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Dealing with Mum's diagnosis...


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CurlyLittleMiss

Hi all,


Mum has been extremely up and down this week. The morphine is helping with the pain but the hallucinations are there now instead. She knows she's talkin nonsense so then gets frustrated and keeps apologising which then upsets us because she's upset.


She hasn't had such a great day today, dad ended up taking the day off as she was sick while getting dressed this morning and didn't want to leave as she'd scared herself. She's finding it hard to eat because she's feeling queasy so much, so we sre trying to encourage her to at least keep drinking and hopefully she'll start to be able to face food soon again.


Her boss came to see her yesterday (she was of course on her best behaviour!) and a couple of her brothers came which wore her out but did certainly cheer her up, especially after hearing that a former colleague had passed away from breast cancer at the weekend.


I think for all of us it's just been one of those weeks where everything's just been a bit crap!

CLM x

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CLM. Snap, know that feeling in terms of one of those weeks!


I am really sorry to hear that your mum's been up and down. As everyone says, it's such a physical and emotional rollercoaster. You are doing amazing but please don't forget to take care of yourself too.


Lots of love

PW xxx

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CurlyLittleMiss

We've been told now that mum has moved on to the next stage. Even though we'd already come to that conclusion, to hear it from someone in a professional capacity was still hard to take in.


Mum is in bed most of the day and takes her a long time to do anything, which she finds frustrating. Dad said it took nearly an hour to get her ready for and in to bed last night. She also thinks he's lying to her which upsets him. He knows she doesn't mean it, but it is still hard to take. I can't imagine what it must be like to watch the woman you've loved for 40 years fade away in front of you like this, it's hard enough dealing with it myself.


It's just so frustrating knowing there's nothing I can do. Sadly at times like this, it's when you see who your real friends are. The vast majority of mine are falling over themselves to help me and my family, while with others, I wonder sometimes if I've even told them. I know some people find it difficult to talk about and I don't want mum's illness to be the only topic of conversation, but I'm starting to see those who are there for me and those who are just there for themselves. I had a text (more of an essay!) from a friend yesterday who had been through something very similar with her dad last year. She just has a way of knowing what is going on in my head and putting it into words that make so much sense and don't leave me feeling guilty.


Tomorrow the hospice nurse and social worker/counsellor are coming to see mum and dad. There was some discussion today when the nurse phoned about getting dad some extra help with carers etc. He's very proud and told me he took his wedding vows seriously and intends to look after mum as much as he can. I can understand that point of view, but I also need him to look after himself too. I did threaten to move back home for a bit and soon said he'd consider the extra help available!

CLM x

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Hi CLM,


Sorry to read about your Mum. It is nice to read just how much your Dad loves her though, which makes it all the more sad. I hope he does accept some extra help, even if it is just bits round the house. He sounds a very proud man though, so I can understand his thinking.


As wit regards to your friends. You really do know who they are at times like this, sadly it doesn't always tend to be the ones you expect to care. When my Dad was diagnosed, and since he has passed away, my mother has been absolutely terrible towards me. She has been the most unsupportive person I could possibly imagine. I also had 2 colleagues at a previous job who I thought I was close to. One of them wanted me to paint her nails just after I poured my heart out to her, the other just told me she didn't want to hear it.


I know these kind of people can make you angry and bitter, but they aren't worth bothering about. All that matters right now is your Mum. I really feel for you and I wish I could take it all away.


We are all your genuine caring friends here.


Leila xx

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Hi CLM,

Sorry to hear the news about your Mum, and I understand fully where your Dad is coming from, he just wants to do all he can for her, as he loves her so much.

I also understand about the friends thing, the trouble is unless you have been through something like this in you own life its hard to understand and know what to say, so people don't say or do anything instead of just being honest and saying I'm sorry I just don't know how to help you will you please tell me what I can do.Its lovely however to hear that you have one friend that know just how to help you, through these difficult times.

Don't feel guilty about wanting you mum to be at peace and not suffer any more, its a perfectly natural feeling, and at odds with wanting her to stay, its so hard seeing the ones we love go through this terrible journey.

Sending a cyber ((Hug)) love and strength to you all and as Leila rightly says we are here when you need us sandrax xx

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CurlyLittleMiss

I do understand it must be hard for people who haven't been through this to know what to say, and as I said I don't want it to be all I talk about. But I've just come to see how wrapped up in her own life one of my friends is. I'm one of those people who will give others second, third, million chances, but I think I've just had enough now. I don't expect people to change their lives for me, but a little understanding that my parents come first for now would be nice. Hey ho. I do have good friends who are there for me no matter how much of a grot bag I may have been to them and I know I can rant and vent on here for as long as I need.


Thank you all for all your support.

CLM x

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CLM,


So sorry you are struggling with these ignorant people, but that's all they are, ignorant. They aren't worth your stress.


At least you have one good friend that can be there you, she sounds priceless, and good friends are.


Leila xx

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Dandygal76

CLM, I have also encountered the same and you are right... people that were needy and selfish seem to be exacerbated now. You should not have to be worried about other people right now. It is your turn to be the one that needs support and anyone that detracts from that right now is taking emotional time you do not have. Don't feel bad about taking that time, your true friends understand. x

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Proud Wife

CLM you can rant on here until your heart's content. We too are quickly realising who are true friends are.


A little understanding is not a lot to ask for and of course your parents come first, it's just so sad we are all in the same boat.


Take care of yourself too xxx

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CurlyLittleMiss

Unfortunately, we are now preparing ourselves for the worst.


Mum has deteriorated rapidly in the last week and sadly she is getting worse by the day. Thankfully, she isn't in any pain and her morphine dosage has actually been reduced, but she is asleep most of the day and can very incoherent when she is awake.


The district nursing team are coming in again daily to assist dad with her personal care, as the social worker from the hospice said he needed to look after himself and spend 'quality' time with mum, rather than doing these jobs which were making her grumpy with him. As stubborn as he is, he is realising quite how much it took out of him trying to wash her daily etc. She's also not accusing him of lying to her quite so much now that he's taken that step back.


We are also starting all the phone calls to relatives and friends who were due to come in the next few days and even those who weren't, just to let them know the situation and giving them the option of remembering how she was when they last saw her when she was stronger. The vast majority still want to come as they want to support us as much as seeing mum. Today dad's sister and her family came up. Mum wasn't really 'with it' when they arrived, but was able to give them all a proper hug from her bed when they left. It was heart-breaking to watch, but it was as if she was aware that she probably wouldn't see them again.


I had to go and speak to my granddad this morning and start to prepare him. Having been in denial (understandably) at the beginning of this, he has been much more accepting of what is going on. While he only lives around the corner from Mum & Dad, his health is suffering too and relies on one of us to drive him round here to see her. Having to explain to your 87 year old granddad that his daughter is slowly fading away is one of the hardest things I've ever had to do. Again though, Mum sensed he was here and had some energy left to be awake for part of his visit.


Dad and I had a good chat last night about everything. Everyone has always said I needed to tell Mum what I needed/wanted her to hear, but also my Dad needs to hear that too. Mum told me a while back that if roles had been reversed, she doesn't think she would have been able to cope the way he has and would have needed help from the start. I wanted him to know, that if it comes to it and Mum does need to go in to the hospice, he has done everything he possibly could for her. A few tears were had, but he needs to know he has absolutely no need to feel guilty about anything.


As I'm sat here writing this, both Mum and Dad are asleep and I have the sounds of them both snoring accompanying the clicking of the laptop keyboard-some things never change!


CLM x

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Sorry to here this and I can only imagine how difficult it was to tell your granddad what was happening. Both you and your dad are coping so well. Sending you warm thoughts. Catherine

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Oh CLM, I am sorry to hear that your mum is deteriorating, but you are doing a such a marvellous job, your Mum and Dad must be so proud of you.

I wonder if you are a bit like me, your way of coping is being in charge and getting things sorted. Lovely that you spoke to your Dad I agree he needs to know he has done all he can do, tears hurt no one in fact they can help. Your poor granddad too, loosing his daughter, you really are one amazing lady, but please don't forget about you

I hope your mum's journey continues to be pain free and she just drifts away surrounded by all your love, take care and be sure I am thinking of you all and sending love and strength sandrax xx

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PCUK Nurse Jeni

Hi CLM,


Thank you for sharing about your mum on the forum. Its not easy at times to open up about the person you love, and I know that you have found support in your "forum family".


Its really positive to hear that your mum is not in any pain and is able to "sense" peoples presence with her, and show her affection to them as they leave. As humans, we have remarkable resilience when we need it, and you are obviously a great example of this.


I actually really loved what you wrote about your dad - and you are absolutely right, he needs to hear the encouragement as well, and know that he has done all that he could do. And absolutely agree with the social worker about him spending "quality time" with her, as her husband. Most folk want to care for their loved ones, but sometimes, taking a step back to be the husband/wife/son/daughter etc..., is the best thing, and less exhausting also. As Sandra says, tears are good. And I am sure that your dad appreciated your reassurance.


Take care CLM,


Jeni.

Pancreatic Cancer Specialist Nurse,

Support Team.

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Proud Wife

I am so sorry to hear about your mum CLM. When she rejected treatment, I was so hoping that your mum would be well enough to have some real good quality time with the family, before this vile disease took hold but it seems to have done so rapidly. All I can say is I am thinking of you.


Take care xx

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CurlyLittleMiss

Mum is still fighting, she's just told me off for 'nagging' her to drink something!


We have agreed that it is probably now the time to start thinking about hospice care, so dad and I are going to look around our local hospice in a while. I've heard nothing but good things about the place, but we were advised to go so that if mum does end up there, we aren't trying to take in all the surroundings at the same time as getting her settled.


At least the sun is shining and she can feel the warmth of it coming through the patio doors by her bed.

CLM x

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Dandygal76

Oh CLM, the sun shining is good isn't it. Life has made us appreciate these things so much more. I hope you get your mum into the hospice and that she is peaceful and not in pain. Thinking of you. x

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CLM hope the visit to the hospice went well, ours is beautiful with lovely gardens, and the staff are amazing, I hope you were happy with it, and you can get mum there soon.

Had to smile when you said she said to stop nagging her, good that she's still keeping you on your toes.love sandrax xx

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Sueoliver

Hi CLM,

I hope you get your Mum into hospice they are truly wonderful places. My Mum told me I was obsessed by creon and told me to stop going on!

Thinking of you at this difficult time,

Love Sue xxx

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CurlyLittleMiss

Afternoon all. Well everything moved rather quickly yesterday! Dad and I hadn't even left to go to look around before they phoned to say they had a bed available today. We are currently sitting in her room with a cup of tea while she's snoozing away.


It's all very peaceful here and the staff are lovely. We've already had the dr in and two or three nurses have been in to see her. Mum looks far more comfortable here than she did in the bed at home. We were joking just now saying she must be able to tune out our voices as she doesn't stir when we talk but her eyes shoot open when it's a new voice!


CLM x

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CLM, so pleased to hear this. I'm sure your Mum is very comfortable. Hospices care for everyone involved so you will all feel peaceful. Catherine

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Proud Wife

Hello CLM


That's pretty much perfect as perfect can be when in this position. Please keep us posted.


Thinking of you and your very brave Mum xxx

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