Terminally ill mum

[butcherswife]

My mother was diagnosed with a high grade malignant brain tumor in 2016 - She has done remarkably well but i think her time is coming to an end. In Feb this year she was told they could no longer treat her and she has declined significantly since then.

She has only just turned 50, i am 26. My family are brilliant and i felt we have all dealt with mums illness so well. She was taken into hospital yesterday morning following a seizure and sickness, when i arrived yesterday lunch time i couldn't believe how bad she actually was.

I am really hard faced, always have been and one thing my mum has always moaned at me for as i never show emotion. My sister is so great at looking after my mum (she is a social worker, she also still lives at home so i feel she often has to deal with mums worst days and i get off lightly) and i just feel like i'm really letting her down - i hate hospitals, every time she retches i have to turn my head, each time she moves i worry. It's just awful. I am much more a practical person and I have been busying myself finding alternative treatments she may be able to have and I organise her meds for her each week.

Myself and OH are supposed to be going on holiday (abroad but only a couple of hours away) on Sunday but i just feel torn about what to do - i spoke with my sister and dad last night and we decided that we should still go away as we can't put our lives on hold and worse case scenario we can fly home if she takes a turn for the worst.

This sounds so awful but I can't face seeing her suffer like she is, i just wish she would slip away in her sleep. I have a knot in my stomach about going to see her in hospital later, i feel like i could quite happily never go again.

No reason for this post really, i just feel like i'm not pulling my weight as her daughter

I was in exactly your position a few years ago - and similar age. I remember having just the same feelings you describe. I don't really have anything useful to say, but just wanted to send you a virtual hug and

Firstly, I am so sorry to hear about your mum. I lost mine 10 years ago when I was just a year or so older than you are now and I really get where you are coming from. My sister is older than me and I felt she knew exactly what to do and I felt a bit useless and helpless. But she tells me now that my support during that time (just being there and being willing) meant a lot to her. So you are probably helping in ways you don't realise.

Don't feel bad that you can't face the hospital. I really get that. I felt like mum had "left" even then - it wasn't really her. I remember my mum asking for a drink but she was nil by mouth at that point, and I was too shy and awkward to ask the nurse what to do. It ate at me all the drive home from the hospital and I ended up ringing the ward; they assured me they were keeping her hydrated and would moisten her mouth with a sponge. God that memory is really painful to write down!!

I did feel I owed it to her to be there as much as I could be especially as my dad had emotionally checked out but that's another story I sometimes regret that, as mum slipped away during the night, and we all missed the call as we were all exhausted and slept through it, so not picking up the hospital message until the morning, that she was alone when she died. But honestly as I say I don't know if she would have been aware of us anyway.

My advice to you would just be, try and think how you want to look back on this time. You'd want to feel you'd done your mum proud but also that the daughter she'd raised was going to live on and be ok. I think your family encouraging you to still go away on your holiday is very admirable. We did some "weird" things right after mum died just because they'd already been booked in, like for example we went out for a fancy dinner for my husband's birthday. Tbh, those early days did feel a little like relief - I should warn you though that that feeling does ebb away. But you aren't wrong to feel that way because after all, you now know it is inevitable and I know you don't want your mum to suffer any more than she needs to.

Long ramble sorry! My heart goes out to you.

My Dad was my best friend and my mum and I nursed him until he died. I did it all with her as I’m an only child and couldn’t hide behind a sibling.
But I had all the same feelings as you. I couldn’t really talk to him at the end and didn’t enjoy going to his room to see him at all. I couldn’t cope with seeing him so ill and it was extremely hard for him too - we just stopped being able to talk to each other. Before the last stretch I spoke with him every day of my adult life, so it was crippling to be so unable to cope with where we found ourselves and I probably beat myself up too much about it. I was there and I did my best.
However I wore a stony mask that whole time, but it was only there to try and hide that I was a total wreck inside. I just couldn’t bring myself to crumble even in front of my family. We are all different and the way we cope doesn’t make us a better or worse person or feel less.
However I play things over in my mind a lot. I wish I had been better. My Dad would never bregrudge me as we had a wonderful relationship and adored each other, but I struggle to forgive myself. That’s me as a person and maybe you don’t overthink things the same way that I do, but if you think any of my story rings true for you, don’t run away now. You’ll find it difficult to forgive yourself later.
Life ends and we have to make that ending the best send off for our loved ones that we can.

Thanks for your lovely replies - i genuinely thought i was abnormal feeling this way.

It feels very surreal, i do feel like i am prepared for the inevitable but then on the flip side not sure how i will cope when it happens.. if you understand. As a family we have always been very resilient throughout my mums illness - i guess that's just how we cope but am aware it's not necessarily healthy to put on this 'front' if it is a front - i'm not even sure

I don't feel i will have any regrets, I have spent many a weekend recently looking after her whilst my sister and dad have been doing their thing and that has been nice. I will still go and visit her and will be there as much as i feel i can but i just really hope this isn't a long drawn out process.

@butcherswife I am in a similar position, but with my dad. He's in his final weeks. I've felt so unbelievably useless at times, but truth be told, there's not that much I could do. My dad is ready to go now, so I hope for his sake it happens soon, which makes me feel horrible and guilty.

@eagleflies your comment about the relief being temporary has got me thinking. I had been expecting to hang on to the relief, to somehow make it acceptable/ok and am working on the basis that I've done a lot of grieving already. But good to have a warning that that doesn't mean that'll be it for my grief, that there's more to come and it might be in a different format.

Love to you all and hugs if you need them during these tough times.

Awful isn't it BonApp I also feel like i have done a lot of my grieving too but just don't know.

She does seem to have got a little better over the past couple of days and there are talks of moving her to a hospice once the hospital are happy with her. She has been spending a lot of time at the hospice doing various crafts and i know she enjoys it there and ultimately that is where she wants to be. Only thing i have found odd is they discussed with her last night DNR but she said she wants to be resuscitated and i just can't get my head around that but it's her choice i guess.

Oh that’s a tough one butchers... can the DNR be rediscussed? I don’t know how it works in terms of changing it?

Our hospice is amazing. Knowing that support is on hand makes such a difference. Good that your mum wants to be there, she must feel reassured by their support.