Advice for night support

  • 4 replies
  • 34 subscribers

Hello, I’m really desperate for some help and I don’t know where else to go or who to ask.  My mum has been diagnosed with a right frontal lobe secondary brain tumour.  She’s had the surgery and we’re waiting for a plan and prognosis.  She has suffered with frequent urination throughout the night since chemo damaged her kidneys 3 years ago.

As the tumour is frontal lobe it affects mum’s ability to initiate tasks, and process.  She can get onto the commode/toilet independently, but doesn’t get off - no initiative to do so.  She’d sit there for 8 hours!  So I’m awake all night as she uses the commode 3 or 4 times a night. She’s falls straight back to sleep again, but I’m left awake waiting for her next waking.

I’ve got primary aged twins, so my days are busy.  Mum can’t be left as she’s still gets muddled, and the kids still need looking after.  I am already struggling financially, and can’t afford to pay for help.  Does anyone have suggestions- I’m so exhausted.  Thanks in advance.

  • This page says you should be eligible for home help.

    A Marie Curie nurse maybe ?

  • Thanks for your reply.  Mum isn’t end of life, yet.  She just lacks cognition so it appears the sitting services aren’t available to her.  I’ve spoken to macmillan, brain tumour charity, the hospital discharge team, community therapist.  They have offered to send someone in to help mum have a wash in the morning for four weeks.  Which I’m very grateful for, but I’m very short on sleep.  I probably managed 3 hours last night, in which time mum had woken, sat on the commode with the seat up, so she was perched on the bucket rim.  I didn’t hear her wake, and she didn’t know how long she’d been there - I felt so awful Disappointed   I think I’ve called everyone I can think of, and have been told I’ll need to pay for care.  I would if I could.  It’s really hard isn’t it. 

  • Hi JanB

    a warm welcome to the group. Oh your poor mum! I really feel for you here.

    I see from your reply below that you've reached out through various channels. I assume you have spoken to your mum's gp too.  I see Mat in Kent has already suggested Marie Curie but another suggestion would be Maggie's. Maggie's – everyone's home of cancer care (

    It is perhaps worth a call to the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    I hope you get some help soon.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you wee me.  I will try Maggies tomorrow.  I really want to try and keep my mum at home.