End of Life, last few days?

I'm so sorry to hear about your mum, sending hugs.My husband is 56 and was diagnosed 18mnths ago.At the moment he is physically well but I do wonder whether deterioration might come rapidly at some point, I'm sorry I can't offer any advice but would be interested in other responses.

My dad had cancer and died in a hospice when he was 59, I had arranged to visit for a the week and I spent a few days with him before he passed away at the end of the week - my mum always says he hung on so he could spend time with his family.

Take care x

Hi MEmmaSx,

Welcome to the group and so sorry to hear about your mum. I cared for my wife who had a GBM.

Below I've popped some info on what support Macmillan can provide. To answer your question we had my mother-in-law's funeral in December 2023 and I think my wife held out somewhat for that. By that point she was using a walker, within weeks she was in a wheelchair and then a few weeks later was bed ridden. She died in the February.

You might have come across this before but there are timelines that can offer some guidance on what to expect towards the end. It's pretty scary reading but I found it helpful as the deterioration can be sudden and it can help prepare you for what might come next. End State Symptoms of Brain Tumor Patients - Glioblastoma Support Network

Sending a virtual hug,

Chris

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There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Have you or your mum been offered any counselling at all? Either way it’s always good to talk so please remember you can call 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.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.

HI MEmmaSx

a warm welcome to the group. So sorry to hear about your mum and the changes that you are seeing.

I see Chris has already replied above but thought I would add my welcome and the gist of my tale. I also read your comments on the other thread.

I supported my late husband G through the three years of his GBM journey. He was 54 when he passed away peacefully on late October 2023. A lot of what you are commenting is resonating with me. G was mobile up until the last few days. He was a fitness freak (marathon runner) and was in fact running up until August 2023. When he could no longer run, he would cycle for hours on his static bike in the garage and also walk miles. His eyesight was poor by that stage and his balance a bit dodgy. He struggled with speech throughout his journey but it got noticeably worse in the last few weeks. 

We were passed into the palliative care phase at the end of Feb 2023 and were told he had a few days/couple of weeks at best. He had an issue with focal seizures in Aug 2023 and was admitted to the local hospice to bring them under control. Again we were told to have all our last conversations as he only had a few days at best. By this point he was difficult- I'll not lie- and I told the hospice that if he came home I couldn't keep him safe as he kept wandering off. They empathised but there was no alternative. 

On Sat 21 Oct 2023 without a word of a lie, he cycled in the garage for 3 hrs, went out for the afternoon with a friend for a drive. They went for an ice cream sundae and as it was a nice afternoon took a trip on the local ferry across the river and back then had a scenic drive home. G was first finished his dinner, watched some TV then went to bed. He'd had a great day and for once was in a reasonable mood. Something happened overnight (Stroke/seizure - he had had a DVT and it blew at some point) but by the early hours of Sunday morning he was in a very bad way. Speech was gone. He was admitted to the local hospice the following day and was barely conscious at that point. The hospice staff were absolute angels and took great care of all of us that week, especially G. They kept him comfortable and as pain free as possible. He was unconscious from late Wed and slipped away peacefully on the Friday afternoon.

Everyone's journey is different but I wanted to share our tale to let you know that when the time came it was peaceful and he knew nothing about it. 

It's such a cruel journey to watch someone you love go through and these tumours steal the person from us so many times during that journey.

This is a safe and supportive space so please reach out here anytime. As you've already seen there's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

This final phase of the journey is exhausting- emotionally, mentally and physically - so please be gentle with yourself here.

Sending you a huge virtual hug and lots of strength.

love n hugs.

Wee Me xxx

Thanks so much for your reply and your experience. So sorry to hear about your Dad, thank you for sharing. 

My mum thankfully is still with us, although everyday she seems more tired and the walking about definitely is becoming a bit more of a struggle, she is still out and about everyday and she still has a good appetite and no other major signs like others have said to look out for. I know it can be sudden so just trying to make the most of each day, but really been struggling the last few weeks just constantly anticipating the worst. 

i appreciate everyone’s support and experiences in this group.

Thank you for your response & experience. 

my mum is still with us just now & is fighting on, just trying to take everything day by day just now. 

thank you! 

Thanks so much for your reply & sharing your experience. So sorry to hear about your husband. Your situation with how fit your husband was prior sounds very similar to my mum. She is always on the go and makes sure she still gets out and about everyday. 

we have noticed in the last week or so though she has became increasingly more tired and definitely is slower and struggling a bit more the longer she walks. But she still is trying and not just staying in bed or anything. We are so glad she is still with us, but it’s also very draining and just the feeling in constant limbo. Also the unknown of what’s to come , although I appreciate everyone’s support and sharing their experiences so that I can look out for anything that may indicate the last few days. 

thank you so much !