Don’t know what to do

Hi and a warm welcome to the online community

I'm very sorry to read that your mum has been diagnosed with a glioblastoma and that only palliative care is available for her. This must be an incredibly tough time for you and it's natural to worry that you're doing the right things.

I hope you don't mind me suggesting that you also join and post in the supporting someone with incurable cancer group as there you'll connect with others who are caring for a loved one with an incurable diagnosis. I hope you'll find it a good place to discuss your emotions as well as practical issues about palliative care.

If you think this might be helpful then clicking on the link I've created will take you straight there where you just need to join and post in the same way as you did here.

Have you asked your mum's palliative care team about whether it's best to leave her to sleep in her bed or whether you should encourage her to get up? They should be able to give you an informed answer based on what they know about your mum.

Sending a supportive ((hug))

My Valerie has Brain Cancer and now sleeps more than 23 hours a day.

She was on 8 mg of Dexamethasone and that is being reduced, currently on 2 mg for 3 days then nothing. 

It's hard, lonely and scary with little practical help from anyone.

I would wake her up for the meds.

Best wishes to you and your Mum.

Hi Larry 

thanjyou for your reply ,sorry to hear about Valerie, my thoughts are with you . My mother has had a few late getting up days, but most days she gets up eats breakfast then sleeps all day, I wake her to take her medication and to give her food, and she falls back to sleep, I then wake her to go to bed at 10. Did Valerie go through this or did she just start staying in bed. My mums on 6mg Dexamethasone, which will be reduced to 4 next week, did you find the reduced dosages made the sleeping worse or was Valerie sleeping like t hi s before the reduction ? . Does she have any other symptoms or is it just the sleeping. I hope you don’t mind me asking, just trying to get a picture of what to expect 

Valerie has metastasized breast cancer in the brain, she first got the cancer 6 years ago.

So different to your Mum I think.

Seven months ago she fell outside, then her eye lid stayed shut.

It was the optician who sent her to A and E where the Brain Cancer was found in her brain stem, later found all over her brain.

She then became paralyzed on her right side, arm and leg.

So she has been mostly bedbound for 3 months.

She now sleeps 23 hours a day.

Her sleeping has gradually increased over time.

I don't think her reduced Dexamethasone has made her sleep more, but I'm no expert.

The Dexamethasone has given her a great appetite, she eats everything I give her. She has "moon face" and is terribly bloated in her stomach. This upsets her a great deal.

She takes Oramorph for the pain and that makes her constipated which was painful until the district nurse prescribed Movicol.

I hope that helps you and your Mum some.

I hope you can look after yourself, caring for a loved one is the hardest job in the world.