Also, what do Marie curie nurses do? How do I apply to see one of those? My dad was terminal when he had cancer (lost may last year ) and my mum had lots of support from district and Macmillan nurses. What respite is available if any! Does anyone know of any decent electric wheelchairs ans mobility is a real issue for us now... I am so frightened I haven’t got time to feel emotions is this normal. I’m living it without any feeling most of the time, well apart from fear.

Blimey Tilly you sound exhausted. I’m sure everyone has access to a McMillan nurse if you have cancer & Marie Curie are similar . Maybe tomorrow when you find some time write all your concerns down & ring them . Also you must make them aware that you yourself have a young family and she will be going home to an empty house . Perhaps also it might be worth contacting social services and let them know what’s going on as you will need help as you can’t be there 24/7 . I’m Sure Mcmillian will be able to help with your concerns .  Look after yourself too Tilly .  Hugs Ginny x x 

Thank you, she does have a Macmillan nurse, but she explained (she calls us once a week) that because mum was still as curative( everything’s happened so fast) she couldn’t access physio or anything as my dad did because she’s not palliative. She was a healthy woman who walked into there hospital with an ongoing headache, so they threw everything at her with the hope to cure and we started the rollercoaster.since then in three months she has rapidly declined, she now can’t walk without having a seizure, consultant for brain said she is highly sensitive to the steroids for swelling on brain and they have wasted her muscles and made her body swelll and her face so that she is unrecognisable, so been on a reducing dose, now swelling again she’s back upto 16mg. I don’t want her to go into a home, we might get a palliative diagnosis on Tuesday and then be entitled to extra support. Mums on her own 6-9 on a morning and 3-7 on an evening. That’s a long time if she has a seizure!  Social worker did come out after she was discharged from hospital and assessed her said she needed care 4 times a day but two hours later called to say the enablement team thought mums needs were too severe as she didn’t think she would be better in six weeks... too poorly for social care... not poorly enough for Macmillan care with mums brain she is confused, not retaining any information she’s fully with it, it’s like she’s forgotten cognitive things like how to move legs or when to sit stand without prompts. She knows all that’s happening in our family and past present that way. So I would really like a private carer, where would I go about finding someone to just be there for those hours, someone consistent? X thanks for your replyxxx I know I need to look after myself but it’s not a luxury I can afford at the moment. I can only concentrate on full care for my mum she is my world and I am not letting her down the only time she has truest need my help. She couldn’t possibly do this any of it herself xxx

Sorry you're having so many problems see if you can find no for adult social care, or wellbeing hub I think it's in most areas it's orquard not knowing where you are. Or try adult care. They should all be on Internet, good luck. 

Billy

P.s to get Marie curie nurses I think you have to go through a doctor or someone High up in medicine, again good luck. 

Thank you for your support x

Please let us know how things are going good luck, 

Billy