Lemon's Mum

[lemonzest123]

Hi MNers,

Thanks for tipping me off about the message limit on my other thread www.mumsnet.com/Talk/_chat/2725008-Would-any-MNers-be-able-to-help-tonight?pg=1&order=

I am stunned and unbelievably humbled to see that one little post I wrote sparked 1000 messages, and Im so appreciative of all you personal stories and jokes to cheer me up.

MN is offically amazing and you're all fantastic.

DM had a rough night, she apparently woke in the night with a bad headache which I think confirmed the disease has moved into her head (we expected this, apparently what's causing the paralysis often appears in the brain too). Still no appetite and sleeping all the time.

Hope everyone had a good night. I had yet more nightmares - theyre all about Mum and they all horrible. Shouty I is in fine voice this morning. Dad said he heard Shouty I bellowing to Shouty II to shut up the other day. Pot, meet kettle

Good morning Lemon. Being upbeat at this stage may be more than you can manage and I'm pretty certain I couldn't have done it when my DM was in her last days but we did all try to 'give her permission' to go- the same with my aunt who died recently. It's not that you're wishing her gone- just recognising that, for her, her body just isn't a good place any more. I know it's agonising and exhausting and I'm so sorry .
As to your ex I agree with others- whatever his entitlements or otherwise he has to wait- just ignore him for now.
A day off for me today- a slow start, a walk with the dogs, then lunch with friends and a quiet evening in. The glamour......

Morning Lemon
Sorry that your ex is pressuring you- as the others have said time to ignore him. You might want to find a quiet room and a cushion to punch.

I haven't experienced what you're going through so no advice, just a hand hold.

Morning Lemon. PPs are right. It's so very nearly time. The main thing is that your lovely mum is comfortable. She is surrounded by your love. And you are surrounded by us holding you gently in our thoughts.

I can't really be upbeat around her at the mo; she's so obviously distressed it would feel inappropriate and she's always found excessive cheeriness annoying. Its so frustrating, I can tell from her expression she's distressed but they've already given her all the painkillers and sedatives and anti nausea. Run out of ideas

Someone said previously that some people do get highly agitated before they pass....maybe its just the progression of things

Sounds so hard at the moment
No advice, just here for a hand hold

Lemon, agitation and restlessness are very normal at this stage. Research suggests it is not actual distress but the body's response to the dying process. I
Picking at the sheets, trying to take blankets off, seeming to not be able to find a position that's ok, is very usual. DM may well feel hot one minute and cold the next. Temperature goes a bit all over the place. If she doesn't mind, you could gently.massage hand cream into.her hands, arms, feet and see if she seems to be ok with that. It's very distressing to watch such agitation but most likely it's not as distressing for her as it is for you to see.

Yy to it being "normal"- it is agonising to watch.

But in as far as it can be, it's worse for you than it is for her. Please don't think I'm being callous in saying that sweetheart- the whole situation is pretty bloody awful for everyone- but it sounds like they are doing all they can.

Holding and moisturising her hands and arms is a good idea, presumably you're still playing her favourite music? She might find it nice to have some favourite smells around her- her favourite perfume or her favourite aftershave that your dad wears?

How are you bearing up? Have you managed to eat/drink/sleep? How are your dad and brother?

just a quick dip in - so sorry that this is where you are.
Re ex - don't agitate yourself about it. Try to compartmentalise it . Put ii in a virtual box in your memory, and shut the lid. You can deal with that rubbish later.
Re DM , maybe just make her aware that you are there, so hold a hand, stroke her hair , and yes to a lovely. gentle hand rub.
Hold on in there , remember to drink, breathe and relax .

My dad did that too Lemon - kept pushing blankets back, picking at sheets and wires. A lot of leg thrashing - we kept saying to him 'chasing rabbits again dad?' And kept holding his hand. That was about 24 hours to the end. He was mainly sedated from then on and I know what you mean about never again being able to have conversations, it's the saddest thing.

With my dad, his pain meds were not well managed until about 16 hours before he went. He was restless, agitated, then sedated, became peaceful - it was noticeable. Then his breathing changed and got shallow, irregular.

Pp mentioned answer phones - I was having a bad day because I realised I'd deleted his last message. If done it when he went into hospital for the last time as I thought it was for the best - I didn't want to be shocked by suddenly hearing his voice.

Of course now I regret deleting it - and I'd give anything to hear his voice again.

Hi Lemon, the final few days of my dm's life were not peaceful but the most important thing is that you're there. Keep talking to her, keep
Holding her hand.
My dm died of cancer and there was lots of agitation in the last few days, some tears and a v high temp, which was her body shutting down. Before that she was agitated and used to throw covers off the bed/pick at the sheets etc. It's not always as peaceful as you want it to be. I also got the sedation upped, otherwise it's too distressing fro everyone involved.
Thinking of you. Your dear mum will be at peace soon x

Hi Lemon, just nipped in to see how you're all doing. Hope darling Mum has settled down a bit now. Thinking of you all. Take care

Hi lemon so in awe of you - you are doing so well even if it doesn't feel like it! My mil found out yesterday a very close friend who is her neighbour for over 30 years is terminal. I've never met the lady but I sobbed. She is just hoping she passes peacefully and I pray the same for your dm.

As for your ex- tell his fiance to do one. Block and ignore. No good will come from it. If need be get your dp to have a word- he sounds like the type to know how to get a message across clearly!!!

This really is one of the hardest things you will ever do. So distressing and exhausting. Praying for you all- for peace for your lovely mum and for certainty for you that you have done everything possible to show her your love. You have left nothing undone or unsaid and that will be a comfort to you in the days to come. Love survives even when our bodies have given up. She won't leave you Lemon.
A hand hold and a hug if you need it

Oh Lemon, Lemon. As everyone has said, your Shorty Porky Ex-y is talking complete codswallop with a side order of bollocks (retired solicitor- Family Law specialist here, so I speak with some conviction) Put that eejit out of your mind - he has no place in there whilst you're going through this.
A dear friend of mine, a GP herself, saw that her mum was becoming distressed and agitated at the end and talked gently to her father and sister, agreeing that heavier sedation was called for. Her mum's passing was eased as a consequence.
Maybe you could speak to her doctors and see if mum's on the maximum meds possible? They might need to know from you and your dad that you're OK with sedation (or morphine, or whatever they are giving her) being increased- if, indeed, you are. If you aren't then that's equally valid, letting nature take its course.
My dear mum (now 93) would not have agreed to one minute of my late father's life being taken away by intervention, but in the end he passed away quietly in his sleep (Thank God) So I do understand both sides.
My heart aches for you all.

Hi everyone,

She seems a little calmer now, although her breathing still seems very fast and shallow. Shouty II yelling her head off. Me and DF snuck off for and hours kip and to get snacks for us and DBro.

DF is in bit, said he feels like he's having a breakdown and ranting about things like peoples driving.

Miss DP. Miss DM.

Thanks so much for your lovely words.

I could do had rubs but she hasn't been able to feel her hands for weeks. I sort of comb her hair with my fingers and I think she can feel that.

Hi lemon, I've been following your story but haven't felt able to post. I went through this with my Dad last year. I was scared of being there but also scared of not being there. On the last day I sat & held his hand. We had a conversation although only I talked. I knew what his words would have been. I still talk to my Dad like this now. I miss his voice. I just kept telling him that I loved him as I knew he could hear me. I went home & he passed peacefully. He wasn't alone my DM was with him. Wishing you strength for these final days. Ignore everything else, at this stage nothing else matters.

Wow Rosie you're my total hero, I can't believe you were able to stay so strong and dedicated it's really admirable.

Also has made me feel massively, massively, massively guilty about how shit we've all been at that sort of thing.

I think after a year and a half of looking afyer her we're just all absolutely exhausted and very depressed. Its as much as I can do to show up and not howl. When I was visiting but still going home a lot it was slightly easier because I'd be able to think up some things to say but now none of us does anything except sit with her. I sometimes try to dredge up anecdotes from my childhood etc but it sounds so forced and insincere. No wonder she's bloody miserable. Problem is we all are.

Lemon, don't feel shit- don't feel guilty- you are doing amazingly- it's so hard to do this stuff even for a day, let alone for weeks or months- it really does knock the stuffing out of you.
Its really important to be kind to yourself now. You are all running on fumes. Take a deep breath and do what you can, but don't break yourself in half trying to do what you can't. If you can't think of anything to say just play some music your mum likes, or read her a book or stroke her hair- she will know you are there, she will understand that you love her and haven't left her alone.
Praying for you all.

Lemon, your darling Mum isn't miserable with you and your Dad, she's had enough of her struggle. You've all been with her through this, probably knowing the inevitable is coming for quite some time, no wonder you are all exhausted. I take my hat off to you and think you are all amazing being so strong for so long. I don't know what else to say as nothing will make you feel better. She will still know you're there so keep playing music to her and talking gently, stroking her hair and her face. Sending you a hand squeeze and a hug. You truly are fantastic.

I agree you really are bloody amazing Lemon. I got to the point in the last few days of Mum's life where I felt I couldn't 'see any more'. Literally was a shaking, exhausted, petrified wreck. I feel guilt to this day that I didn't find the strength to be there with her at the very end. It truly is traumatic and the fact that you are still going in and just being with her is courageous and strong.

I think you never feel you are doing enough for your loved one. Basically we are powerless to make the situation easier. But you are there, you have and are doing so much. I have seen lots of people die but I couldn't be there at my Mum's death. I couldn't be objective or 'professional' and I was too exhausted to be rational. I have so much admiration for you and am willing you on and wishing you strength. I know saying "Don't feel guilty" is meaningless if you do feel guilty about not doing certain things. But truly you have NOTHING to feel guilty about

I had a wee sob and then rubbed the lavender hand cream all jnto her arms and hands and tucked the lavender scent packets under her pillow. Dad vetoed my oil burner idea because it eill "stink the place out". My Dad and bro are weirdos and they thinj everything 'stinks' even if its just a smell.

They managed to remove the wedding rings from her poor swollen fingers. No one has said it but I guess me and DF are staying over again.

I wish I could get her to drink. Her skin is so dry from dehydration but she just wont respond to take it the water then often it just dribbles out. Theyve got the swab thingies but surely being that dehydrated isnt comfortable.

Can't think. Growling churning stomach ache.

I truly love you guys for writing to me all the time; these four walls are making me insane!

Oh darling Lemon

Don't you dare feel guilty or think that what you've done isn't "enough". You have done so much, and the love you have for your mum seeps from every post.

Your journey has been a long one, and I'm so sorry it hasn't been an easier one. Not that it is ever "easy", but yours has been exhausting to top.

Take pride in the care you have given to your wonderful mum, and to your dad and brother. With time, I hope you look back on this time and think "I did good". Because you should, and I don't think a single person on here would disagree with me.

I'm thinking of you all. I don't pray very often (God has more important things to worry about than a whinge bag like me!) but I hope you won't mind if I offer up a little one for you and your loved ones xx

You sound such a sweet person Lemon. I am truly in awe of the things you are doing knowing how incredibly hard they are to do.
If you can use the swabs or just drip a tiny bit of water into her mouth to keep it moist that's enough and dabs of vaseline if her lips are dry. She won't be able to deal with food or drink at this stage buta dab around with those swabs or a tiny bit of liquid or a gentle mouth spray will be refreshing if she doesn't mind. Even if it dribbles out at least her mouth will be moist.

Are you able to eat a little bit or are you too churned up? If you can't face food then something like Complan or Build Up Shakes will give you a bit of energy and you can just keep sipping them rather than having to chew/swallow and get food down which can be difficult when you are very stressed and upset.