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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Hello everyone...

Oks, well, I've had some bad news and thought I would post on here for advice on alternative therapies.

I've had a look through the existing threads (nice search system Malcolm!!) but didn't find what I was looking for, so I hope this is ok.


So then...

Just over a month ago my mother turned yellow.
It was two days before my parents were due to go on holiday, and instead she ended up in hospital.

They discovered it was a blockage near her bile duct, and after sticking a camera down her throat, found out she had a tumour on her pancreas.

She was eventually sent home for a few weeks to recuperate, then brought back in for an operation last Friday.

We discovered then that the tumour on her pancreas is too big - 6 cms - to operate on, and parts of it have spread to nearby glands.

The prognosis isn't good. They've told her between 6 months and a year, but any reseach I've done shows people with pancreatic cancer lasting between 4 - 6 months.

Our family is coping well, considering, so far.

(Personally, I feel like I'm constantly going to cry.
I try not to think about her leaving us as much as possible. My mother is the strongest person in the world... She is kind and lovely and despite having pissed me off often, has done a splendid job and has had a splendid life (she's travelled all over the place - took a boat to Australia from Ireland 40 years ago to work as a nanny on a cattle ranch!! She came home, by boat, via NZ, Fiji and the Panama Canal - in a time when tourism wasn't Lonely Planet travel-by-numbers).

At the minute, I'm coping. I'm finding myself running about my parent's house 'doing stuff' for them while also trying to keep a performance business afloat. That's been a barrel of laughs in itself... anyone setting up a business in the arts - prepare yourself now for the bitchiness, competition, jealousy and lack of support.

My deepest apologies to m'lovely friends on here if I haven't responded to your PMs or calls recently - thanks BamBam and Fluff x).

Jesus... that was a bitter and twisted rant... humblest apologies for that... redface

Anyways... I have posted this for a reason rolleyes smile

The doctors are still deciding whether mum should have chemo.
None of us are very happy with that idea... don't want her last few months to be spent throwing up.

She's got a very strong Christian faith, which keeps her bouncing through each day (lol, and she keeps emotionally blackmailing me to convert!!! Lol... I've told her it won't happen, but thanks anyway smile )

But I want info on alternative therapies... things that might reduce it, or just prolong her life for a bit. Does anyone here have any advice on where I could look?

I know not to accept intershnet advice as gospel, but it's good to get a guideline - or a point in the right direction.

Electro-magnetic therapy? Acupuncture? Organic foods and no tap water?!!

Does anyone here have any helpful hints?

Thanks so much for your time... and go home tonight and give your parents a hug... they could be gone much sooner than you think.

Love and hugs to you alll
Clare xx


Getting to the other side smile

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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh

Total posts: 4145
Posted:I know it's hard to see any up-side in all this, but: Your mum has made it her goal to be around for that 30th anniversary, and she was. She may have had to go to hospital, but she's clung on so far when other people would've given up already. She's a kick-arse strong woman, and I tip my juggling hat to her. hug

"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:ubbcrying

Thanks so much everyone...

Mech... Lol, what can I say dude... Mime's used to unnerve me, until I met Johnny Murphy from Dublin - he rocks... smile


Ok.

This is all quite awful, basically.

She's in the cancer ward in hospital, and we're trying to figure out what to do.

She can barely keep her eyes open, hasn't the energy to talk, and is uncomfortable (fortunately, not in pain).

She had an X-Ray this morning, which showed the tumour in her lungs, liver and some other places... her blood results are all over the place.

The drip that had been fitted started bleeding, and they couldn't stop it, so she has a huge bandage on her arm. The doctors will have to deal with that tomorrow.

Dad and I sat with her all day. It was fine... just talking nonsense, keeping in good spirits, and dealing with it.

The hospice nurse will come in tomorrow to help us decide the best course.

We could take her home, as planned, but it will be incredibly difficult to get her to the toilet and back (practicalities are important). Also, if she starts bleeding again, there's nothing we can do. But, she had originally wanted to go at home.

Alternatively, we can go to the Hospice, where she will receive all the good care and help... but we don't want to have to leave her... and it may mean she will never come home again.

Balls.

ubbcrying

hug


Getting to the other side smile

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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh

Total posts: 4145
Posted:As for the toilet, I know it's not ideal, but couldn't you get a bedpan or something? Unless of course she'd be ashamed of that in front of her family, which is quite understandable.

I'm sorry I can't be of any more use to you, Clare, I really wish I could give you a proper hug frown Seems so silly making suggestions on a forum on how to best handle toilet problems shrug

Try and find out her opinion, whether it's more important for her to be at home, or have the best possible care. But please keep in mind how much you can or can't do for her - I think you've got a good point with your "what if she starts bleeding again", you might not actually help her by fulfilling her wish.


"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:smile

The toilet thing is just the best example of how difficult practical stuff will be at home...

I know there's nothing anyone can say or do right now, but the messages help and it's good to know people are thinking of you

hug


Getting to the other side smile

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TheBovrilMonkey
SILVER Member since Sep 2001

TheBovrilMonkey

Liquid Cow
Location: High Wycombe, England

Total posts: 2629
Posted:hug - I'll replace that with a proper one next time I see you.

But there's no sense crying over every mistake. You just keep on trying till you run out of cake.

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jo_rhymes
SILVER Member since Apr 2005

jo_rhymes

Momma Bear
Location: Telford, Shrops

Total posts: 4525
Posted:frown

hug

I don't know which is best either. Home or hospice? home or hospice?

Where would your mum rather be? What does she want to do? Or is she uncertain too?

hug xxx


Hoppers are angels who lift us to our feet when our wings have trouble remembering how to fly.

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newgabe
SILVER Member since Mar 2005

newgabe

what goes around comes around. unless you're into stalls.
Location: Bali

Total posts: 4030
Posted:Home hospice is the best. Proper care at home. But if there is no such outreach service where you are (they are rare) then listen carefully to what your hospice nurse says about what is possible at home and when it might be best to accept their round the clock help. (I worked in hospice for 6 years. Those nurses usually rock) One thing they are usually expert at is keeping people comfortable and dignified, while including family to the max.



One rotten thing about this stage is that whatever you decide, some part of you may later say 'we should have done the other' Cos we often make ourselves guilty rather than have the hell of seeing how powerless we are against the tidal wave. We fret about which sandbag we should have used when the tide is going to wash over all of it.



You are such a precious person to be sharing this time with us. Any decision you make with such love for you mum is the right decision. HUGE hugs and respect to you and your Dad too. And of course, all blessings to your mum for her total comfort...


.....Can't juggle balls but I sure as hell can juggle details....

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georgemc
BRONZE Member since Oct 2006

georgemc

Sitting down facing forward . . .
Location: Christchurch

Total posts: 2387
Posted:ditto Gabe, you have such a neat way of putting things - much better than my blunt "cricket bat to the head" words! hug

And Clare, probably all I have for you is hug hug and more electronic hug, but sure wish I could give you a couple "in person" ones - this just feels sooooo inadequate. frown

Take care of yourself.


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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FireTom


Stargazer


Total posts: 6650
Posted:ubbcrying hug I'm with you, Clare... hug

the best smiles are the ones you lead to wink

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
Posted:hug My heart goes out to you in this hard time babe. Helping loved ones make choices is always hard but it's even harder when you know it might be the last choice you help your mum make. Listen to everything the medical staff tell you, but also listen to what your mother wants. The way you have described her here leads me to believe she will know what is right for her.

Which ever choice is made, remember as long as you all show each other how much love and respect you have for each other, location isn't really all that big a deal. It's people that count not the place.


Feed me Chocolate!!! Feed me NOW!

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newgabe
SILVER Member since Mar 2005

newgabe

what goes around comes around. unless you're into stalls.
Location: Bali

Total posts: 4030
Posted: Written by: Skulduggery


Listen to everything the medical staff tell you, but also listen to what your mother wants.. It's people that count not the place.



Well said Skully! (Thanks for the nice words George. Personally I have always found Skully the word queen!)
I just differ a tiny bit.. location can matter; eg a hospital/emergency room, that is not designed for privacy, dignity and family. That is one disadvantage for people who choose to be at home at this stage, but don't have the support to go through the sometimes difficult situations that can arise. Sometimes family panic, call the ambulance etc and end up in weird places that are it hard to be. If people choose to look after someone at home, to the end, they have to well supported to know what is 'normal', and to stay there, even as their loved one passes. And know what to do after. This sort of stuff hospice nurses really know about. I am a huge advocate of home care... and of picking nurses brains!

Clare, I will write you a PM with some things it might be useful to ask...
hug


.....Can't juggle balls but I sure as hell can juggle details....

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mech
BRONZE Member since Jun 2003

mech

Carpal \'Tunnel
Location: "In your ear"

Total posts: 6207
Posted:its coming clare, and you know what is coming.

you know you will come through it.

dont be scared, or afraid.

its natural, and you are dealing iwth it


Step (el-nombrie)

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Durbs
BRONZE Member since Sep 2001

Durbs

Classically British
Location: Epsom, Surrey, England

Total posts: 5688
Posted:frown hug

Thinking of you gorgeous lady.
You're doing grand hug


Burner of Toast
Spinner of poi
Slacker of enormous magnitude

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UCOF
SILVER Member since Apr 2002

UCOF

Carpal \'Tunnel


Total posts: 15414
Posted:ditto



hug hug2 hug


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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Thanks everyone hug

Damn, I wish those hugs weren't electronic smile

Colin (my brother) is flying home today.

Haven't heard yet how mum did overnight... Dad seems to be ok though.

I have to do some work stuff before hospital. Then I have to go to the newspaper tonight to make sure I can pay my rent frown

Y'know, part of me feels seperate from my body... watching these posts go up, my brother coming home and mum in hospital, and it says 'what's going on, what's the fuss for?'

Part of me still hasn't accepted this is happening frown


Getting to the other side smile

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The Tea Fairy
SILVER Member since Jul 2004

The Tea Fairy

old hand
Location: Behind you...

Total posts: 853
Posted:hug

I agree with newgabe completely, hospice at home care is fantastic if you have a service available (my mum is a home nurse!). Don't be put off too much by preconceptions of Hospices either (I worked in one for 6 months too), they should offer excellent family support, care and dignity. It's a very different approach to hospital care.

I think it's quite important your mum has a say in the decision, as far as possible, but I guess it comes down to what you feel is best for all of you. Most people, given the choice, would want to die at home, but in reality the situation can make this really difficult sometimes. With Hospice care, the staff and nurses will be able to keep control of any situation that comes up as a result of your mum's illness in a way you and your dad might not be able to at home on your own.

hug sorry for jumping in here with advice at this point, I've been quietly folllowing this thread for a while now. My thoughts and good wishes are with you. hug


Idolized by Aurinoko

Take me disappearing through the smoke rings of my mind....

Bob Dylan

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted: Written by: The Tea Fairy


Most people, given the choice, would want to die at home, but in reality the situation can make this really difficult sometimes. With Hospice care, the staff and nurses will be able to keep control of any situation that comes up as a result of your mum's illness in a way you and your dad might not be able to at home on your own.




This is exactly what we're thinking just now.

Will let you all know... and thank you so much for your blessings and good wishes

xx


Getting to the other side smile

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FireTom


Stargazer


Total posts: 6650
Posted:... which is why I keep very quiet all the time, Clare. I'm lurking into this thread and my heart is crying with you - but I can't find the right words... frown



I wish there was one word, that would express what I am feeling, one word I could send out and you would know.



This one is closest to it: hug I wish I could be there.


the best smiles are the ones you lead to wink

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strugz
BRONZE Member since Mar 2002

strugz

Carpal \'Tunnel
Location: Southampton - Possibly...

Total posts: 3964
Posted: Written by: FireTom


... which is why I keep very quiet all the time, Clare. I'm lurking into this thread and my heart is crying with you - but I can't find the right words... frown





ditto

as Dubs said - you are doing grand and you are one strong and luvely person - staying that way (which i dont believe you know any other way of being) will get you through this smile

hug hug hug


"...We don't stop playing because we get old, we get old because we stop playing......."

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Helen_of_Poi
SILVER Member since Apr 2004

Helen_of_Poi

lapsed spinner
Location: Dublin, Ireland

Total posts: 412
Posted:Hi hon,

Hang in there. hug Don't forget all the advice you got earlier - drink water, eat good food - you need it.

Home or hospice? It's a difficult call. My mother died in the hospital, a decision which we've never regretted. The staff there were great, if she needed transfusions etc (which she did, regularly), they were there, ready. It also means that I don't associate those nightmarish days with my home. Just a personal opinion, and not one that we've ever discussed, but if she had died at home, in her own bed...how could my father ever think of their room as a place of refuge again? A place that feels comfortable for her is important now, but you have to think of the rest of you too.

Every situation is different though, and you might find great comfort in her being at home. Don't stress too much about decisions - these are difficult times, beyond your control, and unfortunately there is little that you can do to make it any better, in a practical physical sense. All you can do is try to stay strong, look after yourself and the rest of your family, and provide as much emotional support for your mum as you can spare.

I'm thinking of you hon, please call if you ever need to.
hug


Helen_of_Poi

EJC Ireland 2006 Organisational Team

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faith enfire
BRONZE Member since Jan 2006

faith enfire

wandering thru the woods of WI
Location: Wisconsin

Total posts: 3556
Posted:It may be different over there but we never regretted bringing our family home when it was near the end. Our line of thought was while hospice provides great care, they are prolonging the inevitable...so we have hospice nurses and bring them home. I really hope that is available for you because it makes your mom comfy and you get to spend time with her
hug


Faith
Nay, whatever comes one hour was sunlit and the most high gods may not make boast of any better thing than to have watched that hour as it passed

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dream
SILVER Member since Jul 2003

dream

currently mending
Location: Bristol

Total posts: 493
Posted:hug

(words fail me)


He who fights with monsters might take care lest he thereby become a monster. And if you gaze long into an abyss, the abyss will gaze back into you.

Nietzsche

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burningoftheclavey
SILVER Member since Jul 2005

burningoftheclavey

lurking like a ninja with no camouflage..
Location: over yonder

Total posts: 926
Posted:reading through this brings back some painful memories, my heart really feels for you clare, but you have such a strong support behind you and youre so brave..i wish there was more i could say to explain but all i can say is hug hug grouphug heart

on spam robots - "Burn the robot! Melt him down, and then we can make lots and lots of money from his shiiiny juices!"

Owned by Brenn smile

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The Tea Fairy
SILVER Member since Jul 2004

The Tea Fairy

old hand
Location: Behind you...

Total posts: 853
Posted:P.S. Even if you decide you don't want to go down the Hospice route, they might still be useful people to talk to about how to deal with things at home (this is what Hospice-at-Home services should essentially do - if you don't have a hospice at home service though, a regular hospice should still be able to give good advice on a number of different levels).

hug


Idolized by Aurinoko

Take me disappearing through the smoke rings of my mind....

Bob Dylan

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Thank you Strugznell smile

We should have a conversation soon, please hug



And thanks m'lovelies... hug2



Am in work now. Had to come in (REALLY didn't feel like it today), cos I need to pay rent.





Ok.... things went bizarrely badly today... and I'm not happy about it.



Finally got to the hospital to find out she had about 10 visitors this afternoon (not including the many doctors and Macmillian nurses).



This when she could hardly even speak to Dad and I, with the exhaustion, yesterday!



There were three of them there when I arrived (they are all my uncles and aunts, her sisters and brothers (and in-laws), but even still).



Dad had gone to pick up my brother from the airport (he flew home today).



I couldn't even speak to her properly, because there were other people there. Every time I said something mum rolled her eyes and told me to keep quiet (ubbcrying). There was no way I could tell the visitors they should leave and let her rest.



I was late leaving the hospital and going to work (mum kept shoo-ing me out - I didn't feel like I could leave with such bad energy, but had to in the end) and it all finished when my aunt actually had the cheek to say 'that's enough now Clare'.



Am quite cross. Ok. More than cross. Quite angry and very frustrated. Almost feel like I'd prefer not to see her if I'm going to be constantly told to shut up and go away. That's worse.



Mum and Dad have decided to do the home care thing. They seem to think there's a few weeks left, whereas the speed of the decline in the last few days had suggested more like a couple of weeks to me.



They're getting a bed, commode and special chair in the front room - it's been ordered and should take a week. There will be Macmillian nurses calling out in the morning and evening to get her ready and clean her.



I had planned to go home, but if my brother is going to be there, I'm not so sure.



My brother and I have never really gotten along, and as it seems I'm going to be pushed out anyways, I don't want to add to the negativity in the house.



I'm sure I'll get over it, but am quite annoyed at being pushed away at all. Trying not to take it personally, but as a few of you know, am finding that quite hard.



Then, to top it all off, my lack of working is finally hitting my bank balance... (or lack of balance smile ).



It'll all be fine in the end... but the journey ain't so good.



xx



PS: Helen... she's getting another transfusion in the hospital today... and tomorrow. It might help her breathing. I imagine, if necessary, the nurses could do that at home?


Getting to the other side smile

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
Posted:hug Sometimes when people are stressed they say utterly the opposite of what they really mean. Maybe all your mother mean was for you to go and do the things she knows you need to do and the only way in her tired state she could think of was to be abrupt with you. Don't take it to heart to much babe hug

Take all the great advice offered and make sure you take care of yourself.

Gabe, you are wise and correct in what you say about there are some places that are not so good to be in at the end. I kind of was meaning the choice between home and hospice, but as you say sometimes people panic at home and...

Clare remember we are here. If you want to rant, vent ,cry, sing, laugh,... whatever you feel the need to do, we are here to listen. I'm just sorry we are not closer to you to do it face to face. hug

Tomorrow the sun will rise and the beauty of the world will go on. We are all just passing through.


Feed me Chocolate!!! Feed me NOW!

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Yep... thanks lady hug



Btw, this thread is really helpful for me at the mo...



It helps get things straight in my head, I can get other opinions from lovely and knowledgable people... and it also means I can ask people to look here when they write or text or phone to see how I am.



The last point might seem a bit callous, but it's so draining telling the same sad story over and over again.



Anyways... just passing through... (with thanks and hugs) smile


Getting to the other side smile

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_Aime_
SILVER Member since Jan 2004

_Aime_

Carpal \'Tunnel
Location: Hastings

Total posts: 4172
Posted:Clare, my love goes to you, your family, and of course your mum hug

Before the commode, and chair (I'm assuming its one of those electronic ones that tilt upwards to help people stand up?) arrive, get somebody either from the hospice or the hospital to show to lift properly.
When she gets home there may be a point where your mum cant move herself without some help, and there wont be a hospice help or nurse around, and the responability will fall on you or your dad. Learning how to do it properly will make it the most comfortable for her and the easiest for you.

I hope I dont sound too patronising, as reading that back sounds like I'm lecturing a bit redface

I work in a nursing home so deal with alot of people with a range of immobility problems, some in the same situation medically as your mum. Its differant with each case, but learning whats best for the person and for you, makes all the differance in making the little things like washing, dressing and going to the toilet so much easier.

If you need any advice please dont hesitate to PM me, and I'll give whatever help I can. I wont start spouting off stuff here as I already think I've sounded too teacher-esque, but - if you feel comfortable with it, please let me know if you want a PM with some info.

Once again, my love goes to you hug


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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:No worries lady smile

All advice muchly appreciated... and feel free to post here, if you wish.

We thought of the lifting thing already... and will probably ask a nurse to show us if she does come home.

Can you think of anything else?

x


Getting to the other side smile

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georgemc
BRONZE Member since Oct 2006

georgemc

Sitting down facing forward . . .
Location: Christchurch

Total posts: 2387
Posted:Clare hug

Another angle on your Mum being abrupt - she's probably been worn out with the extra visitors and just wants to be left alone for a bit. You know she loves you and wouldn't be angry with you.

The relatives thing - it's inevitable (someone told me recently the saying "where there's a will there's a relative"). Remember that you have had the full attention of your Mum and Dad over the last wee while and you've (hopefully) said all the private things you need to have said and you've enjoyed each others company. Now everyone else who wasn't as physically close as you is coming to try and do that too but they will never share the same level of feeling that you and your Mum did. Of course it's going to feel crap because you feel like you "did all the work" and now they're coming in at the last minute and you are relegated to the back of the queue. Clare my girl, it's part of letting go. You have to let her go. But you will always have those special times with her that none of them did to hold in your heart.

My wife went through the exact same thing when her Mum died of cancer (in hospital by the way). At the very end it was Heather that saw her last moment slip away while everyone else was having a seperate conversation/argument. She felt angry at them all naturally, but in the end realised it was only natural and that she alone had had that special last moment with her mum.

Don't worry about the relatives Clare, just try and "be". Be there quietly in the corner if that's the only space available but I'm sure that for your Mum no matter where you are physically, you will always be right there by her side.

As Mech said - it's coming now. But you're ready - I'm sure of it. You just have to play it out. (Touch your nose).

Be calm. Be at Peace. hug hug hug


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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