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I’m scared

4 May 2019 23:28

ive posted a couple of times on here, been on a really fast punch in the face rollercoaster. Mum diagnosed with lung cancer brain mets jan 22 after previously being well. Told curative aim with lung resection and steriotactic radiotherapy to brain. Fast forward to now... mums had both and pneumonia and now in hospital unable to move practically without having a seizure. Had a mri and the original tumour is now larger and more swelling so back on mega strength dexamethasone steroids to try and reduce swelling and another consultation on Tuesday. My questions are how will I cope looking after her at home? I’ve quit my job but have children ... for past few months since diagnosis I sleep at her house go home 6am to see to children before school and so dad can go to work then go back at 9 am after school run, school run again at three, stay with boys until 7 then all over again. This has worked out ok until now having seizures I don’t think it will be viable to leave her? What if she has a seizure? We have a fall bracelet for a call out company. I’m just not sure that’s ok. She’s not palliative so don’t receive help from Macmillan but she’s too poorly for re ablement package from hospital... I’m lost... and wondering how the hell we will manage when she gets home! 

I’m scared

4 May 2019 23:35 in response to Tillyj

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.

I’m scared

4 May 2019 23:53 in response to Tillyj

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 

 

I’m scared

5 May 2019 07:39 in response to Ginpo

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

I’m scared

5 May 2019 08:05 in response to Tillyj

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. 

I’m scared

9 May 2019 22:53 in response to Billygoat

Thank you for your support x

I’m scared

10 May 2019 07:21 in response to Tillyj

Please let us know how things are going good luck, 

Billy