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Life-limiting illness

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Original poster

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

175 replies

Twinkle71 · 07/01/2020 17:56

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? 🙏🏻

OP posts:

YeOldeTrout · 09/01/2020 20:22

I'd feel the same, OP. fwiw, I think you're amazing, coping admirably.

AlexaAmbidextra · 09/01/2020 20:24

Twinkle71. I know this is so hard for you. I cared for my Dad at home when he was dying eighteen months ago. We were lucky that we got Marie Curie almost every night for the last month. With the benefit of hindsight I can tell you that although it was so hard watching him die, now I can look back with such gratitude that I was able to care for him as he wanted, in his own home. I find it an enormous comfort that he was where he wanted to be and we were able to share that time together. It was very precious and I’m so very lucky that I’m left with no regrets about his death. Sending love and strength to you. 💐

Whynosnowyet · 09/01/2020 20:26

I helped me friend be there for her dm.. We got a CD player and played endless music for her. Fav being Johnny Mathis.
Just an idea op.

Abraid2 · 09/01/2020 20:29

My brother had the cricket on when my father was dying and then I found a piece of music he liked and that was almost the last thing he heard. It’s not a bad way to go, feeling loved and attended to. 💐

FoxtrotSkarloey · 09/01/2020 20:32

This reply has been withdrawn

This has been withdrawn by MNHQ.

IckleWicklePumperNickle · 09/01/2020 20:34

I'm sorry you're going through this. It's hard, we did my MIL's end of life care a couple years ago. From when she had 2 syringe drivers in. It took 1 week.
When she was still conscious, she wanted it to be over quick.
Big hugs. X

DrivingMsCrazy · 09/01/2020 20:54

I totally understand OP. Dad and I sat with my Mum for days. It's comforting and awful and special and terrible all at once.
You can only feel what you feel, there are no rights or wrongs and grief is so individual. Just sending you lots of love and the strength to see this through.

DrivingMsCrazy · 09/01/2020 20:56

I'm so sorry @lifeisdinky I hope it's of some comfort to you eventually that your Dad passed peacefully

Original poster

Twinkle71 · 10/01/2020 20:12

Still sitting here, brushing her hair and spraying a small amount of her favourite perfume on her wrists.

OP posts:

mum2girls3 · 10/01/2020 20:27

Thinking about you Twinkle this sounds so tough and something I haven't faced yet. You sound like you're doing an amazing job, I hope you get some more support soon

ChristmasTree999 · 10/01/2020 20:40

Also thinking of you - experienced this twice last year with both my Nan and my mother in law. So incredibly painful and humbling. Just be kind to yourself and let your emotions be. Hope your sickness bug has eased too.

ParkheadParadise · 10/01/2020 20:40

Take Care of yourself Twinkle71

marthastew · 10/01/2020 20:44

Oh Twinkle.

I hope someone looks after me like that one day. What a wonderful daughter you are.

Villagegreenpreservation · 10/01/2020 20:47

You are doing amazingly well and a beautiful thing which will comfort you in the days and weeks to come

rumandbiscuits · 10/01/2020 21:10

Bless you. I know this time probably feels like it's dragging on forever right now but you will go back to your everyday normality soon and you will look back and feel comforted that you did all of this for your Mum. Not a lot of people would be strong enough to do what you and your Dad are doing. You are amazingly brave and I just hope that your Mum continues to have a peaceful death that isn't drawn out too long you are in my thoughts and prayers.

Minxmumma · 10/01/2020 22:08

@Twinkle71 these small comforts will make everything so much better for your dm. To feel clean, tidy and a little bit of herself.

You are doing beautiful things, with such courage and kindness. Be gentle with yourself, allow your emotions to ebb and flow as they need to.

Mischance · 10/01/2020 22:26

Such a hard time for you - I send a hand-hold and a hug.

I do understand how hard it is to perform the sort of personal and intimate care for a loved-one that they really would not have wished for you to have to do. Please do not feel bad about finding it hard to do such things - the bum-wiping and seeing the soreness - I know it feels so undignified for her.

I have done all these things for my OH, who has now sadly had to go into a nursing home, and I found it very hard indeed. You are allowed to find it hard - please don't feel bad about that. It is not what she would have wanted and not what you or anyone wants. But you are doing it anyway and I hugely commend you for that.

I know that feeling of wanting to run away - and wanting it to be over. But it is not just for you - it is for her too. I want it to be over for my OH because quality of life has gone for him and I want him to be at peace.

It really does sound as though you have insufficient support - I am sorry about the situation with your local hospice. Are there local MacMillan nurses available, aside from the hospice?

I really want you to know that all these things you are feeling are entirely normal - you are not a fraud and you are not selfish. If you are, then the same applies to me and to thousands of others. Your feelings are my feelings too - so I am here beside you.

lisag1969 · 10/01/2020 23:17

It's extremely hard. Been in your shoes exactly the same mum with bowel cancer. You want it to be over for them.
But want them to stay for our own selfish reasons want to see them and hold their hands x
If she has palliative care the nurses my tell you x

ThreeFish · 10/01/2020 23:20

I’m sorry you are going through this. It is hard, but you are allowed to feel as you do.
My Dad was 12 weeks in intensive care in hospital, hooked up to all sorts of machines and a thing in his throat to help him breathe. So I wasn’t doing all the care you are and it was still very difficult for us. He still had lucid moments and we knew he didn’t want to be kept there on machines. It’s very hard. He made it, or suffered it, to after Christmas, and then the doctors switched the machines off. I don’t mean suffering, he had pain relief, but it’s very difficult to watch. I know he knew his family were there at the end and by all accounts was very peaceful. Except I wasn’t there I had to go home that particular morning to see to DS. I hope he understands.

ThisIsSharonVanEtten · 10/01/2020 23:25

You are doing a lovely, and loving thing. I am sorry you are going through this. I have been through similar and wish you well through it.

ContessaferJones · 10/01/2020 23:33

I'm sorry you are going through this op.

Just a quick thought: when your mum has passed away, you will probably feel a sense of freedom at being able to leave the house etc without planning her care. You (and your dad) may feel terribly guilty for this. Please don't. My dad went through that with my mum and I had to tell him the same - it doesn't make you a bad person, just human.

ChristmasTree999 · 11/01/2020 11:55

How are you today Twinkle? I hope you managed to get some rest

Minxmumma · 13/01/2020 16:15

How are you @Twinkle71. Thinking of you

Original poster

Twinkle71 · 13/01/2020 16:28

I’m still here, thank you all so much for your thoughts. She’s sort of stuck in limbo; still eating and drinking small amounts but getting more and more yellow by the day. Her bowel movements have massively increased ( 7 in the last 12 hours). Nurse has recommended a small dose of imodium to try and stop it as she is so sore down there. It’s hard work and we are all tired.
But she is still fighting!

OP posts:

Original poster

Twinkle71 · 14/01/2020 11:03

I’m feeling so angry today. She needs her pad changing every couple of hours. Her wee is so strong it is dark brown and makes your eyes water. Poo is not much better . Sorry 😐
But physically she is still the same- in a twilight limbo land. It is so undignified and cruel. I want to run and never come back. Which of course I won’t.
I am praying for her to pass. Which makes me feel guilty, even though I know it’s normal.
Sorry for the rant.

OP posts:

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