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? 🙏🏻

poor you, that is hard.
presumably you can do shifts with your Dad?
would going out for a walk while he is with her help?
can you knit or sew while you sit with her?
play music you know she likes?

Please don’t feel guilty at all for wanting this to be over. You want her pain to stop. I have been through similar, though different, circumstances and you have my absolute sympathy. It’s a really, really tough time.

Hello Twinkle, it’s difficult isn’t it? My mum had bowel cancer and died in hospital. I wanted it to be over for her a lot longer than it was. She begged to die on a daily basis.
Her twilight zone lasted 2 weeks on a syringe driver.
Is a hospice an option?
In our case mum wasn’t suitable for a hospice as she was just “dying” and didn’t have additional needs.

for you.
I have just been through something very similar with my dad. His prostate cancer had spread to his bones. He was cared for beautifully at his care home and we children sat by his bedside pretty much constantly for the last few weeks. Ironically, I think that gave him longer, as he knew we were there and didn't want to leave us. It was both hideous and comforting in equal measure.
Is your mother on morphine? That will account for the confusion and sleepiness. If she is presenting as yellow, that might indicate the end is nearing.
No one would or could be specific about timescale. For us though, it sounds as though my dad was in the state you describe for your mum for perhaps under a week.
I'm so sorry. It's very difficult. I hope you have support for your own well-being too.

I'm sorry for what you are having to go through OP. I watched my grandparent die this way and I was exactly the same, I just wanted it to be over for him. The first thing I felt when they finally passed was relief that they were no longer suffering, the real grief took time to happen. I have no words that can help as everyone deals with these things differently, I just wanted you to know your not alone xx

I'm sorry OP. Sending you strength.

It sounds as if making her comfortable is the priority. She is lucky to be at home with you and your dad instead of in hospital in a way. Don't be afraid to ask friends for support.

I pored over the 'what to expect' symptoms, and 'how to know when' etc.
I kept seeing signs, but was a bit too early- he'd show that sign much more clearly a few days later, IYSWIM.

It's tough, but I don't think you'll regret it. Take the opportunity to talk to her, tell her about everything you can think of.

Don't be afraid to have a break- I'd say you'll know when you are in the last hours.

Wanting it to be over is sensible and clear headed. For us it helped saying to my dad that it was was ok for him to leave and that we would look after each other. I dont know if it really made a difference but he died not long after that.

I am going through this at the moment and it’s so hard, do you have friends supporting you? I have some incredible, amazing, kind friends who are looking after me too.
I just listen mostly and sit but sometimes we talk about trivial things and lose the awfulness of the present.

It was suggested to us by various people that we might want to say to my dad that it was OK for him to go; give him permission, if you like.
I get that, but it didn't feel right for us - primarily because at no point did my dad ever explicitly acknowledge that he was dying, (although he must have known). Even just a week or two before he died, he was talking about getting financial advice about investing some money to fund his care for the foreseeable future. We nodded and smiled and agreed that was a good idea, and let the idea hang. If we'd have said, "It's OK, Dad, you can let go now and go and be with Mum," he might have been horrified.

I told my mum she’d done a fantastic job of raising us in her final days. I told her she needed to give herself permission to go and she did. She whispered incoherently in her final hours but I hope she understood the constant messages of “ I love you mum “.
Be nice to yourself Twighlight x

Handhold OP, it’s terrible I know, don’t feel guilty. It’s natural that you don’t want to see your mum in pain.

I can remember feeling the same when a close relative of mine was dying. I so wanted him to be at peace, when you love someone you always want what’s best for them. I felt relief when he passed. I miss him so much but I couldn’t wish him back the way he was.

Love and strength to you and everyone going through this.

Thank you all so much for the kind words, it really means a lot. So sorry that you have all experienced it.
I feel a fraud though, because I want this to be over from a selfish view point. I want to run away from it. It’s heartbreaking, and smelly and undignified and pure physical exhaustingly hard work trying to keep her comfortable and move her without causing discomfort. Somehow she is not really in pain (have we got this to come?) so she is not on morphine at all.

I am having to wipe her backside , with her poorly sore skin and then put her back in nappies. Of course I am doing it but I want to run away.
I feel awful 😞

Sweetheart, you are not a fraud or selfish.

You are being there for your mum, mentally, physically and emotionally as well as caring for her. Are you able to get any help in for some of the physical care?

Sending you many wishes for peace and calm.

You are not a fraud, nor selfish. Sitting with my mum was the hardest thing I've done; I'm sending you courage and strength💐

if she is end of life she will be entitled to a care package which would be fast track health funded. Are you getting this OP. We recently tried to keep my brother at home when he was dying with a brain tumor. In the end his needs were too great and he went to a hospice for last 2 weeks. We still sat beside him but they did the personal care as needed and we got to go home at night until last couple of nights when my SIL stayed. I completely understand the desire for it not too be long and drawn out now. It was the most difficult 2 weeks of my life. I feel for you. x

@vdbfamily
We have hospice at home assistants come in twice a day but that’s for an hour at a time. Which is helpful but not enough.
Our local hospice is currently closed due to staff shortages and the only other thing we have been offered is a nursing home which we don’t want to do. Its so flipping hard.
I’m sorry about your brother 🙏🏻

A transfer at this stage to a new environment (hospice aside) is probably too late anyway. My dad was already in one and was very happy/comfortable there, so it worked well for him and the affectionate and loving care he received there was amazing.
I'm staggered at the level of personal care you're doing. And that she doesn't need morphine. That's lucky - if that's the right word.

I'm sorry to hear that twinkle- we didn't need to do much personal care for my dad, he was fairly well supported.

It's ok to be horrified, scared, fed up and sad all at the same time. It's ok to be relieved when the end comes. I'm sure it will be a relief for her too. There are all sorts of complicated feelings, and rightly so- people are complicated! I was so angry with my mum because of how she was my dad. They were always more for each other than anyone else, then when it was crunch time she couldn't hack it. But of course I was sad for her as well, and all sorts of other mixed up emotions.

Just let it be. It will happen, and you will recover from it all.

My mum died of breast cancer a few years ago (when I was 23 and my brother 19) and I was in a very similar situation to you. I remember sitting with her and her breath was ragged and reaping and sometimes she would stop for a few seconds and I would hope that was it but then she'd start breathing again. I remember having to feed her yoghurt and drip artificial saliva into her mouth to keep her comfortable and I found the whole thing so awful for so many reasons. It is an awful time. But once it's over you will be so thankful you did it and you'll always be able to hold the moments (however horrible they are) with you because you helped to give her assistance into those final days and look after her as she looked after you. I kinda looked at it as paying back what she did for me and I really felt priveliged to be there for her, albeit absolutely terrible too. Love to you. It's such a hard time but your mum will appreciate your presence even if she can't express that xxxxxxxx

Thanks Twinkle. I am amazed you are only getting 2 visits. If the alternative is a nursing home they should be able to offer far more at home as a nursing home would cost them££££. Have you tried pushing for more? Have you asked for night sits. I know areas vary a bit in what can be offered but I also think that often more can be done if you ask. Glad she is not in pain though. My brother had a very strong faith and was singing or latterly humming , his favourite hymns until the day before he died. That helped a bit but still an incredibly painful time. Big hugs x

I understood that a nursing home not being an option fir the OP's mum was more to do with personal choice than expense. My father had his last few months fees paid in full, as he was terminally ill with a short time left.

callme, yes, I do understand but my point was that if health are prepared to fund a nursing home, you would hope they would be happy to spend the equivalent budget supporting someone at home, which would amount to more than 2 calls. It does not seem like much. The continuing healthcare nurse sent a letter to my brother starting what his agreed budget was and that could then be used however they choose I think.

I'm sorry lass.

Sending you understanding and a handhold through it.

Yes its hard.
We sat with my mum for weeks. The home kept telling us she would not last the night. For the last 2 weeks I stayed beside her and slept on a chair. For me personally i was determined to be with her at the end, my dd had died 2yrs previously and I was not there for her.

In the end I remember my sister telling her to go, she kept saying her mother was in the room. 10 mins later she passed away peaceful with a smile on her face.

I felt I was able to cope better when my mum died, because I had been with her at the end. She was so frail and done in it was a sort of relief. Although, I do miss my mum and would love just to hear her voice again.
Take Care of yourself.