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

Hippymama Sun 10-Feb-13 19:43:19

Sending you strength xxx

t875 Sun 10-Feb-13 23:42:37

Sending you love and support to you and your boys stoic. Thinking of you.
I'm here also if u want to pm. X

DonkeysDontRideBicycles Mon 11-Feb-13 13:29:08

It may be too tough to post right now but if you read this, many are holding your hand don't feel you are alone. Thinking of you - gather your boys close x

AmberHare Mon 11-Feb-13 21:07:18

Just wanted to say that I'm thinking about you. Not sure what else to say. Words seem so useless. Wishing you well during this difficult time xxx

StoicButStressed Tue 12-Feb-13 15:01:36

thanks all xxx

Nurses pretty sure will be this week given now on syringe driver with full sedative dose, but so hard to see her looking so 'gone' already but still here (IYKWIM?) Finding it very hard to be there (& feeling guilty at feeling that in turn) and am just so so tired. DC's all seem ok(ish) at mo but obviously watching them carefully and talking to them as much as they are comfortable with.

Thank you all again for thoughts and messages xxxx

CharlieBoo Tue 12-Feb-13 17:04:47

Am thinking of you Stoic and have been following your thread. Thoughts and prayers with you and your family. X

You are in my thoughts....be strong xx

GladbagsGold Wed 13-Feb-13 10:23:34

Just read this thread. Your poor wonderful mum. Have been in slightly similar situations and really empathise with what you're going through. Sending you love and strength and energy.

suburbophobe Wed 13-Feb-13 11:47:41

Stoic, thinking of you and big hugs in this oh so difficult time. I'm holding your hand.

And to everyone else who's been or going through similar.

Thank you so much for your lovely words everyone.

The service for mum's cremation was beautiful. Lots of people there. It wasn't a religious service but the guy who led it was great. He even read from Kahlil Gibran, who I love.

Feeling more peaceful now. But it's very up and down.

thanks

StoicButStressed Thu 14-Feb-13 03:03:00

Message withdrawn at poster's request.

saffronwblue Thu 14-Feb-13 04:14:35

Stoic, here is a hand to hold. Losing a parent is so hard, and watching and waiting is so draining. Thinking of you.

CheerfulYank Thu 14-Feb-13 04:49:12

Just read this all and am thinking of you. So sorry this is happening to you and your Mamma.

Alad Thu 14-Feb-13 05:36:35

I've been through this myself. It is hard. Death when it comes is a release for all and I know this might sound odd, but it's quite beautiful when a loved one passes. It's a relief.

The stress of waiting is hard. You will of course feel guilty/sad/angry - this is normal and is all part of grieving.

Let the medics do there job. Ensuring your mum is as comfortable as possible is really the priority.

You must also remember the happy times - death, sad and terrible is natural and we can't stop it - only maybe delay and this isn't always the right thing to do.

Everyone here feels for you and your family. Stay strong. God bless.

Oh Stoic I can remember the sheer exhaustion. It's like a marathon that never ends, but it will at some point in the near future and you will be able to put yourself back together, with your lovely dcs. Is your sister pulling her weight being with your Mum? Migraines pick the worst possible times to appear - you have no control over them (I am a sufferer too) - ignore your sister if you can.

Much love, I wish I could come and be with you.

It's my dMum's first anniversary, I can't believe it, so I will be with my Dad, but I'm thinking of you xxx

weegiemum Thu 14-Feb-13 18:31:33

Stoic, I went through this with my gran 5 Yeats ago when she died - I was 37 and it was no easier.

My dh is a GP in a very rural area and a "home hospice" provider. He always says that apart from a good life, the best thing a doctor can give is a good death, and he always regards it as a privilege to be part of that for his patients.

Just keep talking to her, holding her hand. The last time my Gran made an effort to open her eyes was when I sat beside her - I'm welling up now and that won't help you, but it was not only sad, but very special, being from a "broken home", my Gran was the one constant thing in my life.

I don't know if it helps, but I will be praying for you all.

Weegie x

StoicButStressed Fri 15-Feb-13 12:53:58

Thank you all so much, especially when you're sharing stuff that must be very painful for yousad. It does really help, so thank you. Yesterday was awful, it was the first time that my mum really, really, had no clue I was there or even who I was. The day before, even though she was unconscious, whilst I was holding her hand and talking to her about lots of things, when I paused for a minute and then said "I love you Mumma" she immediately and suddenly squeezed my hand. Was comforting to know she knew I was there and that was right in that hearing/some kind of thinking are last things to go. But yesterday was just nothing. Nothing apart from some awful moanssad.

I do just wish for her - and for us if honest - but mainly simply for herself, that she could be released from this. Is inhumane as she is still getting fresh breakthrough pain but at limit of her meds so nurses won't give her any more. Is just savage and seems so so wrong and brutal. My DBinLaw is now back (him & my DS are expats now) and he is being great in terms of practicalities and has - in nicest way possible - been clear we need to start looking into/making funeral arrangements but that just feels beyond my comprehension or even ability right now, both as she IS still here and also as brain just so non-existent right now. I do though know (thank god) what my mum did and did not want, but have no clue how to go about it. Am going to start a thread asking lovely MN'ers for advice and will post link here when done that.

Thank you all again, I really am just lost and am so very grateful to you for taking the time to write. xxxx

DonkeysDontRideBicycles Fri 15-Feb-13 13:23:06

Am keeping an eye on this thread and hope your DM finds peace and rest soon, Stoic. Am sure if she cannot acknowledge you being there on some level she knows you are close. Please don't feel bad or guilty about needing rest yourself to re-charge.

The brain is such a complicated thing and there is so much we don't know but I strongly believe in cases such as your mum that she will know you are there and will be comforted by your presence and voice, even if she can't respond. Hang on to the thought that you are giving her comfort. Don't worry about thinking about future arrangements, concentrate on your mum, yourself and your dc's.

MrsAceRimmer Fri 15-Feb-13 14:00:39

I've no advice but am so sorry for you and your family. Sending you all big massive hugs xx

Lostonthemoors Fri 15-Feb-13 14:22:40

Thinking of you, Stoic.

xx

CelticPromise Fri 15-Feb-13 14:25:32

I haven't read the whole thread, but I just wanted to send some love and wish you strength and peace.

My dearest mum died of cancer last year. Like you, we thought we had a few months but she went downhill vet quickly. At the end I wished it over for her, because I wanted her to be at peace.

My mum was almost beyond speaking by the time we got to be with her at the end, and there were no profound conversations over the two days we were there. I don't regret this but I do regret not having five minutes alone with her just us. We all talked to her- they say hearing is the last thing to go- and sang a bit.
She also had a syringe driver and I don't think she was in pain. Can your mum's medication be increased given the situation? When my mum died it was gentle, and her family were with her.

My DS aged three was there for a lot of the time, and took it all in his stride.

I lost my Gran when I was the age of your older DC. I felt that it was a privilege to be with her and I remember it as a bit of a rite of passage into adulthood, as well as the obvious sadness.

I've been weeping as I write this. It's hard without them. I wish you and your family a peaceful weekend. May you find strength in each other.

StoicButStressed Sat 16-Feb-13 06:58:53

Celtic - I'm so sorry for your losses and for your weeping, but I do feel blessed to have people like you, Alad, Suburb and all else posting on here as it is helping lots. Especially the ones with regard to her actual passing. I agree it will be a release, especially as she is - horrifically - NOT always pain free at the moment. Cannot tell you how desperately I wish that she was in the hospice rather than the 'Care Home With Nursing' she had to go into about 4 weeks ago. The staff are under-resourced for critical patients like her (there are only ever 2 nurses on duty so her PRN pain-relief can take forever given it needs BOTH those nurses to sign it out of CDR and to administer it), and they are not trained specifically for severe palliative care or end of life care.

Finding it harder and harder and am reminded of a lovely poster upthread who said she totally understood that thing of sometimes finding it easier to be almost anywhere than on the threads closest to home. Get that 100%, in some ways it is so much easier to almost act as if this wasn't happening and post as 'normally' would elsewhere on MN (IYKWIM???). Thank you and grateful hugs back to you allthanks.

CelticPromise Sat 16-Feb-13 08:38:19

Gentle hugs to you Stoic.

Your mum's pain must be very distressing for you. If you or another family member feels you can, make a noise about it, complain, make it clear you aren't happy. Being difficult in this kind of situation can get you places, though it's tough to do. Can you contact the hospice for help even if she can't go there? Perhaps they have a community nurse?

I'll be thinking of you.

StoicButStressed Sun 17-Feb-13 13:09:57

Dear all.

I wanted to let all of you lovely people that my Mumma passed away this morning at 8.15. It is the most stunning day here with the bluest sky seen since last Summer and it is a beautiful day for her to pass. Thank you all for your kindnesses, you will never know how much you have helped me.

xxxxx

CelticPromise Sun 17-Feb-13 14:18:52

Dear Stoic, I'm so very sorry.

There's no right or wrong way to get through it, do whatever you need to do. I hope it is helping in some tiny way to know your mum is not in pain any more. Sending some love to you and your family.

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