Sitting with my Mum ... how ridiculously hard this is

[Twinkle71]

DM has battled bowel cancer for 4.5 years . Spread also to liver and lungs.
She is fading away day by day. I’ve moved into their house today to give Dad support.
She is yellow, puffy, confused, sleeping all the time. No mobility at all. Losing control of bladder and bowels. But has moments of lucidity, will manage to eat small mouthfuls of food and sips of water.
I have two teenage children at home with sickness bugs. I’m lucky to have a really supportive DH.
I feel so torn. I feel so guilty wanting this to be over.
How long can this twilight zone go on for? 🙏🏻

Have you spoken to Macmillan or Marie Curie op to see if they can help with getting some more care for your mum?

I'm sorry that you are all going through this. You all deserve as much support as you need.

Thank you everyone, it is so reassuring to know I’m not alone in wanting this to be over. It is 3am and me and Dad have just changed her again.
We have requested more help and are on the list for night time care but it is on a ‘needs first’ list so there may be more needy cases.
As she is totally immobile but still wants to try to use the commode they would have to come and wake us up anyway so seems pointless.
She is still eating (slightly) and drinking so I’m guessing this means we have a fair while to go?
McMillan have offered her a facial! Not really helpful. I think depending on where you are they can either be fab or useless.
Hospice at home are wonderful but just so stretched.
She keeps telling me she wants to go home and I believe she knows exactly what she means by that 😞

Hi OP

I'm so sorry you're having to go through this.

I went through this a year ago with my dad. He had been in hospital for a while with heart failure but they were treating it and then they decided he wasn't responding to treatment and withdrew it. He went downhill very quickly but then took a week to die and me and mum found that very hard.

Like your mum he had moments of lucidity but then he was put on a syringe driver and the dosage was upped when he got agitated. He then became completely unconscious and died 3 days later.

I dont feel at all guilty about the fact that we wanted him to die at that point. There was only one possible outcome and the quicker we got there the better as far as Mum and I were concerned. I did stay in the hospital one night with him, sleeping in thr chair by his bed and that was a dreadful night as I didn't reall sleep, the chair was so uncomfortable and staff came to check him.every hour.

I hope for your mums sake that things progress swiftly and peacefully for her. Thinking of you

Sorry OP, have also been through this and it’s the most demanding and heartbreaking time, I hope you are managing to have some rest at some point although I know it’s almost impossible

Hi Twinkle, I've just switched with my sister, her turn to sleep for a few hours. Dad (whose hand I am holding as I write this) has had a syringe driver for 36 hours now...
We are v lucky, carers 3 times in the day, although with dad unconscious just checking he is clean and dry and repositioning him.
Tonight I have a lovely Marie Curie nurse sitting with me, reassuring me each time his breathing changes, but still v scared

I hope all are as okay as their situations allow.

You're in our thoughts.

Oh op, you and your Dad are doing an amazing thing. I can only imagine how incredibly hard it is in every way, emotionally, physically and mentally exhausting. I hope you can get some additional practical support and find time to rest.

To each of you at this point, you are all in my thoughts and I hope I find the same strength in the coming months.

Gentle hugs

OP, re the eating and drinking question, although people often stop eating and eventually do not want to drink, my brother was eating fairly well until a few days before he died and was still having some food and drink up until the day he went, so it does vary. I was frustrated with the hospice as they persuaded him to go back on steroids for symptom management when he had made a choice too so then a week or so earlier. He went from nibbling at food and having no energy to eating 3 meals a day plus snacks and constantly wanting to get out of bed despite not being safe on his legs. It was a nightmare and they soon stopped the steroid s again but I am sure it prolonged his life for a couple of weeks which he would not have wanted. You feel so guilty when you want them to stop eating though. Such conflicting emotions but you are only wishing them away because you know that is what they would want at this stage. Hope and pray it is not too long now. Big hug too. x

Thinking of you.

This phase is awful and feeling that you want it be over very normal. Expressing that is my so usual thought.

People who have been through it will know exactly what you mean and agree. People who haven't done it will mostly be shocked.

Chin up. You can do this for your Ma.

Thank you so much for thinking of us, it is a support I really appreciate and I’m so thankful you’ve all taken the time. I would like to answer you all individually but my befuddled brain is too confused 😐 Apologies for that.
I’m still here, but last night I got the sickness and diarrhoea bug, so I’m feeling dreadful and as much help as a chocolate teapot.
Mum is slowly, oh so slowly fading. Small amount of pain now, thankfully not much.
Still managing a small amount of food and liquids. She is on steroids too plus various other pills which my Dad frets about her getting. But she is struggling to swallow them now. It’s heartbreaking to see my Dad trying to still make her better, clinging onto every second with her.

She is saying such poignant things ~ ‘ Who would’ve thought I’d go not on a summers day?’ (she loved summer and I think she is annoyed she is dying in winter!)
She asked us last night why she was getting worse, ‘is this the end?’ We don’t know what to say . .....

All in all, I recognise this is a good death so far. She is in her own bed surrounded by her family, we are brushing her hair and massaging her swollen legs. Her grandchildren are all popping in. She has little pain. I cannot believe how tremendously hard it must be for those of you who have witnessed more brutal deaths.

@Twinkle71 and @Lifeisdinky my thoughts are with you both, you're doing an amazing thing.

to you both, and anyone else going through similar, wishing you all peace.

💐

💐 I’ve not been through it, crying reading your post at the love you are showing her. I completely understand you feeling that you want this over. Wishing you all the strength to keep going.

I'm so sorry you are going through this. I sat beside my dad last new years eve as he passed away. And although a horrible experience, he had had enough and just wanted to go. I told him that we were all there and it was ok to go. It was the last thing I wanted to say but knew he needed to hear it and he went within half an hour.. He had been in hospital for 7 weeks at that point and up until 2 weeks beforehand we had no idea what was actually wrong with him. It was lymphoma and despite him always saying he wouldn't ever have chemo he decided to fight it. Unfortunately he contracted pneumonia and just wasn't strong enough to recover.
Please don't feel guilty about wanting the end, its not selfish to want your mum to be out of pain. Sending love and hugs. And please make sure you look after youself too.x

to you all that have suffered this.

I’m feeling panicky and claustrophobic in the house. I want to run away. I am amazed at the strength my Dad is showing. It’s a master class and privilege to watch him deal with her.

She is still rallying, our palliative care nurse thinks it could be weeks, but then again maybe days? We have hospice at home coming in but haven’t been able to get any night cover yet. We are on the list but obviously she is still not as urgent as some poor people.
I can’t remember life before this Illness. She has been battling for 4.5 years now and it just seems to dominant everything. I know that sounds Incredibly selfish of me but I’m longing to just go back to work for a bit of normalcy. 😬

Her GP should review her meds so she's only taking what's absolutely necessary. Many can usually be stopped at this stage. Are the district nurses (attached to GP surgery) not involved? Have the 'just in case' end of life drugs been arranged to have ready for a syringe driver if needed?
My DM was killed suddenly in a car accident. I wish I'd had the chance to say my goodbyes.
for you

Oh it's so so hard. My mum died 4 years ago and I was the oldest of her 5 kids, I was only 30 and youngest 15.

I was so grateful that this end stage only went on for a few days. We all just wanted it to be over, for mums sake as well as our own, as selfish as that sounds. She stopped eating and drinking and deteriorated fairly quickly although even until a couple of hours before her death she was having fairly lucid periods.

Good luck, it's so awful but times definitely a healer. I don't like by admit to others unless they've been through it themselves but I did feel partly relieved once she'd died as well as devastated

Thanks @SassenachWitch, to say my Dad died earlier today peacefully with us with him. The support we got from our carers the District Nurses and Marie Curie was fantastic..

It's such a strange situation and limbo to be in. You want it to be over because it's horrible but you don't want it all to end. You're doing so well. Look after yourself and hugs to everyone going through this.

@Lifeisdinky so sorry to hear that. I’m glad to hear you dear Dad went peacefully 🙏🏻

@cptartapp Meds have been revised today so she is on bare minimum with instructions not to fret when she stops swallowing. End of life drugs delivered. It all seems so surreal.
I was having a conversation recently with a friend who lost her DM suddenly, like yours. I am blessed to be able to have said all I needed to say. So tough in circumstances like yours when they just are snatched from you .

I was relieved when my father died last month. I was sitting beside him, reading as he drew what I realised afterwards was his last breath. I thought I’d feel guilty about this sense of relief for him (and us), but I didn’t. I think I’d done a lot of grieving in the previous nine months and had let him go twice when he was apparently dying and then didn’t actually die. I miss him but not seeing him weaker each time and the pain of not knowing if he’d be there next time. The last weeks are very tough for family. But I think you do some of the grieving work then. It prepares you for the end. If a parent dies suddenly, you don’t get that pre-mourning period.

@Lifeisdinky I’m so sorry for your loss