Please help me TODAY - Mum/DS's nanny is probably going to die this weekend.

(146 Posts)
StoicButStressed Fri 01-Feb-13 11:53:17

I can't believe I'm actually writing this. Or that need very urgent advice/guidance/experience that might help my three beautiful boys, all of whom love their nanny very much. My mum is about to die.

I had to take my Mama into hospital on August 13th last year as she was in >pain and had >nausea. We got there at about 10am. 2 hours later I was (unfortunately) WITH the radiologist as the grim digital image popped up showing a vast tumour in one lung and white snowspots (I.E. Mets/spread) throughout the other. I knew immediately that she had Lung Cancer, that was almost certainly stage 4, that she was going to die. That was confirmed not long after. She also developed bone cancer and cancer in her head (not brain, but head). She was still very 'alive' initially but went downhill quickly, losing most of her voice due to pressure on vocal cords, and obviously more 'out of it' as Morphine doses rose.

She deteriorated to point where 3 weeks ago had to be moved to a nursing home as Palliative Care at home just could not manage the painsad.

I & DS's could not see her for that first week in home as we had contagious icky bug, then the snow meant we literally could not get there for most of second week. When I first saw her there, was just agonising in how much had worsened. Frail, tiny, barely able to speak, drifting in and out of sleep. Last few days worsened yet more, with (literally) only a couple of minutes at most of lucidity before drifts to sleep/unconsciousness. But I genuinely thought we were still looking at few weeks minimum, or maybe even a couple of months. But today was told is now very opposite.

She is now really struggling to swallow tablets at all (which vital as her pain is so very horrific), so nurses told me this morning that she does now need a syringe driver put in, and that after that it would probably be 'quite quick'.

I asked them to please PLEASE just be very direct & honest with me, which they were and I do not doubt them as these are people with 40 years palliative type care experience each (so please please do not post telling me to hope for more etc, as if it is more that's amazing, but I can't really hope for that and HAVE to focus on realities RIGHT NOW). The 2 huge and SO sudden things are that once the syringe driver is in with the increased level of morphine she needs and the sedative that will also be in it, that they have been very clear she will not speak again - as it is even now, is literally just the odd period of lucidity and talking very quietly in tiny voice, or nod, but after this will be nothing and I don't doubt them. The second is that they believe she will go into a coma and pass this weekend, mid-next week at very latest in their opinion/experience. I honestly thought it would be at least a few more weeks yet so whilst me & DS's do know she is dying, this is very very sudden. And is worse given THEY too couldn't see her for the first 2 weeks of past 3 since in the nursing home.

I have asked them to hold off on the syringe driver until tonight so DS's (11, 18, 21) can see her and her speak to them as that will be the last time they do ever hear their nanny/can talk to her (though do know we can all carry on talking TO her as hearing is apparently very last to go). And - thank god - she has now managed to swallow her ton of meds this morning so they will last until 8pm. But literally - and I can't even believe I'm writing this - tonight is the last time my Mum will ever speak to me.

All I can think of is the boys and what/how to tell them - & also how the f*ck I am going to urgently get DS1 home (no, can already be certain he won't have the money for a train as is student and always runs out of cash and haven't even yet rung him as am absorbing news and trying sort all out very quickly) but he is in college in bloody Brighton and we are on outskirts Surrey/London border - but I have be here to get the other 2 from school soon and obv cannot then leave them, though cannot begin to think about how they will react (ESP 11yr old). And that's what I'm terrified of/need help with please?

So if you have ANY advice or experience etc for me about that, about how I can help them, how to phrase it - ANYTHING AT ALL that will help in this horrific and beyond time-critical situation, please please PLEASE help me as soon as soon as you can possibly can xxxxx

I really can't believe that my Mum is never going to speak to me again after tonight, or that they think my mum is going to die this weekend. Think am in total shock, but if you have ANYTHING that can help me help my boys, please please help me. xxxxxxxxthanks

suburbophobe Sat 02-Feb-13 00:19:06

I am taking comfort from reading all these posts and everyone's input.

It makes me feel less alone....

thanks

t875 Sat 02-Feb-13 10:59:23

Oh Im so sorry to read this OP. I lost my mum to a massive stroke 8 months ago, we knew she wasn't going to make it after a few days as they said she was brain dead. But was with her for her last breath after a week, was a massively hard time horrendous in fact, and still get hard days now as miss her massively.
with the children, we gave them the choice to go to the hospital and say good bye, we told them that nanny was very ill and was in a deep sleep and the dr's are doing all they can but she might not make it.. sad
they went and saw her they put a teddy with her in the bed and we all told her how much we love her etc, and like you say i believe she heard as the hearing they say is the last to go.
when my mum had passed, they had special things of theres go in with my mum and they done a picture, i also put things in with her, and i love you mum soft toy, and photos.
They were very upset after my mum passed but not too bad, better than i thought they would be, my eldest got frustrated and angry for the first few months and wouldn't talk about her, i didn't push it, and was there for her when she wanted too on the fleeting moments she did, she has come round a bit more talking about her, youngest was a bit more different, she was matter of fact but spoke about her a lot and cried. They both aren't too bad now, we do things in memory of my mum, to keep her spirit alive.

we have a thread here called losing a parent im sorry i cant remember the whole link but please find us there too, it is very supportive and helped me a lot.

Also there is service called winstons wish who are bereavement for children who have lost someone close to them.

Thinking of you and sending (((hugs))) through this very hard time. xx

StoicButStressed Sat 02-Feb-13 12:26:11

Hi all, and thank you all again so so so much for lovely messages - please know they helped me hugely yesterday when i had very little time (& was in deep shock) to make decisions vis DS's, what I said to them, how I presented their options etc. Will post properly later but headlines are firstly that the syringe driver has NOT still yet gone in as she managed swallow meds last night and this morning. We will need to make a decision re it tho as clearly the 'swallowing' bit was the driver of the urgency, but the pain relief element still there. I had been up all night Thurs so last night was first sleep since Weds and slept midnight to 11.30 - was staggered as thought I wouldn't sleep at all even tho body just so beyond exhausted. Have to go soon but wanted post, say TY, and update, as know you care (& cannot tell you how much that means to me as I am very isolated ATM for a variety of reasons, so TY TY TY all).

Headline re DS's were they were just beyond amazing. All came even though was very harrowing, all spoke to her and told her they loved her, all held her hand, and all cuddled each other as each of them wept. I have never ever been so proud of them collectively - they were just incredible.

Again, thank you all so much, am profoundly grateful, and please keep on thinking of us as weekend unfolds.

thanks thanks thanks

Lostonthemoors Sat 02-Feb-13 12:30:52

Have been thinking of you constantly since you posted - we are all here for you. Have been looking out to see if you might post again.

Very pleased to hear your mum was able to take the pain relief orally.

Your DS all sound absolutely lovely and it sounds as though they were really there for their nanny, you and each other last night.

Love and hugs to you.

xxx

StoicButStressed Sat 02-Feb-13 14:34:02

Bless you Lost - your username is funnily enough exactly how I feel right now. Lost and no idea of route ahead and not much resource to help me get there (wherever 'there' is). My immediate concerns are that I KNOW I want to be with my Mum at the end - OMG I really STILL cannot believe am writing this, I literally just cannot believe this is happening - but have major concerns/practical issues try and sort. If I camp at nursing home in my mum's room from when they say is likely 48hrs or so, how do I get my 2 youngest 2 DS's to school? Lucky enough to have someone staying with me atm to feed them etc but they can't drive and no-one to ask and can't afford the four journeys in/out to school (too complicated to explain WHY both so isolated AND so skint compared to normal but other posts of mine will fill that in, but headline would be I have had to protect DS's privacy due to horrific stuff c/o Ex-H, and it was that same horrific stuff that made me have to stop my - beyond lucrative which makes fact I can't afford 4x£15 cabs even more fricking horrific right now - career).

Am just lost and scared and alone (not WITH boys) but in adult sense, and just stuck and trying to make the right choices for them but at the same time be able be with my mum - the idea of her being alone when dies is just too horrific to contemplate, and I know if I am NOT there I will regret it for the rest of my life AND feel beyond guilty that she DID die alone.

'she did die alone'...How is my mum so very suddenly dying, I literally just cannot get my head round it and am in an agony that can't find words forsad

xxxxxxxxxxxxxxxxxxxxxxxxxxxx to all of you, esp Suburbphobe - sending you SO much love, and you have been in my thoughts constantythanks

BiscuitMillionaire Sat 02-Feb-13 15:03:56

Stoic: wanted to check in and see how you're doing.

On a practical note, could your 18-yr-old stay at a mate's house, someone who lives closer to school, and travel in and back with them? And could your 11-yr-old miss school for a couple of days?

Take care, hope you're eating and drinking, glad you got some sleep. Make yourself a cup of tea.

Theas18 Sat 02-Feb-13 15:19:25

Gosh sending you huge hugs at this sad sad time.

Walking your path a few steps behind with my dad I fear and it's is really hard.

talk mum you love her and will be with her on her journey. Be honest with the kids-a church friend died recently and my uni daughter was sad she didn't know he was I'll .she wouldn't have come home-he want that close but she would have wanted to know and we didn't think she would).

Gather your chicks, hug them and take them to say goodbye. Personally, especially the adult ones I'd offer them a place in the vigil just being there for their gran. Death isn't to be feared, and it is rarely anything other than a peaceful release in a terminal illness. don't deny the kids there post in that if they would rather be there.

Equally viewing the body before the funeral-let them choose. A last goodbye and realisation that it isn't really the "essence" of the loved one, but a shell that us being cremated/buried might help.

praying for a peaceful death for your mum and a prepared parting for you all.

Theas18 Sat 02-Feb-13 15:22:47

Btw please please don't be fearful about your mum dying alone. I deal with death at work, and, I'm sure some people do choose to take their last breath without family there. It's how it is.

DystopianReality Sat 02-Feb-13 15:29:37

I am so, so sorry, your post made me weep. I lost my beloved father a year ago.

They will make it through,, but will you..? You sound as if you could do with lots of support,, I will be thinking of you.

I was in your position 11 nearly a year ago, same illness, same distressing rapidity of deterioration. My dd wasn't with us (had to go home back to school) and I found a letter to Granny saying she didn't get to say goodbye. It hurt so badly. Well done for getting all your lovely children there, really glad your dMum is managing to swallow the pills for now.

Practicalities - tell your dcs schools what is happeneing, they may have a teacher near you who could drive the children in to school or have other ways of dealing with such scenarios (must happen from time to time). If not, then the children my have to miss a few days of school.

At the moment, concentrate on your dMum and being able to be there. We are all here, happy to talk if you need us. It's a tough thing to do, I hope you have some support afterwards. Are you in contact with MacMillan?

have been thinking of you today, you have done a good thing getting your children there but please take time for you and what you need. I'm three months on from losing mum and I still don't feel back to myself. always here for a chat.x

StoicButStressed Sat 02-Feb-13 16:27:44

I am just leaving to go to the nursing home to say goodbye to my - lovely, amazing, loving - Uncle who flew in on Weds to see Mum (Mum and him from SA, so he came to see her) but is leaving here for airport at 5. Dreading saying goodbye to him, but also aching for him as he knows/we know that when he says goodbye to his sister he will so very literally never, ever see again.sadsadsad

Thank you all again for messages, you can have NO idea how much they mean. Will post later if can after said goodbye to Unc and seen my Mum again. Sending my love to you all re your own losses and the fact you have taken time to try and help/advise/offer support etc to me - very grateful xxx

StoicButStressed Sat 02-Feb-13 16:28:34

PS do any of you who have so kindly said to PM you or chat live anywhere in/around Surrey? xxxx

am north west so nowhere near but happy to pm or email if u need a chat. hope things go as smoothly as possible x

thinking of you.

i am in Essex but please pm me if you ever need an understanding ear xx

t875 Sat 02-Feb-13 17:36:36

oh I so feel for you what you are going through, it really is very hard.
Each time i said good bye to my mum in case when we left she passed away.
we were with her a lot, all day the Thursday, she started deteriating and we could see it, we left like normal on the Thursday evening at 6 we were going to go and grab something to eat and come back, we got a phone call an hour after telling us she had passed away.

Due to my beliefs I don't believe they are on their own when they pass, but I was gutted I hadn't been there, but I think she had other plans for us not to be. We saw her not long after, i truly feel and believe she didnt want anyone there.

Thinking of you and we are here for you, this forum has been a massive support for me. big hugs for the time ahead xx

Theas18 Sat 02-Feb-13 17:46:28

West midlands here, but sending you another hug.

DonkeysDontRideBicycles Sat 02-Feb-13 18:15:48

Sorry am up north but sending you comfort and strength. Say everything you wish to, she may not speak but they say hearing still keeps a patient aware beyond when we might think they can't listen. Reassure her she has done so much and you will miss her but you are ready to cope and will look after her loved ones as much as you are able. As Theas18 observed there is often a short window before those closest arrive or just step out of the room for a moment. Often he or she will slip peacefully away.

My DD wrote a note for my DM and kept it under her pillow for weeks after she passed. If you show your DCs grief they will know there is nothing unnatural in mourning someone. Things are bound to be strange and feel disjointed so routine helps to keep everyone grounded. Better to shed a spontaneous tear than guard against showing emotion.

StoicButStressed Sat 02-Feb-13 19:15:59

Missed my Unclesad. Devastated (understatement).

Mum sleeping peacefully when left. She was able speak a tiny bit at moments, though voice is so very small now it can be hard to understand at times. I was just talking to her about lot of stuff, the boys etc, even when I thought she was asleep; and when I said "how amazing is it that DS2 has got into Oxfordsmile " she opened her eyes and said "I'm so proud".

Was just beyond precious. I know I will remember that moment forever.

OhThisIsJustGrape Sat 02-Feb-13 19:28:11

So sorry you missed your uncle
hmm

What a lovely, albeit bittersweet moment, with your mum saying how proud she is - its memories like these that you will draw comfort from in time to come.

3 days before my Mum died it was hers an dad's silver wedding anniversary. Dad spent a fortune on an eternity ring for mum, she had always wanted one but dad didn't do jewellery, I think he thought it a waste of money. He would've done anything for her though at that point and gladly bought her the ring. The night she died, about 6hrs beforehand her best friend came to say goodbye. Mum had been pretty much unconscious all day but she heard her friend's voice and lifted her hand to show of her beautiful ring. There wasn't a dry eye in that room. And it's things like that that I try and remember because any other moment is too traumatic to dwell on.

Practicalities wise - it will literally only be a couple of days or so that you will remain a constant at your mums bedside, under the circumstances I don't think it unreasonable for your boys to miss school. You don't want to be rushing around trying to get them to school and then being scared of not being there for your mum - that way lies a potential accident in the car IMO. Let the boys stay home and you can then concentrate on your lovely mum.

I'm nowhere near you unfortunately otherwise I would gladly drop everything and come and hold your hand. Please do pm me if you need to talk or ask any questions.

Will be thinking of you, wishing your mum a peaceful night x

Sending you hugs and hand holdingthanks

Seeing someone so close, suffer so much is unbearable.
I Iost my teenage brother to bone cancer, he was in so much pain i wish i could have taken it awaysad
I hope i never live to see cancer take anyone else like it did him & my nan.

I told my dd when my brother was in the last stages, i can't remember how i told her as i have tried to block out all the bad parts and prefer to remember my bro in happy times before the disease took such a hold.

My thoughts are with you op, make the most of every moment however small that you have with your mum.

Even after he was dosed up on morphine and asleep most of the time, there are still snippets when he spoke or mentioned a funny story and i'll cherish them forever.

I don't know whether your mum is at all well enough for pictures, but if she is make sure you get some pictures.
I took many pictures months before my brothers death, i have them all stored on my pc, so i have plenty of memories of the good times & obviously not so goodsad

Take care opthanks

suburbophobe Sat 02-Feb-13 21:41:10

please please don't be fearful about your mum dying alone. I deal with death at work, and, I'm sure some people do choose to take their last breath without family there. It's how it is.

Thank you Theas for this. It's my feeling too. (Saw it with my dad also).

My sister on the other hand feels as if she is abandoning our mum...(if she is not there at the end).
She's a super-organiser control freak anyway....

Sometimes though, you make them feel as if they have to hang on if you bring a lot of emotion into it. (their passing)....

Better just to let them go and bless them onto their next journey.

"You come in alone and you go out alone".

Whatever happens between that is a blessing and a learning.

Lostonthemoors Sat 02-Feb-13 22:07:25

Crying here about your lovely mum saying how proud she is of your very clever DS.

xxx

Stoic offering you a hand to hold and a prayer tonight.

When my MIL died 10 years ago it was extremely sudden and no one had a chance to say goodbye. So although your situation is extremely, extremely painful it is good that you have this period, albeit short, to be with your mum. And lovely that there is so much affection between you all. Not the case with every family.

I'm so glad that your boys had a chance to see her and tell her what they needed to. That is quite something and you are right to be proud of them.

I'm with the posters who say that missing a couple of days of school isn't the end of the world.

So sorry your ex has behaved so atrociously. As someone else said, please don't waste any more energy on him.

I'm not far from you -- in west London (grew up in Sy) but as you know my plate is very full right now. I really hope that you will find people to help you in your very difficult situation. Are there no other family members you could call on? Friends? Neighbours? I'm very bad at asking for help but have had to learn to recently and I've been bowled over by how kind people are. Sometimes you just have to ask.

Big hugs and hang in there.

DonkeysDontRideBicycles Sun 03-Feb-13 01:52:14

Prayer for you, remember you're not alone.

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