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

Kahlua4me Tue 05-Feb-13 10:27:39

Sending you lots of love today Stoic.

We lost my dear step father a few years ago. He went into hosp on boxing day with pneumonia and died 10 days later.
I found that the main thing that helped the dc was talking about him and them knowing it was okay to cry whenever they needed to. They saw me, dm and db cry frequently but also saw us smiling when remembering things about him. Follow their lead and answer questions as they arise.

Also my dad died when I was 20 and the same then, as I found that being able to talk about him really helped mr.

Wishing you strength and peace.

Kahlua4me Tue 05-Feb-13 10:28:02

Me not mr

StoicButStressed Tue 05-Feb-13 22:23:45

Thank you all againthanks. suberbophobe - am just in shock at reading your news, my heart breaks for you and I can only pray that today was all you wanted to be. Sending MASSIVE hugs & love.

My Mum's syringe driver DID have to go in yesterdaysad. Did log on to post here but got sidetracked by the 'smacking' headline (aka probably in denial and that was easiersad). Been horrific day today. I nearly fell asleep driving yest and exhaustion is now just profound and to very core of me. Then today both DS2 (18) and DS3 (11) were off school as just not very well so was trying juggle taking care of each of each of them/monitor meds and to who/and cook loads diff meals - am truly more exhausted than can describe. Will though try post tomm but off to hit sack (with a sleeping tablet as struggling both to eat and to sleep, but know I HAVE to sleep or no use to anyone).

Hugs to all and Suberbophobe, you are in my heart hon and thinking you and yours lots xxxxx

Lostonthemoors Tue 05-Feb-13 22:56:21

Hugs to you Stoic. It sounds as though you are looking after everyone the very best you can.

Hand holding on offer here whenever you need it.

xxx

Theas18 Tue 05-Feb-13 22:58:02

Stoic thinking of you today. Cyber hugs aren't as good as real ones but I hope they help flowers

Suburbophobe sending hugs and prayers for yor family too flowers.

Thinking of you Stoic.

Suburbophobe, I'm so sorry for your loss. I hope the funeral was not too gruelling for you.

lemontruffles Tue 05-Feb-13 23:52:02

Another one thinking of you stoic. Hope you are sleeping tonight and wake refreshed. You sound like a wonderful, caring, loving, kind and thoughtful mother and daughter, my heart goes out to you. .

Suburbophobe, have also been thinking of you and hope that you are alright after the funeral today.

3girlies Wed 06-Feb-13 09:26:26

I am so sorry to read this, I was in a similar situation with my daughter 7 mths ago, she deteriorated so quickly, it was over 24 hours, by the time we had the syringe driver she was unconscious - she was talking to me and went in the middle of a sentence. I never had a chance to say much to her either. It was expected but still horrific. She was unconcious and on the syringe driver for about 12-14 hours before she died. In lots of ways, I am glad she did not linger on and suffer, but the pay off is that she left us very suddenly it seemed, I thought we might have a month or so after we had the bad news, we only had 17 days it turned out.
Sending you love and strength at this most terrible of times. XXX

StoicButStressed Wed 06-Feb-13 10:33:44

Jesus, *3girlies, am so so sorry to hear of such an horrific loss. This is hard enough but thought of losing a child (which I nearly did once), is beyond pale. Bless you for taking time to write to me, and please accept my condolences (and sorry for very lame & HOW shit a word is that? Sorry, this kind of sit'n really does bring to life that 'All language is a lie' quote - as there simply are NOT words/language that can convey the horror of it). I am aching for you as I recall my utter terror when was chance one of my DS's may diesad.

All - as ever, TY for messages & support. So know, whilst syringe driver HAS now gone in on Tues. (& Thank God after the horror I witnessed I witnessed on Sunday as she struggled take meds orally with consequences so horrific am not even going describe them here), it has done in but WITHOUT the sedation med - i.e. remains Morphine/anti-emetics/sleeping meds for night etc, but NOT the sedation element which was DIRECTLY the one that enabled them to be so very honest with me on Friday re pretty clear window. In some ways is a a blessing as she is obviusly still here, but in other ways (& even saying this makes me feel bad but it is a truth) it is not good in that she really is just 'existing', plus it leaves my DS's with uncertainty and ongoing (if that makes sense??) daily 'worry'. The irony is that I DO absolutely know what my Mum's view were on stuff like this is (as we had had many a discussion on all sorts, including recent cases where people were desperate for 'it' to be over but prevented by the law - whilst same bloody laws allow a timely and peaceful end for frickin animals??? - and her view was SO very clear re what she would want if 'ever' <sad hollow laugh here> in that sit'n herself).

DS3 (just 11) said last night "but why can't they put the other medicine in that would help her 'slip away' peacefully and now?". Answered as best could then went upstairs and just wept and wept and wept.

Leaving shortly see Mamma now, but still have 2 DS's ill at home, AND the now near imposs task of trying make proper plans for them for 'end', given what 'knew' - however shocking/sudden/horrifc it was - on Friday now no longer the case even though syringe driver in. All they can say is it's now "day by day"; "could be today/couple of days but could be few weeks".

Genuinely do not know how much more can take of this - is all just horrific beyond words.

DonkeysDontRideBicycles Wed 06-Feb-13 10:42:10

<Hand squeeze> it is dreadful and I can only send you strength, somehow you will endure and there is nothing wrong in wishing peace for your mum; of course you don't want her gone but no-one wants another to suffer. Sorry too your boys aren't well.

StoicButStressed Fri 08-Feb-13 12:29:39

Thank you for hand squeeze Donkey & Thea et all for cyber hugs. All boys now back at school today and I'm here. She is slipping away now, but is very very peaceful, just sleeping. Nurses say (as sedative not in, so no certainty now) will be anything from a couple of days ago to a couple of weeks, but they think more imminent than that given the slow but sure decline in vitals over past 48 hours. Sorry haven't posted but weirdly have found it much easier to read/post on other threads (do check out the joys, vitriol, and polarisation on the smacking one if not yet seen it - is genuinely stupefying) than here. Also - and again weirdly (or maybe it's normal, I have no idea), I can't listen to music at the moment or read properly (as in books which I am usually just absorbed by, not mags or posts on here etc). Thanks all again for all, genuinely helped so much, especially last Friday/Saturday.thanks

Hi stoic I know that feeling of being anywhere other than on the thread most pertinent to you. I have stayed away for a couple of days because I found it bringing back difficult memories, but I have been thinking of you, you are following the path I was nearly exactly a year ago.

It is the toughest thing in the world seeing a loved parent slipping away, the desire to keep them for as long as possible, but also wishing it could be over for them and also (feeling selfish here) to be over for you as well. It is exhausting in the extreme, all the worry, travelling, emotions, trying to deal with other family etc etc.

I was lucky to have my dsis with me when Mum was in hospital. I can't imagine how hard it must be for you sad I am sending hugs and as much strength as you need to get through this xxx

OhThisIsJustGrape Fri 08-Feb-13 14:27:37

Oh Stoic, things are so tough for you. You and your boys and mum have been very much in my thoughts each day.

Not being able to listen to music - you may find that this is a good thing actually. Songs hold powerful memories and I can be completely knocked sideways if I happen to randomly hear a song that was in the charts when my mum was dying - even now, 15yrs later. For same reasons I can't bear to listen to 'Yesterday' by The Beatles as it was on a cd I had on in the car after being told mum was going to die.

Totally understand why you find it difficult to post on this thread, please don't feel you have to. Sometimes it's easier to escape from reality - as often the reality is just too much to bear sad We will all be here to support you and hand hold if you need us though smile

Theas18 Fri 08-Feb-13 16:59:43

still here for you Stoic ((())))

t875 Fri 08-Feb-13 17:29:14

Thinking of you Stoic {{{hugs}}} I look back and see now how the hell I got through that time of waiting for my mum to pass as we knew she wasnt coming back to us it took 6 days and it killed me going back and forth. sad

Feel for you Stoic and also holding out a hand to you. xxx

bamboozled Fri 08-Feb-13 17:40:20

Thinking of you and your loverly boys x

t875 Fri 08-Feb-13 19:58:18

re-reading my post, I meant to say i wish that a miracle was going to happen and she was brought back to life, it broke me up each time to leave her knowing that it might be the last time. sad

Thinking of you and your boys xx

ilovesprouts Fri 08-Feb-13 20:41:54

sad

StoicButStressed Fri 08-Feb-13 20:50:51

Thank youthanksthanksthanks.

Maybe, you are so bang on right - it really is exhausting in the extreme; the combo of not sleeping, nada appetite, rushing around, the swooping emotions. I had a fall on faint when alarm went at 6am and I got out of bed to get boys ready - was nightmare, room spinning like drunk (but without the earning it via way too much wine) then passed out. Scared the sh*t out of me as well as obv had get boys to school, but more importantly get to see my Mum. Got taxi for boys (just wasn't safe for me to drive) but managed drive later to see Mum before going back to school to collect boys. Have taken sleeping tablet to ensure sleep tonight and will try take it slightly easier over weekend (oxygen mask on first/aircraft thing) as if I buckle, ALL will be hugely affectedsad.

Oh You're right re the power of music (which is why I can't listen to it) but I do know if I need an 'outlet' button then it's right there as is immediate 'crack-up' trigger... And T875, OMG I so so SO get what you mean. Now at point where every time I kiss her goodbye, I wonder if it's the last time I willsadsadsad. I find myself saying goodbye but unable leave the room and then popping head back round to do it again - reminds me of when was very little and if we were on phone and would do that "love you", "love you too", "you hang up", "no, you hang up first" thing.... Apposite memory as feel about 6 years old at the moment... I just want my Mum to make it all better, but of course she can't and she never will again. Just excruciating. So so so fucking hard & I ache for all either in same situation now or previously - sending YOU hugs back.

Thank you all for messages, they really do help and being able to write here offers me an outlet (if makes sense?). So TY you, all of you. xxx

Lostonthemoors Fri 08-Feb-13 20:56:30

Just sending you some love.

xx

melrose Fri 08-Feb-13 21:42:23

Just wanting to say you are in my thoughts and prayers, you are being so strong at such a hideous time. Lots of hugs and love to get you through the next few days and weeks.I wish i could o something practical to help you, but sadly i am miles away xx

grumpyoldbookworm Fri 08-Feb-13 21:55:58

Good luck. Have been there as mum died 2 weeks after a hit and run ( driver was caught later though). Suggestion is to print photos of your mum and yours DSs and put them by her so that nurses can see her in the context of who she is. Also warn the boys, even if only by a few hours, so that they can adjust. When we wrote the eulogy for my FIL last year DS1 said ' one day I'll have to do his for you' which may be true... Hugs

Stoic that's scary shock Could you sleep next to your dMum a bit? It's so difficult trying to grab forty winks as and when, and of course your brain is so wired, it's impossible to switch off... I remember sleeping with my mobile right next to my head for a few nights, we had a few false alarms but we'd told the nurses we wanted to be called if they were at all worried Mum was near the end, that was hard. heart pounding etc etc. I have no advice I'm afraid, unless could the sleeping pills be contributing to the fainting? I know they make me really woozy next day...

You will get through this though, and in future will take some comfort from the fact you did everything you could for your dMum.

t875 I too am wishing there could be a miracle. brief hijack have been staying away from 'our' thread for a bit, infact have barely been on MN, I needed to reconnect with my family a bit rather than do all my grieving online. However, I have been thinking of you all thanks Having said that, here I am blush

StoicButStressed Sun 10-Feb-13 09:39:59

Hard to stay as sadly she is in 'care home with nursing' rather than the hospice she was meant to be insad, so no facilities for relees to stay in room with her, plus have the boys to check on. Woke at 8 this morn after asleep at 4am, but TGod no faint this morning (trying look on bright side here!).

Yesterday was worst day yet, truly horrific. Mum was in such pain and nurses took over half an hour to get her PRN/'breakthrough extra morphine (again made me just wish she was in hospice as no way would they have taken that long; it's only as home has just two nurses and you need 2 to sign controlled meds out, so that meant mum had to wait in - utterly heartbreaking - pain until both were free to sign the bloody controlled drug registerangry). And for the first time she was also in just in TOTAL distress, asking to go to the loo (as morphine obviously stopping her remembering she CAN'T 'go' to the loo now) getting very panicky and then crying. Was pleading constantly 'please help me', 'please help me' - worst seen so far (& f*ck knows already seen so much). She was then eventually administered the sedative that has been left out until now, so it's going to be soon now.

Sad but just relieved that once she had PRN and sedative she was pain-free and peaceful. Her breathing was so laboured at one point that I honestly thought it was the end, she would take a long shallow breath and then nothing for what felt like ages and which is new now. And had that noise in her throat (I just can't write the word/s that's normally calledsad), I really did think she was going to pass and sat with her for hours just holding her hand. Once pain had gone but before sedative in, she just kept repeating over & over 'please just let me go to sleep' and I think I know what she meant. Was willing her (through love, not anything bad) to please just be allowed to slip away - no-one deserves that sufferingsadsadsad. Am just going back now but do know she had a peaceful night as have already rung to check so am profoundly grateful for thatthanks. Have put lovely pic that will keep forever of our hands on profile xxx

That's a beautiful photo, am glad your dMum was able to speak a bit to you too. I hope they manage to keep her peaceful now, much easier for you as well ( I remember the distress only too well - your being there will have been a comfort though) and that she will just slip away into peace.

Oh Stoic I wish someone could be with you going through this, but we all are here from a distance and sending as much strength as we can for you.

How are your dc today? This is tough on them for different reasons.

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