at home service, and was only admitted in his last week. Before agreeing to anything, talk to your GP service or similar about what is actually available in your town. Personally, I think I’d like to spend my last days in the hospice with professional nursing staff so that my family could come and visit me, then go back home (son lives with me) to a completely normal house for quiet and reflection. A hospice always has an extra pair of hands available, morphine pumps, etc. so there is no delay in providing relief. No mountain of specialist equipment to go back either.
Yes, I lived in the New Forest and Oakhaven Hospice is wonderful. I moved away in March 2020 (remember that) to look after my mum in lockdown and the rest of the story writes itself!
Our local hospice no longer does respite care as they don’t have the capacity. They only take patients in the last couple of weeks of life.
No chance of speaking to the GP.
We were supposed to have a meeting at the hospital today to discuss an appointment to arrange a meeting for further discussion but of course it didn’t happen.
My original question about Marie Curie was because it seemed like the ideal solution but I now realise how hard we’ll have to fight to get that.
Mum wants to come home, I’m happy to have her home, the carers are poised to resume their care, the hospital wants their bed back. What’s the problem?!?
Hi Jackie - sorry to hear about your Mum. Myeloma is pretty nasty, but from what I remember it very much depends on what stage it’s reached as to what options are available. My Uncle had it for over 10 years, but it was his heart that gave out - the cancer was not massively advanced. In other cases caught much later, the outcome was not so good.
Right now the important thing is to find out what they’re actually suggesting in terms of options, including care arrangements. And be very clear about what - if anything - you feel able and willing to do. Be very clear about that so that the options they offer actually meet that.