Waiting for the end

Hello ICH501

My husband passed away last week, and like your mum he seemed to keep rallying round. My husband went into hospital on the 2nd of June with sepsis, which I had caught in time. He was eating and drinking through the 3+ week stay, but his mobility had gone by then. When he was awake he could have conversations, but there was quite a bit of confusion . He was bed bound at home, although in the first week he did keep trying to get out of the hospital bed downstairs, cos he wanted to 'go to bed'. He went from being able to feed himself 1 day to me having to feed him the next, but could still talk to us at times right up to the last day. You may find that your mum will suddenly deteriorate like my husband in that last 1+ weeks, and it will possibly be very sudden at the end. 

It is such a heartbreaking disease, and like you I was determined to be with him at the end, fortunately I was,  but he went so suddenly I nearly wasn't 

Thanks so much for your reply, as awful as it sounds this has given me an element of comfort and feeling a little bit more prepared. Everything you have said about your husband is my mum to a tee at the moment, bed bound, needing to be fed, still awake for a lot of the day albeit completely withdrawn socially - almost like she's just staring into space all day - able to talk when spoken to but can't hold a conversation and very confused especially about time of day/day of the week. She had pretty much stopped eating last week but this week is able to eat again so it's the up and down nature that is really difficult, you mentally prepare yourself for what's coming and then you're almost stuck in limbo for a bit. It's such an awful situation and I am so so sorry for your loss

so sorry for your loss, Jac1966. It truly is a heartbreaking disease.

Please be gentle with yourself over the coming days/weeks/months and remember that we are still here for you.

sending you love and light and hugs

Wee Me xx

HI ICH501

so sorry to hear that you are at the final stages of this journey with your mum. A GBM journey is an emotional rollercoaster for all concerned.

I supported my late husband through the 3 years of his GBM journey and we were told three  times that the end was imminent - once in Feb 2023, once in Aug 2023 and then finally the end came at the end of Oct 2023. 

G was very physically fit right up to the last few weeks. He was running daily up until Aug 2023 then focal seizures and a DVT put paid to that. He would still walk miles daily though and cycle on his static bike in our garage. We were warned that stroke/seizure were more likely to bring about the end that the tumours themselves.  On the Tues night, he fell in our kitchen while trying to pinch some chocolate from the fridge. I joked it was karma for trying to steal the bar of Galaxy but when the hospice nurse was in the next day we noticed signs of a stroke so we assume that was what caused the fall. A couple of things the nurse said in passing alerted me to the fact that she thought the end was near. On the Saturday, without a word of a lie, he cycled for 3 hrs in the garage in the morning, went out for the afternoon with his friend who took him for an ice cream sundae and a trip across the river and back on the ferry. He came home, was first finished dinner then went up to his study (bat cave) to watch tv. He had had a great day considering that by that point he could barely see and conversation was impossible. He was asleep when I went to bed that night. Early on the Sunday morning I wakened with him retching and things spiralled quickly downhill from there.

We never found out if it was a stroke or a major seizure but something had happened overnight and at some point the DVT blew as the swelling in his leg went down dramatically. He never really regained consciousness after the Sunday morning. The local community nursing team were in and out all day and he was admitted to the local hospice on the Monday.They were absolute angels. G passed away peacefully on the Friday afternoon.

My daughter (then 23) couldn't face the hospice so she said her goodbyes to her dad in the house before the ambulance arrived. My son (25) and I spent the five days at the hospice, only coming home to grab some sleep for a few hours each night. We were there when G passed away. On the Friday we were just leaving the house to head to the hospice when they called to say we should get there. G's breathing was shallower than the day before and as Friday wound on it just got slower and shallower until about 3.15 it changed. I buzzed for the nurse and she stayed with us until he slipped away at 3.45.  It was the peaceful pain free (well as pain free as they could make it) end that he had hoped for. He was scared of being in pain.

Even knowing that the end was coming, it still hit hard. No matter how emotionally prepared you think you are, you really aren't. That said, G's passing came with a sense of relief too that he was no longer suffering.

Please don't put pressure on yourself here. This final stage is tough enough without adding to it. It's not uncommon for people to "wait" until their loved ones are out of the room before they let go so please, if that should happen, don't beat yourself up about it. As long as your mum is comfortable, peaceful and not agitated or in pain then that's the important thing here.

Sending you love and light and hugs

Wee Me xx

Thank you Wee Me

It was such a short amount of time from me posting and my darling husband deteriorating so fast. Our Oncology did worry that transport from hospital may not happen in time, but I got him home where he wanted to be . He was home for only 2 weeks My friends are amazing always checking up on me and asking if it's ok before they turn up

My thoughts are so much with you all going through this terrible disease

Jac1966

Thanks so much for your reply and being so open with your story. It sounds like you did a wonderful job supporting not only your husband but your children as well. I am only 29 myself and while my dad is doing the bulk of the physical care for my mum I often feel like the only adult in the room throughout all of this. It sounds like they were given the choice as to how much exposure they had to the really rough stuff, and that really is a gift 

Hi ICH501, My husband was diagnosed with Gioblastoma in may. Up until last week he was eating and drinking really well and even able to walk a bit with support. At the end of last week he suddenly took a turn and is now completely bed bound with a convene fitted and incontinence pads. His speech is limited and he whispers everything. He's barely eating or drinking and sleeps for most of the day. I've had several episodes of incontinence as he constantly tries, and usually succeeds in removing his convene and soaking his bed. He does have carers come in twice a day, but the incidents of incontinence are usually when I'm on my own with him. I also keep thinking that he's moving towards end of life, but as I've never experienced anything like this before, it's so valuable to hear other people's experiences.

Hi Cathy,

I'm so sorry you're experiencing this too. It really is horrendous. Like I mentioned above my MIL passed last year with Gallbladder cancer and I was her main carer so have some first hand experience with end of life and what that looks like. I do think things happen differently with the nature of GBM being in the brain. Once my MIL became bedbound it wasn't too long until she passed, only a matter of weeks and the district nurses were quite clear with us on that which I found helpful. Once her deterioration started it continued until the end. What I'm finding with my mum that is different is the pattern of deterioration, I'm seeing a drop and plateau pattern, things change suddenly and then she stabilises in that state a bit, then there's another drop and im bracing myself for the continued decline but she stabilises again.

Last week my mum had all but stopped eating and that is usually the start of the end as the body cannot sustain no food; but this week she has rallied and is eating a bit more. Still not alot but enough to keep her going. Our experience is the same with the incontinence too, nothing for the carers but once they're gone all bets are off. It's tough and it's a job that two carers would do so doing it on your own is such a challenge. My mum is also only whispering now and has a lot of confusion - she seems very fixated on time of day/day of the week strangely.

I don't know if you've seen it shared on here but I find this timeline quite useful to help be understand where we are at and what we can expect. https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline

Please know that you are not alone in all that you're feeling and feel free to reach out privately too!

Thank you so much ICH501, the link that you sent me is absolutely valuable. I know that the disease affects everyone differently. But seeing that, kinda helps, it makes it feel realistic and like I'm not imagining things. I have to update his mum and brother every day. They won't come down, even though I've offered to collect them. I guess it's easier for them to not have to see or acknowledge what's happening. Not sure I could do that if it was my child, but hey, I get it. Anyway my lovely, thank you again and please reach out whenever you feel the need xx

Hello Cathy

i can completely relate to what you have said. I cared for my late husband and I was the primary carer. He used to do something similar in the initial days when he was put on incontinence pads. In his mind he will think he has to go to the toilet and he will try to remove and wet. As you mentioned, carers came 3 times a day but all this will happen when they are not around. It is very very difficult. Hang in there. Sending you lots of positive energy and love. This community is there for you and we understand what you are going through. Please share your feelings and reach out even if you just want to vent out. 
you can read my full story in my profile.