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[Dandygal76]

Hey Veema, I hope all goes well today and that Nige feels better after getting some treatment. It is good that he is feeling more positive so I hope you had a reasonable nice evening.

It does sound like your work is rewarding and there you was worrying about not being so good at the caring patience and you have a career in it! This disease is hard on the carers as well so never beat yourself up, my mum has her moments of frustration and sometimes a little resentment - especially as dad can be a stubborn one. I sometimes feel bad because I just don't see dad enough or I think I should have done something but it is so so exhausting to be on this 24 hours and I still have respite at home away from the front line.

I think everyone on this forum are doing their best and we all get every angle of the emotions around it all. Much love to you both. x

[Guest]

All the very best for today both of you, it is at least a start on making Nige more comfortable. I will be thinking of you both M xx

[Veema]

We are home...6.8 litres of fluid lighter!!!!

4 litres came out in less than an hour and then it slowed down. We were home for about 5pm and he is feeling very, very weak, but the difference in his body is very noticeable...I don't know if you can post photos or not, but he looks to be more comfortable now. There was a man in at the same time who has 8-10 litres drained off every 10 days!

It's so boring sat in hospital, I went through a huge bar of dairy milk wholenut, a sandwich, bag of crisps and several cups of tea and biscuits that the nurses kept bringing...they were really lovely, but I now feel huge!

Project bedroom will have to be at the weekend now. Nige has two lads from his first marriage and they are coming to help clear everything out on Saturday and my Dad is coming to help paint on Sunday, carpet down on Monday and bed due on Tuesday.

[Veema]

Dandygal76 wrote:

>

> It does sound like your work is rewarding and there you was worrying about

> not being so good at the caring patience and you have a career in it!

Ha ha...I didn't want to look after this little girl, lovely as she is, because I don't have the patience, but school is totally underfunded and we've had to cut back, so didn't really have a choice. It's not as bad as I expected it to be, but I'm used to teaching maths to lower ability children, so it's a big difference. I do still get to teach the maths, just not as much.

[sandraW]

Lets hope Nige feels better soon, now he's rid of that lot, nearly 7 litres that's amazing.

I am sure you needed the chocolate, crips and biscuits! you couldn't risk your blood sugar dropping now could you! I used to take my knitting, frilly scarves, sold lots for PC too, it kept my hands busy and was always a conversation opener with other patients and their friends and family night sandrax xx

[Proud Wife]

How's Nige this morning V?

How could you have eaten a whole bar of dairymilk wholenut. You should have eaten TWO at least.

Thinking of you xxx

[Veema]

He's been very weary today, but they said he would be.

He's not really eaten much more either, but I'll see how he goes over the weekend...he's got about 1300 calories in today with scandishakes and procal powders, which isn't too bad. I've told him he should have had some wholenut as 3 pieces was 80 calories!

He's also become very clingy...didn't want me to go to work and has been constantly wanting me to hug him since I've got home, which is most unusual...I went into work because I think it's important that I go in whilst I can, then when I can't, they'll know I'm not swinging the lead...I don't think they would anyway, the head is fantastic and so supportive, but it makes me feel better.

I had a check up on my newly lasered eyes today...I've got better than 20/20 vision in my right eye and not quite 20/20 in my left, but better than driving standard so a pleasing result really.

Hope everyone has a nice weekend

Vx

[Veema]

Having a tough weekend. There's been no improvement at all in his comfort levels, still can't sleep and his tummy looks like a big hard football again...can it fill up that quickly? How do you know when you are coming to an end of life scenario? He looks like death warmed up, no flesh on his body at all and yesterday he started with some mild delirium...not knowing where he is, talking rubbish etc. It's all very worrying. The hospice nurse is coming to tomorrow, so I'll ask her about it.

I'm having episodes of just sitting crying...I can't seem to stop and it's so unlike me, but I just feel so sad. It's not quiet crying either...it's big, wrenching sobs like I'm trying to get rid of the ache inside, but it's not going anywhere.

I don't really want to know timescales...but then I do...I need to know if I should be at home with him...I think I should be really...but then this could just be a blip...but I think I'm kidding myself thinking that...or maybe I'm being defeatist by not thinking that? I just want someone to tell me what to do.

I've just cut his hair...I used to moan about having to cut his hair...couldn't believe he wouldn't pay a fiver at the barbers...so then the tears came again thinking how mean I was and how I wish I could cut his hair for ever. Yesterday I was sat glossing the skirting boards in the room his bed is going in...there were little bits of pale green paint and bits of pink paint still visible from previous decorating...we decorated it pale green when I was pregnant and didn't know if we were having a boy or a girl...it was painted pale pink when Phoebe moved out of her cot into her pink castle bed...all lovely memories of happier times...oh to be back then.

Part of me just wants it all to be over (so selfish), but part of me just wants to hold onto him and never let go.

So sorry I'm being maudlin...must be PMT.

Vx

[Justamo]

Poor Veema.I know the feeling that 'part of me wants it to be over...' I remember when my mother was dying of lung cancer I used to drive (about 2 hours) to the hospital each day and if she had rallied or improved slightly I found it hard to deal with. Of course I didn't want her to die, but I had become accustomed to the downward slope and the inevitable result and the occasional 'ups' knocked me off balance.

Peter and I have always been quite independent of each other during our 40 year marriage, we've each done our own thing, and we have seldom compromised. We holidayed apart until just a few years ago. But I think I put in a previous post how we had both become rather clingy. I think it's because we are in a new and hostile world which is dominated by PC and we're trying to steer our way through it. We've done cancer (mine) and heart surgeries (both of us) before but PC is a whole new ball game.

You are not maudlin, and I doubt it's PMT, but you are having a bad day and you're allowed to. It would be trite and silly to say 'cheer up' and I wouldn't insult you by doing so, but slowly your natural good sense will bring you up to a better frame of mind and you'll cope with it.

Listen to me, a PC virgin, dishing out support to somebody else. But I mean it V, you were almost one of the first to jump to my aid and I'll take a bet that there will be at least 5 other posts along with this one sending love and prayers and virtual hot chocolate to you.

Take care of yourself my love, and nobody can tell you if you need to be home with him. If YOU think you want to be with him, then just do it.

Mo XX

[Proud Wife]

Hello V

I'm afraid there's just no answer as to when life may be coming to an end. Someone could be at death's door, stay there for a while and rally or they could go very quickly like my hubby did. I know exactly what you mean by wanting it over.....thats ONLY because you love Nige and can't stand to see him suffer the way he is. And then of course, you never want it to be over because you want your loved one no matter what.

I agree with Mo, only you can decide if you need to be a home now. If you feel in your heart of hearts the end is near and you'd never forgive yourself if you weren't there, then you will probably get your answer. I spent 8 days at the hospital and although it was exhausting, difficult, exceptionally emotional, sad, etc, I don't regret one single second because my darling hubby passed with the 2 loves of his life by his side, my son and I and I know deep down that I could not have done a single thing more. Having no regrets is so so important.

Having said all this, I was told at the hospital when I didn't want to go to sleep that someones your loved one will wait for you to leave the room - even if just to go to the loo - and will pass if they don't want you to witness it. Just go with your heart and what you feel is right for you and your family. There is no right or wrong here. Just do your best as you have throughout this ordeal.

Of course you are sitting there sobbing and I am too, for you, for Nige, for me, my son and of course my hubby and everyone else who has been affected by this vile, vile disease. Let it out sweetheart, you will only feel worse if you don't. Come on here whenever you need to, I will keep popping back to see if there's something moral cyber support I can offer you.

Lots of love and hugs

PW xx

[Guest]

Darling Veema,

It's a tough time, the crying is absolutely ok. Whenever you like you just let it come. Like me you are a toughie and don't like others to see you buckle but you are at home and you can do what you like. Actually you can also do it in public if it helps and I've had a couple of episodes in shops that I am not proud of but hey ho!

For what it's worth I think you should spend as much time with Nige as you both want and can afford. Sadly PC is a life limiting disease that has no cure as yet so if he wants you to be with him because he feels so ill or is frightened and you can bear it, then yes, be with him! It doesn't matter if its a blip or not, time is limited be it a day, a week a month, a year or five years, its still limited so make the most of it. It's not for everyone, I know that so if you need to be away from it then perhaps you can do something more flexible?

Hold on to the memories and talk with Nige about them. Louis and I used to cry together but we also used to laugh and enjoy the memories. I've been throwing old paperwork out today and find he has kept every bit of paper on the children, cars, university applications, school reports, begging letters the lot, even the notices for having the banns read when they got married. It's a sad business.

Nige may have an infection which is causing the delirium and making him feel bad so I think you should call the GP or maybe speak to one of the nurses on here if you are not sure.

I know it's not much help but I think of you all the time and wish and pray that you both get some respite. Much love M xx

[Veema]

The hospice nurse has just been. I've now been signed off work for the foreseeable future, which doesn't sound like it's going to be long...she's given him a month at the outset. He doesn't know this, he doesn't want to know. The 'just in case' crisis pack is coming tomorrow along with the DNAR paperwork. He's now got morphine for his 'discomfort'.

I went into work this morning and cried on the headteacher, who told me to go straight home, I cried on my class teacher and I cried on the IT bloke! I've just been to collect the meds from the chemist and cried in there too! I really need to get a grip...the laser eye people said I might have dry eyes following my surgery...well they were wrong!

I need to tell the kids tonight. Nige has two lads from his first marriage who are in their twenties...such lovely lads (you wouldn't have heard me saying that when they were teens), I think they know it's coming...in fact one of them said at the weekend that they just wished he'd go as they hated seeing him so ill. But Phoebe...she's a different matter...I have no idea how she will react. It really couldn't come at a worse time for her...she's just gone into year 6, which is a tough year, we are looking at high schools over the next couple of weeks and getting that application in and she's got her SATS next May...add to that all the hormones that are starting to rage around her little body...its a recipe for a meltdown. And the poor dog hasn't got a clue what's going on!

So...even though I always knew this was coming, I never really imagined we'd get here. There's a good chance that this time next month it will all be over.

Vx

[Dandygal76]

Hi V

I am so sorry you have received such devastating news. I would be crying to everyone in your shoes as well.. what the hell else are you supposed to do?? It is a terrible time for it to happen to your daughter as well, what a bless of an age to lose her daddy. There is no easy way to do these things and I think you just have to take a deep breath, bite the bullet and then you will know what fallout you are dealing with. Could the school not get her some counselling as well? My son's school got some in for him and it really helped him to have an independent outlet as I think with my son he did not want to add to meltdown and kept it all in.

I hate teenagers as well... at least you are through that bit with the boys. I also know what you mean, I never think the time will come with dad and it all feels so surreal after a while doesn't it and then with every story we hear... bam and then it turns.

I hope dearly that you get the support to keep Nige pain free and as comfortable as possible.

Much love to all of your family. You are a strong lady and you will steer your family through this.. She lions as Marmalade has said!

xxx

[Proud Wife]

Hello V

I am so sorry sweetheart. Even if you expected that type of news, it hits you like a sledgehammer. Try not to think more than one day ahead. I am pleased Nige doesn't know, he doesn't need to know in my opinion and thank goodness you've now been signed off. Priority is keeping Nige comfortable and making sure you and Phoebe are okay - well as okay as you can be in these circumstances. My heart goes out to you all. I hope that the morphine will help Nige and whatever time you have left (no-one knows how long) try to make the best of it if you can.

Don't forget, we are all here for you xx

[Guest]

Darling Veema,

No one can make this any easier. You just cry my love and don't be too sure that Nige isn't aware. I think people always know but don't always want to talk about it. I was very lucky that Louis and I could cry together. It does stabilise and because they are still with us it seems everyone was wrong, then the next wave hits, that's why it's called the roller coaster.

I was just a bit younger than your daughter when my dad died and it was awful but it always is. I would say let her share the grief and have as much time and involvement as she wants. Exams are important but they can be taken later if she is not up to it, the door doesn't close on education but her time with dad is limited.

I am so very sorry V because you have been so brave and strong. I know you don't want to be like this but it is a normal reaction, you are not cracking up, you are just unbelievably sad and perhaps angry that you have to deal with this. As you know from our journey, no one can say how long it will be. I just hope you can find some calm so that however long it is, it can be the very best it can be for you all. M xx

Edited September 20, 2016 by Anonymous

[Justamo]

V, you are a strong woman. Crying is not a sign of weakness, it is simply a way of dealing with stress, and God knows your stress must be overwhelming. You have done every single thing you can for Nige and Phoebe so care for yourself as well. Give Phoebe a cuddle, try to find the words to tell her how much her daddy loves her, spend time with Nige, and - if you can - take a relaxing bath.

Sit with him for as long as you can, doze if you want to and cry if you want to.

Every single person on this forum is with you in spirit. I am shortly going out to my special spot in the garden where a rosary hangs on a nail in the fence and I'll pray that this dreadful time will at least be peaceful.

Take care if yourself my love.

Mo

[Veema]

I've told her...she cried, said that she loves him and doesn't want him to die and why is this happening to her and that nothing will be the same again...I told her I felt exactly the same.

I made a huge point of it being okay to feel upset and cry, because it is so very sad...I've told her that she hasn't to keep things bottled up for fear of upsetting me, that I'm upset anyway and if she feels like a cry, have a cry or if she wants to talk about anything she can...to any of us.

I've also told her that although it will be horrible without him, that we will be okay...we won't have to move house and nothing like that will change and we've got a lovely big supportive family.

Then her friends came and called for her and she went out to play.

Thank you for all your lovely words. I feel so lucky that we've had 2 years since he was diagnosed...and they haven't been a bad 2 years either. Lots of people don't get that.

Vx

[Dandygal76]

Children are amazingly resilient aren't they. A close friend of mine has 4 kids who were from toddler to 10 and their mum broke her leg and then got gangrene and died. I was in awe of how they dealt with it. Life is full of wonders at that age and sadness only has a limited space. I think the worst moment for my friend was when he went to pick up the 7 year old boy from school one day and he came running out and then stopped dead in his tracks and looked disappointed to not see his mum standing there and then said I wish my mum was still here. The point is not a negative one, they just get on with life and then they think about it. It doesn't consume their day like it does with us as adults and they naturally get on with life. My cousin also lost her mum at a very similar age to phoebe and it was the same, life carried on.. it was sad but didn't consume everything. I hope that makes sense... I am hoping to be reassuring. I think everything you said to her tonight was absolutely spot on you amazing lady. x

[Justamo]

Veema, I am astonished, but somehow not surprised, that in the midst of your own personal misery you have the compassion and kindness to post on poor Budgie's thread.

Lucky Phoebe to have such a truly lovely person for her Mum.

Have a peaceful night, we are all thinking of you.

Mo

[Guest]

Well done V perfect. You did a great job and it was great because you were honest and spoke from the heart.

I hope you had a little rest. M xx

[Veema]

Well the crying seems to have abated for now.

Bed has arrived and he's asleep in it now whilst I'm sat on the little sofa bed just looking at him. His boys have been tonight whilst Phoebe and I have been to look at a high school...they've had a talk with him and a cry...they need looking after every bit as much as Phoebe does. I've told them that if their mum wants to come and see him, she can...there's never been any animosity between me and her (she decided she was a lesbian), so I'm happy for her to come. I have noticed that all and sundry are crawling out of the woodwork wanting to come and see him though, people who haven't bothered for the past 2 years...they can get lost, he needs to spend this precious time with those who truly care about him.

I've been looking at funeral directors today...no idea how I'm going to choose one and coffins are a minefield! I have decided that when I die I don't want a funeral...it's a lot of faff...I'll just have a direct cremation...it was good enough for David Bowie!

I'm going to bed alone tonight...it's something I'm going to have to get used to, but I can always open up the sofa bed if I want to stay in here with him.

Oh...and a district nurse turned up about half an hour ago...no idea why...I hope they aren't going to be making an appearance every night!

Peaceful dreams everyone.

Vx

[Justamo]

Hello V

I've been checking this thread every half hour this evening just to see if there was any news.

I'm glad Nige's sons have been to see him. I know what you mean about all sorts of people crawling out from under their stones, and as you say - if they haven't been near Nige all the time he was ill then there's very little point in their circling around now. He only needs the people who truly love him around him. And you don't have to put up with these people either. Avoid them if you can because at an emotional time like this it's easy to take out your hurt on the all and sundry, especially if you feel a bit slighted by them in the first place.

Just focus on Nige and Phoebe. You are doing so well and we are all thinking about you. Actually, I was thinking about you at 3.30 this morning! And I checked the forum then just in case you were awake and 'talking' to us.

Good night and God bless,

Love

Mo

[Guest]

Hi V,

Just checking in. We are all walking with you and Nige on this journey, you can't see us but we are here. I used to lie with Louis sometimes, bit of a squeeze but we both got comfort from the contact. Thinking of you all and wishing you a peaceful night m xx

[Veema]

Justamo wrote:

> Hello V

> I've been checking this thread every half hour this evening just to see if

> there was any news.

>

> I'm glad Nige's sons have been to see him. I know what you mean about all

> sorts of people crawling out from under their stones, and as you say - if

> they haven't been near Nige all the time he was ill then there's very

> little point in their circling around now. He only needs the people who

> truly love him around him. And you don't have to put up with these people

> either. Avoid them if you can because at an emotional time like this it's

> easy to take out your hurt on the all and sundry, especially if you feel a

> bit slighted by them in the first place.

>

> Just focus on Nige and Phoebe. You are doing so well and we are all

> thinking about you. Actually, I was thinking about you at 3.30 this

> morning! And I checked the forum then just in case you were awake and

> 'talking' to us.

>

> Good night and God bless,

> Love

> Mo

I was up and about at 3.30 this morning...he was calling out and when I went in, he had no idea who I was...I think he was dreaming, seems fine this morning.

He's actually feeling comfy in the bed, bet he wishes now that he hadn't resisted it for so long. I've given up trying to shove food into him, but all he managed to get down yesterday was a scandishake and it makes me feel like I'm failing him...I know deep down that I'm not. Anyway, he's asked for a weetabix this morning.

I found out yesterday that one of my close friends at school has recently found out she's got breast cancer...I'm gutted for her and sad that she thought she couldn't tell me, although I know why she hasn't. I know I've got a lot on my own plate, but doesn't mean I can't support her in a virtual, sending positive vibes sort of way. Anyway, she's having a lumpectomy today, so I'm thinking about her too.

I've no idea where the day went yesterday, what with people calling and the phone is constantly ringing! I had planned on doing the ironing whilst watching a film, but this morning the child has gone to school in yesterday's t-shirt!

Off to feed the dog now...she's sat almost on the keyboard looking intently at me which means she's hungry (although she has just pinched a piece of my toast).

Vx

[sandraW]

Hi V,

Glad to hear that Nige likes his bed and is comfy in it.

Its all just so sad for you all, but how wonderful that you can all come together as a family even to the extent of boys mum being included too.

It must be so hard for Phoebe bless her, wondering why all this is happening to her, we had granddaughters who loved there granddad dearly but were not in the mist of it all like Phoebe is.

I am sending you all love and strength for the journey take care sandrax xx