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? 🙏🏻

We had to do this in November and it is the hardest thing but also the biggest relief once Mum went. Not cancer for us but Dementia and stroke. Desperately sad, just spend time hold her hand treat her gently, get GP on board with end of life pathway, get a DNR in place (you have to actively do this or request for GP to do) ask for Hospice at home in your area, they help with regular visits to help change and turn your Mum but also with overnight sitters - often in conjunction with Marie Curie. We found it a godsend as Mum would still try to get out of bed up until around 7 days before she passed away. Take time to be her family as well as her carers, use the services to ensure you take care of yourself and your Dad at this time. We also used the time to ensure we got the priest in f or last rights and prayers, contacted her friends to come and see her and make a nice environment in her room for her, I still cry at the drop of a hat at the moment - am now - but I hope this information helps someone else going through this.

Also ask GP to arrange fortified drinks for her which may be easier than food etc, they get you a tester pack to try them, and as she doesn't eat nd drink alot ask the carers that come in about cleaning her teeth using pineapple juice with fibres and also get some gel in a tube that keeps her mouth moist without giving her fluids, keeping her mouth and lips comfortable.

As the body slowly closes down food and drink become unecessary, we stopped anything at all oral or intravenous around 6 days before she actually passed away as it was clear her system was shutting down and also there was a risk of it going on her lungs and causing pneumonia. All of us found t hard thinking it was cruel - it was not. Mum had a very peaceful passing in the end.

yes we had to change very frequently towards the end and double incontinence. We bought puppy pads from a cheapy shop to use on the bed for changing and any leaks otherwise every change we were bed changing as well which is horrendous for Mum but also for the washing.

Should also say request a hospital bed so you can up and down it and air matress so no risk of bed sores or reduced risk

Another thing - get someone to show you how to use a slide sheet as well

I found it helped to change what I prayed for to a gentle passing for her to feel loved and comfortable, for her body to be in good condition and pain free. You need to speak to GPs to get a co-ordinator appointed to help you - usually Community Nurse or similar, they can help you move things along quicker with a phone call 24/7

"I am praying for her to pass. Which makes me feel guilty, even though I know it’s normal."

My dad had cancer too. My desperation was indescribable.

I feel for you and your mother.

Gentle hugs @Twinkle71.

We have all the things you lovely lot have mentioned. Hospice at home, hospital bed, named nurse, DNR signed, slide sheet. The only thing we don’t have is over night care as my Dad refuses it.
My mum seems to time her bowel movements around the hospice team; so whenever they come in we have already just changed her. We can’t leave it even for a few minutes as her bottom is ulcerated and sore. The slide sheet and hospital bed help, but she is a large lady, even more so with the swelling and me and my Dad are little. I feel so guilty when we have all these things in place and I’m still moaning. I’m sorry 😐

don't be sorry

re the toilet stuff, that was one of the things that upset me the most - and dad I think. A shell of a person, still having to deal with that.

can you get more care in or is your dad against more daytime care?

Arghh. The hospice nurse has just left and she’s filled the nappy again. The whole house stinks of death and shit.
Dad is adamant he doesn’t want any more care because quite rightly there are people who really need it more than us. If this carries on much longer though I will have to get back to work. I’m lucky in that we have our own business and I’m flexible but I cannot just not go in at all. I feel crap telling my Dad that though . 😞

I'm so sorry OP. Very dark wee is what I observed with my mother, quite near the end, if that helps. My aunt (her sister) and I sat there watching her and talked quietly about how we'd have finished things there and then if it weren't illegal. There seemed no sense in letting her continue as she was.

Your dad's resistance is partly down to him not wanting to admit this is happening - my own dad had to be convinced to tell people about my mum's funeral as he was so reluctant to acknowledge the reality of the situation. Please ask for additional help - you are not a bad person for asking. Maybe tell your dad they insisted and ask them to play along, if they are willing? They must have encountered this before

Please don't feel guilty for being 'moany' as you put it. You are really not moany at all, you are facing such huge challenges and please ask for the help if you need it. It may be better to have things in place incase you have to return to work.

I always see this as a safe space to offload, have a rant, discuss the harsh realities and garner some understanding and support from people who don't have the same emotional attachment to your family member. It's often easier to let your emotions out in a 'room' of strangers

Willing as much moral and emotional support as I can send you.

@ContessaferJones My sister and I have had the same conversation. So I’m glad we’re not alone !

@Minxmumma thank you for being so supportive and understanding x

I'm so sorry you're going through this. I have no experience of this, my dad died suddenly so thankfully it was quick but it will always sit uneasy that we never got to say good bye.

When my children are having a particularly bad episode of stomach bug and are sore from going to the toilet so much I put a nappy rash cream called metanium on them and it really helps. Even though they are much older now and in primary school and not actually in nappies. I know it's not the most dignified thing but maybe it would help to know its making her a bit more comfortable...

Thinking of you xx

Twinkle thinking about you. I nursed my mum through her last four weeks of throat cancer, she was 54. (Was given those weeks off work as compassionate leave, this was forty years ago). The feeling of guilt wanting the end to come is normal, still remember the feeling of relief that she was at peace no longer suffering.

Take care.

Just wanted to send you and your family love and strength. I know it means little from a stranger on the internet given what you are going through. Don't feel guilty, let it all out on here, whatever helps x

My daughters (in their very early 20s) and I nursed my husband at home to his death from bowel cancer. I feel for you.
We were fortunate that his pain was well managed and we had superb support from MacMillan and the district nurses. A Marie Curie nurse sat with him for his last three overnights so that the three of us could get some sleep. Also he had a colostomy bag, which made it a lot easier to deal with his personal care respectfully.

His passing was very peaceful. He was pretty much comatose for the last 24 hours. When we realised he was about to go, my girls and I sat by/on his bed for that last hour, sharing memories and laughing at some of them. We held his hands as he took those last breaths, then hugged each other, grateful that we'd given him the peaceful death at home that he'd wanted.

I wish your mother and yourselves, the same gentle passing.

I'm sorry to hear you are still going through this. I know it sounds daft but it will pass and you will all move onto the next stage

You have done the best you can and that is all anyone can do.

So sorry you are going through this twinkle. We had it with my dad last year. My brother and I took turns to be with mum in caring for him. It was so hard, we live a few hours drive from mums and I remember the feeling of dread when I got close, i t was just so hard. But when he died, we knew we had done all we could to support him and mum. Do give yourself breaks if you can though.
Sending strength

Still here. Things are progressing. Her hands and feet are becoming cold and she hasn’t really been conscious for 24 hours.
She is still peaceful and pain free and all her grandchildren are popping in and out so I’m hoping she will soon just let go 🙏🏻

I hope for a peaceful passing for her as soon as possible - this is the right and loving thing to hope for.

I am in a similar situation with my OH and I just want him to go now - but he could in reality go on for years in his subhuman state.

Please do NOT feel the slightest bit guilty about hoping she will die soon - it is the most loving sentiment at this time: to wish for her to be at peace and out of suffering. I am holding your hand.

Thinking of you. Mum peaceful and pain free is a comfort for you and family.

Thinking of you all. So glad she is peaceful and pain free. I'm glad you have company.
Gentle hugs and strength.

I'm thinking and praying for you all. You are a wonderful daughter and I'm so sorry you are going through such a hard time.

Sending love and light