Sleeping all the time

Hi Jess

Sorry to hear about your brother.

I lost my beloved husband in January this year. He was diagnosed with Glioblastoma in Nov 2024. They advised that my husband could not have Radiotherapy nor an operation to remove the tumours as the largest one was in his brain stem.

He opted for chemo, however by the time the biopsy results came back, he was too ill to receive the chemo.

My husband used to sleep upto 20 hours a day. I didn’t know if I should have woken him to feed him or not. The CNS told me to leave him as it was quite normal for a patient with a brain tumour to sleep for hours.

Everybody’s journey is different, but from my experience my husband did begin to sleep longer towards the end and eventually it got to the point where we were lucky if he opened his eyes for 10 minutes.

I’m sorry to be so blunt with you, but I wanted to be honest.

My thoughts are with you and your family. Sending you lots of hugs.

Dear Mrs Uni

Thanks for replying.  I am so very sad to hear your terrible news. My brother has always been very strong and independent, he said from the onset he would outlive the prognosis. He did have surgery and felt well and then it all fell apart.  One thing after another especially after radiotherapy and chemotherapy. He spent more time sleeping, eventually got admitted to hospital, they say ge sleeps most of the day. My feeling is that he's nearing the end of his journey, according to the oncologist as the radiotherapy had some effect on the tumour we could be looking at a year, we could be looking at a couple of months. 

I'm heartbroken, I find myself crying a lot of the time.  He's a bit younger than me so never thought I'd see this day.

Once again many thanks for responding, sending you much love. 

Hi Jess

It’s just so heartbreaking… I can only tell you to live in the moment, don’t think about tomorrow, just live for today. Just spend as much time with your brother as you can. I’m sure that you have realised just our fragile life is.

With this disease, things change so quickly. One day can look good, but the next day can be so completely different.

I know exactly how you are feeling, I must have cried an ocean and you just feel so hopeless. Just keep telling him how much you love him, which I’m sure you do.

My heart goes out to you, your brother and the rest of your family. 

Sending lots of love your way.

Thanks so much. Just been in to see him, he doesn't want us there, he became agitated.  Keeps saying he wants to die (I think he really means it) in the end we left, I broke down as I walked away from him,  it's just too unbearable.  Can't imagine what you went through, thanks for being so kind to me, take care 

Hi Jessie. Has his team spoken about him being cared for a home if that is possible? The palliative care team team your local hospice should be able to support him for as long as he needs them. 

Hi Sulubee

It was his wish to go home, palliative team now involved, his bed etc arrived today.  He lives alone so don't know if it'll work? We're giving it our best shot.

Hi Jessie. There will be a discharge plan and it sounds as if its underway if a beds delivered, maybe a hoist too? 
things to think of ….access… key safe..remote unlock…

Also realising carers will be a lot of different people which can be confusing and upsetting . 
  Dont always arrive at the patients preferred time! 

good luck and bestcwishes

Thanks.

It's going to be difficult but we'll give it our best shot.  He's wanted to be at home throughout so we have to try. Keysafe in place, bed arrived, waiting on care package now.  Take care.

Hi Jessie, sorry to jump into the middle of a conversation here.  I just wanted to say that from our experience palliative/ end of life care at home can work out and provide as satisfactory an experience as possible.

In our situation, (at the point of recurrent, untreatable tumour with symptoms progressing rapidly) the hospice palliative care doctor together with a specialist nurse arranged for care to be provided at home twice a day (a third visit was covered by community nurses) by Marie Curie nurses. This was arranged as my husband was deemed unlikely to live beyond 12 weeks, though had he done so their period of care could have been extended. In the event, he received their care for nine weeks. It was faultless! Those nurses are just amazing in their skill and dedication.

I have also (when I cared for my bedbound mother) had experience of Council provided care packages. This was not to the same level of specialism, and timings unlike with Marie Curie, were subject to change.

I would expect with your brother’s diagnosis, he would  be receiving the specialist type of care at home.

I am so sorry to read of your brother’s circumstances and hope that what is put in place  works out for him.

Thinking of you.

Hi Asa21

Thanks for reply, that's very reassuring. My main concern is that my brother lives alone, he's always been extremely independent and a very private person. 

I've been speaking to the palliative care team and must say they sound very supportive, he will have carers 4 x day.

He rang me last evening (he hadn't done so for a while) he keeps talking about getting home. I told him nearly everything is in place.

My heart is broken to see him like this, it's so hard to stop crying, I just don't know how I will get through this and support him, it's been the most horrendous time.

Wishing you all the best.